Last night, you called home for the first by yourself. You used the phone. Although this is a simple feat for most of us, the idea of dialing a phone had eluded. But like the TV, if you are motivated, you will re-learn. You remembered how to get an outside line and you called home! It was so good to hear your voice. This is another level of independence gained back.
Today while I was at work, you called again! Cecelia, came running back to the treatment room and said in a cute school girl way “Your husband is on the phone!” I felt transformed, for a minute. I felt like I was 15 years old and a girlfriend had just told me my ‘boyfriend’ is on the phone and it was the first call from a boy I liked at school. It felt great!
You asked when could I get in to see you and I said after work. You were a little upset. You had a restless night. Over the past few weeks, I have seen a pattern. A restless night brings with it more emotional days. You need me. I said I’d be right in after work.
Joye heard the worry in my voice. A little later in the day, she suggested that since it wasn’t that busy, some of my appointments could be handled by Melissa and I could get off sooner! She had it all arranged to get me out of there and in to your arms. I am so blessed to work with such amazing people.
So after walking Annie home, I went to the hospital. I held you and we cried together.
A little later, Megan came to visit. You are pleased to see her. Physio came shortly after. They got you into a sitting position at the side of the bed. Then raised the bed so that you are half sitting and half leaning against the side of the bed. This is as close to standing as you could be. From this position, the physio and OT team got you to use your electric razor. This, you can do slowly. Sometimes you noticed that you were listing to the right and correct yourself and other times you had to be reminded that you are getting off balance. This is a great exercise for you because it gets you to focus on the task of shaving, not on the goal of re-learning your posture.
Just seeing you almost standing and shaving yourself fills me with hope and pride in your progress. This is my mental picture of progress for the week.
The physio team gets you to straighten you back. “Look at his T spine extension!” they said excitedly. You beam with pride at the comment and suggest “I can practice it all day long.” Megan noted “This is coming from a man who utterly refused to sit in his chair last week!” You jokingly express a concern that the physio team is so impressed with you today that they will ambush you at the interview next week just so they can keep you in Truro with them.
Who would have thought that the silver lining to nearly dying is that you will gain a full inch in height because you have better posture with your newly found skill: T-spine extension.
You got a letter from the MSI to renew your health card today. At the bottom of the renewal form, is the section relating to organ donation. I remind you that this act of generosity brought you back to us. You signed it without hesitation. The form asks if there are certain organs that you wish to donate or just donate the whole body. “It’s all or nothing” you said.
You have a few weeping moments after Megan leaves. Between sobs you start to list the members to the ‘People who have seen you cry and held you hand’ club. The list is growing but the strength you get from each of these experiences helps you get stronger. You are reminded that there are many people who are here to help you and the gratitude give you strength.
Tonight, I went out to dinner with Terry and Chris G., they were some my first responders on that horrible night when I thought you were dying. Terry had a car accident several years ago, she described the scene and the terror she felt. She said she would never forget the eyes or the name of her first responder. I understand how the memories of such a vivid moment are wired into your brain permanently. The heighten emotions of the moment made it non-erasable.
I reminded them that the last time I had sat down at a table with them was that night. The night of your stroke. That night, I was drowning and I didn’t knew what to do. I didn’t know where to reach for help. They were there. They held my hands and they held me and lead me onto my path of recovery.
We talk about you and your road to recovery. I even relaxed enough to have a glass of wine. In some ways, I feel I have found my pace in this marathon and I can feel strong now. I am learning to empathize with your pain and loss and not let it consume me. If I am consumed, I can’t be a pillar for you.
As we are served our dinner, I notice that a salad dressing container had the number 29 on it. A few months ago I would have thought that that was a sign, now I think of it as a coincidence. In those early days, my desperate mind looked for signs. I looked every where and found many … but what did they really mean. One vivid sunny day I was driving back home alone after a visit with you, I think it was during the MRSA scare.
As I drove down North street, barely holding it together, I spotted a pedristarin stop suddely and back track a few steps to try to befriend a black and white cat. A minute later, I pass a male runner running over the bridge along with two children, who looked a little older then Tara and Quinn. Another sign. As the car entered the bridge the traffic was routed into one lane. The reason became apparent when I crested the bridge’s middle. There were police cars blocking the lane and clinging to the outside of the fencing of the bridge was a person. It was a slow-motion moment in my mind but I my mind identified the person as a jumper. Someone, who wanted to die. Was this a sign too? I cried all the way home.
Today I am hard wiring the picture I have of you in my mind, almost standing, shaving and joking around. This will be a non- erasable file. And for now, this will be my mind’s screen saver. It is my new sign.
Saturday, December 5, 2009
Friday, December 4, 2009
Thursday December 3 – Sadness or Depression
Today was my ‘day off’ from work at the veterinary hospital, but it was my ‘day on’ with everything else. Tara and Quinn were off from school today – parent-teacher interview day. They wanted one on one time with Fran and me. This made for a busy day. I visited you first thing in the morning and got to meet with Dr. Feltmate and the dietician. It’s official, you are off the PEG tube feeding at night now. They were going to weigh you today. They will reweigh you early next week and see how you managed to maintain your weight.
You are still having bouts of profound sadness, but you can be rallied out of them with a little nurturing and supportive kind words. You are passed the point of caring who you cry in front of. The sadness rules the moment. I don’t think this is depression. The depression that I’ve seen is much deeper and darker then these periods of weeping. You haven’t received any more extra medication for these episodes. We have decided to reserve these drugs for episodes that interfere with sleep and other important daily activities.
I am very aware that the antidepressant you are on now may not be the right drug for you. The challenge is finding the right drug. As I understand it, it is a bit of trial and error to the process. The frustrating thing is that the drugs take a while to work, so it is hard to know when the drug is not working and when is it time to try something different. You have been on this antidepressant for a little over three weeks and you have a lot to be depressed about so a few bouts of profound sadness doesn’t worry me now but I do want to watch that closely. We talk about it and decide to wait until next week’s tele-health interview. If you are going to NSRC
Some of the sadness is probably part of the healing process. I am sure that some of your sadness is compounded by the constant pain you experience.
At times, in the middle of a bout of sadness, You express the wish to die. These are very hard words to hear. You have even asked to see your living will. I think that you say that you want to die out of sheer frustration and anger not really depression. I remember when I had knee surgery after Tara was born and the post surgical knee recovery lead to a bad back. All this plus a new baby and brand new parenting demands lead me to feelings of despair. There were moments that I though I could not continue to live like this. The constant pain ate at my morale. I can only imagine what it does to you.
I think your wish to die is really a wish to stop living this reality. The other day, I met some ladies as I entered the hospital. They asked for an update on you. I tell them we are waiting for the rehab doors to open. They suggested that I was a ‘strong lady’. I don’t think I’m strong, I’m just headstrong. I will not give up on you. Even if you try to give up on you … I won’t.
Motivating you into your chair is a bit of a trick. You like the idea of the chair because it is one step towards independence. But you don’t want to get into it. You feel trapped in it with pain at times and no one else there to help pass the time. Occasionally you have been positioned away from the buzzer, so you are unable to call of help. This experience has made a big impression on you and you are scared to go into the chair.
Today’s nurse, is sweet and caring. She cleverly said, ‘I can’t make you get in your chair but I think it would be good for you and I’d like to see you in your chair.” She said with a smile. You caved and consented to getting in the chair.
The hospital is quite dry. Your skin is feeling it. This is a perennial event for you but it is worse this year. This is aggravated by the food and a little drool that collects in the left corner of your mouth. So the LPN and I make an executive decision along with your help. We give you a clean shave. The beard is gone for now.
Yesterday, during a better moment, you talked about your strong will and determination. You recalled as a kid playing sports, if you got knocked about or felt cheated, you didn’t get angry or give up; you played harder and you played smarter.
This is the energy path that you have to tap into now. You must redirect all your negative energy towards the goal of recovery.
We talked about your defective filter. There are many advantages to having no filter. You actually communicate much better. I know what you are thinking, you hold nothing back but the disadvantage is that you can cross social barriers. The hospital staff seems quite prepared to deal with this. I knew that this is the result of the stroke and not really you, but as your wife, I feel a little uncomfortable for people on the receiving end.
I suspect that you need help to rebuild your filter. You need guidance ... Non judgmental guidance to know where to draw the line. Just as a young child must learn social boundries, you must re-learn them.
I see another purpose of the journal emerging. It is a sounding board for the pep talks that I want to give to you to help guide you on your path to healing. I can’t think up motivating talks on the fly – I have to think them out and fine-tune them so they will be the right talk for the situation.
The rest of the day is busy. Tara and I do her Christmas shopping. She had a plan of what to get and we were done within an hour! She enjoyed the excursion and I enjoyed her delight at making decisions about her present selection. In total she spent about $30.00 dollars that she had saved and she is very pleased with her efforts. Quinn and I did some shopping too. He was a little less focused on the task at hand, but still managed to accomplish a lot in a short time. We went to see my Dad. We decorated his room with homemade Christmas decorations that Fran and the children had made. Dad was having a bit of a rough moment, but it passed and he enjoyed eating some sweets. I worry that the children will draw some connections between your health issues and Dad’s. They have seen you both cry today. I try to downplay any similarities between you. They don’t need any more reasons for anxiety.
You are still having bouts of profound sadness, but you can be rallied out of them with a little nurturing and supportive kind words. You are passed the point of caring who you cry in front of. The sadness rules the moment. I don’t think this is depression. The depression that I’ve seen is much deeper and darker then these periods of weeping. You haven’t received any more extra medication for these episodes. We have decided to reserve these drugs for episodes that interfere with sleep and other important daily activities.
I am very aware that the antidepressant you are on now may not be the right drug for you. The challenge is finding the right drug. As I understand it, it is a bit of trial and error to the process. The frustrating thing is that the drugs take a while to work, so it is hard to know when the drug is not working and when is it time to try something different. You have been on this antidepressant for a little over three weeks and you have a lot to be depressed about so a few bouts of profound sadness doesn’t worry me now but I do want to watch that closely. We talk about it and decide to wait until next week’s tele-health interview. If you are going to NSRC
Some of the sadness is probably part of the healing process. I am sure that some of your sadness is compounded by the constant pain you experience.
At times, in the middle of a bout of sadness, You express the wish to die. These are very hard words to hear. You have even asked to see your living will. I think that you say that you want to die out of sheer frustration and anger not really depression. I remember when I had knee surgery after Tara was born and the post surgical knee recovery lead to a bad back. All this plus a new baby and brand new parenting demands lead me to feelings of despair. There were moments that I though I could not continue to live like this. The constant pain ate at my morale. I can only imagine what it does to you.
I think your wish to die is really a wish to stop living this reality. The other day, I met some ladies as I entered the hospital. They asked for an update on you. I tell them we are waiting for the rehab doors to open. They suggested that I was a ‘strong lady’. I don’t think I’m strong, I’m just headstrong. I will not give up on you. Even if you try to give up on you … I won’t.
Motivating you into your chair is a bit of a trick. You like the idea of the chair because it is one step towards independence. But you don’t want to get into it. You feel trapped in it with pain at times and no one else there to help pass the time. Occasionally you have been positioned away from the buzzer, so you are unable to call of help. This experience has made a big impression on you and you are scared to go into the chair.
Today’s nurse, is sweet and caring. She cleverly said, ‘I can’t make you get in your chair but I think it would be good for you and I’d like to see you in your chair.” She said with a smile. You caved and consented to getting in the chair.
The hospital is quite dry. Your skin is feeling it. This is a perennial event for you but it is worse this year. This is aggravated by the food and a little drool that collects in the left corner of your mouth. So the LPN and I make an executive decision along with your help. We give you a clean shave. The beard is gone for now.
Yesterday, during a better moment, you talked about your strong will and determination. You recalled as a kid playing sports, if you got knocked about or felt cheated, you didn’t get angry or give up; you played harder and you played smarter.
This is the energy path that you have to tap into now. You must redirect all your negative energy towards the goal of recovery.
We talked about your defective filter. There are many advantages to having no filter. You actually communicate much better. I know what you are thinking, you hold nothing back but the disadvantage is that you can cross social barriers. The hospital staff seems quite prepared to deal with this. I knew that this is the result of the stroke and not really you, but as your wife, I feel a little uncomfortable for people on the receiving end.
I suspect that you need help to rebuild your filter. You need guidance ... Non judgmental guidance to know where to draw the line. Just as a young child must learn social boundries, you must re-learn them.
I see another purpose of the journal emerging. It is a sounding board for the pep talks that I want to give to you to help guide you on your path to healing. I can’t think up motivating talks on the fly – I have to think them out and fine-tune them so they will be the right talk for the situation.
The rest of the day is busy. Tara and I do her Christmas shopping. She had a plan of what to get and we were done within an hour! She enjoyed the excursion and I enjoyed her delight at making decisions about her present selection. In total she spent about $30.00 dollars that she had saved and she is very pleased with her efforts. Quinn and I did some shopping too. He was a little less focused on the task at hand, but still managed to accomplish a lot in a short time. We went to see my Dad. We decorated his room with homemade Christmas decorations that Fran and the children had made. Dad was having a bit of a rough moment, but it passed and he enjoyed eating some sweets. I worry that the children will draw some connections between your health issues and Dad’s. They have seen you both cry today. I try to downplay any similarities between you. They don’t need any more reasons for anxiety.
Thursday, December 3, 2009
Wednesday December 2 - Tooth Fairies, Santa’s Elves and Sweet Dreams
Tara is upset this morning. She had lost a tooth yesterday and the tooth fairy forgot to come. I was tired last night and went to bed early. Tara is also sore from the flu vaccine. But she wants to go to school. Quinn doesn’t feel good this morning and Fran and I decide to let him have a little extra time at home before school and wait for some tylenol to kick in.
As I walk to work with Annie, I kick myself about the tooth fairy. I wonder how the tooth fairy can redeem herself. A handwritten note, more money then usual, or perhaps a different sort of treasure. Tar has noted that the exchange rate for teeth has shifted a bit. The last teeth she lost were before your stroke. She lost two in one day. She got a crisp $5.00 bill for them. She was pleased at the time. After your stroke, Quinn lost a tooth and the tooth fairy gave Quinn almost $4.00 in loonies, quarters, dimes nickels and pennies. She is suspicious that something is unfair is occurring and now she was forgotten.
I wish you were here. If you were, this would not have happened and if it did, you would have come up with a plan to make the outcome better then ever.
Tara shares her concerns with you about the tooth fairy. You offer some advise to be patient and that the tooth fairy may be looking for a more grown up attitude before collecting the tooth.
You get a look at the report cards. Quinn is quite pleased with his. You tell him that he is a great kid and doing well. Tara is a little disappointed with hers. She thinks she could do better.
In the hour or so that we spent with you, you cried quite a bit. I try to get you to practice breathing exercises that might help you gain a little control. Quinn tries to sooth you, I want you to be home for Christmas. You try to explain to Quinn and Tara that you were sad because you realize that you are not the parent that you used to be. “I hope to be that person again someday but it may take a while. I hope you can stand by me and help me. I know there will be times when you want to be with Mummy or someone else and I understand that. When it comes up we will work it out then.”
Quinn is finished his letter to Santa Claus, he places it carefully in the fireplace for magic to make it float away.
As I try to get dinner on the table the blood donor services caal to ask you to donate blood. I tell them about your situation. The nurse says that you may not be able to give blood again. She will put a request to get this checked out in six months. They contact your doctor to see if you are fit to donate or not. I think that it is ironic that being an organ donor saved your life but in doing so you can’t donate your blood anymore. I suppose you can still donate you body.
I talk to Steve, your brother, on the phone about your condition and the upcoming assessment next week. He asks about me. I choke up. I can’t help but feel sad when I think about all that you lost. Both physical and emotional things as well as the dreams for the future you used to have. This stroke has stolen most of these dreams.
My heart aches when I think about this too much. I feel guilty that I want to turn off this pain and think about other things. When I’m at work or doing something with the children - I can turn off those feelings … I feel guilty that I can turn them off and you can’t.
I got a card today that had good advise: ‘Close your eyes and remember a time when you felt safe, when you felt strong, when you felt like everything was right with the world …Now open your eyes and let those healing thoughts guide you to a better day.’ I know I can’t dwell on our losses instead I must concentrate on the safe and strong present and future that we have. This is the only way I can feed you positive energy.
You have waves of sadness tonight. I went back to the hospital after the children are in bed. I hug you and hold you and try to say the right things. Part of the reason you are sad is that earlier in the day, Fran and Quinn were visiting you and Fran had to pop out for 15 minutes to bring Tara her ballet things for her class. Quinn didn’t want to stay with you alone. He wanted to go with Fran. You felt like a second class parent. You felt unwanted. This is a new set of feelings for you. Being a parent has always been second nature to you not second class.
We listen to some music together on your ipod, each of us with an ear piece in our ears. The physio team asked you to make a list of five of your favorite songs from the 1970’s. You had lots of songs from that era, but it was a challenge to narrow it down to five songs.
We talk about rehab and your strong determination to make the best recovery you can. Your attitude, at this point is the most important asset you have. Without the right attitude you will not make the best recovery you can.
Tonight, both the tooth fairy and Santa Claus will visit tonight. I hope sweet healing dreams will visit you.
As I walk to work with Annie, I kick myself about the tooth fairy. I wonder how the tooth fairy can redeem herself. A handwritten note, more money then usual, or perhaps a different sort of treasure. Tar has noted that the exchange rate for teeth has shifted a bit. The last teeth she lost were before your stroke. She lost two in one day. She got a crisp $5.00 bill for them. She was pleased at the time. After your stroke, Quinn lost a tooth and the tooth fairy gave Quinn almost $4.00 in loonies, quarters, dimes nickels and pennies. She is suspicious that something is unfair is occurring and now she was forgotten.
I wish you were here. If you were, this would not have happened and if it did, you would have come up with a plan to make the outcome better then ever.
Tara shares her concerns with you about the tooth fairy. You offer some advise to be patient and that the tooth fairy may be looking for a more grown up attitude before collecting the tooth.
You get a look at the report cards. Quinn is quite pleased with his. You tell him that he is a great kid and doing well. Tara is a little disappointed with hers. She thinks she could do better.
In the hour or so that we spent with you, you cried quite a bit. I try to get you to practice breathing exercises that might help you gain a little control. Quinn tries to sooth you, I want you to be home for Christmas. You try to explain to Quinn and Tara that you were sad because you realize that you are not the parent that you used to be. “I hope to be that person again someday but it may take a while. I hope you can stand by me and help me. I know there will be times when you want to be with Mummy or someone else and I understand that. When it comes up we will work it out then.”
Quinn is finished his letter to Santa Claus, he places it carefully in the fireplace for magic to make it float away.
As I try to get dinner on the table the blood donor services caal to ask you to donate blood. I tell them about your situation. The nurse says that you may not be able to give blood again. She will put a request to get this checked out in six months. They contact your doctor to see if you are fit to donate or not. I think that it is ironic that being an organ donor saved your life but in doing so you can’t donate your blood anymore. I suppose you can still donate you body.
I talk to Steve, your brother, on the phone about your condition and the upcoming assessment next week. He asks about me. I choke up. I can’t help but feel sad when I think about all that you lost. Both physical and emotional things as well as the dreams for the future you used to have. This stroke has stolen most of these dreams.
My heart aches when I think about this too much. I feel guilty that I want to turn off this pain and think about other things. When I’m at work or doing something with the children - I can turn off those feelings … I feel guilty that I can turn them off and you can’t.
I got a card today that had good advise: ‘Close your eyes and remember a time when you felt safe, when you felt strong, when you felt like everything was right with the world …Now open your eyes and let those healing thoughts guide you to a better day.’ I know I can’t dwell on our losses instead I must concentrate on the safe and strong present and future that we have. This is the only way I can feed you positive energy.
You have waves of sadness tonight. I went back to the hospital after the children are in bed. I hug you and hold you and try to say the right things. Part of the reason you are sad is that earlier in the day, Fran and Quinn were visiting you and Fran had to pop out for 15 minutes to bring Tara her ballet things for her class. Quinn didn’t want to stay with you alone. He wanted to go with Fran. You felt like a second class parent. You felt unwanted. This is a new set of feelings for you. Being a parent has always been second nature to you not second class.
We listen to some music together on your ipod, each of us with an ear piece in our ears. The physio team asked you to make a list of five of your favorite songs from the 1970’s. You had lots of songs from that era, but it was a challenge to narrow it down to five songs.
We talk about rehab and your strong determination to make the best recovery you can. Your attitude, at this point is the most important asset you have. Without the right attitude you will not make the best recovery you can.
Tonight, both the tooth fairy and Santa Claus will visit tonight. I hope sweet healing dreams will visit you.
Tuesday December 1 - Is the Juice Worth the Squeeze?
I had a great sleep with good dreams and a good morning. Tara had a bad dream about you dying and bad guys chasing us and then I die and it’s just her and Quinn on their own against the bad guys. It’s a pretty revealing dream – I think. She rallies once she is really awake and starts her day with enthusiasm.
When I get in to see you today, You are finishing off a good breakfast. Your appetite has been good. I’m sure you have gained some more weight. We will have to watch the food input now. You have been spoiled with chocolate bars, ice cream and Tim’s 4X4 coffees. A lot of empty calories as well as nutritious calories from the meals and the liquid food via the tube at night. Dr. Feltmate is going to check with the dietician about your night feedings. They may stop the night feedings for a week and see what happens to your weight. I can’t help but think that the night feedings have contributed to your gut irregularities.
“Is the juice worth the squeeze?” This is a phrase you have been saying a lot of lately. It’s a line from a movie. I don’t think it was an award winning quote or even a very good movie, but that line has captured you imagination. You discuss this concept with Dr. Feltmate. You suggest that this question could be asked about any undertaking.
“Is the juice worth the squeeze?” You explain to Dr. Feltmate that if one puts a lot of work into something, one must decide if the results were worth the effort. You make an example, - a puzzle that is unfinished but gets wrecked and you must re-do it. Sometimes, you point out, the process of learning is the ‘real juice’ not the resulting end product (a finished puzzle). The learning that went into the puzzle so far will help you solve it again.
You make an excellent point - The act of learning, or in your case the act of re-learning is the juice.
You said today, out of the blue, “My left hand doesn’t work”. You said this with a hint of irritation. This is the first time I have heard actually acknowledge your left hand verbally … even thought it was a rather negative thought. (You wondered why we keep it around. “Let’s just cut it of and throw it in the trash bin.”) Later, you went on to say while I was rubbing you feet, that you could feel a tickle sensation in your left leg! This certainly is progress. As little ago as last week you talked about your wedding ring being on someone else’s hand. This is progress.
We learn that you have an appointment for the NSRC via tele-health for next Tuesday. We are both excited about this. The Barthel score initially when done at the QE2 was 4%, last week it skyrocketed to 17%! This qualifies you for admittance to the NSRC but you must be re-evaluated again. You are not happy with 17%. Although you were never an over achiever, you are not pleased with 17%. I point out to you to focus on the improvement, not the actual score. 4 to 17% is a 425% increase.
You had a good physio session and the physio team designed a letter search game. Five letters were hidden at various spots along the hall. You had to wheel down the hall and search the walls for the letters. Three letters were on the left and two letters were on the right. The left, of course, is your weak area. You found four of the five letters. … 80 % … that’s better then 17% I point out to you. The letters you spotted were C H I S, you missed R. I think Tara and Quinn would like to play this game with you. Maybe on Thursday, which is an in-service day.
We met up with Joan, a fellow patient at the hospital, on the way back from the word search. We talk for a little while then you get talking with the ladies at the nurses’ station. Getting out and talking with people helps pass the time.
It is a good day. You are doing so well. You will have your stuck days, but you will have to remember that there are good days too and the next day may be better. When you are stuck, you are not stuck forever, just for now … you will get unstuck.
I have noticed that it’s difficult for the nursing staff to stand by you and just talk you through the process of changing your shirt. An efficient, yet, rushed nurse would have difficulty letting you take the time to do this yourself. On the days that I’m with you I try to encourage this sort of activity.
Today you received a wrist band blood pressure monitor in the mail from your parents. We try it out. After a little experimenting, we get it going. It is liberating, knowing that you can watch for problems before they are problems.
Tara, Quinn and I get our flu shots this evening. The children were a little apprehensive but they did it. Quinn volunteered to go first. Once he is in position to get the needle, I distracted him by asking him to spell his name backwards. He didn’t even notice the needle. Tara went next. She spelled ‘Truro’ backwards. She felt her needle more. I was last. Not to be outdone by the children, the nurse, who is getting on to the idea of how to distract, asked me to spell ‘Musquodoboit’ backwards! Well that stumped me – I could hardly spell that word forwards on a good day. We were told to move our arms around after the needle. So I started to hum the chicken dance – but only Quinn took me up on it. I think that I embarrassed Tara.
By the time we got back to your room with pizza for dinner, Tara’s arm was quite sore but strangely, it didn’t affect her appetite. She wanted three pieces of pizza! I think she felt the juice was worth the squeeze.
I wonder how you will feel about rehab … Will the juice be worth the squeeze?
When I get in to see you today, You are finishing off a good breakfast. Your appetite has been good. I’m sure you have gained some more weight. We will have to watch the food input now. You have been spoiled with chocolate bars, ice cream and Tim’s 4X4 coffees. A lot of empty calories as well as nutritious calories from the meals and the liquid food via the tube at night. Dr. Feltmate is going to check with the dietician about your night feedings. They may stop the night feedings for a week and see what happens to your weight. I can’t help but think that the night feedings have contributed to your gut irregularities.
“Is the juice worth the squeeze?” This is a phrase you have been saying a lot of lately. It’s a line from a movie. I don’t think it was an award winning quote or even a very good movie, but that line has captured you imagination. You discuss this concept with Dr. Feltmate. You suggest that this question could be asked about any undertaking.
“Is the juice worth the squeeze?” You explain to Dr. Feltmate that if one puts a lot of work into something, one must decide if the results were worth the effort. You make an example, - a puzzle that is unfinished but gets wrecked and you must re-do it. Sometimes, you point out, the process of learning is the ‘real juice’ not the resulting end product (a finished puzzle). The learning that went into the puzzle so far will help you solve it again.
You make an excellent point - The act of learning, or in your case the act of re-learning is the juice.
You said today, out of the blue, “My left hand doesn’t work”. You said this with a hint of irritation. This is the first time I have heard actually acknowledge your left hand verbally … even thought it was a rather negative thought. (You wondered why we keep it around. “Let’s just cut it of and throw it in the trash bin.”) Later, you went on to say while I was rubbing you feet, that you could feel a tickle sensation in your left leg! This certainly is progress. As little ago as last week you talked about your wedding ring being on someone else’s hand. This is progress.
We learn that you have an appointment for the NSRC via tele-health for next Tuesday. We are both excited about this. The Barthel score initially when done at the QE2 was 4%, last week it skyrocketed to 17%! This qualifies you for admittance to the NSRC but you must be re-evaluated again. You are not happy with 17%. Although you were never an over achiever, you are not pleased with 17%. I point out to you to focus on the improvement, not the actual score. 4 to 17% is a 425% increase.
You had a good physio session and the physio team designed a letter search game. Five letters were hidden at various spots along the hall. You had to wheel down the hall and search the walls for the letters. Three letters were on the left and two letters were on the right. The left, of course, is your weak area. You found four of the five letters. … 80 % … that’s better then 17% I point out to you. The letters you spotted were C H I S, you missed R. I think Tara and Quinn would like to play this game with you. Maybe on Thursday, which is an in-service day.
We met up with Joan, a fellow patient at the hospital, on the way back from the word search. We talk for a little while then you get talking with the ladies at the nurses’ station. Getting out and talking with people helps pass the time.
It is a good day. You are doing so well. You will have your stuck days, but you will have to remember that there are good days too and the next day may be better. When you are stuck, you are not stuck forever, just for now … you will get unstuck.
I have noticed that it’s difficult for the nursing staff to stand by you and just talk you through the process of changing your shirt. An efficient, yet, rushed nurse would have difficulty letting you take the time to do this yourself. On the days that I’m with you I try to encourage this sort of activity.
Today you received a wrist band blood pressure monitor in the mail from your parents. We try it out. After a little experimenting, we get it going. It is liberating, knowing that you can watch for problems before they are problems.
Tara, Quinn and I get our flu shots this evening. The children were a little apprehensive but they did it. Quinn volunteered to go first. Once he is in position to get the needle, I distracted him by asking him to spell his name backwards. He didn’t even notice the needle. Tara went next. She spelled ‘Truro’ backwards. She felt her needle more. I was last. Not to be outdone by the children, the nurse, who is getting on to the idea of how to distract, asked me to spell ‘Musquodoboit’ backwards! Well that stumped me – I could hardly spell that word forwards on a good day. We were told to move our arms around after the needle. So I started to hum the chicken dance – but only Quinn took me up on it. I think that I embarrassed Tara.
By the time we got back to your room with pizza for dinner, Tara’s arm was quite sore but strangely, it didn’t affect her appetite. She wanted three pieces of pizza! I think she felt the juice was worth the squeeze.
I wonder how you will feel about rehab … Will the juice be worth the squeeze?
Tuesday, December 1, 2009
Monday November 30 – Operation: Home for Christmas
Since last week, when it was suggested to me that you might be able to come home for Christmas, I have taken great joy in saying this to anyone who might ask after you in the course of the day. “We hope to have him home for a little while at Christmas!” Secretly, I think that if I can say this enough times – that this will be true.
I asked you what you thought of the analogy of your recovery with a marathon. You liked it. I wondered where you thought we were in the marathon at this time. Assuming it started on stoke day and ends when you have recovered as much as you can. You said “I think we are in the port-a-potty.”
I don’t know if you were just confusing my question with a subject that is close to your heart right now – regular bathroom duties, or that you figuratively meant the port-a-potty.
Last spring in Boston, the port-a-potties got you’re a little screwed up. You had carefully timed your bodily functions to occur just before the race start time. The problem with Boston, is that the port-a-potties are quite a distance from the start line. You timed every thing well but not well enough. Once you completed the necessary bathroom duties, you had to sprint to the starting place for your bib number.
Maybe you are right, the analogy works well and that last three months have represented the time spent getting to the marathon, not the actual marathon. The early wake up, the morning walk, the coffee and the light breakfast you had and the long ride in a bus to Hopkington for the start of the race and lastly, the port-a-potty.
I called you from work a couple of times. You seem much better today. You wondered aloud if you should be committed. “Committed to what?” I ask. “Committed to the Cuckoos Nest.” The only thing that you need to commit to is to commit to getting better and get to the HSRC. Fran and Laura are visiting you this morning feeding you positive energy.
You felt you “crossed the line” last night. I pointed out to you, that with everything in life you need to know the boundaries. If you don’t know the boundaries, you can not be safe and yet still be able to spread your wings and grow as a person. Knowing where ‘the line’ is good. You may have crossed it, but you crossed back over it. On this side of ‘the line’ is rehab and your future. Now you know where the line lives in your mind you can keep your eye on it.
Tonight, I read to you an article about Trevor Greene in the Globe and Mail. A soldier from the Afghanistan war who was injured four years ago at a village meeting with an axe in the back of the head. The resulting damage was devastating. Greene, couldn’t stand or speak or do many things, but four years later, he is still making progress. And may actually walk a few steps ‘down the aisle to marry his bride to be next spring. Determination and Neuroplasticity are the keys for him and the key motivator is his bride and his four-year-old daughter. He has everything to live for … and so do you.
Quinn was sad today at bedtime. I think it started with being rushed to get to bed. Mondays are always such a rush. Get home, eat dinner, do homework and get to bed by 8:30 so that we will be able to get to school on time the next day. It’s a race and we usually end up in last place every week. This week was no different. Quinn is still eating dinner at 7:45. I said that we didn’t have time for a bedtime story. Lately, we never have time for a bedtime story. Quinn has been ripped off with the ‘snuggle in bed story time’.
Tonight Quinn’s sadness wasn’t really about missing the bedtime story. After a few minutes he said “I want Daddy home of Christmas.” I said that we were working on this idea and that we might get Daddy home.
“What are the chances?” he said.
“I don’t know Sweetie, we will just have to see.” I don’t want to make a promise I can’t keep.
“Are they fifty–fifty?” he persisted.
“Yes, I suppose the odds are fifty-fifty – we will just have to wait and see.”
He seemed a little satisfied with the answer. At least satisfied enough to go to sleep.
I talked to you at bedtime. You seem much better tonight. I told you about Quinn’s concerns. You want to be home too.
I asked you what you thought of the analogy of your recovery with a marathon. You liked it. I wondered where you thought we were in the marathon at this time. Assuming it started on stoke day and ends when you have recovered as much as you can. You said “I think we are in the port-a-potty.”
I don’t know if you were just confusing my question with a subject that is close to your heart right now – regular bathroom duties, or that you figuratively meant the port-a-potty.
Last spring in Boston, the port-a-potties got you’re a little screwed up. You had carefully timed your bodily functions to occur just before the race start time. The problem with Boston, is that the port-a-potties are quite a distance from the start line. You timed every thing well but not well enough. Once you completed the necessary bathroom duties, you had to sprint to the starting place for your bib number.
Maybe you are right, the analogy works well and that last three months have represented the time spent getting to the marathon, not the actual marathon. The early wake up, the morning walk, the coffee and the light breakfast you had and the long ride in a bus to Hopkington for the start of the race and lastly, the port-a-potty.
I called you from work a couple of times. You seem much better today. You wondered aloud if you should be committed. “Committed to what?” I ask. “Committed to the Cuckoos Nest.” The only thing that you need to commit to is to commit to getting better and get to the HSRC. Fran and Laura are visiting you this morning feeding you positive energy.
You felt you “crossed the line” last night. I pointed out to you, that with everything in life you need to know the boundaries. If you don’t know the boundaries, you can not be safe and yet still be able to spread your wings and grow as a person. Knowing where ‘the line’ is good. You may have crossed it, but you crossed back over it. On this side of ‘the line’ is rehab and your future. Now you know where the line lives in your mind you can keep your eye on it.
Tonight, I read to you an article about Trevor Greene in the Globe and Mail. A soldier from the Afghanistan war who was injured four years ago at a village meeting with an axe in the back of the head. The resulting damage was devastating. Greene, couldn’t stand or speak or do many things, but four years later, he is still making progress. And may actually walk a few steps ‘down the aisle to marry his bride to be next spring. Determination and Neuroplasticity are the keys for him and the key motivator is his bride and his four-year-old daughter. He has everything to live for … and so do you.
Quinn was sad today at bedtime. I think it started with being rushed to get to bed. Mondays are always such a rush. Get home, eat dinner, do homework and get to bed by 8:30 so that we will be able to get to school on time the next day. It’s a race and we usually end up in last place every week. This week was no different. Quinn is still eating dinner at 7:45. I said that we didn’t have time for a bedtime story. Lately, we never have time for a bedtime story. Quinn has been ripped off with the ‘snuggle in bed story time’.
Tonight Quinn’s sadness wasn’t really about missing the bedtime story. After a few minutes he said “I want Daddy home of Christmas.” I said that we were working on this idea and that we might get Daddy home.
“What are the chances?” he said.
“I don’t know Sweetie, we will just have to see.” I don’t want to make a promise I can’t keep.
“Are they fifty–fifty?” he persisted.
“Yes, I suppose the odds are fifty-fifty – we will just have to wait and see.”
He seemed a little satisfied with the answer. At least satisfied enough to go to sleep.
I talked to you at bedtime. You seem much better tonight. I told you about Quinn’s concerns. You want to be home too.
Monday, November 30, 2009
Sunday November 29 – Music and Farts
Late last night, Fran and I talked about the children and how they are doing. I told her about the day and how I think Tara has a musical mind. I wondered aloud how I could help Tara express herself musically. I don’t have an ear for music. I am always amazed at the outcome of music but the mechanics elude me. I couldn’t even tune Tara’s ukulele. Thankfully she learned how to do it by the second week of lessons.
Fran agrees. I think she is a good judge of this, because she has a musical mind too. Fran has always found music to be a natural thing, almost a function of her biology. On the other hand, I might think occasionally that it would be nice to play a tune or two but I never really found solace in music. I rarely listen to music and if I have a choice between a music or talk radio station – I’ll pick talk radio (CBC of course) and if I don’t have the choice of talk, I would prefer silence. It’s not that I dislike music. I love to sing (rather badly) and dance (also rather badly) … I just don’t enjoy to just listen to it.
I may not understand music that well but I do understand Tara (sometimes), and I know that she feels music and thinks about music and sees music as well as hears music. She is musical. I think that music could be an outlet for her – but I’m not the person to help to get to the point where she can do it herself.
I asked you “How you feel music?”. You said that, for you, music is like air. With the right music, you feel you can breathe it in and it gives you energy and motivation. Tara definitely got her connection from music from you.
Last evening, Marianne dropped by with some very thoughtful presents for the children. A diary for Tara and a sketch pad for Quinn along with candy for you. Quinn took to the sketch pad right away. Tara wasn’t sure if a journal would be something she’d like to do. This morning before breakfast was finished, Tara was on page 2 of the journal and Quinn had drawn a portrait of a kid with a very big head with chicken pox.
They continued to draw in your room, sharing the sketchbook. Tara drew a family portrait with you in the bed and the three of us around your bed. Quinn drew a portrait of you, an aerial view of a hockey rink complete with a zamboni and a parking lot for disabled drivers. The pictures really say a lot. They both focus on your condition first. I suppose that is a natural thing to do but I would like them to see you first not your condition. We posted the pictures in your room.
Yesterday, while unpacking Christmas things, we found the Santa Claus ornament that you had as a child. It was made in Japan, so I think it is probably post Second World War. It is a model of a brick house with a chimney. A small Santa is at the end of a pull line coming out of the chimney. When you pull on the line a music box plays.
I think that this ornament represents many fun-filled happy Christmas memories for you. You have carefully treasured it all these years. It even has it’s original box. Fran told you yesterday that we found it and said the music was ‘Here Comes Santa Claus’, but you said it was ‘Jingle Bells’. You made a bet. You were right. (OK, maybe Fran isn’t so musical at times). You pointed out – like you normally would that you were right and Fran was wrong. A twist on the phrase I have hear many times about me being wrong. Quinn and I high-five your right hand. Another part of you is back.
While you were napping in the afternoon, I went home and looked for something to do. There are so many projects to work on but I needed one that took me outside in the fresh air and made me feel like I did something towards your recovery. I settled on putting up the outside Christmas decorations – this is something I have never done in November before. I am usually a Dec 10th to the 15th decorator but this year is different. Very different. This year I can’t wait until Christmas because you might be home with us.
I have everything up now. All plugged in and ready to go. But I have decided that I will not put on the lights until you can come home.
During dinner tonight, Quinn, being the joker that he is, tries to demonstrate how he can make ‘fart’ noises (Sorry DeeDee) in 12 different ways. I told him not to do that at the dinner table … I said that he should finish his dinner first before putting on a show. I think this would have been a proud father moment for you.
At bedtime, you are overwhelmed with sadness. You don’t know why you are sad. You offer explanations that make sense to you like “I am a burden”; but I don’t think you really feel that way. You also thought that maybe you were scared to sleep incase you died. I got the nurse to take your blood pressure and other vital signs. They were normal. That knowledge didn’t help you. The nurses give you some extra medication. Medications can have side effects, I am worried about the possible effects of this drug. I hope to talk to Dr. Feltmate Tuesday about this.
I think a lot of the sadness is the from the neurotransmitter soup that is bathing you brain. It will take a while to sort the chemicals out. You said that at 9pm you felt a tinge of sadness but it built up and by 10:30 your feelings were out of control.
When I left your side tonight, you were drifting off to sleep.
Fran agrees. I think she is a good judge of this, because she has a musical mind too. Fran has always found music to be a natural thing, almost a function of her biology. On the other hand, I might think occasionally that it would be nice to play a tune or two but I never really found solace in music. I rarely listen to music and if I have a choice between a music or talk radio station – I’ll pick talk radio (CBC of course) and if I don’t have the choice of talk, I would prefer silence. It’s not that I dislike music. I love to sing (rather badly) and dance (also rather badly) … I just don’t enjoy to just listen to it.
I may not understand music that well but I do understand Tara (sometimes), and I know that she feels music and thinks about music and sees music as well as hears music. She is musical. I think that music could be an outlet for her – but I’m not the person to help to get to the point where she can do it herself.
I asked you “How you feel music?”. You said that, for you, music is like air. With the right music, you feel you can breathe it in and it gives you energy and motivation. Tara definitely got her connection from music from you.
Last evening, Marianne dropped by with some very thoughtful presents for the children. A diary for Tara and a sketch pad for Quinn along with candy for you. Quinn took to the sketch pad right away. Tara wasn’t sure if a journal would be something she’d like to do. This morning before breakfast was finished, Tara was on page 2 of the journal and Quinn had drawn a portrait of a kid with a very big head with chicken pox.
They continued to draw in your room, sharing the sketchbook. Tara drew a family portrait with you in the bed and the three of us around your bed. Quinn drew a portrait of you, an aerial view of a hockey rink complete with a zamboni and a parking lot for disabled drivers. The pictures really say a lot. They both focus on your condition first. I suppose that is a natural thing to do but I would like them to see you first not your condition. We posted the pictures in your room.
Yesterday, while unpacking Christmas things, we found the Santa Claus ornament that you had as a child. It was made in Japan, so I think it is probably post Second World War. It is a model of a brick house with a chimney. A small Santa is at the end of a pull line coming out of the chimney. When you pull on the line a music box plays.
I think that this ornament represents many fun-filled happy Christmas memories for you. You have carefully treasured it all these years. It even has it’s original box. Fran told you yesterday that we found it and said the music was ‘Here Comes Santa Claus’, but you said it was ‘Jingle Bells’. You made a bet. You were right. (OK, maybe Fran isn’t so musical at times). You pointed out – like you normally would that you were right and Fran was wrong. A twist on the phrase I have hear many times about me being wrong. Quinn and I high-five your right hand. Another part of you is back.
While you were napping in the afternoon, I went home and looked for something to do. There are so many projects to work on but I needed one that took me outside in the fresh air and made me feel like I did something towards your recovery. I settled on putting up the outside Christmas decorations – this is something I have never done in November before. I am usually a Dec 10th to the 15th decorator but this year is different. Very different. This year I can’t wait until Christmas because you might be home with us.
I have everything up now. All plugged in and ready to go. But I have decided that I will not put on the lights until you can come home.
During dinner tonight, Quinn, being the joker that he is, tries to demonstrate how he can make ‘fart’ noises (Sorry DeeDee) in 12 different ways. I told him not to do that at the dinner table … I said that he should finish his dinner first before putting on a show. I think this would have been a proud father moment for you.
At bedtime, you are overwhelmed with sadness. You don’t know why you are sad. You offer explanations that make sense to you like “I am a burden”; but I don’t think you really feel that way. You also thought that maybe you were scared to sleep incase you died. I got the nurse to take your blood pressure and other vital signs. They were normal. That knowledge didn’t help you. The nurses give you some extra medication. Medications can have side effects, I am worried about the possible effects of this drug. I hope to talk to Dr. Feltmate Tuesday about this.
I think a lot of the sadness is the from the neurotransmitter soup that is bathing you brain. It will take a while to sort the chemicals out. You said that at 9pm you felt a tinge of sadness but it built up and by 10:30 your feelings were out of control.
When I left your side tonight, you were drifting off to sleep.
Sunday, November 29, 2009
Saturday November 28 - The Music Connection
I think I might have had a good day … NO - actually a great day.
It started this morning without promise. I tried to sleep in and couldn’t. My mind was alert and racing at 6:30. I got up and Tara was right on my heels. I was hoping for a little peace and quiet, but Tara is not someone I can be peaceful and quiet with. Her brain is always going and I find it hard to keep up to her level of energy.
I try anyway. She sits on my knee and listens to a song that a friend had recommended to me. ‘Her Diamonds’ by Rob Thomas. It’s a sad song that he wrote for his wife who has an auto-immune disease. The web site had the words to follow along with. Tara liked the song and on the third listen, she had the chorus memorized. There were a few bars of the song that she recognized but couldn’t remember where she had heard it. But she knew it was on of your many favorite tunes and on your ipod.
She wanted us to do something together. I asked for some ideas. “Why not make cookies!” she said excitedly. She picked out a recipe and I helped her get out the ingredients. – She went to work measuring and mixing. I made breakfast for the three of us.
Quinn got up and asked if he could go on the computer after breakfast. I said it was OK – but only for 30 min. Tara’s enthusiasm was wearing down for the cookies. She had got them mixed but her arm was sore. I said I would put them on the cookies sheets for her while she cleaned up a bit. After 36 cookies, I left the remaining dough in the bowl and suggested that Tara and Quinn split it up between them. Tara agreed … but she didn’t share with Quinn and Quinn blew the whistle and I blew my top.
I explained that it is disrespectful to agree to do one thing and then do another. She was defiant. I told her she needed to go to her room – she wouldn’t. I started THE count … 1…2… she left for her room and slammed the door.
Normally, a time out goes very badly with Tara. She doesn’t reflect on what got her there, she just gets more angry. The only benefit of a time out for her, is that it gives me a minute to take a deep breath and think of a different plan … a plan that might work. I was not in the mood to work on a plan to get Tara back into the world of cooperation today. Normally, she would stay in her room for a very long time and give me the cold shoulder so that I would almost have to beg her to talk to me.
Today was different. About five minutes had pasted and I had just gotten off the phone with you. I had vented and said we got to do something about her attitude. I had just hung up the phone when she came out of her room, calm and quiet and had almost a sheepish look to her face. Her expression said ‘I’m sorry’. I can honestly say that this was a first. Although, I have never seen that expression before on her, I knew instantly that she was sorry and wanted to make up. I reached out and I hugged her. I held her for a while … for a long while. I told her that I had just seen something happen that made me think that she was growing up. ”I am proud of you Sweetie.” I said.
She sat on my knee and we talked. I told her about my feelings and how I feel them build up in me and I feel I want to explode every night. I told her that writing the journal was very helpful for me. It helped empty my head. It let me sleep at night. I told her how bad feelings that are trapped inside you can eat you up and make you sick.
Earlier this morning I explained what auto-immune disease was. We had always talked about the immune system in terms of the invisible soldiers and the bad guys (Virus etc) being the invisible enemy. Auto-immune disease is when the invisible soldiers get confused and start to fight your body instead of the bad guys.
Long term sadness causes stress that confuses the invisible soldiers as well. When this happens, you get sick and the sick feeling is real. It may not even feel like sadness, it feels like sickness. The only way to deal with this is to understand that this is what is happening and not let it control you. You have to find a way to get the bad feelings out.
“Rob Thomas had bad feelings about his sick wife and he wrote songs, I have bad feelings about Daddy and I write away my feelings. You have to find an outlet that works for you. Maybe you will want to use music too.” She became very thoughtful about this and said “Well, I do hear music a lot of the time in my head, maybe that is what is trying to get out?”
All of a sudden, I felt a different energy from Tara. I have felt it all day. She is different with me, different with Quinn and different with you. When we got to your room, You started to give Tara a pep talk lecture. “We are all in this together and we have to lookout for each other.” She listened carefully. I mentioned that I had a great talk with Tara and summarized it for you and Quinn. The first thing you said was “I’m proud of you.” She beamed.
Within 15 minutes, she climbed up into your bed nestled into you left side listening to songs on your ipod with you. She wanted to find the song that ‘Her Diamonds’ reminded her of. She described the sounds and the feelings with the sounds and in no time you found it … I think it is called ‘The Earth to the Moon’ a piece you had downloaded after hearing it on a National Geographic (I think) program.
As the two of you listen to the feather theme from Forrest Gump, I realize that you and Tara have a common language … Music.
While you and Tara cuddled, Quinn settled down to make wishing stars out of colourful paper - folded origami style. He had trouble with the first few, but quickly got proficient at it. He made 6 stars and 6 wishes.
When we left the house to go to the hospital, It was raining on one side of our house and sunny on the other side. We spotted a beautiful rainbow that arc over the hospital area as we saw it from the house. It faded in a few minutes only to reappear as we drove to the hospital, this time one end of the rainbow was at the pool where the 10 Km race started 90 days ago.
The coincidence wasn’t lost on the children. They insisted that I drive to the pool to find the end, but alas it vanished. Stolen away by the mysterious forces of nature. Tara wondered aloud if it was the work of leprechauns. Seventeen leprechauns in fact … because 17 is one of her favorite numbers and and St Patrick’s Day.
Megan and her special friend, Jason came to visit. Jason had written the newspaper article about you in the local paper. He is a sports fan and is interested in your talk with Rod Carew. The children and I leave you to visit with them.
After our visit with you, we take Annie for a hike through the woods. Quinn didn’t want to go initially but soon was leading the way. Annie loves our off leash walks. We spotted three deer on the walk. Annie froze and stared at the deer, the deer froze and stared at us. It was a stare-off. Realizing the deer would win this encounter. We walked slowly away and after a minute, the deer did too.
Tara and Quinn are happy walking along finding treasures and doing mystical math. “Mummy, I think I figured it out: I saw 5 rainbows and Quinn made 6 wishing stars at Daddy’s, 1 special day and 17 leprechauns. That adds up to 29. This IS a special day.
She is back to the Tara I knew before your stroke. She is trying to find magic again.
Last night, Janice worked at trying to move your wedding ring from your left hand. The fingers are swelling because your arm is not mobile. She finally got it off and put it on your other hand. This morning you found it on your right and wanted me to put it back. It wouldn’t fit. We left it on your right hand. Hopefully the next time it is moved, you can do it yourself.
Janice’s daughter, Erica is a budding artist. She painted a sign for you. It’s half black and half white. It says ‘Get Busy Living or Get Busy Dying’. This is a line from a movie that moved you before the stroke, Erica hopes it will cause you to move now. The black and white format is meaningful – there is no middle ground – you have committed to living but every little bit of encouragement is good.
Fran got in this afternoon and visited you then came over to spend a little time with the children, while I visit you. I wanted to talk to you privately. It’s a long over due talk. I share with you the challenges that I’ve had trying to juggle your needs with the children’s. I knew you would agree that the children must come first.
I don’t feel that I’ve put them first lately and the pull between your needs and their needs is getting to me. I cry, I mean really sob for the first time since the stroke night. I cry with my head on your chest. You are frustrated too. The time distortion is still very real to you and although you try to rationalize it – intuitively you still feel like I’m never by your side. This is a hard disconnect to reconcile. We agree to keep trying. It will be hard.
Today was a great day. I feel connected with Tara again and I feel a new and deeper understanding with you. Days like this make all the other days worth it.
It started this morning without promise. I tried to sleep in and couldn’t. My mind was alert and racing at 6:30. I got up and Tara was right on my heels. I was hoping for a little peace and quiet, but Tara is not someone I can be peaceful and quiet with. Her brain is always going and I find it hard to keep up to her level of energy.
I try anyway. She sits on my knee and listens to a song that a friend had recommended to me. ‘Her Diamonds’ by Rob Thomas. It’s a sad song that he wrote for his wife who has an auto-immune disease. The web site had the words to follow along with. Tara liked the song and on the third listen, she had the chorus memorized. There were a few bars of the song that she recognized but couldn’t remember where she had heard it. But she knew it was on of your many favorite tunes and on your ipod.
She wanted us to do something together. I asked for some ideas. “Why not make cookies!” she said excitedly. She picked out a recipe and I helped her get out the ingredients. – She went to work measuring and mixing. I made breakfast for the three of us.
Quinn got up and asked if he could go on the computer after breakfast. I said it was OK – but only for 30 min. Tara’s enthusiasm was wearing down for the cookies. She had got them mixed but her arm was sore. I said I would put them on the cookies sheets for her while she cleaned up a bit. After 36 cookies, I left the remaining dough in the bowl and suggested that Tara and Quinn split it up between them. Tara agreed … but she didn’t share with Quinn and Quinn blew the whistle and I blew my top.
I explained that it is disrespectful to agree to do one thing and then do another. She was defiant. I told her she needed to go to her room – she wouldn’t. I started THE count … 1…2… she left for her room and slammed the door.
Normally, a time out goes very badly with Tara. She doesn’t reflect on what got her there, she just gets more angry. The only benefit of a time out for her, is that it gives me a minute to take a deep breath and think of a different plan … a plan that might work. I was not in the mood to work on a plan to get Tara back into the world of cooperation today. Normally, she would stay in her room for a very long time and give me the cold shoulder so that I would almost have to beg her to talk to me.
Today was different. About five minutes had pasted and I had just gotten off the phone with you. I had vented and said we got to do something about her attitude. I had just hung up the phone when she came out of her room, calm and quiet and had almost a sheepish look to her face. Her expression said ‘I’m sorry’. I can honestly say that this was a first. Although, I have never seen that expression before on her, I knew instantly that she was sorry and wanted to make up. I reached out and I hugged her. I held her for a while … for a long while. I told her that I had just seen something happen that made me think that she was growing up. ”I am proud of you Sweetie.” I said.
She sat on my knee and we talked. I told her about my feelings and how I feel them build up in me and I feel I want to explode every night. I told her that writing the journal was very helpful for me. It helped empty my head. It let me sleep at night. I told her how bad feelings that are trapped inside you can eat you up and make you sick.
Earlier this morning I explained what auto-immune disease was. We had always talked about the immune system in terms of the invisible soldiers and the bad guys (Virus etc) being the invisible enemy. Auto-immune disease is when the invisible soldiers get confused and start to fight your body instead of the bad guys.
Long term sadness causes stress that confuses the invisible soldiers as well. When this happens, you get sick and the sick feeling is real. It may not even feel like sadness, it feels like sickness. The only way to deal with this is to understand that this is what is happening and not let it control you. You have to find a way to get the bad feelings out.
“Rob Thomas had bad feelings about his sick wife and he wrote songs, I have bad feelings about Daddy and I write away my feelings. You have to find an outlet that works for you. Maybe you will want to use music too.” She became very thoughtful about this and said “Well, I do hear music a lot of the time in my head, maybe that is what is trying to get out?”
All of a sudden, I felt a different energy from Tara. I have felt it all day. She is different with me, different with Quinn and different with you. When we got to your room, You started to give Tara a pep talk lecture. “We are all in this together and we have to lookout for each other.” She listened carefully. I mentioned that I had a great talk with Tara and summarized it for you and Quinn. The first thing you said was “I’m proud of you.” She beamed.
Within 15 minutes, she climbed up into your bed nestled into you left side listening to songs on your ipod with you. She wanted to find the song that ‘Her Diamonds’ reminded her of. She described the sounds and the feelings with the sounds and in no time you found it … I think it is called ‘The Earth to the Moon’ a piece you had downloaded after hearing it on a National Geographic (I think) program.
As the two of you listen to the feather theme from Forrest Gump, I realize that you and Tara have a common language … Music.
While you and Tara cuddled, Quinn settled down to make wishing stars out of colourful paper - folded origami style. He had trouble with the first few, but quickly got proficient at it. He made 6 stars and 6 wishes.
When we left the house to go to the hospital, It was raining on one side of our house and sunny on the other side. We spotted a beautiful rainbow that arc over the hospital area as we saw it from the house. It faded in a few minutes only to reappear as we drove to the hospital, this time one end of the rainbow was at the pool where the 10 Km race started 90 days ago.
The coincidence wasn’t lost on the children. They insisted that I drive to the pool to find the end, but alas it vanished. Stolen away by the mysterious forces of nature. Tara wondered aloud if it was the work of leprechauns. Seventeen leprechauns in fact … because 17 is one of her favorite numbers and and St Patrick’s Day.
Megan and her special friend, Jason came to visit. Jason had written the newspaper article about you in the local paper. He is a sports fan and is interested in your talk with Rod Carew. The children and I leave you to visit with them.
After our visit with you, we take Annie for a hike through the woods. Quinn didn’t want to go initially but soon was leading the way. Annie loves our off leash walks. We spotted three deer on the walk. Annie froze and stared at the deer, the deer froze and stared at us. It was a stare-off. Realizing the deer would win this encounter. We walked slowly away and after a minute, the deer did too.
Tara and Quinn are happy walking along finding treasures and doing mystical math. “Mummy, I think I figured it out: I saw 5 rainbows and Quinn made 6 wishing stars at Daddy’s, 1 special day and 17 leprechauns. That adds up to 29. This IS a special day.
She is back to the Tara I knew before your stroke. She is trying to find magic again.
Last night, Janice worked at trying to move your wedding ring from your left hand. The fingers are swelling because your arm is not mobile. She finally got it off and put it on your other hand. This morning you found it on your right and wanted me to put it back. It wouldn’t fit. We left it on your right hand. Hopefully the next time it is moved, you can do it yourself.
Janice’s daughter, Erica is a budding artist. She painted a sign for you. It’s half black and half white. It says ‘Get Busy Living or Get Busy Dying’. This is a line from a movie that moved you before the stroke, Erica hopes it will cause you to move now. The black and white format is meaningful – there is no middle ground – you have committed to living but every little bit of encouragement is good.
Fran got in this afternoon and visited you then came over to spend a little time with the children, while I visit you. I wanted to talk to you privately. It’s a long over due talk. I share with you the challenges that I’ve had trying to juggle your needs with the children’s. I knew you would agree that the children must come first.
I don’t feel that I’ve put them first lately and the pull between your needs and their needs is getting to me. I cry, I mean really sob for the first time since the stroke night. I cry with my head on your chest. You are frustrated too. The time distortion is still very real to you and although you try to rationalize it – intuitively you still feel like I’m never by your side. This is a hard disconnect to reconcile. We agree to keep trying. It will be hard.
Today was a great day. I feel connected with Tara again and I feel a new and deeper understanding with you. Days like this make all the other days worth it.
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