I’m in Milton, Ontario for the meeting – I’m up early and write to occupy my mind.
When I catch up in the journal, I feel that I’m on top of things and ready to take on the new day.
Meeting was good with some useful info – glad I went but the timing sucked.
Got a phone call from you on Thurs afternoon in the middle of the meeting. I loved to hear your voice – the timing was great!
It didn’t sound like you – the weakness of your voice is exaggerated over the phone. You were worried about me and asked to call. Fran and Juanita were with you and arranged the call. It made my day to talk to you.
On the way home on the plane - I half-watched half a movie on the plane – that’s the first TV I watched since your stroke.
Whether you were brought back to us by, the Divine energy of God via the power of prayer or it was just string of crazy good fortune, I don’t know how we could ever pay back our gratitude. Instead the idea of ‘paying it forward’ comes to mind.
’Pay it Forward’ was a movie we saw when we were in Boston one evening with the children. You and I both cried. It is story of a boy, 12-year-old Trevor, who believed in the goodness of human nature. Like many other kids, he was determined to change the world for the better. Trevor was assigned to come up with some idea that will improve mankind. He decides that if he can do three good deeds for someone and they in turn can "pay it forward" and so forth, positive changes can occur. It’s a very inspiring story with a twist in the end that is very emotional.
I think you would appreciate the gesture of me registering for bone marrow. Not only is a ‘pay it forward’ type of thing to do but Rod Carew’s daughter, Michelle, who died in 1996 at the age of 18 years, was in need of a rare tissue bone marrow type to treat her rare form of leukemia. A donor was never found. I remember at the time you were feeling Rod’s pain and sorrow at not being able to help his child.
The only unfortunate thing is that the registry is for age 17-50 years. So I will only be on the list for a few years. Hopefully, in a few years the idea of a non-related donor will be made obsolete by autogenous stem cell therapy (Replacement of stem cell form yourself.) Although this may not work for some diseases, like cancer. You can find the registry at: http://www.blood.ca/centreapps/internet/uw_v502_mainengine.nsf/page/E_ubmdrPKG-intro?opendocument&CloseMenu
I called the children from the airport and said I would home later tonight and I’ll see them in the morning. Tara sounds happy to hear my voice. Quinn sounds excited. “It’s the 29th today!” I have to think - why is the 29th important? Quinn answers before I can form the question in my head. “It’s only two more days before Halloween!” He explains. Quinn seems to be all right.
When this journey began, I was carried away in the whirlwind of emotion that I never felt before. I was spinning. I didn’t know how to stop except to let the natural laws of the world eventually carried me to a place where I could find my way back home.
Our friends and family were our first responders to our crisis. They held us and cried with us, gave us words of hope to inspire strength within us to continue. So many people found their own special way to help us get to where we are today.
The other day – the day I learned of Dad’s cancer - Uncle John (who help us on the first day and night of your marathon) called and asked after your condition. I told him that you were getting better each day and would make to best recovery that you could possibly do. I also told him of Dad’s health.
Uncle John (who lives in England) said that he was extremely impressed with the outpouring of support for us at the darkest time of our lives. Your parents were also extremely touched with the love they felt from your well-wishers.
This is not the kind of response we would have gotten if we lived in a big community. We are so blessed with wonderful people about us.
Friday October 30
Quinn slept in your bed the hole night in his bed. That is 62 days of being in our bed and now he has ventured into his own sleeping nest. His courage is there.
It’s a very busy day at the veterinary hospital. Melissa who is pregnant with twins is ill. So, I’m double booked all day. There is no time to wallow in sorrow. It’s just go, go, go.
I got a phone call from the Halifax Infirmary at 12:30pm, saying that you have been transferred to the Colchester Hospital because the Halifax Infirmary (HI) needs the bed, and there is no space at the Rehab hospital. I’m worried about this and because I was away Thursday, I don’t know the results of the MRI yet. More importantly, I don’t know the current thought behind your pain. Is the problem actually in your hip and back or is it ‘in your head’?
After work, I pick up the children from Karen’s and head to the Colchester Hospital. Room 411. You are in a single room. At present, it is devoid of many things that would make it homey for you. The staff, at the HI, assured me that they would pack up your things and put them aside for me to pick up. Marsha worked at the hospital today. She called to ask if she could pick up your things for us.
You told me, in a frustrated tone, about your MRI. It took a long time, you said. You felt that the staff was quite rude. You were frustrated. You said they kept you waiting for “over 3 or 4 hours.” You felt that you were given the ‘run around’. I guess they won’t be invited to your party!
Your lack of sense of time upsets you. Time seems to pass by in a very slow way. Visitors would be appreciated to help define your minutes, hours and days.
The Colchester Hospital treats you as a possible MRSA patient until proven otherwise. It may take a few days for the test to come back” the night nurse says…until then precautions must be observed.
You and Quinn have a good talk. You ask him about his teacher, gymnastics and who is his best friend? “Luke” Quinn says. “What does Luke like? Does he have a girlfriend?” You inquire. Quinn giggles at the thought of a girl friend.
Tara is still a little under the weather with a cough. She wants to be with you but she is worried that she might make you ill. She patiently dons a mask even though it’s harder to breath with the mask on.
You are still obsessed with the idea of having a drink that is not very thickened. Coke, Chocolate milk even the flavoured water would be a good choice, you advise me.
I’m glad you are almost home.
Saturday, October 31, 2009
Friday, October 30, 2009
CHRIS HAS BEEN MOVED TO THE COLCHESTER HOSPITAL FRIDAY AT NOON.
If you would like to visit Chris he is on the 4th floor in 411.
He would love visitors.
He will stay there until a spot opens up at the Rehab hospital in Halifax.
Gwen
He would love visitors.
He will stay there until a spot opens up at the Rehab hospital in Halifax.
Gwen
Thursday, October 29, 2009
Wednesday October 28 - Loosing Endurance and finding Courage
Walk to kids to school – it’s cold – mad rush to look for mittens – normally I would have that all sorted out by now. We have lots of lefts – no rights in our mitten family. However, I did discovered another perk to having a dog friend in your life – a perk most people don’t talk about … a sealed plastic bag with fresh dog poop gives off a lot of heat!
There has been no more teeth grinding from Quinn lately but the front incisor teeth coming out at an angle. Quinn’s teeth may need braces – not surprising since we both have dental issues. It’s just like my bad eyes, that I inherited from both my parents – I have their eye problems added together. Quinn has both our teeth.
My eyes have been a worry for me over the last few years. Their affliction may shorten my career. Another good reason to attend this course on succession planning. Like with every thing else – I can accept the outcome – I just need a plan to do it.
I’m glad your perfect eyes were passed onto the children.
On the weekend, I noticed that Quinn’s T-shirt, that Sheena made and gave to him, was loosing the “Endurance” iron patch – he tore it off and gave to me to save and fix it – I have lost it – I haven’t told him yet. Tara almost lost her ‘Courage’ iron patch – but I found it and got it back on the shirt.
I am starting to loose my endurance too. I hope once this trip is behind me, I will find it again. I feel better about going to Milton now that I have a plan. I had forgot for a moment that there will be uphills and downhills.
I have to find ‘Endurance’ to give back to Quinn.
Fran and the children dropped me off at the airport on the way to Halifax to visit you. Tara seems relaxed, but Quinn was a little anxious. I told him “I’ll be back for tomorrow night and I will see you on Friday morning”. He wants to come with me. Oh Boy – I knew dropping me off with the children there would be hard. Fran cleverly distracted him with the promise of Burger King food. It works.
Fellow passenger on the plane, daughter had a stroke at the age of 7. She had a rare genetic disease that affected her platelets. A bone marrow transplant might have saved her. Her father traveled as far as England, to seek help from specialists and look for a donor, none could be found. She died at the age of 9.
I had always thought I should registrar for the Bone Marrow Registry. I even got information, but it meant a trip to Halifax, and I would rarely go. Maybe there is a small silver lining for me to be in Halifax so much. The other day, I walked past the Canadian Blood Services building. Next week, I will sign up for the bone marrow registry
As I’m trying to find the hotel, Tara calls me on the cell. I pull over and call them back. “How’s the visit with Daddy?” I asked Tara. “He was sleeping mostly – Fran, Quinn and I played cards.” I say goodnight and talk to Quinn. He seems less tense. He has decided to sleep in his bed for the night.
He may have lost his endurance but he found his courage. I wonder if he will sleep in his bed the whole night.
There has been no more teeth grinding from Quinn lately but the front incisor teeth coming out at an angle. Quinn’s teeth may need braces – not surprising since we both have dental issues. It’s just like my bad eyes, that I inherited from both my parents – I have their eye problems added together. Quinn has both our teeth.
My eyes have been a worry for me over the last few years. Their affliction may shorten my career. Another good reason to attend this course on succession planning. Like with every thing else – I can accept the outcome – I just need a plan to do it.
I’m glad your perfect eyes were passed onto the children.
On the weekend, I noticed that Quinn’s T-shirt, that Sheena made and gave to him, was loosing the “Endurance” iron patch – he tore it off and gave to me to save and fix it – I have lost it – I haven’t told him yet. Tara almost lost her ‘Courage’ iron patch – but I found it and got it back on the shirt.
I am starting to loose my endurance too. I hope once this trip is behind me, I will find it again. I feel better about going to Milton now that I have a plan. I had forgot for a moment that there will be uphills and downhills.
I have to find ‘Endurance’ to give back to Quinn.
Fran and the children dropped me off at the airport on the way to Halifax to visit you. Tara seems relaxed, but Quinn was a little anxious. I told him “I’ll be back for tomorrow night and I will see you on Friday morning”. He wants to come with me. Oh Boy – I knew dropping me off with the children there would be hard. Fran cleverly distracted him with the promise of Burger King food. It works.
Fellow passenger on the plane, daughter had a stroke at the age of 7. She had a rare genetic disease that affected her platelets. A bone marrow transplant might have saved her. Her father traveled as far as England, to seek help from specialists and look for a donor, none could be found. She died at the age of 9.
I had always thought I should registrar for the Bone Marrow Registry. I even got information, but it meant a trip to Halifax, and I would rarely go. Maybe there is a small silver lining for me to be in Halifax so much. The other day, I walked past the Canadian Blood Services building. Next week, I will sign up for the bone marrow registry
As I’m trying to find the hotel, Tara calls me on the cell. I pull over and call them back. “How’s the visit with Daddy?” I asked Tara. “He was sleeping mostly – Fran, Quinn and I played cards.” I say goodnight and talk to Quinn. He seems less tense. He has decided to sleep in his bed for the night.
He may have lost his endurance but he found his courage. I wonder if he will sleep in his bed the whole night.
Tuesday October 27 – It’s The Real Thing … Thickened Coke
I drive into Halifax with Darren. It’s a much saner hour then when I drive with Marsha. I can get the children off to school first and I don’t have to ask Marianne to come over at 5AM to sit with the children so I can go with Marsha. She says she doesn’t mind but I don’t want to abuse the offer.
Darren talks about his youth group and why he became a RCMP officer. His Godfather and uncle is Donald Marshall Jr.. Darren talked passionately about Donald’s personal conviction to over come the adversary and his endurance to do so. Even when faced with then temptation to admit to something he didn’t do - to get parole - he didn’t. It was a sacrifice. He kept his eye on the prize of vindication and freedom and stayed true to himself.
There is a lesson in Donald’s story that can be taken to heart and applied to many life situations. I feel you are overcoming your adversary, to get the prize, you need to not let the pain distract you. I have to focus on the prize of your health and not get bogged down with feeling the stress.
Darren is a runner. He s he will run the Cabot Trail again next spring – he wants to do two legs! Eventually, he wants to run every leg of the trail (just like your dream)- So that he will be on track to retire from the RCMP the same year as he runs the last leg of the trail. To make this happen he has to run two one year. This year is the year.
You are in a talkative mood. Your nurse, Ryan, is an athletic looking young man. Ryan tells me that you described him as a ‘brick shithouse’. He took it in good humour. Ryan gives you a shot of morphine so that the MRI of your lower back will go easier. They had tried it yesterday but you were too restless.
You clearly like Ryan. You called him your best friend - and this was before the morphine shot! You say you want to have a party and invite all the nurses and all the people who love you. “You have had a lot of nurses and there are a lot of people who love you. – So it will have to be a BIG party.” I smile at the thought.
I can picture the day you come home – the first time I dared to let myself stretch my imagination that far. It makes me smile.
I tell you that you have been in the hospital for 58 or 2 x 29 days yesterday. “Does it feel that long?” I say. You reply “On the short end of that. Has he (you are pointing at an empty chair) been here that long?” You were sure someone sat in the chair but you are unsure when.
You are still trying to measure time and see how it feels.
To get you refocused, I suggest a super party on your birthday next year. (June 25th) and you chime in that we should have Chinese food. “Yeah, Chinese food is good – it’s like a New Year celebration.”
You decide that you would even invite the physio people. The physio people are not very popular with you. You say they make you do things that you can’t do. Last week you told them when they came to do some work with you that you had to go to the bathroom (actually you were more descriptive then this). That scared them off … or so you thought. However despite your feeling about physio, you don’t hold it against the people.
You are pleased with yourself that you passed the swallow test. For breakfast you had a little yogurt and thickened orange juice. When you taste the OJ you remark ”Orange juice is really good.” You sounded surprised. I was surprised too – normally fruit (except bananas) would not even cross your mind as a food to eat – orange is a colour to you not a food.
I read you some emails, letters and cards. You are touch by them.
You want a pillow for your head, I comply and then you say you want a pillow for your other head. I think the morphine was working.
You are off of your MRI. We hope it may reveal some answers about your pain. The bone scan was clear. They are looking now at your lower back. Ryan and I change your bed sheets. Ryan tells me of some patients he has had who, after the recovery from a stroke, had the feeling of pain but could not describe it. The patient couldn’t where it was and how it felt –just had an impression of pain. No source could be found. It was thought that the pain originated from the brain. Various drugs were used but they didn’t help. Gosh – I hope it’s not that. Chronic pain would be a nasty legacy from a stroke.
I discuss with Ryan an observation that I made about your pain treatment. When you are asked by a nurse “Do you want pain medication”, you say no. But when you are asked if you are in pain – you reply yes! I point out to Ryan that you don’t like taking drugs for pain. At this time I wonder if you are capable to make that decision – it requires too much decision making. Asking if there is pain is an easier question to answer. Ryan agrees. Hopefully this will be passed on to other nurses. I think that I will talk to the charge nurse about this too.
You get back from the MRI, which was a no go. You were still too restless. You will need sedation. You are frustrated with the MRI staff. “They need a sound talking too.” You said scoldingly. I’m not sure what your complaint with them was but you were indigent.
When one of your charms fell from the bed when we got you back in bed from the stretcher – I was upset. These charms – especially the 29 was important to you. Apparently, your gold chain was removed for the MRI. Whoever removed it didn’t realize that there were three charms on it. The golden 29, the St Christopher medal and Janice’s crucifix. We eventually two of the charms but not the crucifix. Sorry Janice.
Fran arrives to visit. We ask Ryan if there is some way you can have thickened Coke Cola. Shirley, the dietician, says yes and gives us some thickening powder to add to it. Fran has to go to Quinpool road to get a Coke – the QE2 is a Pepsi only hospital.
You taste the thickened coke with much anticipation. You are very gracious about it. You didn’t say it was great but you did especially like it either. Oh well You like the orange juice – maybe this a new taste beginning for you and you won’t want any unhealthy food. Certainly, feeding you your favorite foods and an altered state while your brain is healing could set you up for taste aversion.
You wonder aloud “Why would the Dr. put thickener in my coke when they are giving me blood thinners. Maybe the blood thinners will make the coke right again.” Fran and I couldn’t argue with that logic!
You seem concerned about Quinn. You say “We have to be careful how we steer Quinn, I don’t want him going this route. I want him to stay away from all the terrible things. I want him to know about all the potential dangers.” I not sure what this is in reference to. Perhaps you will know later in your recovery.
You ate some puree meat, potatoes and gravey. It was good you said. You ate half of it – taking long breaks between spoonfuls. This is a skill that needs to be relearned.
Physio Linda came and worked with you. She notes that you have a little ‘cross over’. This is a term for a sort of reflex. When you were asked to pull your knees together while laying on your back with your knees bent, and Linda held your good right knee still – giving you resistance – your left buttock muscles tighten a little as if the message from the right side is spilling over to the left side. She feels that this is good.
You express frustration with your body. A natural outcome – but I don’t want frustration to use up your energy. I remind you that this journey is a marathon and that there are many steps before the end – some will be harder then others. You reply “Can I take smaller steps then?”
You don’t know it now but you have already taken the big steps.
Fran meets me at home. She had just been to visit Dad at the Mira. He has been unwell lately and over the past few weeks – He has had some tests were done. It’s cancer … pancreatic cancer. I’m numb. We don’t know how much time he has – it won’t be long. We hold each other.
Darren talks about his youth group and why he became a RCMP officer. His Godfather and uncle is Donald Marshall Jr.. Darren talked passionately about Donald’s personal conviction to over come the adversary and his endurance to do so. Even when faced with then temptation to admit to something he didn’t do - to get parole - he didn’t. It was a sacrifice. He kept his eye on the prize of vindication and freedom and stayed true to himself.
There is a lesson in Donald’s story that can be taken to heart and applied to many life situations. I feel you are overcoming your adversary, to get the prize, you need to not let the pain distract you. I have to focus on the prize of your health and not get bogged down with feeling the stress.
Darren is a runner. He s he will run the Cabot Trail again next spring – he wants to do two legs! Eventually, he wants to run every leg of the trail (just like your dream)- So that he will be on track to retire from the RCMP the same year as he runs the last leg of the trail. To make this happen he has to run two one year. This year is the year.
You are in a talkative mood. Your nurse, Ryan, is an athletic looking young man. Ryan tells me that you described him as a ‘brick shithouse’. He took it in good humour. Ryan gives you a shot of morphine so that the MRI of your lower back will go easier. They had tried it yesterday but you were too restless.
You clearly like Ryan. You called him your best friend - and this was before the morphine shot! You say you want to have a party and invite all the nurses and all the people who love you. “You have had a lot of nurses and there are a lot of people who love you. – So it will have to be a BIG party.” I smile at the thought.
I can picture the day you come home – the first time I dared to let myself stretch my imagination that far. It makes me smile.
I tell you that you have been in the hospital for 58 or 2 x 29 days yesterday. “Does it feel that long?” I say. You reply “On the short end of that. Has he (you are pointing at an empty chair) been here that long?” You were sure someone sat in the chair but you are unsure when.
You are still trying to measure time and see how it feels.
To get you refocused, I suggest a super party on your birthday next year. (June 25th) and you chime in that we should have Chinese food. “Yeah, Chinese food is good – it’s like a New Year celebration.”
You decide that you would even invite the physio people. The physio people are not very popular with you. You say they make you do things that you can’t do. Last week you told them when they came to do some work with you that you had to go to the bathroom (actually you were more descriptive then this). That scared them off … or so you thought. However despite your feeling about physio, you don’t hold it against the people.
You are pleased with yourself that you passed the swallow test. For breakfast you had a little yogurt and thickened orange juice. When you taste the OJ you remark ”Orange juice is really good.” You sounded surprised. I was surprised too – normally fruit (except bananas) would not even cross your mind as a food to eat – orange is a colour to you not a food.
I read you some emails, letters and cards. You are touch by them.
You want a pillow for your head, I comply and then you say you want a pillow for your other head. I think the morphine was working.
You are off of your MRI. We hope it may reveal some answers about your pain. The bone scan was clear. They are looking now at your lower back. Ryan and I change your bed sheets. Ryan tells me of some patients he has had who, after the recovery from a stroke, had the feeling of pain but could not describe it. The patient couldn’t where it was and how it felt –just had an impression of pain. No source could be found. It was thought that the pain originated from the brain. Various drugs were used but they didn’t help. Gosh – I hope it’s not that. Chronic pain would be a nasty legacy from a stroke.
I discuss with Ryan an observation that I made about your pain treatment. When you are asked by a nurse “Do you want pain medication”, you say no. But when you are asked if you are in pain – you reply yes! I point out to Ryan that you don’t like taking drugs for pain. At this time I wonder if you are capable to make that decision – it requires too much decision making. Asking if there is pain is an easier question to answer. Ryan agrees. Hopefully this will be passed on to other nurses. I think that I will talk to the charge nurse about this too.
You get back from the MRI, which was a no go. You were still too restless. You will need sedation. You are frustrated with the MRI staff. “They need a sound talking too.” You said scoldingly. I’m not sure what your complaint with them was but you were indigent.
When one of your charms fell from the bed when we got you back in bed from the stretcher – I was upset. These charms – especially the 29 was important to you. Apparently, your gold chain was removed for the MRI. Whoever removed it didn’t realize that there were three charms on it. The golden 29, the St Christopher medal and Janice’s crucifix. We eventually two of the charms but not the crucifix. Sorry Janice.
Fran arrives to visit. We ask Ryan if there is some way you can have thickened Coke Cola. Shirley, the dietician, says yes and gives us some thickening powder to add to it. Fran has to go to Quinpool road to get a Coke – the QE2 is a Pepsi only hospital.
You taste the thickened coke with much anticipation. You are very gracious about it. You didn’t say it was great but you did especially like it either. Oh well You like the orange juice – maybe this a new taste beginning for you and you won’t want any unhealthy food. Certainly, feeding you your favorite foods and an altered state while your brain is healing could set you up for taste aversion.
You wonder aloud “Why would the Dr. put thickener in my coke when they are giving me blood thinners. Maybe the blood thinners will make the coke right again.” Fran and I couldn’t argue with that logic!
You seem concerned about Quinn. You say “We have to be careful how we steer Quinn, I don’t want him going this route. I want him to stay away from all the terrible things. I want him to know about all the potential dangers.” I not sure what this is in reference to. Perhaps you will know later in your recovery.
You ate some puree meat, potatoes and gravey. It was good you said. You ate half of it – taking long breaks between spoonfuls. This is a skill that needs to be relearned.
Physio Linda came and worked with you. She notes that you have a little ‘cross over’. This is a term for a sort of reflex. When you were asked to pull your knees together while laying on your back with your knees bent, and Linda held your good right knee still – giving you resistance – your left buttock muscles tighten a little as if the message from the right side is spilling over to the left side. She feels that this is good.
You express frustration with your body. A natural outcome – but I don’t want frustration to use up your energy. I remind you that this journey is a marathon and that there are many steps before the end – some will be harder then others. You reply “Can I take smaller steps then?”
You don’t know it now but you have already taken the big steps.
Fran meets me at home. She had just been to visit Dad at the Mira. He has been unwell lately and over the past few weeks – He has had some tests were done. It’s cancer … pancreatic cancer. I’m numb. We don’t know how much time he has – it won’t be long. We hold each other.
Monday October 26 - Acts in Faith to Live in Hope
I feel compelled to write every day – I don’t want to miss a day of journaling. I think I understand your running streak a little better now. You didn’t want to miss a day of running, because it would make it that much easier to miss the next and the next. I worry that if I miss a day, it will be easier to miss another day and another. I am going to stay true to your conviction to running and I will continue to journal until you don’t need me to do it any more.
This morning, I looked up the score of the Angels game from last night. I had stayed up to 11:30 when the Angels scored another run to make it 2-3 Yankees. Sadly, the Angels lost to the Yankees. However on the bright side, maybe there is a silver lining. Maybe Rod Carew wouldn’t be so busy and he can look at his mail.
Quinn asks what the score was from the game. Quinn tells me what he wished for on Sunday when we were eating dinner at A&W. He threw his two pennies in the fountain and wished with the first that the Angels will win their game. The second wish was for them to win the rest of the games. He said that he had a dream last night that the Angels won. When I told him that they didn’t – he was quiet. I pointed out to him the silver lining and he seemed to rally.
Tara is sleepy and feeling ill. A sore throat. She still wants to go to school but sleep-in a little first. I called work and find out that my first appointment is 9:10 – good - I can cut her a little slack. I let her sleep in an extra 45 minutes. When she did get up she was ready for her day.
We had some homework from the Dr. appointment last week. I had to collect a urine sample and take it to the hospital for Tara. I dropped Tara off at the school at 8:45 – And I foolishly think I have time to submit the freshly collected sample. Wrong – as usual the lab area was standing room only. Since I only have to drop it off – I thought the process might go quickly. They were serving number 1 when I got there and I got number 11. I gambled and waited. The numbers are going by quickly – serving 2 then 3,4,5,6,7,8 and then it the system stalls and no new numbers – in fact there is no one at the desk at all!
I can’t wait. I got to get to work. I decide to leave and come back at lunch. I scold myself for even trying to pull off the job today – but if I don’t do it today then when? I get to work feeling like I’ve dropped more balls. First Annie, now I can’t even drop off a simple urine sample. When I get to work – there is a small problem with one of my patient’s blood samples.
I lose it – another melt down – Oh boy – I’m on the edge. Val and Carmen do what comes naturally to them – they hug me and say understanding words. They help me find a plan to solve my immediate problems. This is just exactly what I needed. A plan. Kaila goes back to the human hospital with urine in hand. Val looks after my patient’s blood sample problem. Carmen gets me through the day.
Fran says I’m the queen of metaphors. I might over use them a bit but metaphors (good and bad) help me understand a situation better. The Juggling metaphor works for me this time– because the balls that I drop – I don’t have to pick up. There are people all around me who are there to help – who want to help. They will pick up the dropped balls and even start juggling some of my balls themselves. I am so lucky. I just have to learn to ask – being a natural do-it-yourself-er, this is something I’ve never been very good at.
I realize now why I’m so on edge this week. Early in August I registered for a one-day veterinary meeting in Toronto for Oct 29th. At the time we didn’t know that our lives would be so different. We talked about it and you said I should go. It is a meeting about succession planning for veterinary practices - a rather unique topic that wouldn’t be readily available at other times. It was a first-come enrollment. I booked the trip right away and I forgot about it.
A few weeks ago I realized I needed to do something about it. I talked to Juanita and arranged child-care. I was free to go. But I still don’t feel I should. It seems indulgent – flying off away from you and the children who need me.
I didn’t want to cancel the meeting because the information may be very good for our family right now since we don’t know what financial arrangements we might have to take in the future.
The closer the time came, the more anxious I got. I told myself this past weekend that I can’t go. It’s crazy to go. I don’t want to go. By Sunday night, I was a mess. While crying to Juanita on the phone, I decided that I would sleep on the decision one more night. I was tired Sunday and in no mood to made decisions.
Today is another day and I will go to Toronto on Wed. Fran is going to stay a few days longer before going back to Newfoundland. She will stay with the children at the house. Quinn likes that idea and is happy not to do a sleepover at Juanita’s. He likes doing sleep overs at Juanita’s normally – but this is not a normal time.
I will leave Wed evening and get back Thurs evening. I was indecisive because I didn’t want to leave you and the children. But all of you are in good hands.
I called the hospital - Your swallow assessment was great – you passed with flying colours (and you didn’t even study). First prize in the swallowing challenge is … (imagine a drum roll here) Thickened Liquids! I wonder what joys that will bring to your tongue. Stay tuned – we will see tomorrow.
When I pick up the children from gymnastics, Tara is feeling sick. She is with Craig, the guidance teacher from the school. He shares your passion for sports and he had a hunch that he could get the letter to Rod Carew through the Angels organization. He had sent an email to the Angels some time ago. Today, he received a reply! It’s from a public relations person who asked for the letter and says she will try to forward it to Mr. Carew!
Tonight, Quinn spotted another first star. He has been spotting stars every night that he can. He wished the Angels win the World Series NEXT year. Chris, I think you have created an Angels fan already. A fan who acts in faith to live in hope.
Just like your fans. We all are acting in faith to have hope for you.
When friends call or write and say how their visit with you went – it boosts my spirits – They see your recovery from a different and rosier perspective. They don’t try to read between the lines – they just take what they see at face value. They see that you are better then you were. A little re-count of a visit shows me that side – I need to be reminded of that side occasionally. This is especially true for the days when I can’t visit you.
My hope is that this journal will help you fill in your blanks. Hearing about your visits with family and friends help fill in my blanks.
Here are some re-counts of visitis that you had last Friday and Monday.
Karen, a teacher from the school, visited you on Friday She wrote:
I did have a good day on Friday...and it was a great bonus to see Chris! I thought he was looking very good considering all he has been through. He was awake and very alert when I went in at lunch time. We chatted, talking about running, you guys, even the existence of God! At one point Chris became a little agitated and was asking to talk to you and I told him you had to work but would be visiting later in the afternoon...I tried to comfort him and steer the conversation in a different direction...I thought I was doing a great job, until Chris looked me straight in the eye and said "You're very good at stalling". It made me laugh and let me know that however confusing the signs may be, Chris is there, inside an injured body, trying to connect with a world that is so different for him now. After one of the nurses, (Jenny Proctor) had been in, Chris asked me what her name was, he even wanted to know her last name. He then asked me to write her name down on his visitor list and to put an arrow next to it pointing to the word 'inspiration'. I thought that was quite something. Small wonders...another thing that struck me in a happy way was when Chris asked if I had a lap top...at first I didn't know why he had asked me, then he pointed to my bag that was up on a chair to the side of the bed...it is a computer bag, but I just use it for my papers etc. I explained to him that no, I didn't have a computer in the bag, but I just felt so simply happy to see a healing brain in action! Thank you for sharing some of your time Chris...I'll be back! Much love to you all, you are constantly in our thoughts and prayers...
Karen
Laura, a fellow runner and school mother, visited Friday. She wrote:
I just want to say how much I thought he had improved since my last visit, which was I think about 3 weeks ago. He was making more direct eye contact with me when he spoke and his words were coming out much faster than before. .also, he was able to convey emotion with his words which wasn't there previously. He did seem a little glum.... but, who can blame him. We talked about running and he said he wants to run again and I told him I believed he would. I couldn't help thinking on the ride home, if he has improved this much in 3 weeks, what is he going to be capable of in a couple of months from now??
Take Care,
Laura
ps Chris was asking about Zoe and Jonah and who their teachers were this year... he corrected my pronounciation of Madame Sabourin..show off.
Laura and Steve have just got back home after their long weekend with you. They wrote:
You've probably heard from the nurses today that Chris had good news - he can start to eat solids as long as they are mashed and he can drink liquids by spoon. He had the barium test this morning before we came over so he was feeling a bit nauseous from the barium. The nurse gave him gravol, which made him sleepy so we didn't take him outside. We sat and talked with Chris and when he got tired we left him for a bit before coming back. Oh and the other good news and Chris told us this when we first arrived - his bladder is almost back to normal. So all in all a very good news day!
A couple from the church came by to visit Chris this afternoon - I can't remember their names but I think the gentleman works with Chris on the maintenance of the church. They were a very nice couple and Chris was awake when they stopped by.
It was great to see you and the kids, and also your sisters and Maddie and Farley. Hopefully the next time we get together Chris will be in Truro and almost back to normal. His spirits were pretty high today and if he keeps this up he's going to improve in leaps and bounds. He certainly has a strong support group with you and the kids and family and friends. He's doing all the hard work and we're there to encourage and keep him going. I guess I better do my part now and start to practice running!!! If Chris thinks his recovery is hard, imagine me trying to run!! But I'll do it for him and of course Steve will be there to participate in the next run Chris is ready for in Cape Breton.
Love,
Laura
This morning, I looked up the score of the Angels game from last night. I had stayed up to 11:30 when the Angels scored another run to make it 2-3 Yankees. Sadly, the Angels lost to the Yankees. However on the bright side, maybe there is a silver lining. Maybe Rod Carew wouldn’t be so busy and he can look at his mail.
Quinn asks what the score was from the game. Quinn tells me what he wished for on Sunday when we were eating dinner at A&W. He threw his two pennies in the fountain and wished with the first that the Angels will win their game. The second wish was for them to win the rest of the games. He said that he had a dream last night that the Angels won. When I told him that they didn’t – he was quiet. I pointed out to him the silver lining and he seemed to rally.
Tara is sleepy and feeling ill. A sore throat. She still wants to go to school but sleep-in a little first. I called work and find out that my first appointment is 9:10 – good - I can cut her a little slack. I let her sleep in an extra 45 minutes. When she did get up she was ready for her day.
We had some homework from the Dr. appointment last week. I had to collect a urine sample and take it to the hospital for Tara. I dropped Tara off at the school at 8:45 – And I foolishly think I have time to submit the freshly collected sample. Wrong – as usual the lab area was standing room only. Since I only have to drop it off – I thought the process might go quickly. They were serving number 1 when I got there and I got number 11. I gambled and waited. The numbers are going by quickly – serving 2 then 3,4,5,6,7,8 and then it the system stalls and no new numbers – in fact there is no one at the desk at all!
I can’t wait. I got to get to work. I decide to leave and come back at lunch. I scold myself for even trying to pull off the job today – but if I don’t do it today then when? I get to work feeling like I’ve dropped more balls. First Annie, now I can’t even drop off a simple urine sample. When I get to work – there is a small problem with one of my patient’s blood samples.
I lose it – another melt down – Oh boy – I’m on the edge. Val and Carmen do what comes naturally to them – they hug me and say understanding words. They help me find a plan to solve my immediate problems. This is just exactly what I needed. A plan. Kaila goes back to the human hospital with urine in hand. Val looks after my patient’s blood sample problem. Carmen gets me through the day.
Fran says I’m the queen of metaphors. I might over use them a bit but metaphors (good and bad) help me understand a situation better. The Juggling metaphor works for me this time– because the balls that I drop – I don’t have to pick up. There are people all around me who are there to help – who want to help. They will pick up the dropped balls and even start juggling some of my balls themselves. I am so lucky. I just have to learn to ask – being a natural do-it-yourself-er, this is something I’ve never been very good at.
I realize now why I’m so on edge this week. Early in August I registered for a one-day veterinary meeting in Toronto for Oct 29th. At the time we didn’t know that our lives would be so different. We talked about it and you said I should go. It is a meeting about succession planning for veterinary practices - a rather unique topic that wouldn’t be readily available at other times. It was a first-come enrollment. I booked the trip right away and I forgot about it.
A few weeks ago I realized I needed to do something about it. I talked to Juanita and arranged child-care. I was free to go. But I still don’t feel I should. It seems indulgent – flying off away from you and the children who need me.
I didn’t want to cancel the meeting because the information may be very good for our family right now since we don’t know what financial arrangements we might have to take in the future.
The closer the time came, the more anxious I got. I told myself this past weekend that I can’t go. It’s crazy to go. I don’t want to go. By Sunday night, I was a mess. While crying to Juanita on the phone, I decided that I would sleep on the decision one more night. I was tired Sunday and in no mood to made decisions.
Today is another day and I will go to Toronto on Wed. Fran is going to stay a few days longer before going back to Newfoundland. She will stay with the children at the house. Quinn likes that idea and is happy not to do a sleepover at Juanita’s. He likes doing sleep overs at Juanita’s normally – but this is not a normal time.
I will leave Wed evening and get back Thurs evening. I was indecisive because I didn’t want to leave you and the children. But all of you are in good hands.
I called the hospital - Your swallow assessment was great – you passed with flying colours (and you didn’t even study). First prize in the swallowing challenge is … (imagine a drum roll here) Thickened Liquids! I wonder what joys that will bring to your tongue. Stay tuned – we will see tomorrow.
When I pick up the children from gymnastics, Tara is feeling sick. She is with Craig, the guidance teacher from the school. He shares your passion for sports and he had a hunch that he could get the letter to Rod Carew through the Angels organization. He had sent an email to the Angels some time ago. Today, he received a reply! It’s from a public relations person who asked for the letter and says she will try to forward it to Mr. Carew!
Tonight, Quinn spotted another first star. He has been spotting stars every night that he can. He wished the Angels win the World Series NEXT year. Chris, I think you have created an Angels fan already. A fan who acts in faith to live in hope.
Just like your fans. We all are acting in faith to have hope for you.
When friends call or write and say how their visit with you went – it boosts my spirits – They see your recovery from a different and rosier perspective. They don’t try to read between the lines – they just take what they see at face value. They see that you are better then you were. A little re-count of a visit shows me that side – I need to be reminded of that side occasionally. This is especially true for the days when I can’t visit you.
My hope is that this journal will help you fill in your blanks. Hearing about your visits with family and friends help fill in my blanks.
Here are some re-counts of visitis that you had last Friday and Monday.
Karen, a teacher from the school, visited you on Friday She wrote:
I did have a good day on Friday...and it was a great bonus to see Chris! I thought he was looking very good considering all he has been through. He was awake and very alert when I went in at lunch time. We chatted, talking about running, you guys, even the existence of God! At one point Chris became a little agitated and was asking to talk to you and I told him you had to work but would be visiting later in the afternoon...I tried to comfort him and steer the conversation in a different direction...I thought I was doing a great job, until Chris looked me straight in the eye and said "You're very good at stalling". It made me laugh and let me know that however confusing the signs may be, Chris is there, inside an injured body, trying to connect with a world that is so different for him now. After one of the nurses, (Jenny Proctor) had been in, Chris asked me what her name was, he even wanted to know her last name. He then asked me to write her name down on his visitor list and to put an arrow next to it pointing to the word 'inspiration'. I thought that was quite something. Small wonders...another thing that struck me in a happy way was when Chris asked if I had a lap top...at first I didn't know why he had asked me, then he pointed to my bag that was up on a chair to the side of the bed...it is a computer bag, but I just use it for my papers etc. I explained to him that no, I didn't have a computer in the bag, but I just felt so simply happy to see a healing brain in action! Thank you for sharing some of your time Chris...I'll be back! Much love to you all, you are constantly in our thoughts and prayers...
Karen
Laura, a fellow runner and school mother, visited Friday. She wrote:
I just want to say how much I thought he had improved since my last visit, which was I think about 3 weeks ago. He was making more direct eye contact with me when he spoke and his words were coming out much faster than before. .also, he was able to convey emotion with his words which wasn't there previously. He did seem a little glum.... but, who can blame him. We talked about running and he said he wants to run again and I told him I believed he would. I couldn't help thinking on the ride home, if he has improved this much in 3 weeks, what is he going to be capable of in a couple of months from now??
Take Care,
Laura
ps Chris was asking about Zoe and Jonah and who their teachers were this year... he corrected my pronounciation of Madame Sabourin..show off.
Laura and Steve have just got back home after their long weekend with you. They wrote:
You've probably heard from the nurses today that Chris had good news - he can start to eat solids as long as they are mashed and he can drink liquids by spoon. He had the barium test this morning before we came over so he was feeling a bit nauseous from the barium. The nurse gave him gravol, which made him sleepy so we didn't take him outside. We sat and talked with Chris and when he got tired we left him for a bit before coming back. Oh and the other good news and Chris told us this when we first arrived - his bladder is almost back to normal. So all in all a very good news day!
A couple from the church came by to visit Chris this afternoon - I can't remember their names but I think the gentleman works with Chris on the maintenance of the church. They were a very nice couple and Chris was awake when they stopped by.
It was great to see you and the kids, and also your sisters and Maddie and Farley. Hopefully the next time we get together Chris will be in Truro and almost back to normal. His spirits were pretty high today and if he keeps this up he's going to improve in leaps and bounds. He certainly has a strong support group with you and the kids and family and friends. He's doing all the hard work and we're there to encourage and keep him going. I guess I better do my part now and start to practice running!!! If Chris thinks his recovery is hard, imagine me trying to run!! But I'll do it for him and of course Steve will be there to participate in the next run Chris is ready for in Cape Breton.
Love,
Laura
Monday, October 26, 2009
Sunday October 25 – Being Scared and Brave at the Same Time
It’s a miserable rainy windy day. This is the type of day you would run a ‘cheap one’ (as you call it) like 1.29 km or 1m29s run depending on the degree of nasty weather. The children are sleeping in – even Tara. I think she may be coming down with a cold.
Her throat was sore last night after she got out of the pool, but it might have been too much treated water swallowed.
I was up at 5:30am – I can’t believe how I have become a morning person, especially on days when I are going to visit you. I write in the journal while the children sleep. Quiet mornings are good for reflection. Generally, at night, I try to write in point form what transpired that day – then in the morning, after a good sleep, I reflect and fill in the blanks. That helps me find the meaning to the day. This works well for me and allows me to start the day in a good frame of mind.
When we arrive at the hospital. The nurses are getting you cleaned up and putting you in your chair.
Quinn shows you some of his devil-stick talents and his recently acquired juggling skills. They are still a little rough but, more important, he is not getting frustrated with the mistakes – he just picks them up and starts all over again. You show Quinn a little one-hand trick with a stick that I would be hard pressed to do normally, let alone after a stroke.
Upon seeing this trick, Quinn says “You ARE your son’s father alright for the devil sticks but for driving a car I want to be my father’s son”. (In case you missed that – that was a dig at me … I think.)
I explain to you again how important it is for you to touch and acknowledge your left side. You and Quinn start a new game, where Quinn calls out a left-sided body part (elbow, wrist, knee etc) and you touch it with the devil stick. That seems to work well – I wonder if this has ever been used as a standard physiotherapy procedure. I think it should be. This type of therapy should be conducted by a kid, who loves to giggle, because that really encourages patient participation.
Steve and Laura arrive and say that the weather has suddenly improved. We take you outside to get some sunshine and Vitamin D. I notice, for the first time, that you look rather pale in the sunlight. – Of course you haven’t been outside for 2 months on a sunny day! I expect the sun feels good.
We hang out together and Quinn plays with his devil sticks and Tara plays with Laura’s hair. Quinn almost puts Steve’s eye out with the devil-stick. If you were looking, that would have never happened. I think, that is one of your worst fears. You’d often say, “You’re going to put someone’s eye out with that thing”. – Now it’s a common place statement with the children.
When we get back to the room, you get talkative. Your words don’t make much sense. It’s like there are 2 or 3 different thoughts going on and the words from each are jumbled into an impossible-to-detangle knot. I do find a meaning sometimes, like when you said “Put that Kleenex behind my head and blow it up” The children figured it out – it means - I need another pillow … at least we thought did. Most of the time I can’t untangle the word knot.
Steve shows you what he did with the T-shirt that my coworkers at the animal hospital made for him for the Walk-Run for Hope on the Friday after your stroke. On the back of the shirt it says ‘My Brother Chris Cashen’ followed by a ‘29’. That was cut out from the shirt and mounted and framed. You could read it from the bed! It was in just the right place for your eyes to find it easily.
You continue to get confused and emotional. I think you thought Steve gave you something – something big … I don’t know what but something like a kidney or some other life saving gift. You get very sad.
We console you and tell you that you are doing a great job of getting better and you are running a big marathon and we are all there with you cheering you on and helping you along the way. After a minute, to take this in you say, in your broken voice, “If I’m running by myself, why do I need anyone else, What good are ya?”
I change the subject to a topic that you are passionate about and that seems to straighten out the lines of thought and words. Next thing I know you have both Steve and Laura signed up for the Cabot Trail Relay. At least you think you do. Actually, I think Steve will definitely commit to running a leg. (Sorry Steve) Now it’s in the journal he can’t back out!
You are getting tired so we leave for some lunch. At A&W (Tara’s choice), our order came to $29.41. Sharp-eyed Quinn noticed this and said “We should make the cost $29.45, because 29 is a very good number and Daddy is 45.” I couldn’t argue with this logic so I got out a few 4 pennies and split them up between Tara and Quinn. Beside the A&W is a water fountain. They each made 2 wishes and threw in the pennies. Now Dinner and Wishes = $29.45 = Another magical number.
When we get back, you feel like talking again but get teary quickly. You feel badly that you can’t help me right now. I tell you that you doing the hardest job – getting better. “You need to keep getting better. We need you. I need you… We need you to be the best parent you can be.” I tell you that “I’m scared”, and you say you are scared too. Tears flow. I tell you that one can be scared and still be brave. We have to help each other to be brave.
The words are a little jumbled, at this point of the day my memory was getting poor but the children recalled you saying: “I have an announcement. Don’t worry if Mummy is late. You should look after her.”
The phone rings, it’s Janice. She called to say that Erica and Jessica did very well in the cross-country race. They placed 8th and 10th – It was a big race. They did very well for their first cross-country race.
On the drive home we review the weekend – highlights, sad moments, the funny things you said. The mood is high for the children. I felt, as I always do on Sunday evenings, like I want to stay by your side. I don’t want to go back to the rest of the world.
Quinn asked Tara if she was scared at the corn maze by herself. “Yeah, I was scared but I just decided to suck it up and be brave.” She said confidently. Quinn didn’t think he could do that. When I pointed out that Tara is two years older and in two years he might be braver, Quinn says “No way”.
Tara and Quinn talk about the next family adventure they want to go on. Sea Kayaking. They both want to go sea kayaking. I know it might be a challenge for you – you weren’t especially excited about the idea before the stroke … but I told the children – “We’ll just have to wait and see how brave Daddy feels.”
When we get home, I realize, I forgot to pick up Annie. As someone pointed out (Mike from the blog), I am a juggler … I am a juggler of duties and roles. I dropped a ball. I expect that when a juggler drops one ball – he has to concentrate extra hard so no other balls well be dropped. That’s how I feel tonight. I’m worried because this week there will be extra balls to juggle. What else will I forget? The fish? The cats? The chickens? The children? Maybe you sense something going to happen because you just warned the children about that possibility. I’m scared and I’m trying to be brave too.
Tonight there is an email for early registering of the 2010 Cabot Trail Relay Race. I forwarded it to Chris and Terry G, who will organize it this year. If you are a reader – who is ‘moved’ enough by Chris’ story to move your butt around the Cabot Trail on May 29 (there’s that magic number…again) and 30th then check out the web site: http://www.cabottrailrelay.com/ and email me ccashen@eastlink.ca . I’ll forward it to Chris and Terry G. Come on … BE BRAVE TOO!
Her throat was sore last night after she got out of the pool, but it might have been too much treated water swallowed.
I was up at 5:30am – I can’t believe how I have become a morning person, especially on days when I are going to visit you. I write in the journal while the children sleep. Quiet mornings are good for reflection. Generally, at night, I try to write in point form what transpired that day – then in the morning, after a good sleep, I reflect and fill in the blanks. That helps me find the meaning to the day. This works well for me and allows me to start the day in a good frame of mind.
When we arrive at the hospital. The nurses are getting you cleaned up and putting you in your chair.
Quinn shows you some of his devil-stick talents and his recently acquired juggling skills. They are still a little rough but, more important, he is not getting frustrated with the mistakes – he just picks them up and starts all over again. You show Quinn a little one-hand trick with a stick that I would be hard pressed to do normally, let alone after a stroke.
Upon seeing this trick, Quinn says “You ARE your son’s father alright for the devil sticks but for driving a car I want to be my father’s son”. (In case you missed that – that was a dig at me … I think.)
I explain to you again how important it is for you to touch and acknowledge your left side. You and Quinn start a new game, where Quinn calls out a left-sided body part (elbow, wrist, knee etc) and you touch it with the devil stick. That seems to work well – I wonder if this has ever been used as a standard physiotherapy procedure. I think it should be. This type of therapy should be conducted by a kid, who loves to giggle, because that really encourages patient participation.
Steve and Laura arrive and say that the weather has suddenly improved. We take you outside to get some sunshine and Vitamin D. I notice, for the first time, that you look rather pale in the sunlight. – Of course you haven’t been outside for 2 months on a sunny day! I expect the sun feels good.
We hang out together and Quinn plays with his devil sticks and Tara plays with Laura’s hair. Quinn almost puts Steve’s eye out with the devil-stick. If you were looking, that would have never happened. I think, that is one of your worst fears. You’d often say, “You’re going to put someone’s eye out with that thing”. – Now it’s a common place statement with the children.
When we get back to the room, you get talkative. Your words don’t make much sense. It’s like there are 2 or 3 different thoughts going on and the words from each are jumbled into an impossible-to-detangle knot. I do find a meaning sometimes, like when you said “Put that Kleenex behind my head and blow it up” The children figured it out – it means - I need another pillow … at least we thought did. Most of the time I can’t untangle the word knot.
Steve shows you what he did with the T-shirt that my coworkers at the animal hospital made for him for the Walk-Run for Hope on the Friday after your stroke. On the back of the shirt it says ‘My Brother Chris Cashen’ followed by a ‘29’. That was cut out from the shirt and mounted and framed. You could read it from the bed! It was in just the right place for your eyes to find it easily.
You continue to get confused and emotional. I think you thought Steve gave you something – something big … I don’t know what but something like a kidney or some other life saving gift. You get very sad.
We console you and tell you that you are doing a great job of getting better and you are running a big marathon and we are all there with you cheering you on and helping you along the way. After a minute, to take this in you say, in your broken voice, “If I’m running by myself, why do I need anyone else, What good are ya?”
I change the subject to a topic that you are passionate about and that seems to straighten out the lines of thought and words. Next thing I know you have both Steve and Laura signed up for the Cabot Trail Relay. At least you think you do. Actually, I think Steve will definitely commit to running a leg. (Sorry Steve) Now it’s in the journal he can’t back out!
You are getting tired so we leave for some lunch. At A&W (Tara’s choice), our order came to $29.41. Sharp-eyed Quinn noticed this and said “We should make the cost $29.45, because 29 is a very good number and Daddy is 45.” I couldn’t argue with this logic so I got out a few 4 pennies and split them up between Tara and Quinn. Beside the A&W is a water fountain. They each made 2 wishes and threw in the pennies. Now Dinner and Wishes = $29.45 = Another magical number.
When we get back, you feel like talking again but get teary quickly. You feel badly that you can’t help me right now. I tell you that you doing the hardest job – getting better. “You need to keep getting better. We need you. I need you… We need you to be the best parent you can be.” I tell you that “I’m scared”, and you say you are scared too. Tears flow. I tell you that one can be scared and still be brave. We have to help each other to be brave.
The words are a little jumbled, at this point of the day my memory was getting poor but the children recalled you saying: “I have an announcement. Don’t worry if Mummy is late. You should look after her.”
The phone rings, it’s Janice. She called to say that Erica and Jessica did very well in the cross-country race. They placed 8th and 10th – It was a big race. They did very well for their first cross-country race.
On the drive home we review the weekend – highlights, sad moments, the funny things you said. The mood is high for the children. I felt, as I always do on Sunday evenings, like I want to stay by your side. I don’t want to go back to the rest of the world.
Quinn asked Tara if she was scared at the corn maze by herself. “Yeah, I was scared but I just decided to suck it up and be brave.” She said confidently. Quinn didn’t think he could do that. When I pointed out that Tara is two years older and in two years he might be braver, Quinn says “No way”.
Tara and Quinn talk about the next family adventure they want to go on. Sea Kayaking. They both want to go sea kayaking. I know it might be a challenge for you – you weren’t especially excited about the idea before the stroke … but I told the children – “We’ll just have to wait and see how brave Daddy feels.”
When we get home, I realize, I forgot to pick up Annie. As someone pointed out (Mike from the blog), I am a juggler … I am a juggler of duties and roles. I dropped a ball. I expect that when a juggler drops one ball – he has to concentrate extra hard so no other balls well be dropped. That’s how I feel tonight. I’m worried because this week there will be extra balls to juggle. What else will I forget? The fish? The cats? The chickens? The children? Maybe you sense something going to happen because you just warned the children about that possibility. I’m scared and I’m trying to be brave too.
Tonight there is an email for early registering of the 2010 Cabot Trail Relay Race. I forwarded it to Chris and Terry G, who will organize it this year. If you are a reader – who is ‘moved’ enough by Chris’ story to move your butt around the Cabot Trail on May 29 (there’s that magic number…again) and 30th then check out the web site: http://www.cabottrailrelay.com/ and email me ccashen@eastlink.ca . I’ll forward it to Chris and Terry G. Come on … BE BRAVE TOO!
Sunday, October 25, 2009
Saturday October 24 – Where is my ‘Can Do’ Attitude?
I am up at 5:30 am, can’t sleep and finally drift off for a brief awhile so I could have a bad dream about loosing the children somewhere. I don’t remember the details but I bet it was inspired by leaving Tara alone in the corn maze in the dark to go find her friends. I didn’t like doing it even though Tara wanted to go in the maze by herself. Quinn was really worried and in tears as we drove off, convinced that he wouldn’t see her again.
I journal for about two hours, pouring my frustrations into the keyboard. Purging. It’s felt good to write. When I read back in the pages, I realize that if I want to keep up the pace with you, I have to stop saying yes to everything for the children. I’m only human and I can’t do-it-all all the time. I have to find other ways to un-stress – but what? I have my work that I love to do; I have great outside support for the children; I have, happily, abandoned all cooking duties and most housekeeping duties and yet still eat well and live in a clean house; I have a weekly schedule – which I find comforting; I am getting seven hours of sleep a night and I feel love and support from family and friends and now I feel your love ... My life should be pretty good. Why do I feel stressed?
I think that I have accepted that I can’t control your outcome from this marathon. That lesson came during the MRSA scare. But I am frustrated that my usual ‘can do’ attitude is being challenged and tested. Tested a lot on days like yesterday. Maybe I need to do something to fix the ‘can do’ attitude. Maybe more exercise. Maybe something radical …mediation maybe.
A client, Gloria, a retired lady, who lives in Canada during the summer and the USA in the winter, told me on my first day back from work but her winter reading. She may be retired but she did not retire her mind. She told me her winter reading, last year, was on the brain. She got a stack of books and tired to learn more about how the noggin works and what are some of the powers that are trapped inside. She had read the ‘My Stroke of Insight’ and ‘How the Brain Heals Itself’ among many others.
She is self-admitted strong left brain thinker. Logic and reason are her friends. (Like me) After all the research she did, she settled on mediation as an area to explore in more detail. Her daughter got her a machine that connects to the computer that helps train one’s mind to mediate.
I’ve tried mediation before. I don’t mediate - I fall asleep or solve problems in my head while assuming a meditative outside appearance. Most of the time, I would just give up and go find something to do. Things like work in the garden and move huge rocks around and wreck my back. I came to the conclusion that I am too left-brain to mediate. Yet my left brain says to me if I can’t find peace in my over-active left – maybe I can find it in my right.
When I get to the hospital room you are dressed and awake. I’m impressed. Heather and Serena are your nurses and I noticed that the floor was short staffed. Usually there are eight nurses covering the floor full of patients but today there are only six. “I don’t mind it being busy, it makes the time fly by” Serena says.
You are quite awake. You are using your normal voice most of the time, although, it sounds like you are overcoming a very bad case of laryngitis. Your voice is rough. It pops and cracks but it is a low normal volume most of the time. I hug you and you hug me – it feels good. I tell you about our last real hug in the kitchen on Aug 29 (57 days ago – our longest hug break ever). I told you how I thought I would never feel your hug again. We both cried.
Serena comes in. She is very capable with a ‘can do’ attitude. She has an easy going way about her. As she catheterizes you she says that she can only do it right handed. She said “The only thing I do with my left, is catch ball.” Turns out she played competitive baseball and was on the provincial team. She doesn’t play now. I mentioned that you played ball – shortstop – she’s impressed.
I noticed that you had some teachers visit yesterday. The teacher’s provincial conference was in Halifax. With your volunteer work at the school, you know a lot of teachers. I’m glad that you had company yesterday. I think it will help define the days better for you.
I have always found it easier to retrieve memories from the hard drive if there was something non-routine about that day. In fact a few days before your stroke, I was sharing that concept with you in reference to family vacations. I had told you that it didn’t matter what we do on a family vacation, as long as it’s something out of the ordinary.
This summer, we didn’t do anything elaborate for vacation time, but we did do some small road trips. Trips like hiking to the river behind out old house looking of fossils. We all have memories of it and those memories will stick in our heads longer then if we have stayed home and mowed the lawn and played in the garden. I felt that a good family vacation is about making lasting feel-good memories.
You tell me that you donated some blood today. – Probably some routine tests. I tell you that I will donate some blood soon too - the next blood donor clinic is next month. You reply that you “are going to sign up for a lot of things.” I said “Things like what”, “Oh blood donor and tongue donor” you reply. I ask what does that mean - tongue donor – Your answer suggests to me you have not lost your twisted sense of humor, which sometimes lives on the edge of, what I think, is good taste. You made me smile and laugh.
I tell you about the PEI Marathon and Half Marathon. Our friend, Edwin placed 7th. I tell you that it was a personal best time for him but he was disappointed with it. With your stronger voice, you want to call him and talk to him. We call Edwin so you could hear first hand his half marathon last weekend why the downer personal best. You are always there to be supportive to other runners. Apparently, that will not stop.
We catch Ed on the road, driving his two youngest girls, Erica and Jessica, to a cross-country race. I think they had planned to run with the number 29 on their shirts. You talk to Edwin and I hold the phone – the call is cell phone to cell phone – the conversation is a bit static-ity and with your cracking voice – a little hard for Edwin to hear you. He does most of the talking and you end the conversation, just like you would with any conversation you had in the past, with “It’s been good talking to you.”
If phone conversations are going to be a common thing, which I think they will with your parents and Steve in Ottawa, then we need a better setup. I am going to look into getting a calling card so we can use the hospital phone.
News of your call traveled fast. Within ten minutes Janice called and is thrilled to talk to you. You don’t have to strain your voice with Janice, she is a extraordinary phone talker. She tells you she feels useless and wishes there was more she can do.
I don’t know what she hopes to do, but I think she has helped a lot so far. Currently, she writes you letters at least every second day - currently we have a binder filling with letters. Every letter she signs off “Never Doubt”.
She ends her monologue with the information that Jaimee is coming to Halifax and will visit you. You ask “Does Jaimee feel useless too?” then you add that she wants to help, she could “smuggle a can of coke in your pants…. with ice.” Janice and I laugh – you are being you – it’s so good to hear.
Steve and Laura arrive as we finish the phone call. Their plane was delayed yesterday. Steve came bearing presents; baseball hat for the Angels Division Champions 2009 and a Dallas Cowboy hat – another favorite team of yours.
You tease Laura, just as you always have, about not being here with Steve when you first had your stroke. You try to guilt her into signing up for a leg in the Cabot Trail Relay team.
You amaze me, you haven’t missed a beat. You were always trying to interest people into running a leg of the race and here you are today, encouraging Edwin with his racing and trying to get Laura started. I am impressed.
We talk a little of the new workshop that you and Jeff (another running friend) built last fall. Our September project was to winterize it and organ-size it and so you could use it this winter. You always like making things. The ideas would be slow to come on initially every fall, but as the leaves fell so did so did the ideas – you would rake them up and by the time Christmas would arrive you would be in full production … like Santa’s workshop. The last few years, you didn’t get to do this – our family demands were getting too time consuming. You didn’t complain, but I think you missed this creative outlet.
Jaimee arrives. You are happy to see her. She is in town to watch a rugby game. She is not playing rugby this year, Janice has convinced her that the broken finger and broken leg is enough of a sacrifice to make to the game. I wonder what your advise would be to Tara is that happened to her. I wonder if she would listen to you. You tire to recruit her for the Cabot Trail Relay Tidal Boars team next May.
You keep this up there will have to be two Cabot Trail Relay races – just to accommodate all the people you are trying to recruit.
Jaimee reminds you of the jewelry bow you made you her and one for each of her sisters. She cherishes it – it got to go to Acadia University with her. She also mentioned all the wooden Christmas trees you made that don their fireplace mantle each year. Trees of all sizes and styles. Every year you would come up with a new way to make a Christmas tree on the lathe.
Once the workshop is insulated and organized, I hope that it will be a place of healing for you. A place where you can exercise your right brain and the left side of your body. A place for you to create treasures. I think it will be a place that could help you heal.
As Jaimee leaves, you look very serious for a moment and say “Don’t do drugs.” I think she took it as a joke. Because I think that’s how you intended it … I think – I still can’t tell most of the time whether you are pulling my leg or serious … even after 22 years.
I re-read the letter from Terri and her day trip to Cooperstown on Setember 29 – I hoped that would trigger a memory for you with your parents two weeks ago. I show you some pictures but I don’t know if you can see then very well. You have asked about your parents, and expressed concern for them.
You are sleeping when we get back but you awake easily to greet us. You are not as bright as this AM and I think you are a little overwhelmed with all the people in your room. It is difficult to hear you – I think we wore you out this morning.
A lot of visitors do wear you out, as the volume in the room increases, you withdraw into your own world. I think it’s too stimulating for you. Sadly this is especially true when the children are here. It gets hard to hear you when the noise level increases.
I put on the Notre Dame against Boston College football game. You are a Notre Dame fan – ‘Play Like Champions Today’ is their motto that you wear on your wrist but today, you are also wearing a Boston shirt. I didn’t point that out to you – You wouldn’t have like the contradiction.
We all say good night and head out to let you rest. Quinn and Tara head to the hotel that Steve and Laura are staying. I go out to search for cheap swim suits – find them and head to the hotel. Laura and the children play happily in the pool for 30 minutes throwing beach balls at each other. Steve and I talk. He is impressed with how far you have come since the ICU days.
Eventually, Laura and the children browbeat Steve into the pool. I watch and think how you would have been right in the middle of the action with balls flying everywhere.
The Angels game cancelled until tomorrow.
Tara is itchy again – I can’t believe there are still lice. I treated her last Sunday. To keep her happy … and me at ease about these parasites I promise to treat her again Sunday night.
It’s a late bedtime. Tara and Quinn eat a bedtime snack. Tara fades off to sleep immediately. Quinn tries to settle to sleep, he reviews his weekly routine after school. It as if he is trying it on for size. I think that is part of his anxiety.
I journal for about two hours, pouring my frustrations into the keyboard. Purging. It’s felt good to write. When I read back in the pages, I realize that if I want to keep up the pace with you, I have to stop saying yes to everything for the children. I’m only human and I can’t do-it-all all the time. I have to find other ways to un-stress – but what? I have my work that I love to do; I have great outside support for the children; I have, happily, abandoned all cooking duties and most housekeeping duties and yet still eat well and live in a clean house; I have a weekly schedule – which I find comforting; I am getting seven hours of sleep a night and I feel love and support from family and friends and now I feel your love ... My life should be pretty good. Why do I feel stressed?
I think that I have accepted that I can’t control your outcome from this marathon. That lesson came during the MRSA scare. But I am frustrated that my usual ‘can do’ attitude is being challenged and tested. Tested a lot on days like yesterday. Maybe I need to do something to fix the ‘can do’ attitude. Maybe more exercise. Maybe something radical …mediation maybe.
A client, Gloria, a retired lady, who lives in Canada during the summer and the USA in the winter, told me on my first day back from work but her winter reading. She may be retired but she did not retire her mind. She told me her winter reading, last year, was on the brain. She got a stack of books and tired to learn more about how the noggin works and what are some of the powers that are trapped inside. She had read the ‘My Stroke of Insight’ and ‘How the Brain Heals Itself’ among many others.
She is self-admitted strong left brain thinker. Logic and reason are her friends. (Like me) After all the research she did, she settled on mediation as an area to explore in more detail. Her daughter got her a machine that connects to the computer that helps train one’s mind to mediate.
I’ve tried mediation before. I don’t mediate - I fall asleep or solve problems in my head while assuming a meditative outside appearance. Most of the time, I would just give up and go find something to do. Things like work in the garden and move huge rocks around and wreck my back. I came to the conclusion that I am too left-brain to mediate. Yet my left brain says to me if I can’t find peace in my over-active left – maybe I can find it in my right.
When I get to the hospital room you are dressed and awake. I’m impressed. Heather and Serena are your nurses and I noticed that the floor was short staffed. Usually there are eight nurses covering the floor full of patients but today there are only six. “I don’t mind it being busy, it makes the time fly by” Serena says.
You are quite awake. You are using your normal voice most of the time, although, it sounds like you are overcoming a very bad case of laryngitis. Your voice is rough. It pops and cracks but it is a low normal volume most of the time. I hug you and you hug me – it feels good. I tell you about our last real hug in the kitchen on Aug 29 (57 days ago – our longest hug break ever). I told you how I thought I would never feel your hug again. We both cried.
Serena comes in. She is very capable with a ‘can do’ attitude. She has an easy going way about her. As she catheterizes you she says that she can only do it right handed. She said “The only thing I do with my left, is catch ball.” Turns out she played competitive baseball and was on the provincial team. She doesn’t play now. I mentioned that you played ball – shortstop – she’s impressed.
I noticed that you had some teachers visit yesterday. The teacher’s provincial conference was in Halifax. With your volunteer work at the school, you know a lot of teachers. I’m glad that you had company yesterday. I think it will help define the days better for you.
I have always found it easier to retrieve memories from the hard drive if there was something non-routine about that day. In fact a few days before your stroke, I was sharing that concept with you in reference to family vacations. I had told you that it didn’t matter what we do on a family vacation, as long as it’s something out of the ordinary.
This summer, we didn’t do anything elaborate for vacation time, but we did do some small road trips. Trips like hiking to the river behind out old house looking of fossils. We all have memories of it and those memories will stick in our heads longer then if we have stayed home and mowed the lawn and played in the garden. I felt that a good family vacation is about making lasting feel-good memories.
You tell me that you donated some blood today. – Probably some routine tests. I tell you that I will donate some blood soon too - the next blood donor clinic is next month. You reply that you “are going to sign up for a lot of things.” I said “Things like what”, “Oh blood donor and tongue donor” you reply. I ask what does that mean - tongue donor – Your answer suggests to me you have not lost your twisted sense of humor, which sometimes lives on the edge of, what I think, is good taste. You made me smile and laugh.
I tell you about the PEI Marathon and Half Marathon. Our friend, Edwin placed 7th. I tell you that it was a personal best time for him but he was disappointed with it. With your stronger voice, you want to call him and talk to him. We call Edwin so you could hear first hand his half marathon last weekend why the downer personal best. You are always there to be supportive to other runners. Apparently, that will not stop.
We catch Ed on the road, driving his two youngest girls, Erica and Jessica, to a cross-country race. I think they had planned to run with the number 29 on their shirts. You talk to Edwin and I hold the phone – the call is cell phone to cell phone – the conversation is a bit static-ity and with your cracking voice – a little hard for Edwin to hear you. He does most of the talking and you end the conversation, just like you would with any conversation you had in the past, with “It’s been good talking to you.”
If phone conversations are going to be a common thing, which I think they will with your parents and Steve in Ottawa, then we need a better setup. I am going to look into getting a calling card so we can use the hospital phone.
News of your call traveled fast. Within ten minutes Janice called and is thrilled to talk to you. You don’t have to strain your voice with Janice, she is a extraordinary phone talker. She tells you she feels useless and wishes there was more she can do.
I don’t know what she hopes to do, but I think she has helped a lot so far. Currently, she writes you letters at least every second day - currently we have a binder filling with letters. Every letter she signs off “Never Doubt”.
She ends her monologue with the information that Jaimee is coming to Halifax and will visit you. You ask “Does Jaimee feel useless too?” then you add that she wants to help, she could “smuggle a can of coke in your pants…. with ice.” Janice and I laugh – you are being you – it’s so good to hear.
Steve and Laura arrive as we finish the phone call. Their plane was delayed yesterday. Steve came bearing presents; baseball hat for the Angels Division Champions 2009 and a Dallas Cowboy hat – another favorite team of yours.
You tease Laura, just as you always have, about not being here with Steve when you first had your stroke. You try to guilt her into signing up for a leg in the Cabot Trail Relay team.
You amaze me, you haven’t missed a beat. You were always trying to interest people into running a leg of the race and here you are today, encouraging Edwin with his racing and trying to get Laura started. I am impressed.
We talk a little of the new workshop that you and Jeff (another running friend) built last fall. Our September project was to winterize it and organ-size it and so you could use it this winter. You always like making things. The ideas would be slow to come on initially every fall, but as the leaves fell so did so did the ideas – you would rake them up and by the time Christmas would arrive you would be in full production … like Santa’s workshop. The last few years, you didn’t get to do this – our family demands were getting too time consuming. You didn’t complain, but I think you missed this creative outlet.
Jaimee arrives. You are happy to see her. She is in town to watch a rugby game. She is not playing rugby this year, Janice has convinced her that the broken finger and broken leg is enough of a sacrifice to make to the game. I wonder what your advise would be to Tara is that happened to her. I wonder if she would listen to you. You tire to recruit her for the Cabot Trail Relay Tidal Boars team next May.
You keep this up there will have to be two Cabot Trail Relay races – just to accommodate all the people you are trying to recruit.
Jaimee reminds you of the jewelry bow you made you her and one for each of her sisters. She cherishes it – it got to go to Acadia University with her. She also mentioned all the wooden Christmas trees you made that don their fireplace mantle each year. Trees of all sizes and styles. Every year you would come up with a new way to make a Christmas tree on the lathe.
Once the workshop is insulated and organized, I hope that it will be a place of healing for you. A place where you can exercise your right brain and the left side of your body. A place for you to create treasures. I think it will be a place that could help you heal.
As Jaimee leaves, you look very serious for a moment and say “Don’t do drugs.” I think she took it as a joke. Because I think that’s how you intended it … I think – I still can’t tell most of the time whether you are pulling my leg or serious … even after 22 years.
I re-read the letter from Terri and her day trip to Cooperstown on Setember 29 – I hoped that would trigger a memory for you with your parents two weeks ago. I show you some pictures but I don’t know if you can see then very well. You have asked about your parents, and expressed concern for them.
You are sleeping when we get back but you awake easily to greet us. You are not as bright as this AM and I think you are a little overwhelmed with all the people in your room. It is difficult to hear you – I think we wore you out this morning.
A lot of visitors do wear you out, as the volume in the room increases, you withdraw into your own world. I think it’s too stimulating for you. Sadly this is especially true when the children are here. It gets hard to hear you when the noise level increases.
I put on the Notre Dame against Boston College football game. You are a Notre Dame fan – ‘Play Like Champions Today’ is their motto that you wear on your wrist but today, you are also wearing a Boston shirt. I didn’t point that out to you – You wouldn’t have like the contradiction.
We all say good night and head out to let you rest. Quinn and Tara head to the hotel that Steve and Laura are staying. I go out to search for cheap swim suits – find them and head to the hotel. Laura and the children play happily in the pool for 30 minutes throwing beach balls at each other. Steve and I talk. He is impressed with how far you have come since the ICU days.
Eventually, Laura and the children browbeat Steve into the pool. I watch and think how you would have been right in the middle of the action with balls flying everywhere.
The Angels game cancelled until tomorrow.
Tara is itchy again – I can’t believe there are still lice. I treated her last Sunday. To keep her happy … and me at ease about these parasites I promise to treat her again Sunday night.
It’s a late bedtime. Tara and Quinn eat a bedtime snack. Tara fades off to sleep immediately. Quinn tries to settle to sleep, he reviews his weekly routine after school. It as if he is trying it on for size. I think that is part of his anxiety.
Friday October 23 – Erupting Volcanos
It’s day 55 of the marathon and I had my first real meltdown. Not a good day for juggling all the balls. The meltdown was only for a moment and partly because Fran was there and the children were not. Fran was there to contain the damage as I erupted from the pressure that had been building up all day, like a volcano.
It seems that all my waking hours are spent on this marathon treadmill that is going slightly faster then I can go. I have to keep planning every minute to maintain the maximum efficiency through out of the day. There has been no down time. No days off. Just GO-GO-GO. I am tired.
I don’t want to say to the children, “No we can’t do this or we can’t do that because we are visiting Daddy this weekend.” I don’t want the children feeling resentment and guilt about being dragged to Halifax every weekend. The have been missing things like a friend sleepovers, having a lights-out night and play games in front of the fire, watch a movie together, play in a big pile of leaves like we have in the past, have a friend over.
So today, being an school in service day and each of them being invited to a birthday party, I thought I should let them do these fun things instead of packing them up for a trip to Halifax. I thought you would agree.
My sister, Fran, and your brother and wife, Steve and Laura are coming to Halifax too.
Last month the back seat to the van broke making it a 5 passenger van not a seven passenger van. I never bothered to get it fixed but now I regret it. If the children are going to stay in Truro with Juanita, she will need it to accommodate all the chidren.
I knew it would be a busy day. I prepared for work and packed more for the weekend. I got the children packed for an overnighter at Juanita’s. Birthday presents are organized for the two parties, pack for Annie to stay with her dogfriend, Indy, arrange to get the van seat fixed so the van can hold seven passengers again, get the chickens safe for the weekend, get ready for work and, finally, go to Halifax. Now I see it it in writing I can understand why I’m tired.
In addition to all this, there were all the complications. Nothing went right. I drive the children to Juanita’s at 7:45 am but Quinn forgot his raincoat, had go back and get it along with a booster seat. I drop the van off at the Toyota dealer but they don’t think they will be able to fit it in today – they are short staffed today and can’t guarantee that they can do it today. Out of desperation, I play the ‘my husband is very sick in the hospital and I must have a van for family to go see him’ card. I hadn’t done this before but it did get results – they promise to try to look at the van.
I did all this and actually got to work just in time for my first appointment. Work was busy – thank God – Kept my mind off the rest of me whirlwind day.
At work, I find out that Melissa, my newest coworker vet, is pregnant with twins! She feels well and thinks she can work until Jan, but after that, the practice is going to be short-staffed with vets this winter. I might need to work longer hours.
After work, I loose the cell phone. I try calling it – no luck. I call work and put on hold. Then after a few frantic minutes, I find it – it’s there. The children want to stay in Truro, then Quinn changes his mind and wants to go to Halifax with me, and Toyota couldn’t fix the van seat.
They suggest, I look at an auto salvage. I did and I found a previously owned seat – it’s tan not grey, but really, who cares – it’s just a car. “Please save it for me – I’ll be there by 4:30.” I gave my name. After a busy day at work, I get to the autosalvage – the seat is still in the wrecked van in the lot! Great, I have to go out into the very muddy and rather dangerous looking car lot and look for it. It’s covered in mud – I don’t care.
The young man, who clearly loves playing with dirty old broken cars, can’t get the seat free of the van. It’s supposed to be easy – lift the lever and pull – but no, one of the locks is jammed. I’m preparing to give up – he is not – he pushes and pulls, twists and teases – the seat won’t budge. He gets out a very long screwdriver and starts to pry the hinge. Great, I think to myself cynically – the ‘man approach’ – he is going to muscle it and break the stupid thing.
He works at it, while I swear inside my head about how the day has had too many un-welcomed twists. He gets it free! I take back the ‘man approach’ comment and now I’m thankful for it.
The non-repair repair bill from Toyota = $32.00.
A real seat – very dirty and (now) soaked with WD40 = $75.00.
A functioning seven-passenger van that can drive to Hailfax to see you … priceless.
Three hours out of my life for that car seat – it better not disappoint me.
Quinn gets to his friend’s, Declan, a skating party … late and without a coat!
Tara gets to her friend’s Madeline, a corn maze party … late.
On the drive to the corn maze, I swear at the driver in front of the car. I was just re-directing my frustrations and try to explain it to the children. Tara’s reply was “You shouldn’t do that because Daddy does and he always gets stuck behind slow people and trains. You never swear usually and you never get stuck in those situations.” She adds “You need to un-stress Mum, you are not as good as driver as Daddy you will get us in an accident.”
Tara is late and bravely goes into the corn maze herself to look for her friends, it’s after dark and they had a 15 minutes head start. I asked her “Are you OK to do this by yourself in the dark?” “Yes Mummy, I can do it.” She replied with determination.
I guess being independent can be an advantage at times.
At least, in the end, they both had fun. I guess that makes the day worth it.
At the time of my emotional eruption, Quinn was feeling sad and was unsure if he wanted to stay in Truro with Juanita. I was almost ready to flip out – all that running about – three hours of my day lost to get a seat for the van and now Quinn wants to go to Halifax with me – If I had known that I wouldn’t need to fix the van.
I suppose that having the van fixed will be helpful in the future. It will allow Juanita to be able to help out easier, because with her 2 children and my two – she needs 4 child friendly seats – It has to be the van.
Quinn is so empathetic. My feelings go to him and his to me. It’s a vicious cycle – I’m going to have to be better at dealing with my stress. Or Un-Stressing, as Tara calls it.
This fall we were talking about getting a new car to replace the van, which is 10 years old this month. You were especially interested in getting a new vehicle before May 2010. This is when the next Cabot Trail Relay Race is and you wanted a big reliable car for driving runners around the course. I was a little more practical and thought a Mazda 5 would be good. I’m glad that we didn’t get too far with that project. We don’t know what type of car will fit your needs, at this time.
Tara worked at the vet hospital again, for about an hour, under Joye’s watchful eye. She learned about white blood cells. The respect I got yesterday has evaporated and she wants me to pretend that she’s not there. Really, she wants to pretend I’m not there – she is getting dangerously close to the teenager, who is embarrassed-about-her-parents stage. Great – I’m really not ready for this – Thank God I still have cuddly Quinn. I don’t want him to grow up.
Steve and Laura are supposed to arrive today. When I get to your room, finally at 8:30pm, you say you hadn’t seen them yet. But you were very emotional and maybe you don’t remember.
You are sad because, Courtney, your nurse, asked you why 29, what is so special about that number.(she saw your gold 29 on your chain). It’s her birth day. She likes the number too. She shares with you a personal story about 29 and a casino. You are overwhelmed with feelings.
You are so emotional, you talk in your normal voice volume. I suggest what you are feeling to help you get the feelings out. “Are you in pain? Are you sad?” “Yes” you say “I’m in pain and sad and … injured.”
After this melt down and your eruption, your whisper voice comes back and you are tired. I read you a letter from Martha (old friend from high school and fellow runner). And I read the account of the Angels game from last night. They won 7-6. Next game is Saturday. You fall asleep.
I guess I’m entitled to at least one bad day … and so are you.
Tomorrow is another day.
It seems that all my waking hours are spent on this marathon treadmill that is going slightly faster then I can go. I have to keep planning every minute to maintain the maximum efficiency through out of the day. There has been no down time. No days off. Just GO-GO-GO. I am tired.
I don’t want to say to the children, “No we can’t do this or we can’t do that because we are visiting Daddy this weekend.” I don’t want the children feeling resentment and guilt about being dragged to Halifax every weekend. The have been missing things like a friend sleepovers, having a lights-out night and play games in front of the fire, watch a movie together, play in a big pile of leaves like we have in the past, have a friend over.
So today, being an school in service day and each of them being invited to a birthday party, I thought I should let them do these fun things instead of packing them up for a trip to Halifax. I thought you would agree.
My sister, Fran, and your brother and wife, Steve and Laura are coming to Halifax too.
Last month the back seat to the van broke making it a 5 passenger van not a seven passenger van. I never bothered to get it fixed but now I regret it. If the children are going to stay in Truro with Juanita, she will need it to accommodate all the chidren.
I knew it would be a busy day. I prepared for work and packed more for the weekend. I got the children packed for an overnighter at Juanita’s. Birthday presents are organized for the two parties, pack for Annie to stay with her dogfriend, Indy, arrange to get the van seat fixed so the van can hold seven passengers again, get the chickens safe for the weekend, get ready for work and, finally, go to Halifax. Now I see it it in writing I can understand why I’m tired.
In addition to all this, there were all the complications. Nothing went right. I drive the children to Juanita’s at 7:45 am but Quinn forgot his raincoat, had go back and get it along with a booster seat. I drop the van off at the Toyota dealer but they don’t think they will be able to fit it in today – they are short staffed today and can’t guarantee that they can do it today. Out of desperation, I play the ‘my husband is very sick in the hospital and I must have a van for family to go see him’ card. I hadn’t done this before but it did get results – they promise to try to look at the van.
I did all this and actually got to work just in time for my first appointment. Work was busy – thank God – Kept my mind off the rest of me whirlwind day.
At work, I find out that Melissa, my newest coworker vet, is pregnant with twins! She feels well and thinks she can work until Jan, but after that, the practice is going to be short-staffed with vets this winter. I might need to work longer hours.
After work, I loose the cell phone. I try calling it – no luck. I call work and put on hold. Then after a few frantic minutes, I find it – it’s there. The children want to stay in Truro, then Quinn changes his mind and wants to go to Halifax with me, and Toyota couldn’t fix the van seat.
They suggest, I look at an auto salvage. I did and I found a previously owned seat – it’s tan not grey, but really, who cares – it’s just a car. “Please save it for me – I’ll be there by 4:30.” I gave my name. After a busy day at work, I get to the autosalvage – the seat is still in the wrecked van in the lot! Great, I have to go out into the very muddy and rather dangerous looking car lot and look for it. It’s covered in mud – I don’t care.
The young man, who clearly loves playing with dirty old broken cars, can’t get the seat free of the van. It’s supposed to be easy – lift the lever and pull – but no, one of the locks is jammed. I’m preparing to give up – he is not – he pushes and pulls, twists and teases – the seat won’t budge. He gets out a very long screwdriver and starts to pry the hinge. Great, I think to myself cynically – the ‘man approach’ – he is going to muscle it and break the stupid thing.
He works at it, while I swear inside my head about how the day has had too many un-welcomed twists. He gets it free! I take back the ‘man approach’ comment and now I’m thankful for it.
The non-repair repair bill from Toyota = $32.00.
A real seat – very dirty and (now) soaked with WD40 = $75.00.
A functioning seven-passenger van that can drive to Hailfax to see you … priceless.
Three hours out of my life for that car seat – it better not disappoint me.
Quinn gets to his friend’s, Declan, a skating party … late and without a coat!
Tara gets to her friend’s Madeline, a corn maze party … late.
On the drive to the corn maze, I swear at the driver in front of the car. I was just re-directing my frustrations and try to explain it to the children. Tara’s reply was “You shouldn’t do that because Daddy does and he always gets stuck behind slow people and trains. You never swear usually and you never get stuck in those situations.” She adds “You need to un-stress Mum, you are not as good as driver as Daddy you will get us in an accident.”
Tara is late and bravely goes into the corn maze herself to look for her friends, it’s after dark and they had a 15 minutes head start. I asked her “Are you OK to do this by yourself in the dark?” “Yes Mummy, I can do it.” She replied with determination.
I guess being independent can be an advantage at times.
At least, in the end, they both had fun. I guess that makes the day worth it.
At the time of my emotional eruption, Quinn was feeling sad and was unsure if he wanted to stay in Truro with Juanita. I was almost ready to flip out – all that running about – three hours of my day lost to get a seat for the van and now Quinn wants to go to Halifax with me – If I had known that I wouldn’t need to fix the van.
I suppose that having the van fixed will be helpful in the future. It will allow Juanita to be able to help out easier, because with her 2 children and my two – she needs 4 child friendly seats – It has to be the van.
Quinn is so empathetic. My feelings go to him and his to me. It’s a vicious cycle – I’m going to have to be better at dealing with my stress. Or Un-Stressing, as Tara calls it.
This fall we were talking about getting a new car to replace the van, which is 10 years old this month. You were especially interested in getting a new vehicle before May 2010. This is when the next Cabot Trail Relay Race is and you wanted a big reliable car for driving runners around the course. I was a little more practical and thought a Mazda 5 would be good. I’m glad that we didn’t get too far with that project. We don’t know what type of car will fit your needs, at this time.
Tara worked at the vet hospital again, for about an hour, under Joye’s watchful eye. She learned about white blood cells. The respect I got yesterday has evaporated and she wants me to pretend that she’s not there. Really, she wants to pretend I’m not there – she is getting dangerously close to the teenager, who is embarrassed-about-her-parents stage. Great – I’m really not ready for this – Thank God I still have cuddly Quinn. I don’t want him to grow up.
Steve and Laura are supposed to arrive today. When I get to your room, finally at 8:30pm, you say you hadn’t seen them yet. But you were very emotional and maybe you don’t remember.
You are sad because, Courtney, your nurse, asked you why 29, what is so special about that number.(she saw your gold 29 on your chain). It’s her birth day. She likes the number too. She shares with you a personal story about 29 and a casino. You are overwhelmed with feelings.
You are so emotional, you talk in your normal voice volume. I suggest what you are feeling to help you get the feelings out. “Are you in pain? Are you sad?” “Yes” you say “I’m in pain and sad and … injured.”
After this melt down and your eruption, your whisper voice comes back and you are tired. I read you a letter from Martha (old friend from high school and fellow runner). And I read the account of the Angels game from last night. They won 7-6. Next game is Saturday. You fall asleep.
I guess I’m entitled to at least one bad day … and so are you.
Tomorrow is another day.
Thursday October 22 – Guide and Teach
I woke at 5:30am. I can’t sleep – I’m almost giddy thinking about seeing you and what new things you might discover. It’s like a date… A long over due date. The past two months we have spent more time together then we have in a very long time – too bad you weren’t here for most of it – but you ARE here now – and I have so much to share.
At breakfast, I was humming a tune and Tara spoke up and said something I have been hearing a lot of lately, “Mummy, you are off key, please don’t sing, hum or whistle.” Tara has been critical of Quinn’s singing efforts lately too. I take the criticism in stride, but it breaks my heart when Tara is critical of Quinn’s attempt at music.
I tell her of my experience, when I was a child, when I was told I was off key. I told her that I wish I had ignored the comments – no matter how well intended to help me. I wished I continued to try because maybe I would have gotten better. Now, I’m afraid my old brain doesn’t take in music like other people. I really can’t sing. A self-fulfilling prophecy. I suggested ways that she could mentor Quinn. “Guide him and teach him.” I said. I don’t know if she took it in.
I drive in with Megan. We talk about how depression can effect your recovery and how that worries me. You have a lot of things to be worried about, plus the chemical soup that is in your head of neurotransmitters and are all out of balance. It will give you more reason to slip into the darkness. I don’t want to lose you there. I really want to find out about early intervention.
You are resting, when I get to you but wake up easily when Physio Jill and Steve come into your room. Jill says that she was noticed some clonus (I think she said). A sort of muscle spasm that involves groups of muscles. It can cause pain. You have been started on a new drug called bactlofen to help with the pain.
She points out how separated the shoulder joint is on the left side. The joint is very fragile right now. We will have to be careful of the position it is in when rest it.
Sitting on the edge of the bed, you lift your head up and moved to the left slowly but smoothly. You also balanced your torso for 30 second intervals! Balance is another thing to get back. You did some elbow push-ups on each side. That wears you out.
Jill has noted far more tone in you arm/fingers and leg, even flexor withdraw – the natural instinct one has to withdraw from pain. It’s a good sign. The clonus isn’t good. Maybe it’s part of the healing process too?
You had bone scan yesterday and other tests – the nurse is going to look for the results.
Steve and Jill put you in your chair.
Sue and Shirley make an appearance. They wanted to do another swallow assessment with vanilla pudding – you take the spoon yourself and put it in your mouth – there is a short delay and then 3 swallows and you are done – no cough and your mouth is empty. You repeat this with half a tub of pudding. You passed the test but this is just the initial screening test. They will book you for a fluoroscopic swallow on Monday!
You asked Shirley and Sue for a coke, some chips or fries, extra large 4x4 Timmy’s coffee and spaghetti. “No, you can’t yet” Shirley explains “Your swallow is still weak and thickened liquid is the safest. We start with thickened liquids and the move up to harder textures and finally liquids.” She says that you should have faith; the graduation from one texture to the next usually speeds up.
You and Shirley settle on a compromise. Shirley promises that she would buy you lunch on Monday. Little do you know now that the ‘lunch’ well be flavoured barium!
Your voice popped out a few times while talking with Sue – she’s impressed – in fact she is speechless – quite a feat to make a speech therapist speechless. You still have your touch.
After they left, I asked how did the pudding taste after 54 days without food – you didn’t like it initially but by the 2nd or 3rd spoonful – it was good. I wonder if the taste part of your brain has to wake up too and stretch itself. Does the taste perception part talk to another part of the brain that gives you cravings like the Coke?
I believe your withdraw from Coke has been another record. It’s been at least 54 days. Perhaps longer, because you were cutting back on your Coke consumption to allow for some weight loss before the fall marathon season started.
Recently, until the stroke, you would reward yourself with a Coke after a good run or a race. You may have planned to drink a Coke the afternoon of your stroke. I don’t think you did, because I didn’t find the can in the kitchen sink, where you usually put it, when you were done.
When you are able to drink Coke, I think you will deserve it. Consider it to be a ‘water stop’ on your Addiction to Life Marathon.
You were only in your chair for an hour before the pain became so great you wanted back in bed. This pain is going to interfere with the timely move to the rehab hospital.
You want drugs. I think you are starting to understand that you have to ask for drugs if you have pain. I had explained that prn dosing (nurse lingo) means: give as needed or in your case as requested. So you need to request it. “Just say you are in pain. The nurse will help you.” I guide you.
Heather, your nurse today, is a runner too. Her father and mother are runners and have traveled to Florida, New York and Boston for marathons. She hopes someday to make it to Boston too. Heather had you as a patient in the step down unit. More then a month ago. She sees a big improvement in your health since then.
I tell you that Terry and Chris G are going to organize the 2010 Cabot Trail Relay race team in your honour. They figure, because you have inspired so many people to run, there will be more then one team. I don’t know what the teams will be called. My vet-mind suggests Tidal Boars, Tidal Sows and Tidal Piglets. I expect you will have more inspired ideas.
A few years ago, you came up with the Tidal Boars name for the team. You persuaded Ashley, a very talented co-worker of mine at the animal hospital, to make a cartoon logo of a ‘Cool boar, wearing shades with a surf board, surfing a wave’ – She did a great job and the mission to boar-ify your team began.
To go with it, the ‘T’ in Tidal Boars has a wave on the top part of it. You and Chris G took the planning of the Tidal Boar team very seriously. You ordered in boar face-masks from England. You made up a ‘Boars on Board’ sign that resembles the Baby on Board sign. Chris G found some Boar medallions. (Actually, I think, they were for the Chinese year of the pig). You even got coats and hoodies made up with the logo and teammates names.
This obsession, with all things boar, went on for 6 months before the race. But I think you loved to do it.
The bone scan yesterday didn’t go well. Technical difficulties that involved your full bladder. Today they plan to place an indwelling catheter and maintain it until the bone scan is done.
You get on a stretcher and are whisked away to get your bone scan.
When you get back, the porter puts you back in bed. You have been growing a beard the last week. In the past, this was either a sign of the season or the start to a mission like training for a race. I am comforted by the knowledge that you want a beard. However it may have less to do with your resolve to get better and more to do with the quality of razors that are used in the hospital.
With your weight loss, your face has taken on a slight thin chiseled look lately. I think that between that and your newly grown in hair – you are looking pretty good.
You ask me to sleep with you – I lay my head down for a little while.
A little while later, Barb, the social worker came for a visit. She asked you about running every day. You whisper “I have an addictive nature – I worry that if I don’t do one day –it will be easier to give myself permission to skip other days.” You are looking a little sad after saying this – perhaps you have realized your streak has ended and may not start again. You felt you let us down.
You are struggling with where you are right now.
Sensing your distress, she gently reminds you about the last time you talked to her a few weeks ago. “I want to live” you said then. I want to live – important words to remind you of.
It’s time for me to go home. You were getting emotional about seeing me leave. Just as I was saying goodbye, Jay, the minister from the church, walks in the door I’m thankful that he visited. Now I don’t feel so bad about leaving you while you are awake.
You greet Jay warmly. And as Marsha and I leave, the two of you talk together.
At the children’s music lesson, Chella has a new song for Tara to sing, ‘The Rainbow Connection’. Tara is excited to take it on and has most of the words down already. Chella didn’t realize that ‘The Rainbow Connection’ had already entered our lives twice this past week!
After dinner Tara showed how she nailed down the singing-mentor coach role in the family. While Quinn was absent-mindedly singing ‘Do Re Me’, Tara remarked “Wow Quinn that’s really good!” Tara glowed. “That is REALLY good!” Quinn beamed and sang some more. Tara and I both beamed too – It felt good.
We put up the worry wall by Quinn’s bed. Quinn drew a picture of you and your grave. Your eyes have X’s on them. I ask him if he is still worried about this – he says “Yes … Anything can happen!” I quietly suggest that when he stops worrying that you might die – he could erase the picture. He agreed “Yep, but only when Daddy comes home.”
Quinn picks out the ‘Terry Fox and the Marathon of Hope’ story book for bedtime reading. Oh boy – it was tough to read it and not cry.
After the children are in bed, I spend a crazy night packing for Tara and Quinn and me for the weekend. It’s a busy weekend. There is no school on Friday, two birthday parties, Fran is arriving for the weekend and so are Steve and Laura plus I have to get the van fixed. There is a lot of planning and packing for this.
At breakfast, I was humming a tune and Tara spoke up and said something I have been hearing a lot of lately, “Mummy, you are off key, please don’t sing, hum or whistle.” Tara has been critical of Quinn’s singing efforts lately too. I take the criticism in stride, but it breaks my heart when Tara is critical of Quinn’s attempt at music.
I tell her of my experience, when I was a child, when I was told I was off key. I told her that I wish I had ignored the comments – no matter how well intended to help me. I wished I continued to try because maybe I would have gotten better. Now, I’m afraid my old brain doesn’t take in music like other people. I really can’t sing. A self-fulfilling prophecy. I suggested ways that she could mentor Quinn. “Guide him and teach him.” I said. I don’t know if she took it in.
I drive in with Megan. We talk about how depression can effect your recovery and how that worries me. You have a lot of things to be worried about, plus the chemical soup that is in your head of neurotransmitters and are all out of balance. It will give you more reason to slip into the darkness. I don’t want to lose you there. I really want to find out about early intervention.
You are resting, when I get to you but wake up easily when Physio Jill and Steve come into your room. Jill says that she was noticed some clonus (I think she said). A sort of muscle spasm that involves groups of muscles. It can cause pain. You have been started on a new drug called bactlofen to help with the pain.
She points out how separated the shoulder joint is on the left side. The joint is very fragile right now. We will have to be careful of the position it is in when rest it.
Sitting on the edge of the bed, you lift your head up and moved to the left slowly but smoothly. You also balanced your torso for 30 second intervals! Balance is another thing to get back. You did some elbow push-ups on each side. That wears you out.
Jill has noted far more tone in you arm/fingers and leg, even flexor withdraw – the natural instinct one has to withdraw from pain. It’s a good sign. The clonus isn’t good. Maybe it’s part of the healing process too?
You had bone scan yesterday and other tests – the nurse is going to look for the results.
Steve and Jill put you in your chair.
Sue and Shirley make an appearance. They wanted to do another swallow assessment with vanilla pudding – you take the spoon yourself and put it in your mouth – there is a short delay and then 3 swallows and you are done – no cough and your mouth is empty. You repeat this with half a tub of pudding. You passed the test but this is just the initial screening test. They will book you for a fluoroscopic swallow on Monday!
You asked Shirley and Sue for a coke, some chips or fries, extra large 4x4 Timmy’s coffee and spaghetti. “No, you can’t yet” Shirley explains “Your swallow is still weak and thickened liquid is the safest. We start with thickened liquids and the move up to harder textures and finally liquids.” She says that you should have faith; the graduation from one texture to the next usually speeds up.
You and Shirley settle on a compromise. Shirley promises that she would buy you lunch on Monday. Little do you know now that the ‘lunch’ well be flavoured barium!
Your voice popped out a few times while talking with Sue – she’s impressed – in fact she is speechless – quite a feat to make a speech therapist speechless. You still have your touch.
After they left, I asked how did the pudding taste after 54 days without food – you didn’t like it initially but by the 2nd or 3rd spoonful – it was good. I wonder if the taste part of your brain has to wake up too and stretch itself. Does the taste perception part talk to another part of the brain that gives you cravings like the Coke?
I believe your withdraw from Coke has been another record. It’s been at least 54 days. Perhaps longer, because you were cutting back on your Coke consumption to allow for some weight loss before the fall marathon season started.
Recently, until the stroke, you would reward yourself with a Coke after a good run or a race. You may have planned to drink a Coke the afternoon of your stroke. I don’t think you did, because I didn’t find the can in the kitchen sink, where you usually put it, when you were done.
When you are able to drink Coke, I think you will deserve it. Consider it to be a ‘water stop’ on your Addiction to Life Marathon.
You were only in your chair for an hour before the pain became so great you wanted back in bed. This pain is going to interfere with the timely move to the rehab hospital.
You want drugs. I think you are starting to understand that you have to ask for drugs if you have pain. I had explained that prn dosing (nurse lingo) means: give as needed or in your case as requested. So you need to request it. “Just say you are in pain. The nurse will help you.” I guide you.
Heather, your nurse today, is a runner too. Her father and mother are runners and have traveled to Florida, New York and Boston for marathons. She hopes someday to make it to Boston too. Heather had you as a patient in the step down unit. More then a month ago. She sees a big improvement in your health since then.
I tell you that Terry and Chris G are going to organize the 2010 Cabot Trail Relay race team in your honour. They figure, because you have inspired so many people to run, there will be more then one team. I don’t know what the teams will be called. My vet-mind suggests Tidal Boars, Tidal Sows and Tidal Piglets. I expect you will have more inspired ideas.
A few years ago, you came up with the Tidal Boars name for the team. You persuaded Ashley, a very talented co-worker of mine at the animal hospital, to make a cartoon logo of a ‘Cool boar, wearing shades with a surf board, surfing a wave’ – She did a great job and the mission to boar-ify your team began.
To go with it, the ‘T’ in Tidal Boars has a wave on the top part of it. You and Chris G took the planning of the Tidal Boar team very seriously. You ordered in boar face-masks from England. You made up a ‘Boars on Board’ sign that resembles the Baby on Board sign. Chris G found some Boar medallions. (Actually, I think, they were for the Chinese year of the pig). You even got coats and hoodies made up with the logo and teammates names.
This obsession, with all things boar, went on for 6 months before the race. But I think you loved to do it.
The bone scan yesterday didn’t go well. Technical difficulties that involved your full bladder. Today they plan to place an indwelling catheter and maintain it until the bone scan is done.
You get on a stretcher and are whisked away to get your bone scan.
When you get back, the porter puts you back in bed. You have been growing a beard the last week. In the past, this was either a sign of the season or the start to a mission like training for a race. I am comforted by the knowledge that you want a beard. However it may have less to do with your resolve to get better and more to do with the quality of razors that are used in the hospital.
With your weight loss, your face has taken on a slight thin chiseled look lately. I think that between that and your newly grown in hair – you are looking pretty good.
You ask me to sleep with you – I lay my head down for a little while.
A little while later, Barb, the social worker came for a visit. She asked you about running every day. You whisper “I have an addictive nature – I worry that if I don’t do one day –it will be easier to give myself permission to skip other days.” You are looking a little sad after saying this – perhaps you have realized your streak has ended and may not start again. You felt you let us down.
You are struggling with where you are right now.
Sensing your distress, she gently reminds you about the last time you talked to her a few weeks ago. “I want to live” you said then. I want to live – important words to remind you of.
It’s time for me to go home. You were getting emotional about seeing me leave. Just as I was saying goodbye, Jay, the minister from the church, walks in the door I’m thankful that he visited. Now I don’t feel so bad about leaving you while you are awake.
You greet Jay warmly. And as Marsha and I leave, the two of you talk together.
At the children’s music lesson, Chella has a new song for Tara to sing, ‘The Rainbow Connection’. Tara is excited to take it on and has most of the words down already. Chella didn’t realize that ‘The Rainbow Connection’ had already entered our lives twice this past week!
After dinner Tara showed how she nailed down the singing-mentor coach role in the family. While Quinn was absent-mindedly singing ‘Do Re Me’, Tara remarked “Wow Quinn that’s really good!” Tara glowed. “That is REALLY good!” Quinn beamed and sang some more. Tara and I both beamed too – It felt good.
We put up the worry wall by Quinn’s bed. Quinn drew a picture of you and your grave. Your eyes have X’s on them. I ask him if he is still worried about this – he says “Yes … Anything can happen!” I quietly suggest that when he stops worrying that you might die – he could erase the picture. He agreed “Yep, but only when Daddy comes home.”
Quinn picks out the ‘Terry Fox and the Marathon of Hope’ story book for bedtime reading. Oh boy – it was tough to read it and not cry.
After the children are in bed, I spend a crazy night packing for Tara and Quinn and me for the weekend. It’s a busy weekend. There is no school on Friday, two birthday parties, Fran is arriving for the weekend and so are Steve and Laura plus I have to get the van fixed. There is a lot of planning and packing for this.
Thursday, October 22, 2009
Wednesday October 21 - Play like a champion today
With the days getting fuller with your wakefulness I will have less time to write in the journal. It will be a challenge to write every day. Days like today, where I’m not in Halifax visiting you, the entry will be have to short.
Tara has her appointment with Dr. Bell. She wanted me to do all the talking. Odd for her, but talking to a doctor maybe a little intimidating at her age. I start to explain Tara’s problem, but – apparently I did a bad job – so Tara felt compelled to step into the conversation quite effectively. She describes her concerns. Dr. Bell checks her over.
Tara has been convinced by classmates that she has asthma. I sincerely doubt it – so does Dr. Bell. After the appointment, Tara describes to me how the hand sanitizers at school are very irritating to her upper respiratory tract. She didn’t feel comfortable to say this to Dr. Bell.
Now she is upset that no one believes her. Is this her way of seeking attention? I promise her that I will do some research and see if there is any information on the health effects of hand sanitizes on the respiratory tract. I wonder if there may be some sort of adverse reaction to the artificial scents in hand sanitizer.
Tara came to work with me in the morning to wait for her Dr’s appointment. She was bored and sulky initially, but Joye, the technician, took her under her wing and showed her some things in the lab. The next thing I knew, she was quizzing me about hemoglobin and serum. I’m not sure who was more impressed. Me, because she asked some intelligent questions about blood tests or her because I knew some of the answers.
I don’t know what Tara thinks I do at the animal hospital but she seems to enjoy testing me! I will continue to try to win her respect.
Yesterday, at one point, when I was reading to you, you said, “I want to die.” I don’t know if this was just an expression of frustration at the physical pain that you have or the darker emotional pain. Certainly, I can believe that the emotional pain is smothering you at this time. There is so much to take in and you are so ill equipped to process it now.
Technically, I suppose this would be called grief. This week and probably the weeks to come grief will flow over you like a tsunami wave. Just it did to us almost 2 months ago. I wonder aloud to the nurse, outside your room, “At what point does the medical community assume that the grief has grown into depression? Are there any studies that have looked at how to prevent this very real outcome?” She says that she will ask the floor doctor to talk to me about this concern.
I understand that depression is a very common result of brain injury. If depression sets in - at the intense rehab stage of recovery – I would think that it would result in a poor outcome that will only get worse. Maybe depression is part of recovery – a necessary component – like in the stages of grief. Like a skin blister after sunburn. Painful but part of the healing process.
Logically, to me I think that preventive medicine is the ticket for avoiding extensive grief. You may wear a bracelet that says, ‘Play Like a Champion Today’, The Notre Dame Fighting Irish chant, but that attitude can only carry you so far through depression.
When we get home, we have another go at the pumpkins and while we were outside I thought I could hear raccoons chortling at each other. I got concerned for the chickens – I know the outside pen is not raccoon proof. Until I can make it safe I thought I better bring the chickens into the garage for the night.
Quinn finished his small pumpkin tonight. It has four clown faces on it – one on each side. He is quite pound of it. Tara is a little frustrated carving hers. She made a very detailed drawing of a cartoon like vampire.
According to her our craving tools ‘suck’. I thought the old jig saw blades worked pretty well. She feels that they have butchered her pumpkin. Her perfectionist attitude will serve her well later in life, but we have to think of ways to get her to lighten up a bit about the small stuff – or else she will make herself unhappy..
She abandons the pumpkin and starts her math duotang costume. She spends the rest of the night happily drawing up plans for the costume and cutting cardboard. I think she has found her artistic medium.
She is your daughter – passionate, intense and going to do it right – she ‘Plays like a champion today’ too.
Tara has her appointment with Dr. Bell. She wanted me to do all the talking. Odd for her, but talking to a doctor maybe a little intimidating at her age. I start to explain Tara’s problem, but – apparently I did a bad job – so Tara felt compelled to step into the conversation quite effectively. She describes her concerns. Dr. Bell checks her over.
Tara has been convinced by classmates that she has asthma. I sincerely doubt it – so does Dr. Bell. After the appointment, Tara describes to me how the hand sanitizers at school are very irritating to her upper respiratory tract. She didn’t feel comfortable to say this to Dr. Bell.
Now she is upset that no one believes her. Is this her way of seeking attention? I promise her that I will do some research and see if there is any information on the health effects of hand sanitizes on the respiratory tract. I wonder if there may be some sort of adverse reaction to the artificial scents in hand sanitizer.
Tara came to work with me in the morning to wait for her Dr’s appointment. She was bored and sulky initially, but Joye, the technician, took her under her wing and showed her some things in the lab. The next thing I knew, she was quizzing me about hemoglobin and serum. I’m not sure who was more impressed. Me, because she asked some intelligent questions about blood tests or her because I knew some of the answers.
I don’t know what Tara thinks I do at the animal hospital but she seems to enjoy testing me! I will continue to try to win her respect.
Yesterday, at one point, when I was reading to you, you said, “I want to die.” I don’t know if this was just an expression of frustration at the physical pain that you have or the darker emotional pain. Certainly, I can believe that the emotional pain is smothering you at this time. There is so much to take in and you are so ill equipped to process it now.
Technically, I suppose this would be called grief. This week and probably the weeks to come grief will flow over you like a tsunami wave. Just it did to us almost 2 months ago. I wonder aloud to the nurse, outside your room, “At what point does the medical community assume that the grief has grown into depression? Are there any studies that have looked at how to prevent this very real outcome?” She says that she will ask the floor doctor to talk to me about this concern.
I understand that depression is a very common result of brain injury. If depression sets in - at the intense rehab stage of recovery – I would think that it would result in a poor outcome that will only get worse. Maybe depression is part of recovery – a necessary component – like in the stages of grief. Like a skin blister after sunburn. Painful but part of the healing process.
Logically, to me I think that preventive medicine is the ticket for avoiding extensive grief. You may wear a bracelet that says, ‘Play Like a Champion Today’, The Notre Dame Fighting Irish chant, but that attitude can only carry you so far through depression.
When we get home, we have another go at the pumpkins and while we were outside I thought I could hear raccoons chortling at each other. I got concerned for the chickens – I know the outside pen is not raccoon proof. Until I can make it safe I thought I better bring the chickens into the garage for the night.
Quinn finished his small pumpkin tonight. It has four clown faces on it – one on each side. He is quite pound of it. Tara is a little frustrated carving hers. She made a very detailed drawing of a cartoon like vampire.
According to her our craving tools ‘suck’. I thought the old jig saw blades worked pretty well. She feels that they have butchered her pumpkin. Her perfectionist attitude will serve her well later in life, but we have to think of ways to get her to lighten up a bit about the small stuff – or else she will make herself unhappy..
She abandons the pumpkin and starts her math duotang costume. She spends the rest of the night happily drawing up plans for the costume and cutting cardboard. I think she has found her artistic medium.
She is your daughter – passionate, intense and going to do it right – she ‘Plays like a champion today’ too.
Wednesday, October 21, 2009
Tuesday October 20 – You are Waking Up
I woke up to the radio announcer talking about the Angels game last night - I already knew they won because I stayed up to see it but it was a pleasant reminder that this should be a good day.
When Tara came into the kitchen, she pointed out a rainbow shining by Annie’s food dish. “Look Mummy, a rainbow” she said, “I wonder where is it coming from.” Closer inspection revealed that the rainbow was from the sunshine that was reflecting through the Hope crystal that Betty from the school gave us. I hung the crystal in the window that I look out the most … the kitchen window. We both grinned at the wonderful thought.
I feel like I’m on top of things more then usual. When you are around you are focused on the immediate needs of week and I focus on the plans for the next week, month or year. I don’t know how, but I have managed to keep tabs on the current week much better. Is this the result of a survival instinct that comes with a crisis? What did I harness onto to enable me to do this?
My grandmother, who had a young family in London during the war and the London Blitz, often said, that was the best time of her life. Granny was an educated smart woman. During the war Granny felt needed in a way she hadn’t felt before.
A crisis is fertile ground for finding a purpose. Whether it’s a huge crisis like a war or a small crisis like our family’s situation now – it makes you look at things differently, appreciate what you almost lost and it empowers you to handle it all.
A crisis brings out the extraordinary in a person.
The journal writing has been very therapeutic to me. It started as a means of telling the people who love you and care about us, how you are doing. Many people had thought that you had died.
But then it became more – it became a record of your story for you to help with your healing. When you listen to my words and emotions, I think it will help you. Only time will tell if the journal continues to serve this purpose.
In the process of writing it became therapy for me to write you this long love letter.
Martha told me about journal writing being recommended for new mothers of very premature babies. A fragile infant can not be touched and new Mothers can’t hold their child. They have a brand new life full of hopes and dreams who they can’t physically bond with.
Writing things on paper, remembering moments and identifying feelings helps with the healing. This has been what this journal has done for me. I pray it might help you too.
I feel a little anxious about the journal. I am getting so much feedback on it – I feel a little pressure to keep it going – even though I can’t give it as much attention as I would want. On the other hand I really have the easy job, you have the hard job – If this journal makes even one day of it easier for you – it will be worth it.
I hope you aren’t upset that I have exposed some of our family stories for all to see. I have not included a lot of the embarrassing stuff, I figure I’d leave that material to you … If you do, then I’ll the one who is embarrassed.
I greeted you with a hug and you asked if I remembered our anniversary! Wow that 53 days ago. I told you of our deferred plans the do something special on the Monday after the anniversary. I told you how I could still feel the hug you gave me that day!
I wondered, aloud, how on earth would I ever top the death-defying gift that you gave me for an anniversary present. According to your wedding anniversary gift protocol, this year was supposed to be wiring.
Only you would have thought that wiring could refer to the wiring in the brain.
Maybe the anniversary day is the last real memory you have before your stroke.
You had the TV on when I came in. You fumbled with the controls – I don’t think you see the buttons very well. I try to guide you through the channels. You get frustrated and turned it off. I believe this is first time I’ve seen you turn off the TV out of frustration. Maybe the problem is just sensory overload … Your brain is not wired enough yet to appreciate TV.
Physio Linda is wondering more about your hip pains and has talked to the nurse practitioner about further testing. She describes the apparent unawareness of your left side as ‘Left sided neglect’.
She held two fingers in front of your eyes very near the midline of your face. She asked “How many did you see?” Your answer was “One”. The left neglect includes your visual field too. This explains why you still have difficulty wanting to look to your left. Why would you want to look to your left if there is nothing to look at?
When the physio team gets you sitting on the side of the bed, you are balancing your torso better. They get you lean over to the side and brace your body with your elbow. Then you are to push yourself up to the palm of your hand … A mini push-up. You can do this on the right … it takes a lot of effort. You are unable to do this on the left.
Despite this Linda is always careful to say “ That’s good Chris” in an encouraging voice. “That’s a little better then yesterday.” She feeds you seeds of hope.
Kim, the student is back – no teachers strike Yeah! She cleaned you up even trimmed your nose hairs and eyebrows “I’ll give you two.” she says as she goes to town on you. Almost a complete makeover.
Dr. Mendez pops his head in the door to check in. A quick hello and a smile and he is off again. I told you who he was …and you said remind me about him later. Maybe it is too much information at this time.
Dr. McNeely came in to see how things are going. I told him I was concerned about your hip pain. Tylenol and ibuprofen barely touch it. He examines your left leg and caused you to yell … yes yell in pain – There was no whispering of your painful expression. Your yells convinced him that your pain is due to more then stiffness that you might get from laying around for 7 weeks. He says that he will order a bone scan.
Good - we are taking more action.
I ask him about the vision loss. He said it maybe permanent but is usually peripheral to the left. “Just like the left sided weakness” he added almost as an afterthought. I hoped you didn’t hear that. I don’t think you are ready for that kind of truth yet.
Besides, doctors are only human … even surgeon doctors. They have been proven wrong before – I think they rather like to be proved wrong in this type of situation. And I know you will rather enjoy proving them wrong.
The last 7 weeks have given me time to adjust to the worries that I have felt. These are the same worries that you are only, just now, able to come to grips with. Dealing with this stress is hard enough for my mind to over come. It will be a lot harder for you to over come with an injured brain.
Some of the life lessons that I learned in the last seven weeks, you will have to learn too. We can’t skip to the last chapter to see how this is going to turn out. We will just have to wait and see. We will make to best recovery possible.
You were awake pretty much the whole time I was there by your side. Most of it you were very lucid and absorbed what I was telling you. But at least once you asked a crazy question like” Why is the score board on the ceiling? “and” Sleeping in K-cars is OK”. I can find no hidden meaning in these words – I think you were half-asleep.
I read some emails to you from the first week of your marathon. Some of them referred to the magic blanket. So I read to you the first entry in the journal. The one about Tara’s Magic Blanket and Quinn’s Channel 29. Kim and Jenn, two student nurses, were there too.
I cried while I read, you and the girls cried while you listened. It was a healing moment.
You mind is awake to hear, absorb and feel.
That mental exercise tried you out. You tried to sleep but couldn’t. While you were trying, someone had left a message at the nurse’s desk about the Angels game it pointed out that Rod Carew had thrown out the first pitch. You smiled. I asked if you wanted to hear the letter that I wrote to Rod. You looked surprised and worried …maybe you thought I’d embarrass you with a letter to him. But you bravely nodded yes anyway.
I read the letter. You cried again. I don’t think you were embarrassed … I think you were touched.
It was time to empty your bladder. You whisper that you would like to try in the urinal. The urinal looks like a plastic vase with a wide base but a narrow neck. Kim and I back away. You never liked an audience for this sort of thing. I asked you if I could tell Kim about your solo drives to Ottawa and what you did to save time on the drive. You said “Sure”. (I am going to take that as a ‘sure’ for the journal now too.)
I tell Kim how you were always so determined to get to Ottawa – door to door - in less then 14 hours. I think 13h 20m was your ‘personal best’. To save precious minutes and to keep yourself awake – you would guzzle Coke Cola by the liter and rather to stop for the unavoidable bathroom duties … you would reuse the coke bottles in another way.
I never witnessed this skill but I would think it would some practice … and possibly a funnel. Who would have thought that particular talent would be needed now.
This story certainly speaks to your determination to do something.
As I drive home I am stunned by the passage of time. I can’t believe that I was there for the whole day again. How does time seem to go by so fast when I’m with you. I wonder how you are measuring time.
You are still awake when I get ready to leave. You have been up since 7AM and I leave at 4PM. I hate leaving you when you are awake. Before I leave, I turn on the TV and I tried to find the channel that the Baseball game would be on for you tonight … in case you are awake still.
When Tara came into the kitchen, she pointed out a rainbow shining by Annie’s food dish. “Look Mummy, a rainbow” she said, “I wonder where is it coming from.” Closer inspection revealed that the rainbow was from the sunshine that was reflecting through the Hope crystal that Betty from the school gave us. I hung the crystal in the window that I look out the most … the kitchen window. We both grinned at the wonderful thought.
I feel like I’m on top of things more then usual. When you are around you are focused on the immediate needs of week and I focus on the plans for the next week, month or year. I don’t know how, but I have managed to keep tabs on the current week much better. Is this the result of a survival instinct that comes with a crisis? What did I harness onto to enable me to do this?
My grandmother, who had a young family in London during the war and the London Blitz, often said, that was the best time of her life. Granny was an educated smart woman. During the war Granny felt needed in a way she hadn’t felt before.
A crisis is fertile ground for finding a purpose. Whether it’s a huge crisis like a war or a small crisis like our family’s situation now – it makes you look at things differently, appreciate what you almost lost and it empowers you to handle it all.
A crisis brings out the extraordinary in a person.
The journal writing has been very therapeutic to me. It started as a means of telling the people who love you and care about us, how you are doing. Many people had thought that you had died.
But then it became more – it became a record of your story for you to help with your healing. When you listen to my words and emotions, I think it will help you. Only time will tell if the journal continues to serve this purpose.
In the process of writing it became therapy for me to write you this long love letter.
Martha told me about journal writing being recommended for new mothers of very premature babies. A fragile infant can not be touched and new Mothers can’t hold their child. They have a brand new life full of hopes and dreams who they can’t physically bond with.
Writing things on paper, remembering moments and identifying feelings helps with the healing. This has been what this journal has done for me. I pray it might help you too.
I feel a little anxious about the journal. I am getting so much feedback on it – I feel a little pressure to keep it going – even though I can’t give it as much attention as I would want. On the other hand I really have the easy job, you have the hard job – If this journal makes even one day of it easier for you – it will be worth it.
I hope you aren’t upset that I have exposed some of our family stories for all to see. I have not included a lot of the embarrassing stuff, I figure I’d leave that material to you … If you do, then I’ll the one who is embarrassed.
I greeted you with a hug and you asked if I remembered our anniversary! Wow that 53 days ago. I told you of our deferred plans the do something special on the Monday after the anniversary. I told you how I could still feel the hug you gave me that day!
I wondered, aloud, how on earth would I ever top the death-defying gift that you gave me for an anniversary present. According to your wedding anniversary gift protocol, this year was supposed to be wiring.
Only you would have thought that wiring could refer to the wiring in the brain.
Maybe the anniversary day is the last real memory you have before your stroke.
You had the TV on when I came in. You fumbled with the controls – I don’t think you see the buttons very well. I try to guide you through the channels. You get frustrated and turned it off. I believe this is first time I’ve seen you turn off the TV out of frustration. Maybe the problem is just sensory overload … Your brain is not wired enough yet to appreciate TV.
Physio Linda is wondering more about your hip pains and has talked to the nurse practitioner about further testing. She describes the apparent unawareness of your left side as ‘Left sided neglect’.
She held two fingers in front of your eyes very near the midline of your face. She asked “How many did you see?” Your answer was “One”. The left neglect includes your visual field too. This explains why you still have difficulty wanting to look to your left. Why would you want to look to your left if there is nothing to look at?
When the physio team gets you sitting on the side of the bed, you are balancing your torso better. They get you lean over to the side and brace your body with your elbow. Then you are to push yourself up to the palm of your hand … A mini push-up. You can do this on the right … it takes a lot of effort. You are unable to do this on the left.
Despite this Linda is always careful to say “ That’s good Chris” in an encouraging voice. “That’s a little better then yesterday.” She feeds you seeds of hope.
Kim, the student is back – no teachers strike Yeah! She cleaned you up even trimmed your nose hairs and eyebrows “I’ll give you two.” she says as she goes to town on you. Almost a complete makeover.
Dr. Mendez pops his head in the door to check in. A quick hello and a smile and he is off again. I told you who he was …and you said remind me about him later. Maybe it is too much information at this time.
Dr. McNeely came in to see how things are going. I told him I was concerned about your hip pain. Tylenol and ibuprofen barely touch it. He examines your left leg and caused you to yell … yes yell in pain – There was no whispering of your painful expression. Your yells convinced him that your pain is due to more then stiffness that you might get from laying around for 7 weeks. He says that he will order a bone scan.
Good - we are taking more action.
I ask him about the vision loss. He said it maybe permanent but is usually peripheral to the left. “Just like the left sided weakness” he added almost as an afterthought. I hoped you didn’t hear that. I don’t think you are ready for that kind of truth yet.
Besides, doctors are only human … even surgeon doctors. They have been proven wrong before – I think they rather like to be proved wrong in this type of situation. And I know you will rather enjoy proving them wrong.
The last 7 weeks have given me time to adjust to the worries that I have felt. These are the same worries that you are only, just now, able to come to grips with. Dealing with this stress is hard enough for my mind to over come. It will be a lot harder for you to over come with an injured brain.
Some of the life lessons that I learned in the last seven weeks, you will have to learn too. We can’t skip to the last chapter to see how this is going to turn out. We will just have to wait and see. We will make to best recovery possible.
You were awake pretty much the whole time I was there by your side. Most of it you were very lucid and absorbed what I was telling you. But at least once you asked a crazy question like” Why is the score board on the ceiling? “and” Sleeping in K-cars is OK”. I can find no hidden meaning in these words – I think you were half-asleep.
I read some emails to you from the first week of your marathon. Some of them referred to the magic blanket. So I read to you the first entry in the journal. The one about Tara’s Magic Blanket and Quinn’s Channel 29. Kim and Jenn, two student nurses, were there too.
I cried while I read, you and the girls cried while you listened. It was a healing moment.
You mind is awake to hear, absorb and feel.
That mental exercise tried you out. You tried to sleep but couldn’t. While you were trying, someone had left a message at the nurse’s desk about the Angels game it pointed out that Rod Carew had thrown out the first pitch. You smiled. I asked if you wanted to hear the letter that I wrote to Rod. You looked surprised and worried …maybe you thought I’d embarrass you with a letter to him. But you bravely nodded yes anyway.
I read the letter. You cried again. I don’t think you were embarrassed … I think you were touched.
It was time to empty your bladder. You whisper that you would like to try in the urinal. The urinal looks like a plastic vase with a wide base but a narrow neck. Kim and I back away. You never liked an audience for this sort of thing. I asked you if I could tell Kim about your solo drives to Ottawa and what you did to save time on the drive. You said “Sure”. (I am going to take that as a ‘sure’ for the journal now too.)
I tell Kim how you were always so determined to get to Ottawa – door to door - in less then 14 hours. I think 13h 20m was your ‘personal best’. To save precious minutes and to keep yourself awake – you would guzzle Coke Cola by the liter and rather to stop for the unavoidable bathroom duties … you would reuse the coke bottles in another way.
I never witnessed this skill but I would think it would some practice … and possibly a funnel. Who would have thought that particular talent would be needed now.
This story certainly speaks to your determination to do something.
As I drive home I am stunned by the passage of time. I can’t believe that I was there for the whole day again. How does time seem to go by so fast when I’m with you. I wonder how you are measuring time.
You are still awake when I get ready to leave. You have been up since 7AM and I leave at 4PM. I hate leaving you when you are awake. Before I leave, I turn on the TV and I tried to find the channel that the Baseball game would be on for you tonight … in case you are awake still.
Tuesday, October 20, 2009
Monday October 19 - A Disability is an Attitude
We had a late start to the day. Quinn had difficulty getting up – but after a lot of cheerleading, on my part, we were only 15 minutes late – unacceptable by your standards but I think we have done well considering everything.
Called the charge nurse and pain is barely controlled – the pain limits your sitting up time in the chair
Also push for another swallow assessment.
I walk Annie to work the air is crisp, fresh and clean. The exercise feels good. Work was good lots of puppies today – one of my favorite appointments. A new puppy with a new pet person – I see so much potential – so much hope for a good loving relationship. These appointments always make me feel good.
When I get home there is a message from Dr. Bagnell’s office. Who’s Dr. Bagnell? I return the call. Apparently, he (or she?) is your urologist. He/she wants to do further tests to check out your bladder. The efficient receptionist has an appointment for you already for Dec 8!
Dec 8th; that’s day 100 of your marathon. I don’t think I understand how specialists work – We haven’t even met Dr. Bagnell. How can Dr. B have a plan for diagnostics without consulting with the patient.
I point out to the very efficient receptionist that you are still in the QE2 and perhaps the tests can be done while you are there since urination is a handy skill to have. Especially since most of us need to do it several times a day. I picture catheters every 6 hours for you between now and Dec 8; that’s 50 days at 4 times a day = 200 dates with a catheter! She laughs nervously (I think) and repeats the appointment time and kindly says she will send us some information in the mail.
I realize I’m going to have to get used to this system. I suspect this maybe just the beginning of specialist appointments like this.
I vent my frustration on the garage and make a dent in cleaning it out and getting ready for winter. Soon, I’ll be able to put the van in.
At dinner, I take the opportunity to remind Tara and Quinn about the busker group we saw this summer in Halifax. A Hip-hop breakdance group called Ill-Abilities. They were a group of young men who danced hip-hop but did it with a difference. The crew are labeled disabled by society standards. ‘LazyLegz’ one of the groups founders was born with a genetic disease, Arthrogryposis, that affects muscle and bone growth of the lower half of his body.
Their web site says it the best. “Each dancer has taken those limitations and created their own unique style. The purpose of this team is to show the world that anything is possible as long as you keep an open mind, are creative, and adapt yourself to any situation.”
To them, the word disability is an attitude not a state of being.
As we settled down to watch them perform, there was a call for volunteers. Quinn stepped up and learned a few moves in front of the audience and then took part in LazyLegz grand finale act – “The Leap of Faith”. This involved LazyLegz holding his body and legs parallel to the ground and balance on his crutches then he proceeded to walk overtop of Quinn while he was lying down.
It was a pretty good act. Quinn and Tara were very impressed and when we got home, we showed you the video that I took of this feat. You were impressed too.
I can’t believe our good luck in having this experience to draw on for strength at this time. Both Tara and Quinn felt that LazyLegz and his crew were very talented not disabled. I hope this has addressed their fears.
For the Blog reader check out LazyLegz at http://www.lazylegz.com/content/view/15/16/lang,en/
Today Anne and two of her children that you know from the church, Evan & Alex, went to visit with you this morning after Alex’s eye appointment.
Anne writes:
“When we got to the hospital, we checked in with the nurses’ station to make sure it was a good time and they said that the nurses were in with him at the moment, but would be finished soon if we’d like to wait. We did wait outside his door and discussed the sign posted on his door that says, “Chris would like to have a tv”. After what felt like about ten minutes, (a nurse had come by and explained that he was having a “procedure” to which we replied, “no rush”!) a tall, thin, blond nurse told us we could come in.”
“The three of us went in together and I told Chris who we were, but I he already knew. The nurse told him to put his head back because he was leaned forward and she helped him rest his head on the headrest of the chair. I bobbed around a bit, trying to find his line of vision. (As it turned out, when I was getting the boys settled into bed, Alex told me that the hardest part of the visit was not being able to make eye contact with Chris!) “
“We made small talk and Alex read the card he had made to Chris who seemed to listen patiently. The nurse giggled when he finished: “Roses are red. Violets are blue. I hope you feel better and I’ll bet you do too.” (100% Alex!)”
“The nurse asked Chris if his hip was still hurting and he nodded. She explained to both of us that he had just had Tylenol and that it would take 5-10 minutes for it to kick in. Chris grabbed my hand and whispered that it still hurt. I looked at the nurse questioningly, not knowing what I should do and she told me to just give it a few minutes…”
“The boys told him that we ran in the run for Chris and all the events that have been held at the elementary school in his honour.”
“Chris held and rubbed my hand and told me that he couldn’t see out his window… wanted to go outside… wanted to go home… I told him that he’s come so far already and he said, “It doesn’t feel like it.” “
“At this point, Evan told me that he felt that he felt like he was going to faint. I took a look at him and he was ghostly white. I got him to sit down in the chair and put his head between his legs. At the same time, I got Alex to busy himself signing the sign-in sheet. I continued to talk with Chris and hold his hand. Evan looked worse & worse, and started stripping off his clothes. I asked him if he thought he’d be sick and he told me he wasn’t sure. I asked him if he could get out into the hall. He went into the hall and lay down on the floor outside Chris’ door. (Evan fainted in music class in Gr. 2 and has a phobia about it happening again. His doctor told him that if he feels like that’s going to happen, to get his head low to the ground. He took that literally and wouldn’t get off the floor in the hall.) I went to the nurses’ station (thank heavens it’s close!) and asked if they had a basin in case he threw up. They came and helped me get him up & into the patient lounge next to Chris’ room and gave him a cold washcloth to put on his head. The nurses there really are wonderful!”
“Meanwhile, I went back into Chris’ room where Alex was trying to make small talk. I explained to Chris that Evan had been light-headed and went to lie down. Chris told me that he hoped Evan would feel better and asked me where Sarah was? I explained that we had come to Halifax because Alex had an eye appointment at the IWK and that Sarah was at preschool with Ms. Ellen, but that she had made him a card. Chris asked about Evan again, so I went back to check on him. He was starting to feel better (he’d been overwhelmed I think) and we both went into the room together so that Chris could see that he was okay. Evan was able to hold Chris’ hand and we all told him we loved him. We told him that we’d come back to see him again. I said that we knew he was tired and that we were going to go so that he could have a rest.”
“He took my hand, and very clearly thanked us for coming; his eyes made an effort to try to find the boys.”
“When we got outside the hospital, Evan very clearly came back to life. I teased him that he’ll never be a doctor and he very quickly agreed – he wants to be a cartographer and thinks that’s a much less stressful job! Surprisingly, they both felt that it was a good visit and that Chris looked “better then they’d expected.” They both had been afraid he’d be bed-ridden. They were both fascinated by the IV in his arm that wasn’t hooked up to anything. His hair was shorter than they remembered and his beard surprised them. They didn’t mention anything about his left side or the fact that his emotions aren’t easily read through his face; just Alex’s comment about the lack of eye contact and he was further away than Evan & I were. All three of us held his hand and he rubbed them furiously!”
“This afternoon, they asked if Chris was like Jesus because he had died and came back to life?! I, shocked for a moment, replied that he had never actually died, but it was certainly a miracle that we were able to see him & communicate with him today after all he’d been through.”
“Tonight, at bedtime as always, more emotions came out. Alex was upset because he can’t communicate what he feels about Chris without crying. I explained that there is nothing to be ashamed of when you care about someone so much that it makes you cry… I asked him if he remembered that Daddy & I had cried when we thought that Chris was going to die? They did and I think that gave them permission to be upset. The first few times I read your journal, I couldn’t speak about it without being brought to tears.”
“Alex wants Chris to know that he hopes he gets better soon; he just wasn’t able to say that out loud today. He also wanted to tell Chris a joke, but wasn’t able to get it out:
Knock knock!
Who’s there?
Needle.
Needle who?
Needle little sympathy?”
“Thank you for sharing Chris with us! “
Love,
Anne, Evan, Alex, Sarah, Olivia & D’Arcy xo
Called the charge nurse and pain is barely controlled – the pain limits your sitting up time in the chair
Also push for another swallow assessment.
I walk Annie to work the air is crisp, fresh and clean. The exercise feels good. Work was good lots of puppies today – one of my favorite appointments. A new puppy with a new pet person – I see so much potential – so much hope for a good loving relationship. These appointments always make me feel good.
When I get home there is a message from Dr. Bagnell’s office. Who’s Dr. Bagnell? I return the call. Apparently, he (or she?) is your urologist. He/she wants to do further tests to check out your bladder. The efficient receptionist has an appointment for you already for Dec 8!
Dec 8th; that’s day 100 of your marathon. I don’t think I understand how specialists work – We haven’t even met Dr. Bagnell. How can Dr. B have a plan for diagnostics without consulting with the patient.
I point out to the very efficient receptionist that you are still in the QE2 and perhaps the tests can be done while you are there since urination is a handy skill to have. Especially since most of us need to do it several times a day. I picture catheters every 6 hours for you between now and Dec 8; that’s 50 days at 4 times a day = 200 dates with a catheter! She laughs nervously (I think) and repeats the appointment time and kindly says she will send us some information in the mail.
I realize I’m going to have to get used to this system. I suspect this maybe just the beginning of specialist appointments like this.
I vent my frustration on the garage and make a dent in cleaning it out and getting ready for winter. Soon, I’ll be able to put the van in.
At dinner, I take the opportunity to remind Tara and Quinn about the busker group we saw this summer in Halifax. A Hip-hop breakdance group called Ill-Abilities. They were a group of young men who danced hip-hop but did it with a difference. The crew are labeled disabled by society standards. ‘LazyLegz’ one of the groups founders was born with a genetic disease, Arthrogryposis, that affects muscle and bone growth of the lower half of his body.
Their web site says it the best. “Each dancer has taken those limitations and created their own unique style. The purpose of this team is to show the world that anything is possible as long as you keep an open mind, are creative, and adapt yourself to any situation.”
To them, the word disability is an attitude not a state of being.
As we settled down to watch them perform, there was a call for volunteers. Quinn stepped up and learned a few moves in front of the audience and then took part in LazyLegz grand finale act – “The Leap of Faith”. This involved LazyLegz holding his body and legs parallel to the ground and balance on his crutches then he proceeded to walk overtop of Quinn while he was lying down.
It was a pretty good act. Quinn and Tara were very impressed and when we got home, we showed you the video that I took of this feat. You were impressed too.
I can’t believe our good luck in having this experience to draw on for strength at this time. Both Tara and Quinn felt that LazyLegz and his crew were very talented not disabled. I hope this has addressed their fears.
For the Blog reader check out LazyLegz at http://www.lazylegz.com/content/view/15/16/lang,en/
Today Anne and two of her children that you know from the church, Evan & Alex, went to visit with you this morning after Alex’s eye appointment.
Anne writes:
“When we got to the hospital, we checked in with the nurses’ station to make sure it was a good time and they said that the nurses were in with him at the moment, but would be finished soon if we’d like to wait. We did wait outside his door and discussed the sign posted on his door that says, “Chris would like to have a tv”. After what felt like about ten minutes, (a nurse had come by and explained that he was having a “procedure” to which we replied, “no rush”!) a tall, thin, blond nurse told us we could come in.”
“The three of us went in together and I told Chris who we were, but I he already knew. The nurse told him to put his head back because he was leaned forward and she helped him rest his head on the headrest of the chair. I bobbed around a bit, trying to find his line of vision. (As it turned out, when I was getting the boys settled into bed, Alex told me that the hardest part of the visit was not being able to make eye contact with Chris!) “
“We made small talk and Alex read the card he had made to Chris who seemed to listen patiently. The nurse giggled when he finished: “Roses are red. Violets are blue. I hope you feel better and I’ll bet you do too.” (100% Alex!)”
“The nurse asked Chris if his hip was still hurting and he nodded. She explained to both of us that he had just had Tylenol and that it would take 5-10 minutes for it to kick in. Chris grabbed my hand and whispered that it still hurt. I looked at the nurse questioningly, not knowing what I should do and she told me to just give it a few minutes…”
“The boys told him that we ran in the run for Chris and all the events that have been held at the elementary school in his honour.”
“Chris held and rubbed my hand and told me that he couldn’t see out his window… wanted to go outside… wanted to go home… I told him that he’s come so far already and he said, “It doesn’t feel like it.” “
“At this point, Evan told me that he felt that he felt like he was going to faint. I took a look at him and he was ghostly white. I got him to sit down in the chair and put his head between his legs. At the same time, I got Alex to busy himself signing the sign-in sheet. I continued to talk with Chris and hold his hand. Evan looked worse & worse, and started stripping off his clothes. I asked him if he thought he’d be sick and he told me he wasn’t sure. I asked him if he could get out into the hall. He went into the hall and lay down on the floor outside Chris’ door. (Evan fainted in music class in Gr. 2 and has a phobia about it happening again. His doctor told him that if he feels like that’s going to happen, to get his head low to the ground. He took that literally and wouldn’t get off the floor in the hall.) I went to the nurses’ station (thank heavens it’s close!) and asked if they had a basin in case he threw up. They came and helped me get him up & into the patient lounge next to Chris’ room and gave him a cold washcloth to put on his head. The nurses there really are wonderful!”
“Meanwhile, I went back into Chris’ room where Alex was trying to make small talk. I explained to Chris that Evan had been light-headed and went to lie down. Chris told me that he hoped Evan would feel better and asked me where Sarah was? I explained that we had come to Halifax because Alex had an eye appointment at the IWK and that Sarah was at preschool with Ms. Ellen, but that she had made him a card. Chris asked about Evan again, so I went back to check on him. He was starting to feel better (he’d been overwhelmed I think) and we both went into the room together so that Chris could see that he was okay. Evan was able to hold Chris’ hand and we all told him we loved him. We told him that we’d come back to see him again. I said that we knew he was tired and that we were going to go so that he could have a rest.”
“He took my hand, and very clearly thanked us for coming; his eyes made an effort to try to find the boys.”
“When we got outside the hospital, Evan very clearly came back to life. I teased him that he’ll never be a doctor and he very quickly agreed – he wants to be a cartographer and thinks that’s a much less stressful job! Surprisingly, they both felt that it was a good visit and that Chris looked “better then they’d expected.” They both had been afraid he’d be bed-ridden. They were both fascinated by the IV in his arm that wasn’t hooked up to anything. His hair was shorter than they remembered and his beard surprised them. They didn’t mention anything about his left side or the fact that his emotions aren’t easily read through his face; just Alex’s comment about the lack of eye contact and he was further away than Evan & I were. All three of us held his hand and he rubbed them furiously!”
“This afternoon, they asked if Chris was like Jesus because he had died and came back to life?! I, shocked for a moment, replied that he had never actually died, but it was certainly a miracle that we were able to see him & communicate with him today after all he’d been through.”
“Tonight, at bedtime as always, more emotions came out. Alex was upset because he can’t communicate what he feels about Chris without crying. I explained that there is nothing to be ashamed of when you care about someone so much that it makes you cry… I asked him if he remembered that Daddy & I had cried when we thought that Chris was going to die? They did and I think that gave them permission to be upset. The first few times I read your journal, I couldn’t speak about it without being brought to tears.”
“Alex wants Chris to know that he hopes he gets better soon; he just wasn’t able to say that out loud today. He also wanted to tell Chris a joke, but wasn’t able to get it out:
Knock knock!
Who’s there?
Needle.
Needle who?
Needle little sympathy?”
“Thank you for sharing Chris with us! “
Love,
Anne, Evan, Alex, Sarah, Olivia & D’Arcy xo
Sunday October 18 – Healing Tears
It’s seven weeks today since the stroke. Seven weeks of slow but steady improvement. I think you are going to find your pace soon and it will be a little faster. I think, reading cards and the well wishes to you to celebrate the end of the seventh week in the marathon would be good therapy. I think you are ready for this.
Tara and I spend the early morning picking out nits from her hair. I found one nymph and no adults and a few nits. Tara is fed up with the whole lice thing now. She has no interest in the lice other then “Get them out!”
I have taken precautions that any hazardous material specialist would be proud of. Considering we are ‘sleeping around’ most weekends, I have lugged pillows and sleeping bags with us. Our laundry would rival the entire Orlando’s Disney World at Spring break. I even dried the laundry in the dryer at a high heat (to kill those little suckers). Our power bill will reflect my efforts. Our clothesline looks sad … it looks naked.
The children have a quick swim at the pool at Lenore’s apartment. They play a magic sea world. Tara imitates whale sounds. The sounds echo in the pool beautifully. Quinn goes along with Tara’s seaworld game. He asks if it is OK to jump or dive in this spot or that spot. He doesn’t want to hurt any animals.
They work out a swim dance with each other using seahorses and dolphins as part of the act. Tara and Quinn take this very seriously.
Tara said on Sunday AM before seeing you “Before, when I would talk to Dad, I thought ‘Ok that’s Dad’ but he didn’t really seem like Dad – I didn’t really know what to say, I would say ‘I love you’ and wish him well but he didn’t seem like Daddy. But now I WANT to talk to him. Daddy is Daddy. I can talk to him like before about things like school and other activities in life – I’m finding more words to say to him” She said this monologue with such excitement and happiness – It was a joy to hear.
We get to the hospital. Barb (the social worker) dropped off information about children handling grief and worries about having a sick parent. I’ll read it tonight.
You peed again – Christine says that you done this a few times this weekend – Yeah, that’s great
We went outside to the veteran’s gardens again – you didn’t remember to visit there last week.
As we get into the elevator, Tara and Quinn get in first and before I can manoveuor the wheel chair in the elevator the doors close without us. I calmly say “That’s OK, we will go down on another elevator and meet them there. We get to the 4th floor – no children. I wheel you along the hallway, thinking that they are just around the corner playing hide and seek as they so often do. But no children. Now I start to panic a little.
We go back to the elevators and I leave you by the elevators on the 4th floor while I go up to the 7th floor. The plan is – if the children come back to the 4th florr you would round them up. On the 7th floor there are Tara and Quinn – Quinny looks weepy enlisting the help from an LPN. We meet up with you on the 4th and continue to the gardens.
This incident reminded me of the bad dream Quinn had the night before. He was waiting for something and got lost … Gosh that’s un-nerving. Quinn’s dream from Saturday AM
The children play in the garden and I show you the flower sculpture water fountain I want you to build me when you get better. You got cold and asked to go back inside. As we head back in you say “I’m worried, I think we need a top notch ER guy – I explain what happened and how far you’ve come – you cry – you display a lot of emotion (facial expression worry and sadness). You weep – I weep – Tara and Quinn watch and are a little confused then they get it – my tears are tears of joy – You are back! Your tears represent the start of conscious healing. It was a very emotional moment.
You are concerned that you’ve left me a lot to do – “Don’t worry there are so many people in our lives that have been so moved by your strength to keep going and not give up. They want to help in any way that they can. Thanks to you – that support has been a wonderful gift for Tara, Quinn and I. I don’t feel burdened at all – I feel enpowered to keep cheering you on in your marathon and I know you are going to get better.” I said. “We have so much support that you have no choice but to make the best recovery that you can.”
I ask if you remember the race or anything about that day. No you didn’t. It’s have to know when your memories left off.
I tell that “I love you”… You say “I love you more.” You said this to Quinn yesterday and now me.
Quinn started this game a few years ago. When we kiss him good night – we would compete on how much we loved each other – Quinn would rally the ‘I love you’ challenge to me and I would volley it back to Quinn ‘I love you more then all the stars in every universe.’ Then he would pitch it to you ‘I love you to infinity and beyond’ and you would hit it back to him ‘I love you more then all the grains of sand in the world’ or something crazy like that.
Finally, our imaginations were exhausted of ways to describe our love so I you or I said ‘I love you to Quinn’ – Quinn would simply reply ‘I love you more’. The ‘I love you more’ statement became the family joke.
Quinn agrees with me that you should own the rights to the ‘I love you more’ phrase. You earned it.
We talk. I tell you about this being the marathon of your life and how it’s the biggest toughest marathon that anyone has ever known. I tell how you are not running it alone. You have so many people cheering you along the sidelines every step of the way and helping you along the way. – You won’t get lost. You won’t get hungry or tired. You will be able to just keep running and running and get well.
Your fans are going to help you, in any way they can, but ultimately it is still your marathon and you have to run it.
The mood lightens when Quinn asks you to thumb wrestle. Quinn won twice; You won once. You both follow the Cashen Code: Play to win. Quinn has a smile on his face and I believe you have happiness in your heart.
The thumb wrestling wore you out. While you rest, Quinn starts his version of the worry wall. While drawing pictures, Quinn explains the idea to Tara. Tara stars her own worry wall.
Death, wheel chairs and canes is what worried Quinn. Tara is worried about you being paralyzed and our house exploding. I thought that she was trying to be funny with the exploding house but her reply sobered me. “Any thing can happen.” she reminds me.
While you rest, we go back to the DIscovery Centre and check out the Freak Lunchbox – a candy store filled with candy of all types – none if it good for you other then eliciting a taste memory in the older crowd. (like me)
When we get back, you are awake, I ask if you remember who is coming next weekend to visit you. “Steve and Laura” you reply. I thought - this is great we are on a roll – let’s see what you do remember. I ask about your parents – “Do you remember them being here?” (They had left 8 days ago.) You don’t remember that your parents were here. You do express worry about how your mother is handling all this.
You wanted me to read some more cards – I read about a dozen cards. One referred to the Truro Daily news article and so I read you the article. You cried again. When I pointed out that Chris’ Addiction to Life Marathon had 29 characters – another stream of tears.
Tara comments on your flood of tears. “Gee daddy, Before now, I have only seen you cry once during a movie. This weekend I’ve seen you cry 5 times.” Tears of sadness, love, joy … and maybe pain. You have feelings and emotions inside and it is so good to see them come out.
The brain injury probably makes you more emotional.
Terry, Chris and Hailey come to visit again. Chris wanted to read to you an article about the Angels but couldn’t find any so he read to you about the LA Dodgers instead. You helped him understand the story – You know baseball – Chris knows of other things like whale skeletons and how to make go wine.
I didn’t want to leave – but it was getting late and it’s a school night. I’m glad Terry and Chris dropped in and stayed with you for a while as we left. I would have been hard leaving you alone especially awake and aware of things. This is an emotional time for you.
On our way out of the hospital, I ran into the recreational therapist – I asked about a TV – she thought that that would be OK now. So I will set it up tomorrow – maybe in time for the Angels game!
Terry called and said their visit was very good. Chris read some sports stories and you enjoyed them and answered some of the questions Chris had about the stories. When you answered, occasionally your full voice broke free – just for a short word or syllable, like a teenage boy’s voice breaking. Most of the time you whisper but your ability to project is getting better. I had noticed this a few times this weekend – moments when your voice popped out.
Terry said you wanted to smell the flowers they brought you! (Huh - what’s this – you want to smell flowers?!) Maybe your sense of smell is heightened. I smile at this thought – picturing you and Annie comparing notes on the fine art of the olfactory.
Chris stepped aside for a minutes and you said to Terry “I see you are still attached to him”. Your humor is still there.
Tara, Quinn and I went to Juanita’s for dinner. It’s nice and feels comfortable checking in with them at the end of the week. Mum gave us a cheque for the ‘Chris’ Addiction to Life Marathon’ for $116.00 – I asked why $116 Mum? She said “116 is 29 x 4”. Mum likes your math numbers too.
When we got home, Karen pulled up. Her husband, Hollis, has been recovering and continues to recover from his stroke over a year ago. She wanted to reach out and tell how she identified with some of my feelings. Feelings that I didn’t like. Feelings I had when I read Dr. Walling’s report to the insurance company.
She had the same thoughts. I felt validated. While talking I realize that the spoken word conveys so much more then the written word. When Dr. Walling sat me down and said the prognosis was guarded and recovery would likely not be complete. I interpreted the information differently then when I saw the same information in writing.
Why? I guess the unspoken communication - body language, intuition, even voice inflexions all can amplify or dampen down a message. I am going to chose to ignore the written words and go with my gut and what I know to be true when it comes to things that relate to you.
Karen also found that her work was easy compare to the skill and strength it took to navigate her way through Hollis’ illness. I’m not alone – Karen has traveled this path last year and she finished the journey successfully.
Friday Oct 9 A note from Marilyn and Doris:
As you know, Doris and I went see Chris last Friday; you saw the mug shots, no doubt! I did leave a message because he was sleeping when we first went so we went and had a visit with Joan. When we came back the girls were getting him up. He certainly knew us and held onto my hand the whole time. His mum and dad arrived too so it was nice to see them so upbeat with the recovery that Chris has made. My maternal instinct was just to hug him and make him better, as we do with anyone we love. I hope that all the love and hugs will encourage him to be the best Chris that he can be. I am like Quinn, I just want Chris to get his ‘funny’ back!
Tara and I spend the early morning picking out nits from her hair. I found one nymph and no adults and a few nits. Tara is fed up with the whole lice thing now. She has no interest in the lice other then “Get them out!”
I have taken precautions that any hazardous material specialist would be proud of. Considering we are ‘sleeping around’ most weekends, I have lugged pillows and sleeping bags with us. Our laundry would rival the entire Orlando’s Disney World at Spring break. I even dried the laundry in the dryer at a high heat (to kill those little suckers). Our power bill will reflect my efforts. Our clothesline looks sad … it looks naked.
The children have a quick swim at the pool at Lenore’s apartment. They play a magic sea world. Tara imitates whale sounds. The sounds echo in the pool beautifully. Quinn goes along with Tara’s seaworld game. He asks if it is OK to jump or dive in this spot or that spot. He doesn’t want to hurt any animals.
They work out a swim dance with each other using seahorses and dolphins as part of the act. Tara and Quinn take this very seriously.
Tara said on Sunday AM before seeing you “Before, when I would talk to Dad, I thought ‘Ok that’s Dad’ but he didn’t really seem like Dad – I didn’t really know what to say, I would say ‘I love you’ and wish him well but he didn’t seem like Daddy. But now I WANT to talk to him. Daddy is Daddy. I can talk to him like before about things like school and other activities in life – I’m finding more words to say to him” She said this monologue with such excitement and happiness – It was a joy to hear.
We get to the hospital. Barb (the social worker) dropped off information about children handling grief and worries about having a sick parent. I’ll read it tonight.
You peed again – Christine says that you done this a few times this weekend – Yeah, that’s great
We went outside to the veteran’s gardens again – you didn’t remember to visit there last week.
As we get into the elevator, Tara and Quinn get in first and before I can manoveuor the wheel chair in the elevator the doors close without us. I calmly say “That’s OK, we will go down on another elevator and meet them there. We get to the 4th floor – no children. I wheel you along the hallway, thinking that they are just around the corner playing hide and seek as they so often do. But no children. Now I start to panic a little.
We go back to the elevators and I leave you by the elevators on the 4th floor while I go up to the 7th floor. The plan is – if the children come back to the 4th florr you would round them up. On the 7th floor there are Tara and Quinn – Quinny looks weepy enlisting the help from an LPN. We meet up with you on the 4th and continue to the gardens.
This incident reminded me of the bad dream Quinn had the night before. He was waiting for something and got lost … Gosh that’s un-nerving. Quinn’s dream from Saturday AM
The children play in the garden and I show you the flower sculpture water fountain I want you to build me when you get better. You got cold and asked to go back inside. As we head back in you say “I’m worried, I think we need a top notch ER guy – I explain what happened and how far you’ve come – you cry – you display a lot of emotion (facial expression worry and sadness). You weep – I weep – Tara and Quinn watch and are a little confused then they get it – my tears are tears of joy – You are back! Your tears represent the start of conscious healing. It was a very emotional moment.
You are concerned that you’ve left me a lot to do – “Don’t worry there are so many people in our lives that have been so moved by your strength to keep going and not give up. They want to help in any way that they can. Thanks to you – that support has been a wonderful gift for Tara, Quinn and I. I don’t feel burdened at all – I feel enpowered to keep cheering you on in your marathon and I know you are going to get better.” I said. “We have so much support that you have no choice but to make the best recovery that you can.”
I ask if you remember the race or anything about that day. No you didn’t. It’s have to know when your memories left off.
I tell that “I love you”… You say “I love you more.” You said this to Quinn yesterday and now me.
Quinn started this game a few years ago. When we kiss him good night – we would compete on how much we loved each other – Quinn would rally the ‘I love you’ challenge to me and I would volley it back to Quinn ‘I love you more then all the stars in every universe.’ Then he would pitch it to you ‘I love you to infinity and beyond’ and you would hit it back to him ‘I love you more then all the grains of sand in the world’ or something crazy like that.
Finally, our imaginations were exhausted of ways to describe our love so I you or I said ‘I love you to Quinn’ – Quinn would simply reply ‘I love you more’. The ‘I love you more’ statement became the family joke.
Quinn agrees with me that you should own the rights to the ‘I love you more’ phrase. You earned it.
We talk. I tell you about this being the marathon of your life and how it’s the biggest toughest marathon that anyone has ever known. I tell how you are not running it alone. You have so many people cheering you along the sidelines every step of the way and helping you along the way. – You won’t get lost. You won’t get hungry or tired. You will be able to just keep running and running and get well.
Your fans are going to help you, in any way they can, but ultimately it is still your marathon and you have to run it.
The mood lightens when Quinn asks you to thumb wrestle. Quinn won twice; You won once. You both follow the Cashen Code: Play to win. Quinn has a smile on his face and I believe you have happiness in your heart.
The thumb wrestling wore you out. While you rest, Quinn starts his version of the worry wall. While drawing pictures, Quinn explains the idea to Tara. Tara stars her own worry wall.
Death, wheel chairs and canes is what worried Quinn. Tara is worried about you being paralyzed and our house exploding. I thought that she was trying to be funny with the exploding house but her reply sobered me. “Any thing can happen.” she reminds me.
While you rest, we go back to the DIscovery Centre and check out the Freak Lunchbox – a candy store filled with candy of all types – none if it good for you other then eliciting a taste memory in the older crowd. (like me)
When we get back, you are awake, I ask if you remember who is coming next weekend to visit you. “Steve and Laura” you reply. I thought - this is great we are on a roll – let’s see what you do remember. I ask about your parents – “Do you remember them being here?” (They had left 8 days ago.) You don’t remember that your parents were here. You do express worry about how your mother is handling all this.
You wanted me to read some more cards – I read about a dozen cards. One referred to the Truro Daily news article and so I read you the article. You cried again. When I pointed out that Chris’ Addiction to Life Marathon had 29 characters – another stream of tears.
Tara comments on your flood of tears. “Gee daddy, Before now, I have only seen you cry once during a movie. This weekend I’ve seen you cry 5 times.” Tears of sadness, love, joy … and maybe pain. You have feelings and emotions inside and it is so good to see them come out.
The brain injury probably makes you more emotional.
Terry, Chris and Hailey come to visit again. Chris wanted to read to you an article about the Angels but couldn’t find any so he read to you about the LA Dodgers instead. You helped him understand the story – You know baseball – Chris knows of other things like whale skeletons and how to make go wine.
I didn’t want to leave – but it was getting late and it’s a school night. I’m glad Terry and Chris dropped in and stayed with you for a while as we left. I would have been hard leaving you alone especially awake and aware of things. This is an emotional time for you.
On our way out of the hospital, I ran into the recreational therapist – I asked about a TV – she thought that that would be OK now. So I will set it up tomorrow – maybe in time for the Angels game!
Terry called and said their visit was very good. Chris read some sports stories and you enjoyed them and answered some of the questions Chris had about the stories. When you answered, occasionally your full voice broke free – just for a short word or syllable, like a teenage boy’s voice breaking. Most of the time you whisper but your ability to project is getting better. I had noticed this a few times this weekend – moments when your voice popped out.
Terry said you wanted to smell the flowers they brought you! (Huh - what’s this – you want to smell flowers?!) Maybe your sense of smell is heightened. I smile at this thought – picturing you and Annie comparing notes on the fine art of the olfactory.
Chris stepped aside for a minutes and you said to Terry “I see you are still attached to him”. Your humor is still there.
Tara, Quinn and I went to Juanita’s for dinner. It’s nice and feels comfortable checking in with them at the end of the week. Mum gave us a cheque for the ‘Chris’ Addiction to Life Marathon’ for $116.00 – I asked why $116 Mum? She said “116 is 29 x 4”. Mum likes your math numbers too.
When we got home, Karen pulled up. Her husband, Hollis, has been recovering and continues to recover from his stroke over a year ago. She wanted to reach out and tell how she identified with some of my feelings. Feelings that I didn’t like. Feelings I had when I read Dr. Walling’s report to the insurance company.
She had the same thoughts. I felt validated. While talking I realize that the spoken word conveys so much more then the written word. When Dr. Walling sat me down and said the prognosis was guarded and recovery would likely not be complete. I interpreted the information differently then when I saw the same information in writing.
Why? I guess the unspoken communication - body language, intuition, even voice inflexions all can amplify or dampen down a message. I am going to chose to ignore the written words and go with my gut and what I know to be true when it comes to things that relate to you.
Karen also found that her work was easy compare to the skill and strength it took to navigate her way through Hollis’ illness. I’m not alone – Karen has traveled this path last year and she finished the journey successfully.
Friday Oct 9 A note from Marilyn and Doris:
As you know, Doris and I went see Chris last Friday; you saw the mug shots, no doubt! I did leave a message because he was sleeping when we first went so we went and had a visit with Joan. When we came back the girls were getting him up. He certainly knew us and held onto my hand the whole time. His mum and dad arrived too so it was nice to see them so upbeat with the recovery that Chris has made. My maternal instinct was just to hug him and make him better, as we do with anyone we love. I hope that all the love and hugs will encourage him to be the best Chris that he can be. I am like Quinn, I just want Chris to get his ‘funny’ back!
Subscribe to:
Posts (Atom)