Quinn is interested in writing to Katherine, in Burkina and Sinthujan, in Sri Lanka our two sponsor children. The movie last night, with the main characters being foster children, made Quinn want to connect with real people who are disadvantaged. He makes them each a card during breakfast.
When we get to your room, the strong smell of pee hit us – Yay! You peed on your own! That’s another big step.
Just when I was thinking about it being six weeks today that you collapsed, and your recovery was taking so-o-o-o long, you take another step in the marathon. It’s very hard sitting on the sidelines, watching such a slow pace and being unable to do anything about it except cheer you on.
This is Thanksgiving. I am grateful but I know I should be more grateful. Six weeks ago I thought you would die. Six weeks ago, I had to think about a funeral not a wet bed. Six weeks ago my heart broke. Now it’s healing … slowly.
The resident was in. I hadn’t met her before, she had a nice compassionate way about her. She was just checking in. She had been following your case. She said the PEG tube would be a big step forward to getting you to rehab. That ‘s the first time anyone brought up the subject of going to the rehab hospital, except me.
At lunch, I go downstairs to the family room next to the ICU to use the microwave there. Being in that room, again, suddenly made me feel a little more grateful that you are not there now. My heart ached for the family who camping out and waiting for news of their missing family member today.
Today I don’t feel so brave about the new normal for us.
I suppose really there is a grief process at work here. I’m grieving for my old, comfortable life. Some days are harder to get through then other days. I don’t know where I am in the process. I think I skip back and forth. Anger, Denial, Bargaining, Depression and Acceptance.
I don’t think I have bargained at all but I certainly felt all the other emotions off and on. What a roller coaster ride … I just want the ride to end.
I ask if you would like me to cut your hair.
When you had your surgery, only the front half of your head was shaved. Six weeks later, your hair re-growth looks good but the hair at the back of your head has got quite long.
The scar curves around your forehead and down the side of your head on the right side. If you looked in the mirror you would see a scar in the shape of a question mark. A rather appropriate symbol since we will probably never know what happened to cause the bleed in the first place. It’s a mystery. In fact there are many unanswered questions about you condition and our future.
As I sit with you throughout the afternoon. You drift from your childhood to present day. One minute you are annoyed with Steve (Chris’ brother) the next minute you think you want to play cards, but you forgot what to do after I dealt them out. At one point I was pretty sure you didn’t know who I was. I asked – you mumbled. I asked later and you said ‘Gwen’. It’s hard keeping up with you in your time travel.
Janice, Edwin and the gang from PEI arrive. You are awake and talk with them. They are in Halifax to see Jaimee who is playing in a field hockey tournament this weekend as well as see you. Since your marathon began, Jaimee began one of her own. Her marathon was a little more planned then yours. She is in her first year at university. A new normal for her.
Janice takes Tara and Quinn to see field hockey game and go swimming in the pool at their hotel.
Juanita and Wayne, with Maddie and Farley, come to visit. Wayne is taping the third Angels game for you. You are in your chair now and we walk you about. – I had hoped to get you outside today, but it’s getting late in the day and cold. We walk the halls of the hospital and play with Maddie while she eats her supper.
Janice and Edwin have planned a Thanksgiving dinner at Mary and Stuart’s house. Turkey with stuffing etc. They have been working on dinner since noon.
Going to Thanksgiving dinner without you doesn’t seem right. I feel empty and sad.
The children are back from the pool. They had fun. Dinner smells good. Erica (third daughter of Janice and Edwin’s) even made place name cards with a heart and a 29 on each one. Before digging in to the food. Janice says a prayer. Then we go around the table to say what we are thankful for. Erica says “Organ donation”!
Wow, she nailed it for me. Those two words spun around my internal dialogue from “Why is this happening to us?” to “We are so lucky this happened to us … it could have been worse.” Thanks Erica for re-adjusting my outlook.
Your Thanksgiving dinner was ‘Promote’ – vanilla flavoured high protein liquid with a side order or Isosource HN with fiber. Mmmm.
Janice, Edwin and I go back to the hospital to say good night. Edwin says to you that he wants to thank you for introducing him to running. You almost smile and stretch out your hand to him.
It’s very hard saying goodbye when you are awake. I kiss you goodnight.
Third Division Playoff game: LAA 5 against BOS 4! LAA won the series and move on to the Pennant playoffs.
Happy Thanksgiving Dear. We love you. Be strong and keep running. We are here to cheer you on. You will finish this marathon.
Monday, October 12, 2009
Saturday October 10 – A New World and a New Normal
Quinn seems pretty good today. Maybe he is finally starting to come around or maybe it’s because he saw you yesterday. That may have helped way lay some of his fears. I have to remember that without believable factual information, children tend to fill in the blanks themselves. Quinn has not said anything that make me think his is filling in the blanks. But I believe he is – that’s the way his mind works.
On the first night, before we got the results from your first CT scan, We knew you were sick and knew it might be serious but we didn’t know that you would die. I asked Tara if she wanted to see you. She wasn’t sure. She started to cry. Then she blurted out “I don’t want to see Daddy’s insides!” Oh God, I never took the time to prepare her for the visit so she filled in the information with her own details. Since then, I have tried to prepare the children as much as possible for every turn in the road.
Tara is very verbal about her concerns. She shares everything … sometimes I think she makes up things to share. Quinn is the other extreme. He keeps it all inside and just gets sad. I don’t know how to get him talking and sharing. I think if I knew what he was thinking, I could help get rid of some anxiety.
It’s raining … again. I’m glad it waited this long for the rain and we didn’t get this when you were in the ICU. I’m at a mental state where I can take it now … it’s just rain.
Tara is up early and spends an hour ‘organ sizing’ the beads she brought yesterday. Tara and Quinn are very organize oriented. The Easter when Tara was two, we had an Easter egg hunt at my Mums. Neeson and Erik were both there. Being older they managed to get a lot of the eggs. The eggs came in all colours. Later that day, Neeson, then six, caught Tara going through his eggs! He was upset, thinking she was going to take some. Tara replied in a calm voice “I’m just organ-sizing them Neeson.” The term has stuck with us since. I can’t wait to tell her ‘meet-the-parents’ boyfriends that they better watch out because Tara started to organ-sizing at a very young age. On second thought – I better not … Tara may never forgive me.
Second Division Playoff game: Angels won against Boston again last night LAA 4 vs BOS 1. Next game is Sunday afternoon in Boston.
When we get to your room it’s 10 AM and DeeDee and Grandpa are there. Tara spends the better part of an hour describing, in detail, the entire story line to “Cloudy with a Chance of Meatballs”. Quinn kicks in an occasional missed highlight when he can get a word in edgewise. Quinn also shows off his talents with the devil sticks. He has been working on some new tricks. He can even do them wit his eyes closed.
You are starting to feel a bit nauseous and crampy. It maybe a side effect of the medications you are on. The nurse gives you some gravol to settle your stomach. It seems to work but it also makes you sleepy.
When I went to get some lunch for the children, I found a photo album for pictures of your visitor/fans who cheer you along as you keep going in your marathon.
As I walk, in the rain, back to the hospital, with the food and the album, I think about the meaning of a ‘normal’ life. I know our lives are far from normal right now. At times I really crave ‘normal’. I wake up and realize that my sleep was just an escape from our present day ‘normal’. Today, for the first time, I don’t feel as much anxiety at the thought of you curled up in a hospital bed. Why is today pivotal? Like any change, I suppose it takes time to get used to a new state of normal. Some days are better then others.
I think about the chickens and they new state of normal. They had never been outside before. They hadn’t felt the morning dew or the direct sunshine or smelled the dirt or hunted for bugs. They didn’t have a normal life. But the life they know was normal to them. Now, with the new outside pen, they have sorts of new experiences. A new state of normal. Yet they were quite apprehensive to come out of their house. The familiar was more comforting then a life of exciting healthy experiences. For our new normal thw world doesn’t feel quite right but we are getting used to it a little at a time.
DeeDee and Grandpa say their good byes. They fly back to Ottawa in the afternoon. It’s hard for them to go but I think they are glad they came and you rallied for their visit. Saying good bye wore you out. We let you slept.
I take the kids to Discovery center. Ironically the main exhibit is the about the Brain! The first interactive station we come across is a model of the brain and all it’s parts. The challenge is to put the parts back together. Tara is a little frustrated with the task after about 5 minutes. Quinn picks up and proceeds to put it together easily. I guess we know who the brain surgeon in the family will be!
The rest of the exhibit was about personality types. There were several stations where you answer questions about yourself to determine your personality tendencies. Neither Tara or Quinn tested very high on the anxiety scale.
Maybe I am just reflecting my anxiety onto them and worrying about that.
When we return, you are tired and feel hot. You want to listen to your ipod. Tara and Quinn find it difficult to be quiet. I give up trying to shhhh them. We kiss good night, pick up a movie and go back to Mary and Stuart’s home to settle for the night.
Both Andrea and Christian, Mary and Stuart’s children, play the drums. They have numerous drum sets in the basement of their house. Tara and Quinn take turns playing the drums. Oh Boy – I’m glad they play the piano.
We rented a movie, ‘Hotel for Dogs’. About two foster children who befriend a huge pack of dogs and trash them away from the authorities in an old run down hotel. Tara and Quinn really enjoy it.
I sit between them, on the sofa, thinking about our new ‘normal’ life.
On the first night, before we got the results from your first CT scan, We knew you were sick and knew it might be serious but we didn’t know that you would die. I asked Tara if she wanted to see you. She wasn’t sure. She started to cry. Then she blurted out “I don’t want to see Daddy’s insides!” Oh God, I never took the time to prepare her for the visit so she filled in the information with her own details. Since then, I have tried to prepare the children as much as possible for every turn in the road.
Tara is very verbal about her concerns. She shares everything … sometimes I think she makes up things to share. Quinn is the other extreme. He keeps it all inside and just gets sad. I don’t know how to get him talking and sharing. I think if I knew what he was thinking, I could help get rid of some anxiety.
It’s raining … again. I’m glad it waited this long for the rain and we didn’t get this when you were in the ICU. I’m at a mental state where I can take it now … it’s just rain.
Tara is up early and spends an hour ‘organ sizing’ the beads she brought yesterday. Tara and Quinn are very organize oriented. The Easter when Tara was two, we had an Easter egg hunt at my Mums. Neeson and Erik were both there. Being older they managed to get a lot of the eggs. The eggs came in all colours. Later that day, Neeson, then six, caught Tara going through his eggs! He was upset, thinking she was going to take some. Tara replied in a calm voice “I’m just organ-sizing them Neeson.” The term has stuck with us since. I can’t wait to tell her ‘meet-the-parents’ boyfriends that they better watch out because Tara started to organ-sizing at a very young age. On second thought – I better not … Tara may never forgive me.
Second Division Playoff game: Angels won against Boston again last night LAA 4 vs BOS 1. Next game is Sunday afternoon in Boston.
When we get to your room it’s 10 AM and DeeDee and Grandpa are there. Tara spends the better part of an hour describing, in detail, the entire story line to “Cloudy with a Chance of Meatballs”. Quinn kicks in an occasional missed highlight when he can get a word in edgewise. Quinn also shows off his talents with the devil sticks. He has been working on some new tricks. He can even do them wit his eyes closed.
You are starting to feel a bit nauseous and crampy. It maybe a side effect of the medications you are on. The nurse gives you some gravol to settle your stomach. It seems to work but it also makes you sleepy.
When I went to get some lunch for the children, I found a photo album for pictures of your visitor/fans who cheer you along as you keep going in your marathon.
As I walk, in the rain, back to the hospital, with the food and the album, I think about the meaning of a ‘normal’ life. I know our lives are far from normal right now. At times I really crave ‘normal’. I wake up and realize that my sleep was just an escape from our present day ‘normal’. Today, for the first time, I don’t feel as much anxiety at the thought of you curled up in a hospital bed. Why is today pivotal? Like any change, I suppose it takes time to get used to a new state of normal. Some days are better then others.
I think about the chickens and they new state of normal. They had never been outside before. They hadn’t felt the morning dew or the direct sunshine or smelled the dirt or hunted for bugs. They didn’t have a normal life. But the life they know was normal to them. Now, with the new outside pen, they have sorts of new experiences. A new state of normal. Yet they were quite apprehensive to come out of their house. The familiar was more comforting then a life of exciting healthy experiences. For our new normal thw world doesn’t feel quite right but we are getting used to it a little at a time.
DeeDee and Grandpa say their good byes. They fly back to Ottawa in the afternoon. It’s hard for them to go but I think they are glad they came and you rallied for their visit. Saying good bye wore you out. We let you slept.
I take the kids to Discovery center. Ironically the main exhibit is the about the Brain! The first interactive station we come across is a model of the brain and all it’s parts. The challenge is to put the parts back together. Tara is a little frustrated with the task after about 5 minutes. Quinn picks up and proceeds to put it together easily. I guess we know who the brain surgeon in the family will be!
The rest of the exhibit was about personality types. There were several stations where you answer questions about yourself to determine your personality tendencies. Neither Tara or Quinn tested very high on the anxiety scale.
Maybe I am just reflecting my anxiety onto them and worrying about that.
When we return, you are tired and feel hot. You want to listen to your ipod. Tara and Quinn find it difficult to be quiet. I give up trying to shhhh them. We kiss good night, pick up a movie and go back to Mary and Stuart’s home to settle for the night.
Both Andrea and Christian, Mary and Stuart’s children, play the drums. They have numerous drum sets in the basement of their house. Tara and Quinn take turns playing the drums. Oh Boy – I’m glad they play the piano.
We rented a movie, ‘Hotel for Dogs’. About two foster children who befriend a huge pack of dogs and trash them away from the authorities in an old run down hotel. Tara and Quinn really enjoy it.
I sit between them, on the sofa, thinking about our new ‘normal’ life.
Friday October 9 - Grandparents and Children
Quinn and I slept in until 7:45AM. Quinn seems much better. No hives. I start to wonder if the hives were from the strawberries he and Tara had last evening. We’ll have to investigate this theory sometime, meanwhile, no strawberries for Quinn.
Angels won last night: LAA 5 vs BOS 0. Yeah!
Marianne visited and told us about her visit with you yesterday. She was pleased to see you were doing well.
We ate breakfast and I tackle the chicken pen. Just as I start, Harold, our neighbor you had a stroke, came over and offered to help finish the pen. While we were working, he shared some of his feelings and perceptions about visitors in the hospital and how tiring things can be. This seems very relevant to you at this time.
The pen looked pretty good when we were done. Tara, Quinn and I put the chickens into their new home. The bedroom box has a straw bed. The chickens are really curious and hesitate to even leave the box. The door from the bedroom leads to the pen. We placed the whole pen on part of the compost pile. When the chickens finally mustered up courage to leave the bedroom, they were delighted to discover a new world of plants and dirt and, best of all, bugs. They are happy chickens now.
Harold said he would look after our chickens, your fish and the cats while we are away in Halifax for the weekend.
While Harold and I were building the pen, Tara and Quinn take on the laundry duties. I had to persuade them with the promise of payment. They needed no other encouragement. By the time I was done with the chicken pen, they had folded, sorted and put away the week’s worth of laundry. They also made their beds and packed their things for Halifax.
We sing in the car. Tara kicked me out of her choir because she says I can’t sing. She said you would have to audition, but she didn’t think you would make the cut either. We will just have settle and be an enthusiastic audience.
I pointed out to Tara that I used to sing her to sleep when she was a baby. Her response: “I didn’t have laugh juice in me to kick you so I fainted. What’s why it looked like I was sleeping!”
When we get to your room, DeeDee and Grandpa are there. The children are happy to see them. Dick wastes no time and goes right into teasing mode. “How is your teacher, Madame Burger?” Tara jumps right in and starts to tease him back.
This started when Tara was a baby – she didn’t like it then – now she embraces it. It doesn’t matter how long it’s been since they have seen each other, they pick up the teasing almost exactly where they left off. It’s an on going conversation between them.
You are awake and quite responsive. You get to hear all about that movie we saw a few weeks ago about the Book of Kells.
The GI resident comes with 3 med students in tow. I must sign a consent for the PEG tube placement. He dutifully lists off all the possible risks with their percentages of occurrence attached.
I’m not worried about this procedure. You are not a statistic – you have already lived the outside of the Bell’s curve. Risks are risks – but nothing compared from where we came.
Possibly the PEG will be scheduled for next Thursday. The PEG should improve your time in recovery for now. You can be bolus fed. You can still eat with it but it will allow you to top up the calories you are not able to take in by mouth until you can eat enough.
You whisper that you have pain. A headache. You also say shoulder. We call the nurse, Serena, to get you some pain medication. While we are waiting, I ask you more questions about the pain. You say “DeeDee’s shoulder is sore.” You are concerned about DeeDee’s shoulder. You are worried she is in pain. We explain to you that she will have shoulder surgery soon.
You are itchy – I give your back a scratch. As I scratch your back, I suggest that you are going to owe me a lot of back rubs in the future in payment for all the attention you are getting now. You said “You still owe me some.”
On the way to Mary and Stuart’s house – we go to Michael’s to look at beads and jewelry making things. Inspired by the special beaded hair clip that Megan had given her and the art of beading that Andrea has ignited, Tara has been wondering how she can make more. We are on a bead quest. Quinn is not very enthusiastic but he humors us.
At Michael’s, Tara has small revelation. Instead of always saving her money and always thinking about what it could be. She decided that she should spend some of it on something she wants to do.
We had always drilled the skill of saving money into the children. But Tara had a good point, what’s the point of saving it when there are things that she could enjoy using it for something. In about 3 minutes she went from “Will you buy this and this for me?” to “I have some money, it’s not doing me any good in my wallet, I should buy some beads with it then I can make something and it will be fun.”
We get to Mary and Stuart’s house to get to bed. We are all tired. We all go to bed.
Angels won last night: LAA 5 vs BOS 0. Yeah!
Marianne visited and told us about her visit with you yesterday. She was pleased to see you were doing well.
We ate breakfast and I tackle the chicken pen. Just as I start, Harold, our neighbor you had a stroke, came over and offered to help finish the pen. While we were working, he shared some of his feelings and perceptions about visitors in the hospital and how tiring things can be. This seems very relevant to you at this time.
The pen looked pretty good when we were done. Tara, Quinn and I put the chickens into their new home. The bedroom box has a straw bed. The chickens are really curious and hesitate to even leave the box. The door from the bedroom leads to the pen. We placed the whole pen on part of the compost pile. When the chickens finally mustered up courage to leave the bedroom, they were delighted to discover a new world of plants and dirt and, best of all, bugs. They are happy chickens now.
Harold said he would look after our chickens, your fish and the cats while we are away in Halifax for the weekend.
While Harold and I were building the pen, Tara and Quinn take on the laundry duties. I had to persuade them with the promise of payment. They needed no other encouragement. By the time I was done with the chicken pen, they had folded, sorted and put away the week’s worth of laundry. They also made their beds and packed their things for Halifax.
We sing in the car. Tara kicked me out of her choir because she says I can’t sing. She said you would have to audition, but she didn’t think you would make the cut either. We will just have settle and be an enthusiastic audience.
I pointed out to Tara that I used to sing her to sleep when she was a baby. Her response: “I didn’t have laugh juice in me to kick you so I fainted. What’s why it looked like I was sleeping!”
When we get to your room, DeeDee and Grandpa are there. The children are happy to see them. Dick wastes no time and goes right into teasing mode. “How is your teacher, Madame Burger?” Tara jumps right in and starts to tease him back.
This started when Tara was a baby – she didn’t like it then – now she embraces it. It doesn’t matter how long it’s been since they have seen each other, they pick up the teasing almost exactly where they left off. It’s an on going conversation between them.
You are awake and quite responsive. You get to hear all about that movie we saw a few weeks ago about the Book of Kells.
The GI resident comes with 3 med students in tow. I must sign a consent for the PEG tube placement. He dutifully lists off all the possible risks with their percentages of occurrence attached.
I’m not worried about this procedure. You are not a statistic – you have already lived the outside of the Bell’s curve. Risks are risks – but nothing compared from where we came.
Possibly the PEG will be scheduled for next Thursday. The PEG should improve your time in recovery for now. You can be bolus fed. You can still eat with it but it will allow you to top up the calories you are not able to take in by mouth until you can eat enough.
You whisper that you have pain. A headache. You also say shoulder. We call the nurse, Serena, to get you some pain medication. While we are waiting, I ask you more questions about the pain. You say “DeeDee’s shoulder is sore.” You are concerned about DeeDee’s shoulder. You are worried she is in pain. We explain to you that she will have shoulder surgery soon.
You are itchy – I give your back a scratch. As I scratch your back, I suggest that you are going to owe me a lot of back rubs in the future in payment for all the attention you are getting now. You said “You still owe me some.”
On the way to Mary and Stuart’s house – we go to Michael’s to look at beads and jewelry making things. Inspired by the special beaded hair clip that Megan had given her and the art of beading that Andrea has ignited, Tara has been wondering how she can make more. We are on a bead quest. Quinn is not very enthusiastic but he humors us.
At Michael’s, Tara has small revelation. Instead of always saving her money and always thinking about what it could be. She decided that she should spend some of it on something she wants to do.
We had always drilled the skill of saving money into the children. But Tara had a good point, what’s the point of saving it when there are things that she could enjoy using it for something. In about 3 minutes she went from “Will you buy this and this for me?” to “I have some money, it’s not doing me any good in my wallet, I should buy some beads with it then I can make something and it will be fun.”
We get to Mary and Stuart’s house to get to bed. We are all tired. We all go to bed.
Thursday October 8 – Swallow But Not Good Enough
Quinn feels bad today – he was in tears – He couldn’t decide if he should go to school or not. He thought his left ear hurt. I decided that he should go to Juanita’s instead of school, at least for a few hours until he feels a little better. Quinn cries when I tell him Uncle Wayne is picking him up to take to Juanita’s. He wants me to walk him to school. I’m not sure what the problem is, sickness or sadness or both.
He had a restless night – lots of groaning and talking in his sleep. I’ve not known him to talk in his sleep this much before. He wants me to lay down with him at bedtime every night. Each night he asks me to lie down. Each night I have to tell him I have a few things to do before bed. Each night he says he understands and goes to sleep on his own or with Annie. I think he is just saying that he understands. I think, he has some anxiety. The virus just made it worse. I don’t know what to do about it. This weekend, I will make an extra effort to spend time with him.
Quinn and I decided that if he felt better, in a little while, then Juanita will take him to school a little later. He seems a little happier with this plan.
No ride today, I drove in myself. It was good. My mind is alert and it gives me an opportunity to think. I normally like to listen to CBC radio when driving but I haven’t listened to the radio or watch TV since your marathon started. I just don’t want the extra noise to distract me from what I feel I need to do and think about. It helps me get things clear in my mind. It’s almost as good as the journal. Silence is golden … once in a while.
You are in your chair and dressed and mouth cleaned and it’s only 9:15 AM– the students must be back – They are back - Chantelle is your student nurse today. There will likely be a strike so this will be the last few days with students until the strike is over. That’s too bad, students really help the staff at the hospital.
Speech therapist Sue came in to give us a binder that she had prepared to allow for communication in the least tiring way for you. She asks you to move your tongue about. “Ohhh” she exclaims, “You able to move your tongue to the right past your midline!” A significant feat in the speech therapy business. She’s impressed. Then you show off with a good blow. Almost strong enough blow to blow out birthday candles.
Sue thinks that maybe you are ready for a fluoroscope swallow to see how well you complete the swallow. But first they test you with a very small amount of thick liquid food like applesauce. “Do you have anything else – Chris doesn’t like applesauce.” I said. I think of one of our favorite family meals – pork chops. The children and I love pork chops and applesauce but you can’t stand the thought of it. You like your pork chops – naked. To think the first thing your taste buds get to experience in 40 days might have been applesauce. You would have likely gagged at the thought – that’s just wrong.
“How about butterscotch pudding mixed with barium?” asks Sue. I know that you would have preferred a Coke Cola – I asked - but the dietician says no way!
To finish your performance for Sue, you even sing a note on request – I’m not sure which note – I wish I had a musical ear. Tara would know the note. Sue suggests we practice this occasionally. Something to do this weekend.
Sue talks about placing a PEG tube. This is a tube that goes through your abdominal wall into your stomach. After it heals, it can be there for a long time … if needed. There are many advantages to a PEG tube. The biggest is you get to loose the horrid NG tube. You can be fed in boluses, which means when the physio gets more intense, they don’t have to worry about working around your NG tube. It also reduces the risk of heartburn and gastric reflux.
You seem sore in your left shoulder. We call the nurse for more pain medication. I don’t think you have enough strength to call the nurse on your own. This worries me about your care when I’m not here to advocate for you. I want to push for regular tylenol treatment. The ‘prn’ or ‘as needed’ instructions the doctors have given the nursing staff are rather silly. You can’t easily communicate that you have pain. The onus should not be on you to ask for pain medication.
I read the latest letter from Janice (from PEI). It’s about missing you and your talks and about missing her eldest daughter, Jaimee, who is off to university this fall. It’s a difficult time of her.
I ask if you would like to listen to your ipod. You say “It’s not working”. “Yes it is, I charged it last night”. You reach for the ipod – you remember what to do – how to adjust the volume etc! I start to write while you listen to tunes. You start to tap your right foot to the music!
Physio Jill came in to see you. I tell her that you indicated that your left shoulder is sore. She checks it and explains that since the shoulder joint is only held together by muscles, it’s easy for the joint to get sore when the limb is not in use. The muscles stretch and the joint capsule and rotator cuff can get strained, causing pain. Because of this your shoulder is very prone to injury. We have to be careful how to move you.
Sue and Shirley, the dietician, come in and do another swallow assessment with ½ tsp butterscotch pudding. You did swallow … about 12 times then a little cough. Improved from last week but you are still not ready for real food yet. The risk of aspiration pneumonia is too great and too serious. Shirley says a PEG tube will also allow you can to get fluids and adequate calories while still trying to learn to eat again.
Last week you weighed 140 pounds I believe you entered the hospital at about 175 lbs. Shirley says you shouldn’t loose any more weight. Her plan is to maintain this weight until you are building muscle again.
Elaine was working with your arm. You were half-asleep. Lids half open but the globe of your eye was starting to float back and forth with REM activity. As she worked with your arm, you clearly ask me “Do you like people chasing you?” I said “No, not especially” Then you pointed to your mother and asked the same. “Do you like people chasing you?” She says “If I’m being chased by Tara and Quinn, I like it.” I ask you the same question, thinking this is some sort of game or leading up to a joke. You drift off to sleep taking your answer with you.
There are times when I am half-awake and half-asleep. Reality merges with fantasy and it’s hard to distinguish the difference. I wonder if this is where your mind is floating sometimes at this point in your recovery.
I get back to Truro and pick up the children from piano lessons at Chella’s. Quinn greets me at the door. He proudly shows me that he is on page 29 of his music book. He plays me a few songs while Tara is in the other room being a Julia Andrews mimic singing ‘DO a Deer’.
On the car ride home Tara starts to plan how she would form a choir and get them to perform ‘DO a Deer’ just like in the film.
We visit Assieh and her family for a few minutes on the way home. Josianne, Tara and Madeline started a book club at school. They started a trend in the class. Now there is a girls fashion club, boys fashion club, art club and a pokeman club as well.
I ask for Assieh’s advise about Quinn’s anxiety. She asks “what does your gut say?” I think he is anxious about you but doesn’t know how to express it. I will have to try and help him through this rough time. But I don’t know how. I vow to myself to lay down with him at night like we used to. I’m just going to have to will myself to get up when he is asleep and finish getting ready for the next day later.
When we get home, dinner is waiting for us in the food fairy cooler along with a turkey. The turkey is from Kevin. In an envelope addressed to Tara and Quinn is a note from Kevin and $40.50. The proceeds from the 13 chicks that we hatched out and gave back to Kevin. His note said that he found a good home for them in Stewiacke. Tara and Quinn are delighted with their newfound money.
At bedtime, I tuck in Tara and lay down with Quinn. He seems happy with this. I fall asleep … until 10:45 PM … Oh No the Angels game started at 10:30 PM! I rush to tape the game. I start to write in the journal, Quinn is up again – it’s 11:30. He is crying and I go through the list of possible problems. He is half-asleep and doesn’t know the problem.
I take him up stairs, thinking that he has a headache, I reach for some ibuprofen, and then I notice that his extremities are covered in itchy hives. That’s why he is crying and why he is not sure what the problem was. I call Martha (A friend who is a pediatric nurse) in Ottawa, hoping she might be home. She’s not.
I google strep throat and find scarlet fever. It doesn’t really fit his symptoms. I settle on some benadryl. He sleeps soundly the rest of the night. I’m wild awake now, I stay up to 3 AM thinking and writing.
He had a restless night – lots of groaning and talking in his sleep. I’ve not known him to talk in his sleep this much before. He wants me to lay down with him at bedtime every night. Each night he asks me to lie down. Each night I have to tell him I have a few things to do before bed. Each night he says he understands and goes to sleep on his own or with Annie. I think he is just saying that he understands. I think, he has some anxiety. The virus just made it worse. I don’t know what to do about it. This weekend, I will make an extra effort to spend time with him.
Quinn and I decided that if he felt better, in a little while, then Juanita will take him to school a little later. He seems a little happier with this plan.
No ride today, I drove in myself. It was good. My mind is alert and it gives me an opportunity to think. I normally like to listen to CBC radio when driving but I haven’t listened to the radio or watch TV since your marathon started. I just don’t want the extra noise to distract me from what I feel I need to do and think about. It helps me get things clear in my mind. It’s almost as good as the journal. Silence is golden … once in a while.
You are in your chair and dressed and mouth cleaned and it’s only 9:15 AM– the students must be back – They are back - Chantelle is your student nurse today. There will likely be a strike so this will be the last few days with students until the strike is over. That’s too bad, students really help the staff at the hospital.
Speech therapist Sue came in to give us a binder that she had prepared to allow for communication in the least tiring way for you. She asks you to move your tongue about. “Ohhh” she exclaims, “You able to move your tongue to the right past your midline!” A significant feat in the speech therapy business. She’s impressed. Then you show off with a good blow. Almost strong enough blow to blow out birthday candles.
Sue thinks that maybe you are ready for a fluoroscope swallow to see how well you complete the swallow. But first they test you with a very small amount of thick liquid food like applesauce. “Do you have anything else – Chris doesn’t like applesauce.” I said. I think of one of our favorite family meals – pork chops. The children and I love pork chops and applesauce but you can’t stand the thought of it. You like your pork chops – naked. To think the first thing your taste buds get to experience in 40 days might have been applesauce. You would have likely gagged at the thought – that’s just wrong.
“How about butterscotch pudding mixed with barium?” asks Sue. I know that you would have preferred a Coke Cola – I asked - but the dietician says no way!
To finish your performance for Sue, you even sing a note on request – I’m not sure which note – I wish I had a musical ear. Tara would know the note. Sue suggests we practice this occasionally. Something to do this weekend.
Sue talks about placing a PEG tube. This is a tube that goes through your abdominal wall into your stomach. After it heals, it can be there for a long time … if needed. There are many advantages to a PEG tube. The biggest is you get to loose the horrid NG tube. You can be fed in boluses, which means when the physio gets more intense, they don’t have to worry about working around your NG tube. It also reduces the risk of heartburn and gastric reflux.
You seem sore in your left shoulder. We call the nurse for more pain medication. I don’t think you have enough strength to call the nurse on your own. This worries me about your care when I’m not here to advocate for you. I want to push for regular tylenol treatment. The ‘prn’ or ‘as needed’ instructions the doctors have given the nursing staff are rather silly. You can’t easily communicate that you have pain. The onus should not be on you to ask for pain medication.
I read the latest letter from Janice (from PEI). It’s about missing you and your talks and about missing her eldest daughter, Jaimee, who is off to university this fall. It’s a difficult time of her.
I ask if you would like to listen to your ipod. You say “It’s not working”. “Yes it is, I charged it last night”. You reach for the ipod – you remember what to do – how to adjust the volume etc! I start to write while you listen to tunes. You start to tap your right foot to the music!
Physio Jill came in to see you. I tell her that you indicated that your left shoulder is sore. She checks it and explains that since the shoulder joint is only held together by muscles, it’s easy for the joint to get sore when the limb is not in use. The muscles stretch and the joint capsule and rotator cuff can get strained, causing pain. Because of this your shoulder is very prone to injury. We have to be careful how to move you.
Sue and Shirley, the dietician, come in and do another swallow assessment with ½ tsp butterscotch pudding. You did swallow … about 12 times then a little cough. Improved from last week but you are still not ready for real food yet. The risk of aspiration pneumonia is too great and too serious. Shirley says a PEG tube will also allow you can to get fluids and adequate calories while still trying to learn to eat again.
Last week you weighed 140 pounds I believe you entered the hospital at about 175 lbs. Shirley says you shouldn’t loose any more weight. Her plan is to maintain this weight until you are building muscle again.
Elaine was working with your arm. You were half-asleep. Lids half open but the globe of your eye was starting to float back and forth with REM activity. As she worked with your arm, you clearly ask me “Do you like people chasing you?” I said “No, not especially” Then you pointed to your mother and asked the same. “Do you like people chasing you?” She says “If I’m being chased by Tara and Quinn, I like it.” I ask you the same question, thinking this is some sort of game or leading up to a joke. You drift off to sleep taking your answer with you.
There are times when I am half-awake and half-asleep. Reality merges with fantasy and it’s hard to distinguish the difference. I wonder if this is where your mind is floating sometimes at this point in your recovery.
I get back to Truro and pick up the children from piano lessons at Chella’s. Quinn greets me at the door. He proudly shows me that he is on page 29 of his music book. He plays me a few songs while Tara is in the other room being a Julia Andrews mimic singing ‘DO a Deer’.
On the car ride home Tara starts to plan how she would form a choir and get them to perform ‘DO a Deer’ just like in the film.
We visit Assieh and her family for a few minutes on the way home. Josianne, Tara and Madeline started a book club at school. They started a trend in the class. Now there is a girls fashion club, boys fashion club, art club and a pokeman club as well.
I ask for Assieh’s advise about Quinn’s anxiety. She asks “what does your gut say?” I think he is anxious about you but doesn’t know how to express it. I will have to try and help him through this rough time. But I don’t know how. I vow to myself to lay down with him at night like we used to. I’m just going to have to will myself to get up when he is asleep and finish getting ready for the next day later.
When we get home, dinner is waiting for us in the food fairy cooler along with a turkey. The turkey is from Kevin. In an envelope addressed to Tara and Quinn is a note from Kevin and $40.50. The proceeds from the 13 chicks that we hatched out and gave back to Kevin. His note said that he found a good home for them in Stewiacke. Tara and Quinn are delighted with their newfound money.
At bedtime, I tuck in Tara and lay down with Quinn. He seems happy with this. I fall asleep … until 10:45 PM … Oh No the Angels game started at 10:30 PM! I rush to tape the game. I start to write in the journal, Quinn is up again – it’s 11:30. He is crying and I go through the list of possible problems. He is half-asleep and doesn’t know the problem.
I take him up stairs, thinking that he has a headache, I reach for some ibuprofen, and then I notice that his extremities are covered in itchy hives. That’s why he is crying and why he is not sure what the problem was. I call Martha (A friend who is a pediatric nurse) in Ottawa, hoping she might be home. She’s not.
I google strep throat and find scarlet fever. It doesn’t really fit his symptoms. I settle on some benadryl. He sleeps soundly the rest of the night. I’m wild awake now, I stay up to 3 AM thinking and writing.
Friday, October 9, 2009
A Note to Visitors: Please Help Document Chris’ Lost Days
Even though you seem very aware at times, I wonder how much you will remember at the end of this marathon. I have become somewhat protective of this journal now. To me, it represents a view of your lost days. Granted, it’s my view, but at least it’s something for you to refer to while you recover.
I want the record to be as accurate as possible with details, but I also think that feelings are important too. Real communication between people is filled with feelings with just a few details thrown in for good measure. Details, by themselves mean nothing without feelings. For you to have the full benefit of this journal, it needs to have feelings. Even if they are not yours. In time, once you read this you will be able to fill in the gaps for your own feelings.
At a point in his recovery, a few visitors each day would help Chris mark the kilometers of his marathon. It will help mark time in his mind. Now that Chris is in a single bed room. Visitors don’t have to worry about disturbing other patients.
I plan to work on Mondays, Wednesdays and Fridays. I will need to focus on children, work and house chores on those days. I will be unable to document these days for Chris.
I am enlisting help from Chris’ friends to visit him.
Keep in mind that visits should be short. He tires easily.
Bring a photo of yourself and leave it with him. We are in the process of making a photo album of all his visitors. Write the date you visit on the back of the photo so he can place events in a time-line. This may help his memory later. Even if it doesn’t help with memory, to be able to look at the list of names and see the pictures will give him strength.
There is also a clipboard on the windowsill with a stack of papers listing visitors. It was started at the Walk/Run for Hope night. Add your name to the list along with the date.
The second magic blanket is there (grey one with signatures). Please add your name and a special message for Chris. There are markers with the clipboard.
The last thing I ask is that after your visit, could you please write a few words about your observations and feelings. Mail or email them to me so I can add your comments to the journal to help Chris keep track of his lost days. ccashen@eastlink.ca or Gwen Mowbray-Cashen c/o Truro Veterinary Hospital 165 Arthur Street, Truro, NS B2N 1Y3
In her book ‘My Stroke of Insight’, Jill Bolte Taylor lists “40 Things I Needed Most”. I have listed some of the more applicable ones below.
1. Come close, speak slowly and enunciate clearly.
2. Approach me with an open heart and slow your energy down. Take your time.
3. Be aware of your what your body language and facial expressions are communicating to me.
4. Make eye contact with me. I am here – come and find me. Encourage me.
5. Please don’t raise your voice – I’m not deaf, I’m wounded.
6. Touch me and connect with me.
7. Honor the healing power of sleep.
8. Protect my energy. No talk radio, TV or nervous visitors. Keep visitation brief (five minutes)
9. Speak to me directly, not about me to others.
10. Cheer me on. Expect me to recover completely, even if it takes twenty years!
11. Celebrate all of my little successes. They inspire me.
12. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
13. Remember that in the absence of some functions, I have gained other abilities
14. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
15. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.
16. Special note for Chris:
Chris’s gaze is to his right. Engage him on that side but if possible try to move to his left and get him to turn his head and eyes to the left.
To ensure that Chris is not overwhelmed but, instead, has a slow trickle of visitors, please email or call me and let me know when you are going to Halifax.
Call me at: 902-895-6336 or email: ccashen@eastlink.ca
Thank you all the positive energy and support you have given to our family.
Last Friday October 3, Chris had three visitors. Here is what they reported:
From Janice and Les:
“Words can not explain how Les and I felt during and after our visit with Chris. I was holding his right hand and chatting up a storm. All of the sudden he let go of my hand put his right arm around my back, pullled me down to him and said my name. I kissed him on the cheek and told him, teasing of course, that he had to forget that part as he will never let me forget it. He reached across to Les, took his and said thank you as we said how much better he is looking and we would been there all the way to support him in this journey. He responded in such a way to us, either by squeezing my hand or nodding his head that we both felt he was with us the whole time. When we left he waved good bye. I left, feeling overjoyed and I can't wait to visit again.”
From Laura:
“So, WOW Chris seems great! When I first got to his room around 9:00 his eyes were half open and I don't think he was aware of me but then he gestured that he wanted to sit up so I pushed the button on his bed and I untied his hand restraint. He seemed to be listening quite intently when I told him how the Tidal Boars did at the Rum Runners Relay. He shook my shoulder like "Good job Laura"...I then had to explain I couldn't make it to the relay...sorry Chris.”
“I then got a klennex to wipe his nose and he grabbed the klennex from my hand and blew his nose...didn't know he could do that. He kept grabbing the hand rail and he said he wanted to move so I tried to get him to shift his position a bit but he was hard to move. He then said "doctor". I think I made a crack that is hard to find Drs in a hospital but I did tell a nurse that he wanted a doctor. I asked him to squeeze my hand if something was hurting...no squeeze. I said "oh, you want to ask the Dr. some questions? he said. yah. I said "ask me , maybe I know". Hmmmm, I can't remember what he said to that. I had to stick my ear practically on his mouth in order to hear him ... I am sure he appreciated that. ha. Then around 10:30 the physio people came and so I left for a bit. Then when I came back he was sitting in a chair all dressed and I asked him how did it go and he gave me an enthusiastic thumbs up and then fell asleep.It was good to see him.”
I want the record to be as accurate as possible with details, but I also think that feelings are important too. Real communication between people is filled with feelings with just a few details thrown in for good measure. Details, by themselves mean nothing without feelings. For you to have the full benefit of this journal, it needs to have feelings. Even if they are not yours. In time, once you read this you will be able to fill in the gaps for your own feelings.
At a point in his recovery, a few visitors each day would help Chris mark the kilometers of his marathon. It will help mark time in his mind. Now that Chris is in a single bed room. Visitors don’t have to worry about disturbing other patients.
I plan to work on Mondays, Wednesdays and Fridays. I will need to focus on children, work and house chores on those days. I will be unable to document these days for Chris.
I am enlisting help from Chris’ friends to visit him.
Keep in mind that visits should be short. He tires easily.
Bring a photo of yourself and leave it with him. We are in the process of making a photo album of all his visitors. Write the date you visit on the back of the photo so he can place events in a time-line. This may help his memory later. Even if it doesn’t help with memory, to be able to look at the list of names and see the pictures will give him strength.
There is also a clipboard on the windowsill with a stack of papers listing visitors. It was started at the Walk/Run for Hope night. Add your name to the list along with the date.
The second magic blanket is there (grey one with signatures). Please add your name and a special message for Chris. There are markers with the clipboard.
The last thing I ask is that after your visit, could you please write a few words about your observations and feelings. Mail or email them to me so I can add your comments to the journal to help Chris keep track of his lost days. ccashen@eastlink.ca or Gwen Mowbray-Cashen c/o Truro Veterinary Hospital 165 Arthur Street, Truro, NS B2N 1Y3
In her book ‘My Stroke of Insight’, Jill Bolte Taylor lists “40 Things I Needed Most”. I have listed some of the more applicable ones below.
1. Come close, speak slowly and enunciate clearly.
2. Approach me with an open heart and slow your energy down. Take your time.
3. Be aware of your what your body language and facial expressions are communicating to me.
4. Make eye contact with me. I am here – come and find me. Encourage me.
5. Please don’t raise your voice – I’m not deaf, I’m wounded.
6. Touch me and connect with me.
7. Honor the healing power of sleep.
8. Protect my energy. No talk radio, TV or nervous visitors. Keep visitation brief (five minutes)
9. Speak to me directly, not about me to others.
10. Cheer me on. Expect me to recover completely, even if it takes twenty years!
11. Celebrate all of my little successes. They inspire me.
12. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
13. Remember that in the absence of some functions, I have gained other abilities
14. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
15. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.
16. Special note for Chris:
Chris’s gaze is to his right. Engage him on that side but if possible try to move to his left and get him to turn his head and eyes to the left.
To ensure that Chris is not overwhelmed but, instead, has a slow trickle of visitors, please email or call me and let me know when you are going to Halifax.
Call me at: 902-895-6336 or email: ccashen@eastlink.ca
Thank you all the positive energy and support you have given to our family.
Last Friday October 3, Chris had three visitors. Here is what they reported:
From Janice and Les:
“Words can not explain how Les and I felt during and after our visit with Chris. I was holding his right hand and chatting up a storm. All of the sudden he let go of my hand put his right arm around my back, pullled me down to him and said my name. I kissed him on the cheek and told him, teasing of course, that he had to forget that part as he will never let me forget it. He reached across to Les, took his and said thank you as we said how much better he is looking and we would been there all the way to support him in this journey. He responded in such a way to us, either by squeezing my hand or nodding his head that we both felt he was with us the whole time. When we left he waved good bye. I left, feeling overjoyed and I can't wait to visit again.”
From Laura:
“So, WOW Chris seems great! When I first got to his room around 9:00 his eyes were half open and I don't think he was aware of me but then he gestured that he wanted to sit up so I pushed the button on his bed and I untied his hand restraint. He seemed to be listening quite intently when I told him how the Tidal Boars did at the Rum Runners Relay. He shook my shoulder like "Good job Laura"...I then had to explain I couldn't make it to the relay...sorry Chris.”
“I then got a klennex to wipe his nose and he grabbed the klennex from my hand and blew his nose...didn't know he could do that. He kept grabbing the hand rail and he said he wanted to move so I tried to get him to shift his position a bit but he was hard to move. He then said "doctor". I think I made a crack that is hard to find Drs in a hospital but I did tell a nurse that he wanted a doctor. I asked him to squeeze my hand if something was hurting...no squeeze. I said "oh, you want to ask the Dr. some questions? he said. yah. I said "ask me , maybe I know". Hmmmm, I can't remember what he said to that. I had to stick my ear practically on his mouth in order to hear him ... I am sure he appreciated that. ha. Then around 10:30 the physio people came and so I left for a bit. Then when I came back he was sitting in a chair all dressed and I asked him how did it go and he gave me an enthusiastic thumbs up and then fell asleep.It was good to see him.”
Wednesday October 7 – Moments of Normal
Quinn had a fairly good night last night. Quinn had his doctor’s appointment this morning. She felt his glands, checked his ears, throat and chest and asked how he felt. To be cautious she took a culture from Quinn’s throat and said we should be careful with Quinn when visiting you. Quinn seemed pretty happy with her advice and we went off to school.
On the way to the school, Quinn asks “Mummy what does AA mean?” He saw it as part of a logo on an insurance business sign. I absently said “I don’t know.” Quinn pipes up “Maybe it’s for arse!” “Arse – where on earth would have heard that word” I ask. Innocently, Quinn replies “Daddy says it.”
Work was good – I even, for a few minutes forgot to think about you, however whenever when someone ask – How are you? – you come back to me – “One foot in front of the other.” I’d reply. I got my work schedule changed so I’m off on Friday with the children. It’s an in-service day. We will go to Halifax on Friday AM for the weekend and visit with you and DeeDee and Grandpa. They leave to go back to Ottawa on Saturday so it will be a short visit with them.
I got a few groceries – didn’t need much thanks to the food fairies. Assieh called, the gymnastics club called her and said that Quinn is sick again! I go and pick him up. He does look a little tired. “It’s got to be an early bedtime tonight “ I say to him.
Just before supper, Janice called. The PEI gang is coming to NS this weekend. Jaimee (eldest daughter who is in first year university) will be playing in a tournament this weekend in Halifax. They plan on visiting you too. There is even talk of putting together a thanksgiving dinner and Mary and Stuart’s house (our hosts from last weekend).
The phone rings after supper. It’s Josh. Josh was one of the responding firemen to our home when Uncle John had found you collapsed. Josh, his wife, Pam, and children Ben and Kaylee come over for a brief visit. They bring a lasagna and fruit!
Seeing Josh brought back a mixture of feelings. Last time I saw him, I thought, you had just fallen and hit your head. I thought we were just over reacting. As the paramedics loaded you into the ambulance, Josh came into the garage where we were and talked to the children. I can’t remember his exact words, but I could read between the lines. I suspect Josh has helped EMT’s before. I think he sensed from them that this was more serious then just a fall.
Helping the EMT’s with your care that day, un-nerved him a bit. You had coached T ball with him a few years ago. Although he is at least ten years younger then you, our children are just a little older then his. It’s hard not to identify a little with your tragedy. Witnessing your stroke would un-nerve any father of young children.
I remembered to tape the first baseball playoff game. Boston Redsox at LA Angels.
Last weekend Tara asked if you were going to get a TV hooked up. I said to her, while sitting beside you holding your hand, “Well, we can look into a TV when Daddy is able to ask for a TV.” Upon hearing this, you immediately replied “I want a TV.”
This is possibly the longest you have gone without watching a TV in your adult life. TV was your companion when we are not home. It often allows you to drift off to sleep. I think a lot of the time, it is just the white noise the TV emits that comforts you. I don’t really understand it anymore but I used to like to watch TV too. Now it is a noisy distraction to my mind … except tonight … While I write the journal, I hear the ball game. It is playing in the background. The sound comforts me. It’s like you are here. The evening almost feels normal.
On the way to the school, Quinn asks “Mummy what does AA mean?” He saw it as part of a logo on an insurance business sign. I absently said “I don’t know.” Quinn pipes up “Maybe it’s for arse!” “Arse – where on earth would have heard that word” I ask. Innocently, Quinn replies “Daddy says it.”
Work was good – I even, for a few minutes forgot to think about you, however whenever when someone ask – How are you? – you come back to me – “One foot in front of the other.” I’d reply. I got my work schedule changed so I’m off on Friday with the children. It’s an in-service day. We will go to Halifax on Friday AM for the weekend and visit with you and DeeDee and Grandpa. They leave to go back to Ottawa on Saturday so it will be a short visit with them.
I got a few groceries – didn’t need much thanks to the food fairies. Assieh called, the gymnastics club called her and said that Quinn is sick again! I go and pick him up. He does look a little tired. “It’s got to be an early bedtime tonight “ I say to him.
Just before supper, Janice called. The PEI gang is coming to NS this weekend. Jaimee (eldest daughter who is in first year university) will be playing in a tournament this weekend in Halifax. They plan on visiting you too. There is even talk of putting together a thanksgiving dinner and Mary and Stuart’s house (our hosts from last weekend).
The phone rings after supper. It’s Josh. Josh was one of the responding firemen to our home when Uncle John had found you collapsed. Josh, his wife, Pam, and children Ben and Kaylee come over for a brief visit. They bring a lasagna and fruit!
Seeing Josh brought back a mixture of feelings. Last time I saw him, I thought, you had just fallen and hit your head. I thought we were just over reacting. As the paramedics loaded you into the ambulance, Josh came into the garage where we were and talked to the children. I can’t remember his exact words, but I could read between the lines. I suspect Josh has helped EMT’s before. I think he sensed from them that this was more serious then just a fall.
Helping the EMT’s with your care that day, un-nerved him a bit. You had coached T ball with him a few years ago. Although he is at least ten years younger then you, our children are just a little older then his. It’s hard not to identify a little with your tragedy. Witnessing your stroke would un-nerve any father of young children.
I remembered to tape the first baseball playoff game. Boston Redsox at LA Angels.
Last weekend Tara asked if you were going to get a TV hooked up. I said to her, while sitting beside you holding your hand, “Well, we can look into a TV when Daddy is able to ask for a TV.” Upon hearing this, you immediately replied “I want a TV.”
This is possibly the longest you have gone without watching a TV in your adult life. TV was your companion when we are not home. It often allows you to drift off to sleep. I think a lot of the time, it is just the white noise the TV emits that comforts you. I don’t really understand it anymore but I used to like to watch TV too. Now it is a noisy distraction to my mind … except tonight … While I write the journal, I hear the ball game. It is playing in the background. The sound comforts me. It’s like you are here. The evening almost feels normal.
Tuesday October 6 - Closed Doors and Open Windows
I drove into Halifax with Erin today.
Erin’s father, Donald, is one of Chris’ best friends. They met soon after we moved to Truro. Donald is a soft-spoken gentleman with a bright inquisitive mind and an eye for finding beautiful useful things in wood. He taught Chris many woodworking tricks. When he and Chris get together, Chris would make him giggle in the most endearing way.
Chris loved Donald’s wife, Bet, too. Bet was born in Ireland and still had her beautiful full Irish accent. Chris was very sad when she died about 8 years ago. Donald’s daughter, Erin, lives in England and comes to Canada as often as she can to tend to Donald’s needs. When she’s not here Chris does. He would visit Donald in the senior’s home two to three times a week. I think Chris regards Donald as a surrogate grandfather of sorts.
Generally when Erin is in Canada, she stays with Donald to keep him company. But today, he loaned Erin out to drive me to visit you. Donald is very interested in your progress.
Erin and I talk about how adaptable people can be to their new set of circumstances. She tells me of a mutual friend that you have who, had a very severe stroke at a young age. His life is a lot different now but he still continues to embrace life despite the differences.
This brought to my mind an email that Janice (from PEI) had sent me about a veterinary meeting she had gone to last weekend. She was very excited about it. The topic was the ‘Disability Paradox’.
Her email says the "Disability Paradox is a phenomenon scientifically proven over and over again from human studies. It states that disabled (or sick in other ways eg. cancer) patients surveyed report basically the SAME or better quality of life (QOL) before and after their medical condition once the adjustment period has lapsed. AMAZING because you would automatically think the QOL would go down after the problem occurred but it doesn't.’
“This is because at first all you focus on are the bad things ("focusing illusion") but then later you find out that there are still good things. The second reason is evolutionary for survival and what happens is that adaptation occurs so that an event (bad or good) doesn't take up so much of you brain that you give it too much attention.”
“We are hardwired to do these things. It's NOT a decision or choice. The third part of the paradox is called ("Scale Recalibration") wherein you now see that positive things are possible and likely give them more weight. Things like: Social interaction and human contact, Mental stimulation and other engaging activities. Maybe you can't do the same things even walk, talk, etc. but the weight shifts to what you can do.”
She goes on to cite an example of this: “ I saw Micheal J. Fox on "The Hour" with George Stroumboulopoulos. When asked if he could change his condition, Parkinson’s, that he wouldn't! Because of the insight, experience, people, etc that it has brought to his life. Before he drank partied and wasted his life even though physically he was fine so obviously the NEW set of values and abilities superseded the old.”
Janice concludes; “So I guess I believe the "Disability Paradox" AND the speaker said that even when you tell patients this paradox exists the initial adjustment is so overwhelming that they do not believe it is or can ever be true; yet, when surveyed later they have similar QOL scores. Weird but interesting. These are scored themselves not by someone externally assessing their QOL. I never thought about this before because I never had any real reason to.”
This certainly explains a lot about the strength of the human spirit to survive. And in fact, in my observation, it explains a lot about animal’s determination to survive and not lament their circumstances.
When I explained this to Erin she summed it neatly up into a short sentence. “When God closes a door, he opens a window.” Funny how people with scientific backgrounds have to analyze something that Mothers and other wise people have been saying for years!
I’m worried about Quinn – all his nightly noises are probably preventing him from getting a good sleep. I booked an appointment with Dr Bell for Quinn for 9 AM tomorrow.
You had just woken up when I came into your room. Sue and Kristy are right on my heels. Kirsty is interested in your left-sided perceptions and visual field. Your eyes drift to the right by default. Is this because you see better this side or because you are just not as cognitively aware of your left side. I believe you are staring to connect to your left … but I can see it will take time. You are pretty tired as Kristy works with you. It’s hard to keep your attention. She says it’s still early and everything you do is a huge effort.
A simple thing like “Look to your left” needs you have to listen to the words, understand and remember which is left then you have to will your body to do all this …When the wiring is slow, this whole process takes a long time. It’s easy in that time to loose the thought, especially if you are sleepy as you are today.
Sue is concerned with communication. She wants your effort to communicate to be as easy as possible. We know you can communicate so we don’t want you to waste energy on this skill. You need to save your energy to work on other skills like connect with your left side.
Your mouth care hasn’t been done today yet. So while you are awake, Sue cleans your mouth. I’ll bet it felt nice. I tell her about you brushing your own teeth on the weekend. You have no energy for that today. Sue brushes your teeth too. I ask if your throat is sore. You gesture so-so with your hand.
You do breathe through your nose some but mostly you breathe through your mouth. This would dry your throat out. You have always been susceptible to sore throats. This doesn’t help.
The charge nurse arranged for a room change. You get moved to 7357. It’s a single room and a lot quieter. This should help your sleep during the night.
Physio Steve and Linda are first to visit you in the new room. They get you sitting on the edge of the bed and move you side to side testing you balance and strength. Linda feels your abdominal muscles and is pleased. She feels some strength. I ask if you have a 6 pack or a 3 pack (because I was worried that only the right side had muscle tone). She smiles and says “There’s definitely a 6 pack!”
Your Mom, Dad and I talk quietly while you sleep. Erin returns to visit you. “Did I wake you?” She asks, waiting to hear your response. Erin says the whenever you called her, you would always start the conversation with “Did I wake you?” This became an ongoing joke between you.
She did wake you, but you were clearly pleased to see her. She said that she would do some reflexology on you on her next visit. You looked pleased with this thought.
The charge nurse has also arranged for you to get pain medication on request. I try to show you how to use the buzzer so that you can tell the nurse that you have pain.
I have to go back home. I lean over and say my good byes. “I love you, be strong and get well.” You say “I love you too” and then you kiss me. Not an air-kiss, but a real pucker-up kiss that made a smooch noise! Wow, what lip power. I felt great. Our first kiss since the stroke!
I get to Assieh’s to pick up Tara and Quinn. She offers me a bite to eat. Quinn asks “How’s Daddy?” I tell him about a comment you made to one of the nurses today. You asked her “Is it Christmas time yet?” It got me wondering if there is more to this comment then trying to be funny or a random query. This is the second time, When you were in the ICU you wrote this question on paper.
“Maybe Daddy is worried he is going too miss helping Santa.” Quinn suggests. This seems like a reasonable explanation to a seven-year old.
Two years ago, Chris let the children in on a secret. He and a few other daddies around the world had been specially chosen to help Santa on Christmas Eve. That Christmas Eve Chris and Mr. Borden (a teacher from Tara and Quinn’s school) were helping Santa with the sled. At some point in the evening, Santa did a fancy flying maneuver over a forest and Chris fell out and into the woods. It took a little while but Santa did find him and picked him up to help finish off the night’s work. Santa, being a merry old elf with a rather odd sense of humor, teased Chris the rest of the night about the incident.
In the morning, under the tree was a present from Santa for Chris. It was wrapped up. Chris opened it. Inside the package was a flashlight with a note saying that “Next year, maybe you will learn to stay on the sled.”
I don’t know the meaning of “Is it Christmastime yet.” It’s trapped in your head meanwhile my mind keeps trying to find tries to find meaning in each day. “When God closes a door, he opens a window.” Could being Santa’s helper be your ‘Window’ to the “Door’ that your stroke closed.
Erin’s father, Donald, is one of Chris’ best friends. They met soon after we moved to Truro. Donald is a soft-spoken gentleman with a bright inquisitive mind and an eye for finding beautiful useful things in wood. He taught Chris many woodworking tricks. When he and Chris get together, Chris would make him giggle in the most endearing way.
Chris loved Donald’s wife, Bet, too. Bet was born in Ireland and still had her beautiful full Irish accent. Chris was very sad when she died about 8 years ago. Donald’s daughter, Erin, lives in England and comes to Canada as often as she can to tend to Donald’s needs. When she’s not here Chris does. He would visit Donald in the senior’s home two to three times a week. I think Chris regards Donald as a surrogate grandfather of sorts.
Generally when Erin is in Canada, she stays with Donald to keep him company. But today, he loaned Erin out to drive me to visit you. Donald is very interested in your progress.
Erin and I talk about how adaptable people can be to their new set of circumstances. She tells me of a mutual friend that you have who, had a very severe stroke at a young age. His life is a lot different now but he still continues to embrace life despite the differences.
This brought to my mind an email that Janice (from PEI) had sent me about a veterinary meeting she had gone to last weekend. She was very excited about it. The topic was the ‘Disability Paradox’.
Her email says the "Disability Paradox is a phenomenon scientifically proven over and over again from human studies. It states that disabled (or sick in other ways eg. cancer) patients surveyed report basically the SAME or better quality of life (QOL) before and after their medical condition once the adjustment period has lapsed. AMAZING because you would automatically think the QOL would go down after the problem occurred but it doesn't.’
“This is because at first all you focus on are the bad things ("focusing illusion") but then later you find out that there are still good things. The second reason is evolutionary for survival and what happens is that adaptation occurs so that an event (bad or good) doesn't take up so much of you brain that you give it too much attention.”
“We are hardwired to do these things. It's NOT a decision or choice. The third part of the paradox is called ("Scale Recalibration") wherein you now see that positive things are possible and likely give them more weight. Things like: Social interaction and human contact, Mental stimulation and other engaging activities. Maybe you can't do the same things even walk, talk, etc. but the weight shifts to what you can do.”
She goes on to cite an example of this: “ I saw Micheal J. Fox on "The Hour" with George Stroumboulopoulos. When asked if he could change his condition, Parkinson’s, that he wouldn't! Because of the insight, experience, people, etc that it has brought to his life. Before he drank partied and wasted his life even though physically he was fine so obviously the NEW set of values and abilities superseded the old.”
Janice concludes; “So I guess I believe the "Disability Paradox" AND the speaker said that even when you tell patients this paradox exists the initial adjustment is so overwhelming that they do not believe it is or can ever be true; yet, when surveyed later they have similar QOL scores. Weird but interesting. These are scored themselves not by someone externally assessing their QOL. I never thought about this before because I never had any real reason to.”
This certainly explains a lot about the strength of the human spirit to survive. And in fact, in my observation, it explains a lot about animal’s determination to survive and not lament their circumstances.
When I explained this to Erin she summed it neatly up into a short sentence. “When God closes a door, he opens a window.” Funny how people with scientific backgrounds have to analyze something that Mothers and other wise people have been saying for years!
I’m worried about Quinn – all his nightly noises are probably preventing him from getting a good sleep. I booked an appointment with Dr Bell for Quinn for 9 AM tomorrow.
You had just woken up when I came into your room. Sue and Kristy are right on my heels. Kirsty is interested in your left-sided perceptions and visual field. Your eyes drift to the right by default. Is this because you see better this side or because you are just not as cognitively aware of your left side. I believe you are staring to connect to your left … but I can see it will take time. You are pretty tired as Kristy works with you. It’s hard to keep your attention. She says it’s still early and everything you do is a huge effort.
A simple thing like “Look to your left” needs you have to listen to the words, understand and remember which is left then you have to will your body to do all this …When the wiring is slow, this whole process takes a long time. It’s easy in that time to loose the thought, especially if you are sleepy as you are today.
Sue is concerned with communication. She wants your effort to communicate to be as easy as possible. We know you can communicate so we don’t want you to waste energy on this skill. You need to save your energy to work on other skills like connect with your left side.
Your mouth care hasn’t been done today yet. So while you are awake, Sue cleans your mouth. I’ll bet it felt nice. I tell her about you brushing your own teeth on the weekend. You have no energy for that today. Sue brushes your teeth too. I ask if your throat is sore. You gesture so-so with your hand.
You do breathe through your nose some but mostly you breathe through your mouth. This would dry your throat out. You have always been susceptible to sore throats. This doesn’t help.
The charge nurse arranged for a room change. You get moved to 7357. It’s a single room and a lot quieter. This should help your sleep during the night.
Physio Steve and Linda are first to visit you in the new room. They get you sitting on the edge of the bed and move you side to side testing you balance and strength. Linda feels your abdominal muscles and is pleased. She feels some strength. I ask if you have a 6 pack or a 3 pack (because I was worried that only the right side had muscle tone). She smiles and says “There’s definitely a 6 pack!”
Your Mom, Dad and I talk quietly while you sleep. Erin returns to visit you. “Did I wake you?” She asks, waiting to hear your response. Erin says the whenever you called her, you would always start the conversation with “Did I wake you?” This became an ongoing joke between you.
She did wake you, but you were clearly pleased to see her. She said that she would do some reflexology on you on her next visit. You looked pleased with this thought.
The charge nurse has also arranged for you to get pain medication on request. I try to show you how to use the buzzer so that you can tell the nurse that you have pain.
I have to go back home. I lean over and say my good byes. “I love you, be strong and get well.” You say “I love you too” and then you kiss me. Not an air-kiss, but a real pucker-up kiss that made a smooch noise! Wow, what lip power. I felt great. Our first kiss since the stroke!
I get to Assieh’s to pick up Tara and Quinn. She offers me a bite to eat. Quinn asks “How’s Daddy?” I tell him about a comment you made to one of the nurses today. You asked her “Is it Christmas time yet?” It got me wondering if there is more to this comment then trying to be funny or a random query. This is the second time, When you were in the ICU you wrote this question on paper.
“Maybe Daddy is worried he is going too miss helping Santa.” Quinn suggests. This seems like a reasonable explanation to a seven-year old.
Two years ago, Chris let the children in on a secret. He and a few other daddies around the world had been specially chosen to help Santa on Christmas Eve. That Christmas Eve Chris and Mr. Borden (a teacher from Tara and Quinn’s school) were helping Santa with the sled. At some point in the evening, Santa did a fancy flying maneuver over a forest and Chris fell out and into the woods. It took a little while but Santa did find him and picked him up to help finish off the night’s work. Santa, being a merry old elf with a rather odd sense of humor, teased Chris the rest of the night about the incident.
In the morning, under the tree was a present from Santa for Chris. It was wrapped up. Chris opened it. Inside the package was a flashlight with a note saying that “Next year, maybe you will learn to stay on the sled.”
I don’t know the meaning of “Is it Christmastime yet.” It’s trapped in your head meanwhile my mind keeps trying to find tries to find meaning in each day. “When God closes a door, he opens a window.” Could being Santa’s helper be your ‘Window’ to the “Door’ that your stroke closed.
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