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.

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.

Saturday, November 28, 2009

Friday November 27 - Without The Dark, There Can Be No Light

Quinn wants a video game from Santa, “A video game like Nintendo DS only bigger and better!” Then he says contritely, “I know he can’t give me both so I’ll write video OR ipod.” Then he adds “Maybe I’ll just say that it doesn’t have to be both, that way he doesn’t have to give both but it could be both if Santa wants to give both.” Fairly strategic thinking. At the age of seven, he has discovered the art of making a loophole.
I sense a future in the politics.

Today was dentist day. It is long over due. We had an appointment when you were still quite ill, so I cancelled it and rebooked it for today. Good news is that we all belong to the cavity free club. Bad news – I have to floss more and Quinn might need some dental work. He has an extra baby tooth and an extra adult tooth, and they are all competing with each other of the same space. The result is a mal-occlusion. Quinn is not thrilled about a bite plate or appliance in his mouth. You are confident that Quinn will be all right. “He’s a good kid …a tough kid … a nice kid. He’ll be all right.”

Janice stops by the animal hospital on the way to the Dairy Queen to get a special order for you: a soft ice-cream sundae with Skor pieces and chocolate syrup. She asks about rehab and when is rehab going to happen. She had been with you this afternoon and witnessed the physio session. She was pleased with what she saw. “So, What’s the deal on rehab?”

This week, the rehab (NS Rehabilitation Center) informed us that a tele-medicine call will be made to discuss your case and assess you level of recovery. They will use the assessments that have been done so far and will likely re-evaluate you as well. If you get to the NSRC before Christmas we would be lucky. If you don’t get to the NSRC before Christmas, we are still lucky because we might be able to get a day or holiday pass for you and we all can spend the holidays in our home.

I hope you get home for Christmas – we all need a little ‘normal’ in our lives. If I can reframe from giving Tara away before then, your presence in the house may help her see that her Dad is back. Tara and I locked have locked horns several times today. At the dentist, after ukulele lessons, at the hospital. Whenever we are do something that involves you in some small way, Tara seems to have a physiologic reaction as well as an emotional one. I need to figure her out and what I can do for her. She needs both of us.

Megan visited you. You had met Megan back in September, shortly after you were moved out of the step down ward and into a regular room. You weren’t really awake then. You are now and when I came into the room tonight, you said “This is my new best friend, Megan.” Megan had visited you for quite a while and shared many stories with you.

I tested the new best friend claim. “If you could have dinner with Megan or Rod Carew, who would you choose?” “Megan” you said with no hesitation. Megan has to leave but you make her promise to come again … maybe tomorrow to watch the Notre Dame game on TV. She said she might and she may bring a special friend.

Janice plans to spend the night with you tonight – I tell you that you can sleep only with women whose husbands are either faster or stronger then you. Thankfully, both Martha and Janice qualify … I don’t know about Megan.

Janice gave us a few gifts. Yours is a special chain of hearts of beautiful sparkly hearts. It’s meant to go over a threshold. I hang it over the wall of cards that are opposite your bed. You are trapped in your room and the only exit is through your mind. In a way these cards is the threshold for you to your friends and family ... to the rest of your world.

Janice gave me a heart as well. A glass swirly black and white heart. The enclosed note was beautiful – I cried. She signs off “Try to remember without the dark, there can be no light.”

Friday, November 27, 2009

Thursday November 26- Spatial Perception

Quinn is difficult to wake up this morning. His eyes are still closed. I try to rouse him. I ask him what he wants for breakfast. “Four more days.” He says, “What do you mean, four more days? – You can’t have four days” I say teasingly, “You have to get to school!” He opens one eye and smiles and sings “Four more days until December!”

He is a counter. He has been for a long time. Always counting down the days until birthdays, visits for family or friends, holidays and other special days. He resets his mental clock every morning by calculating the days to … something of interest to him. He finds comfort in having a good grasp of time.

When I greet you for the day, you are in a quiet and pensive mood. I ask if you feel all right. “Do you have a headache.” “Is there pain.” “Is there anything I can do?” I grill you to the point of annoyance, trying to dig deeper as to way you are in a quiet mood. Eventually, maybe just to shut me up, you say, “I just want to take the day off.” Day off? I think to myself. What do you mean a day off – I am a little jealous that you can think about having a day off and I can’t. I ask you to explain. “I’m just tired, tired of being up, I just want a day off.” I ask if you would like me to call people who might visit today, and tell them know to let you be. You say no. I asked if you still wanted to visit another friend in the hospital, who is quite ill, like we had planned. You did.

I start to think about your reduced sense of self-sufficiency and the dignity that goes along with your brain injury. You have been so dependent on others for all your care over the last three months that I (and you) have come to accept this as still needed. But it’s not. How are you ever going to be able to do things for yourself, if I, or others, always interfere and do things for you? I make a silent deal with myself that I will assist you but not do things for you. Up to this point I think I have been enabling your dependency. It’s hard to step back and watch you struggle but it’s the necessary part of recovery. I need to back off.

I wondered if I tire you out. I know that I am a little pushy with you – encouraging you to take risks and push yourself a bit. But I have only done this with the blessing of the physio team. Maybe you see me as the bad guy. I ruminated on this for a few hours in the morning, then the answer came to me. At least, I think it is the answer. Today is the American Thanksgiving. Today is a football fan’s dream ‘day off’ I checked the TV guide – yes there are three games, back to back starting in the early afternoon. I hope I’m right, I guess we will see how you are tomorrow.

I hate to admit it, but I think the TV has been somewhat therapeutic for you. When you first came to Truro, you were very confused about the TV and would just give up watching it in disgust. Now you can turn it on, change channels and volume. You are channel surfing again. I had forgotten how much that activity drove me nuts. Still, I have to give the TV some credit but I think the real benefit was due to the fact that it is situated to your left. The TV has drawn your attention to your left. This was not the case in the QE2 where the TV was on your right in that room.

Another … of many benefits of moving to Truro.

Physio session went well. You did a big long sit by the edge of the bed, playing ball again. After this they get you in your wheel chair. You are puzzled about your wedding ring. “Why is my ring on this guy’s hand? I want to put it on my ring finger of MY left hand.”

You did so well catching the ball, even to and from the left side, but moments later you are confused about your own hand. It is really hard to understand how you are thinking.
The absence of left knowledge extends to many aspects of how you relate to the world, not just your body.

After the ball game, you are asked to remove your shirt by yourself. With a few false starts, you did it! I felt such a huge sense of accomplishment for you by just watching you do this. I felt the same way when I saw you pivot from your bed to a sitting position (with lots of help) almost two months ago.

The Barthal index is designed and used by the rehab (NSRC) for assessing patients. It’s important to time the intense therapy with the recovery. The Barthel index is an objective way to do this. There are two sections. The self care index measures nine main aspects of self care that range from eating and drinking to dressing and bathroom duties.

The mobility index assess much higher mobility functions that range from getting in and out of a chair to walking and climbing stairs or failing that – mastering some form of self propelling using a wheel chair. The score that is calculated is out of 100. You need 30/100 or better to get to NSRC. You are making major head way in some of these areas but not in others.

A spatial perception test was also done. It reveals some deficits both visually and perceptively. There are lots of things that can be done with this information. As I understand it, working on these areas will also enable you to extrapolate some things into attending to your left with mobility too. OT made suggestions that would enhance the skills in these areas; make designs to copy, drawing and copying pictures, checkers, word searches and other games and my personal favorite - the ‘wonky’ guy game. I think these would be great things for us to do with the children. They can serve two objectives – help you recover and help the kids be involved with your recovery. Not to mention … it could be rather fun!

I am very excited about the possibilities for these games.

Although the two assessments are done separately for different things, they both relate to the same body. Improving one skill will enhance to the others. I expect there may be a bit of a domino effect.

The physio team takes a lot of ribbing from you. Over the last few weeks you are gradually putting your verbal filters back together. But you still let them down from time to time. Some ribbing and teasing occurred part way through the physio session. You were asked to remove your shirt, which lead to some teasing and after a minute or so, you said “So you want me to take off this shirt?” Despite the conversational diversion, (that you created) you took the conversion back, to stay on task. Bravo!

I had a meeting with Dr. Feltmate and the social worker and floor nurse who schedules the staff for the floor (along with many other tasks I suspect). We discussed your care and what could be done differently that could help both you and the staff. I felt the meeting was productive and certainly allowed me to verbalize my stressors. Among many things, they were concerned that the journal was consuming me. I had to think about that – but I rejected the notion. If anything this medium is my release. The pressure valve.

By the end of the day, my head is swimming with feelings and memories and ideas that just knock about, trying to find a way out. By the time, I can sit down and process the thoughts, I feel ready to explode. Spitting them out onto the keyboard allows me to organize them and find some meaning.

If I don’t do this, I think I might explode. If I miss even one night of writing, I feel very stressed. After I vent my thoughts into words, my mind is empty and I can rest. It is as powerful as any drug and a much more insightful action.

After some reflection since the meeting, I realized that the journal is more then a piece of communication. My initial intent was to inspire you to do your best. But I can see that other benefits have come from it. I may be treating it as an obsession, but I feel I have to. My left brain’s best friend, science, has not been able to explain why this has happened to you – it explains how … but not why. In the face of a vacuum on the left side of my brain, my right side has taken over. If science can’t explain why, perhaps something else can – perhaps there is a spiritual reason that is filled with feeling.

After the family meeting, I leave you to your football games and go to retrieve the children. They didn’t want to leave their friends, so I thought I would take this opportunity to see Dad. This is the first time – in a long time that I am not by your side, or at work or with the children and today, I don’t have to get groceries or do other errands. I actually have about an hour of free time. I want to make the most of it… I go visit Dad.

For the last three months I have been rehearsing pep talks in my head to give to you when you need them. Pep talks to make you a survivor. Pep talks to enable me to survive. Pep talks for the children. My brain is stuck on pep talks. When Dad said to me “I have cancer.” I was speechless. “I know Dad” was all I could say. I didn’t have anything uplifting to say except “don’t try to tough out the pain Dad, ask for help.”

Denial is a powerful thing that can be an asset. For us, it has been an asset. Tara and Quinn proved that the first day. But denial can also hold you back. Dad’s pain is forcing him to not deny it anymore. How do you help someone abandon denial and reach for acceptance? Is this a pep talk that I will have to rehearse for Dad? For you?

Your visitors for the day: Marsha, Keith, Kevin, Carmen, Juanita, Wayne, Maddie and Farley, and later tonight Janice (PEI) will stop in for a short visit. That’s a pretty full day for a ‘day off.’

At piano lessons, as Quinn and I go through homework, I find a sheet that Quinn’s teacher handed out. It was about … spatial sense. It was presented in the guise of geometry but it was exactly what the OT was talking about with you. I am very excited now about the possibilities.
On the flip side of this sheet was ‘4 Secrets for Building Strong Ideas”. This had to be a sign. There is no other way to explain it - there are too many coincidences. The four secrets are:
1. Talk, talk, talk…
2. Make the ideas visual. Seeing ideas in your mind is very powerful.
3. Construct rules. Rules come from patterns.
4. Keep it simple! Keep it fun!
These principles are the principles that I use to journal and sort my feelings. I feel validated in my resolve to continue the journal. There are messages to be uncovered. And they reveal themselves through out this journey.

Tara pointed out as we ate dinner, ”It’s 29 days Mum, it’s 29 days until Christmas!”
I guess we have more then one counter in the family.

Thursday, November 26, 2009

Wednesday November 25 – What is Quality time?

I awoke at 3 am and suddenly remembered that I had told you that I would bring the children to see you before bedtime. The time after dinner slipped away from me, Quinn had homework to do and Tara was cranky and practiced the piano. We all folded laundry and the next thing I knew – it was bedtime – no time of a bath or shower – they needed to get right to bed. Both of them have been hard to get up lately.

I was filled with guilt at 3 am and wanted to call you, right then, to make sure you were all right and not wondering why we never showed. I managed to hold off until 7:30. I figured that the shift change would have been in to see you and you would be awake. The phone rang … a lot. Great, I thought. If you were asleep, you won’t be now and worse you couldn’t even answer the phone because it was likely out of reach. I called the nurses’ station and got them to check the phone then called right back. You answered groggily. You were asleep. I talk to you and Quinn plays the ‘I love you more’ game. I ask Tara if she wants to say good morning. She’s quiet and shakes her head.

I think that you are Tara’s fallen hero.

Tara is slow to get ready for school. When I get back from walking Quinn to school, she is still getting ready. She got another late slip. We have more late slips in these past 3 months then Tara and Quinn have had collectively over both of their school careers.

I can’t catch a break. There seems like I have to have worries. If the worries aren’t about you then I worry about one of the children. I never used to be a worrier … not to this magnitude … I am now. I’m so torn between you and the children …I want to scream.

I make a quick visit to you on the way to work. Marsha is there, making you laugh. I apologize to you about standing you up last night and then waking you up this morning. I think you have forgiven me. Marsha probably got the brunt of your frustration and had you calmed down by the time I got there.

While at work, I got a call from Jane. The social worker. She called to set up a little meeting for tomorrow. Hopefully, we will sort out some of my concerns and a few of hers.

Kristin called later in the day. I had called earlier in the morning to find out what she might know about rehab and when it will happen. She had some information and went over it with me briefly. The rehab uses a scoring system or index out of 100 to assess patients.

Ironically, it seems that there has to be a certain amount to self-sufficiency before you are eligible for rehab. It almost seems like a catch 22 – you have to get better before you can get help. I know I have to take this on blind faith. But it is hard sitting by your side waiting for the ‘real’ recovery to happen. I hope to understand it better tomorrow.

Kristin ends the call on a good note by saying that she had the best session with you today. You sat at the edge of the bed for almost 25 minutes. At the end of 25 minutes, rather then just collapse and flop to your side, you verbally conveyed that you were tired but you still maintained control until you were put back in bed. While you were sitting, you threw a ball back and forth with Jacinda. You tracked her with your eyes, even when she moved to your left.

That’s good news. I feel a lot better about things. Kristin ventured, at my insistence that you may be in Colchester hospital until after Christmas. We might even be able to get a pass so that we can have you at home during some of the holidays. I promised I wouldn’t hold her to this. I have come to realize that the future is always unclear.
Tara and I have arranged to do some Christmas things together in the afternoon. She is looking forward to it. We spend an hour after work and school, revamping a advent calendar that she made a few years ago. She seemed happy. I feel like I ripped her off. This isn’t how we did fun stuff before. Carefully scheduled fun stuff – doesn’t seem all that fun.

After a failed trip to the Flu vaccine clinic (they were already booked for the night), we decide to visit you for an hour before bedtime. You and Quinn bond over a fierce game of War with cards. Meanwhile, Tara sits off in the corner and does her homework. She does pick up her choir book and asked me to close the door so she can sing to you. She sings an Irish song, ‘Christmas in Killlarney’, thinking that you would like it. You are too busy playing with Quinn to really comment.

I don’t blame you for this. I think it is hard for you to multi task and relate to both children at the same time. It’s probably a little over stimulating. They don’t understand this. When we leave, Tara leaves without even kissing you good bye. Quinn give you a big hug and kiss and threatens you with more card game domination. As I leave, I suggest that we try to find some time where you can spend a little one on one time with Tara.

Tonight after bedtime, Tara gets out of bed and says, “I’ve been trying to sleep for 20 minutes and I can’t sleep but I’m so tired. I think I need some medicine to help me sleep.” Now I am really worried about Tara. I talked about my concerns and showed her the Santa letter to Marianne. She made some good suggestions, which I will follow up on tomorrow.

Tuesday November 24 – The Neuroplasticity Window

One the way to school, Quinn says he “want the magic potion.” He means the H1N1 vaccine. I have to look into this and see how we are going to fit this into the routine.
You are starting to get to know all the staff in the hospital. You greeted Lily, maintenance lady, like you are best friends. She has captured your heart because she retires next March, after 29 years on the job.

You ask Anne, an LPN, whether she is married or not. “No, I’m still not.” She replies “You ask me that every day that I see you.” “Well, I just want to know if I can relax or not.” “What do you mean – relax?” I ask. “I just want to know if I have to find you a guy.”

You have been taking everyone’s love life very seriously. You offer advice freely. “Love each other”, “Don’t put things off”, “Life’s too short” and “Be happy with yourself.”

Will your next career be matchmaker and marriage counselor?

It’s nice to see you bond with the health care team at the hospital – I’ll be sorry to see that chapter close. But you make friends wherever you go and I think there will be special friends ahead in rehab.

You are still glowing in the light of Rod Carew’s phone call. He certainly hit a home run with you. If there is any future calls – they will probably a grand slam. You are in awe of the conversation – which you have almost committed to memory. I am in awe to the timing. Had Rod called two months ago – you would have had very little voice and you would not have had any memory. If it was a month ago – you would have been only been able to whisper and it might have been one of the first memories you retained.

You idly wonder about Rod’s age, so I got out the book that Dave gave you on Rod’s early career. You want to read it. I hold the book, but you have a lot of difficulty following to lines. When your eyes move to a new line they don’t scan all the way to the left to get the beginning of the line. You start then line in the middle.

I hold a coloured paper above the line to help you track the lines and tap my finger to the left of the page as you switch from line to line. You read about half a page and you were exhausted ... and frustrated.

While you rest, I read the book to you. We make an interesting discovery about a connection that you and Rod have. The MLB organization has a rule about recruiting young players. A player can not be signed up before midnight of the day of his high school graduation. Rod graduated June 24,1964. You were born 25 June, 1964. You were born on the day Rod officially started his professional career. It sounds like an obscure connection that one would find in a W. P. Kinsella book.

We spend the rest of the morning discussing the Christmas present planning. It is an annual event that most parents must do. You must decide what is reasonable and what would WOW your offspring, and yet you still want to teach that giving is the important part of Christmas, not receiving.

You are feeling very generous towards the children. You are thinking an ipod and nintendo DS. I am a little shy of giving gadgets. Especially electronic gadgets. I think there will be plenty of time for those things in their lives and I would prefer that they make acquiring those things their own personal project. If they have to save the money and budget the money to spend the money then they will be more likely to look after the gadget and not loose or break it.

You wear me down with your ‘I want to be generous’ logic. “They are great kids.” You say. I agree and suggest that if we do this then there should be a stipulation from Santa or whoever is giving the gifts, will be that they must share the two different machines. They will be family gadgets. This builds cooperation and sharing. You seem OK with this idea. This will help with the machines being over used.

I point out that generous gifts do not compensate for you being lost to us for a few months. You can’t compensate for that. Being with them and giving them encouraging support like you did last week, that is what they need … and want.

“Yeah but I mean, I’m a parent for the rest of their lives. One pep talk doesn’t make me a parent – it’s an ongoing thing.”

Sarah, a friend from London ON, called. She is Martha’s sister. You relive the phone call from Rod again. You mention that if you can befriend Rod, then you “will have to unload a lot of friends that I have now to make room for Rod.”

Stan and Julie came to visit and Stan shared experiences that he had when he had a brain injury. I think that talking to survivors really helps you to envision what the future might look like. It certainty helps me.

I tried to talk to you Monday while the children are in gymnastics to see what you think about Tara’s demeanor with you and her health concerns. You were tired and weren’t very receptive. I decide to try again today. When Jane, the social worker, came to visit you – I had an opening. I ask her what her read of Tara’s various ailments was. She felt that Tara was feeling ignored. I need to spend time with her.

You seem to understand that I have to somehow find time to do this. You mention that you are not as needy now at night as you were. You are right. Nights are much better, but the children don’t benefit from this much because they are asleep. We try to develop a plan to create time for one on one with both Tara and Quinn.

We start to work on the Christmas letter. You made several attempts and tackled different ideas.

We laid down for a nap, but you don’t sleep. We talk about the future. About our dream life in a little house on the Bras D’Or lakes. Walking on the beach in Cape Breton – just you and me. I mentioned that we would want an area where Tara and Quinn and their families could camp out. We talked about renewing our vows. I said I won’t be so nervous, you said that you would be more nervous then the first time around. “Why” I ask. “Because I know more about what the commitment means now.”

Val, from the animal hospital, visited. She lifts your spirits and is able to banter with you easily. She brought a game of Yahtzee. This was one of the game ideas I had for a Christmas present. She also brought a blanket for when ‘all your women sleep over’. Val’s Dad had a major stroke about four years ago. He still has some significant mobility issues as a legacy. She shared some of the struggles her family has had. “It’s good now.” she says. I want to believe her.

We waited all day for physio – no show – I’m frustrated. I don’t know where we are on the map for rehab. I just want a road map for rehab. And I was hoping that I would have answers today. Tara has been anxious about this too. She wanted me to report to her as soon as I had talked to the physio and OT team.

After talking to stroke victims and their families, I have come to the conclusion that the right therapy at the right time is important. I worried, before, that depression would ambush your recovery. I don’t think that is the case at this time … but that can change.

I can see that the right attitude to the therapy is important. You have to want to work hard at it even when you are frustrated. One survivor said that reading was such a challenge during the recovery that he gave it up. He can read, but only for a short time. His favorite reading, now, is to his grandchildren. He wondered that if he pushed himself more at the time, he would have gained some of the neuroplasticity back for reading.

Without fully understanding how the brain heals, I can not be too critical of your current treatments. But I do understand that for neurons to make new connections and create neuroplasticity, the timing of appropriate therapy is essential. I don’t want your therapy to be poorly timed.

I think the healing and reconstruction phases as windows of opportunity. These windows have a shelf life. And significant changes after the window for neuroplasticity closes won’t happen. I don’t want to lose a minute of opportunity.

Before bed, Tara was secretly working on a letter … a letter to Santa. Once she is asleep I check it out. It’s an impassioned plea to Santa to have you walking and home for Christmas. She signs off and adds a PS: Please Help Me! (in large letters).

I remind myself about her powerful belief in the Magic Blanket almost 13 weeks ago. Maybe she has a special power to wish and get miracles.

Tuesday, November 24, 2009

Monday November 23 – Thirty-two Days to Christmas – How Many to Rehab?

It is really difficult to get Tara up this morning – she is tired. Her head hurts, her tummy is upset and she is cold. Her temperature was normal. I tired not to rush her and suggest that she could sleep in for another half-hour and be just a little late for school. She agrees.

She fell asleep in the car on the way home last night. She is tired now. Quinn, my usual sleepy-head, is up and ready to go.

I start thinking of a plan B, if she is really sick. I pack up the air mattress and sleeping bag and put them in the car. I figure that if she really feels unwell, then I will want to keep an eye on her, so I would pack her up and take her to work with me and she could rest the day away in my office. She is not thrilled with this idea. After 20 minutes, she forces herself to get up and starts to feel better.

During breakfast, she shows me her ‘Chicken Soup’ book. It’s half read. She says “I want to show the best story that I read so far in this book.”

The story is called ‘An Angel in Disguise’. It’s written by a fifteen year old girl, Megan, whose Mother was befriended by a gentleman. Megan is suspicious of the gentleman intentions, since her own father had left the family when she was young. The man, Daemon, tried very hard to win her over and finally after many months, they became friends. She went on to describe some of the good times they spent together. Which included raising a calf together and buying a horse.

Then one day, Daemon, collapsed from a brain aneurysm. He survived but with significant disabilities. He died seven months later after a lot of suffering. Megan regretted not telling Daemon that she loved him and wished she had the chance to do it before he died.

She closes her short story with the advice to live every day to the fullest because you don’t know what life might bring.

This certainly sheds a little light on Tara’s mindset lately.

I decide that I will talk to you about Tara’s health concerns and figure out a way to spend a little quality one on one time with both Tara and Quinn on a regular basis. I think the novelty of going to friend’s houses after school, is starting to wear thin. On Sunday, you asked them what they did at home and they replied, with a hint of irritation in their voice, that they were hardly ever home.

Rod Carew has your cell phone number, and the only reason he has your number is because I lost my cell phone and I’ve been using yours instead. I guess this is proof that things always happen for a good reason. I have always been very bad at leaving my cell phone turned off when I’m not on call and as a result I miss calls. I was quite annoyed at myself for losing my phone … until now. Now, I can see the silver lining. Your hero has your phone number. I’m glad he has your number because you are very good with keeping your phone on and charged.

You are flirting with the nurses. Laura, your day nurse for the last few days, has bantered back and forth with you. You want to know her favorite movie and try to persuade her to scratch you back. She takes it all in stride. I don’t mind … because I still get to take you home when this is all done … and I get to do your laundry. I still feel special.

When I pick up the children they are starting to count down the days to Christmas. Aurgh-h-h – I never liked the Christmas count down. The count down starts far too early. On the drive home Quinn is calculating the days to Christmas. “There are seven days in November and 25 days in December until Christmas that means there are 32 days left!” He says excitedly.

The children are counting the days to Christmas and you and I are counting the days to rehab.

I find the days are going by far too fast and yet, at times, it seems like we’ll never get to rehab. Tomorrow, I hope to talk to Ainsley and Kristin. Ainsley is going to discuss the spatial perception tests that she did and Kristin will, hopefully, have some information on the path to rehab.

No matter how fast you progress, I doubt you will be able to come home for Christmas.

I share with the children these thoughts and that I wished that Christmas wouldn’t come so soon. If we could delay Christmas, maybe you would be home for it. Quinn is concerned that you won’t get to rehab. Both the children are worried about what would happen if rehab is a no go. I assure them that you will get to rehab and I will find out about rehab this week. Tara makes me promise to tell them as soon as I know anything about rehab.

Once we know about rehab, then we will know more about how our Christmas family time will look like.

Tara’s feet are sore tonight. She feels she can hardly walk. She moves about on the floor on her knees. I suggest that if she eats dinner, I would get a footbath set up for her. She doesn’t seem any better after the soak. She goes to sleep with sore feet.

Is there no end to the symptoms that she displays?

After dinner, instead of bedtime stories, Quinn wants to work on his letter to Santa Claus. “I think, the only thing I want is an ipod.” He says. Gosh, I wish you were here to help head off this decision. “An ipod eh” I say cautiously, ”I don’t know about an ipod. It seems to me there is a Santa age regulation rule for ipods. I believe it states that you have to be older then 13 for an ipod, like your cousin, Neeson.” Quinn’s face fell. He wants to play games on it.

To date, we have managed to avoid the video game pastime. I think they are a little too seductive to a young mind. There are so many more interesting and healthier things to do. Still, it’s hard seeing Quinn’s only request smashed down like that. I suggest we wait on mailing the letter and think about other ideas. And I promised that I’d talk to you, since you have worked with Santa the last few years. I suggest that you might have some pull with the little guy and he may inspire other ideas.

Monday, November 23, 2009

Sunday November 22 - Contagious Hypochondriac Children

It has been 12 weeks today since our lives have been turned upside down and inside out. It seems like a flash and forever at the same time.

We all slept in this morning. It was a late night last night. I played the recording I made of your phone call with Rod Carew for the children. Tara and Quinn listened intently, trying to understand why this man's voice is so important to you. Maybe one day they will understand why role models seem so important ... you will teach them. You are and will always be one of the most important role models they will ever have.

You had a lot of visitors this morning. The entire senior Sunday school class came in to see you. Chris G came in and had a ‘meeting’ about the Cabot Trail Relay team for next year. We get to the hospital just about noon.

You wonder where I’ve been. “Are you having an affair?” “Really, where would I squeeze that in?” I sarcastically ask and then I add “I mean – Squeeze into my day.” I still can’t tell when you are teasing or serious. But you do seem upset that we didn’t get there until noon.

I have noticed a trend with you and the nurses. You have asked all the nurses, except Andrew, if they were married. I feel a brief hint of jealousy then I realize that you really like your nurses and you want them to be as happy as you are with a marriage – at least that’s what I think!

Christina, your night nurse from last night, tells you that she is in a relationship for 4 months. She asks us what’s the secret to a lasting marriage – Wow she is asking us? I don’t think we qualify to comment on a lasting marriage. As I see it, marriages are like marathons – and we haven’t even done a half marriage yet let alone a full one. – I tell her that we’ll let her know when we find it.

Maybe the answer is really in a riddle … You will find the secret to a lasting marriage when you stop looking for the secret. I certainly want to find out.

Quinn wants to know more about Rod Carew. “Does he know that my middle name is Carew?” “That would put too much pressure on you to be good and you don’t even play baseball.” You said. Then you quickly add that the best things about Rod are that he played the game right, he played it smartly, he is a good person and loving father. Quinn feels that these are all things that he can do.

Quinn and I go off to get a special lunch at the A&W across the street. Tara reluctantly stays behind to have a special Daddy-daughter moment. I mentioned to her in the car, on the way to the hospital, that I thought it would be nice is she could keep you company while I got the food. She was worried “What if something happens - like someone breaks into the room and tries to kill us!” She is often melodramatic.

When we got back with the food. Tara is reading the family question game that we played last week, with you. She still seems nervous of cuddling with you.

After lunch, we called your parents. You made them guess who called you last night … your Dad guessed it right. You asked if there is any chance that they might be able to come for Christmas.

After the phone call I have to beg you to get you into your chair. I try to give you lots of incentives to get into the chair – but you find them veneer. You know my agenda. I talk with Laura, your nurse and ask her, who should I talk to about getting it written in your file that you should eat while in your chair. That would ensure that you are in your chair for at least 20-30 minutes three times a day. That would be better, and a little easier on you, then convincing you to get into the chair and stay there for more then an hour once a day.

In the afternoon, you complain of a headache. “Is my head swelling?” You are concerned. It is probably just an innocent little headache, however, for the rest of your life there will be no such thing as an innocent headache until proven that it’s not hypertension or the result of increasing intra-cranial pressure. We are all going to live in fear of a repeat incident.

I get Laura to check your blood pressure. It’s fine. It’s just an innocent headache.

I finally convince Tara to climb into bed with you so I can get a picture of the three of you. It took a few tries, but I got a good shot eventually. Now that Tara is in bed with you, she doesn’t want to leave.

When we leave the hospital, Tara seems suddenly overwhelmed with fatigue. I wonder if it’s a physical illness or psychosomatic. Tara says she feels weak and useless “like how Daddy feels”. She feels the “problem is in my heart or her brain … like Daddy” She says. “I feel really tired, my hands are going numb my headaches and I feel short of breath.

I try to wrap my head around this information.

She wants to go to outpatients and wait for a doctor to check her over. Quinn thinks it’s a good idea and thinks he should see a doctor too. When I explained to them that it could take a very long time waiting along side the flu patients, Tara decided that it would be smarter to sleep on the problem and see how she is in the morning. I suggest that we not go to Juanita’s. But she had no fever. I called Juanita, who says, “Why don’t you bring her over and let her rest on the sofa.”

“Are you going to stay at Juanita’s too?” Quinn asks. “Yeah” Quinn sings out. “I can teach you how to play Yatzee.” Tara groans and wants the window open. “I think I’m going to be sick.”

I figure that I might as well ask them out right if they feel there is a connection between their wellness and your health. “Are you a little nervous that something will happen to you like what has happened to Daddy?” No, they both deny any relationship.

When we get to Juanita’s home, I goggle ‘hypochondriac children’. Of course, a quick search suggests that it is an attention getting strategy. Well, that’s not a surprise! The recommended approach is to show compassion and concern but don’t encourage and when the child seems normal – shower her with attention.

Well, that sounds easy – now how do I fit that into the daily routine.

I make a mental note to talk to you Monday while the children are in gymnastics to see what you think about Tara’s demeanor with you and her health concerns.

Tara laid down and read her book at Juanita’s home. Quinn Juanita, Maddie and I went outside to play in the leaves and drive Maddie’s little car. Quinn and Maddie are having a good time and Tara soon appears with her coat on to play.

After dinner, I notice the section that Tara has been reading from in ‘Chicken Soup for the Preteen Soul’. ‘Death and Dying’. That might explain a lot about her mysterious ailments.

Sunday, November 22, 2009

Saturday November 21 - The Reader, the Writer and Rod

Tara is happy this morning, because I didn’t sleep over at the hospital like I said I would when she went to bed last night. She greets me like she hasn’t seen me in a week.
I had told Tara that we would do something special today. She was to think of something we could do in Truro.

This morning she announces, “Mummy, I want to go to the library. I want to get some good books to read.” I point out that she is in the middle of a thick ‘Chicken Soup for the Preteen Soul’ plus we have a house full of books that she hasn’t read yet. But she persists. I smile, at the thought of our preteen daughter wanting to go to the library for kicks. I wonder what she’ll want to do for fun when she is a teenager.

This morning, I let Tara read what I wrote last weekend. Specifically about our little night-time chat. I told her that I thought that I had made a mistake and wrote about her personal things. I wanted to know how she’d feel. Joye, a clear thinking mind at work, brought this indiscretion to my attention. Joye was right on. Tara was not impressed. We went back and edited the day. Ikicked myself about not thinking about her -–I'’e been so focused on you I didn’t even think.

Another warning sign. I have to step back. It’s almost an obsession that I have about trying to keep you in the loop. Thanks Joye – Tara is happy now.

Yesterday, you tell me that you weighed 157 lbs. The dietician has dropped your night feeding through the PEG tube by 1/12th . You are eating much better then a week ago. I can’t see that you will need the night feeds for much longer. The dietician has limited your coffee and Coke intake to one of each once a day. She thinks that this will help the constipation.

Last night you had a craving for a chocolate bar. A Cookies and cream chocolate bar. I went to the gift shop out to track one down for you. There are none in the gift shop but there are other bars. I got your two other favorites: Reese’s peicec’s and Skor. You seem very happy with the choice.

We don’t travel light on our weekend visits. Today we have the keyboard and ukulele along with Quinn’s school bag full of french books to read and picnic lunch.

You are still a little down about “being a failure at standing”. You try to boost your spirits by talking about how lucky you are to have such great children. Normally, I would have absent-mindedly agreed about the great children part. But today, for some reason, I felt you needed to hear that there was an important reason that we have great kids and it has nothing to do with luck.

“When you work hard at something that you are passionate about and do it well, you wouldn’t think of yourself as lucky. No, you would think that you deserved success. The work may not even seem all that hard because you do it with love in your heart. The raising of children is no exception. You have worked hard at this job and you have done well. Don’t feel lucky feel proud.”

Quinn climbs into bed with you and you have a little chat with him while Tara plays the keyboard for you. “Quinn, you are growing up super fast right now, and I think it’s because of what happened to me. I think it’s good for you and you are a great kid. I’m proud of everything you are doing. School, music and sports.”

I tell you about the journal that Quinn had started at school. I haven’t seen it yet but his teacher was impressed with it and will let us have it next week after the report cards are finished. Quinn picks up his book bag and reads to you. You have a little difficulty following the lines but your memory for french is fine.

The kids and I plan how we are going to see the parade tonight, while you get a call from an old friend from BC, Brett. You haven’t seen him a three or four years. You say “I love you man” in your open and feeling way. You try to sell Brett on the great properties on the east coast that could be bought easily with the proceeds of a BC house. You share with him your experience at the Boston Marathon.

I read to you more cards, while Tara and Quinn finish put the cards up on the wall your bed faces. I also read a newspaper article, about Linda Wagar, that your mother sent us. Linda is a runner and community organizer for many things who had an aneurysm in October. Among many hats that she wears, one is to raise money for young athletes by selling her book about marathons stories. I have ordered her book, ‘Canadian Marathon Stories’ for you.

We set you up with the Notre Dame game and head out – It’s like the old days ... You are watching football and we’re off to do some things. On the car ride to the library Quinn says that he is wondering how time can pass so slowly for you and pass so quickly for us. “It’s like the hours that are taken away from our day is added to Daddy’s day. It’s weird.” Quinn says. We had just spent 4 hours with you and Tara said “It didn’t seem long at all. It seems less then an hour.” She suggests it’s because without you, our routines are different. I have noticed this same time shift myself - Maybe she is onto something.

At the library, Tara gets another Chicken Soup book this one is for the teenager’s soul. She has read almost half the current ‘Chicken Soup for the Preteen Soul’ and is eager to move to the next book. Apparently she plans on growing up fast – so much for the ‘take your time getting older’ talk that we had to other day.

I drop Tara and Quinn at Juanita’s and plan to meet them of dinner in an hour and half. I just get home and start some housecleaning and the phone goes. It’s Rod Carew! He is stuck in Denver waiting for a plane. We talked for about 5 minutes. He asks how you are doing and if you can talk on the phone! We strategize how and when we could set up a phone call to you. “I want to tank you for calling, Mr Carew.’ “Ccall me Rod” he says.
“Give him a hug for me” He says.
“He is feeling a little stuck right now and your call is coming just at the right time.” I tell him.

Oh Gosh! I am so excited for you.

I suddenly realized after I said good bye to Rod that I had double booked myself. I promised the children that I would go to the parade and now I am also supposed to be by your side to ensure you get the phone call from Rod.

I panic for a minute. I‘m not sure what choice I should make – you or kids. Is this some kind of test for parenthood that God is giving me? I decide to call Tara and Quinn at Juanita’s house and share the news and feel out how they feel about me bailing on the parade. “You promised to come to the parade Mummy.” Knowing that this was also important to you they added “At least come to the first part of it.”

Once I get off the phone I scramble to get info about flight times from Denver to Chicago and time zones etc. I calculate that if I left the Santa Claus parade shortly after 7pm then I would be safe. I call you at the hospital to prepare you for the phone call. You never liked surprises – I figured that the benefit of the call would be reduced if I tried to surprise you with it.

I execute the plan – meet Juanita and children at the animal hospital. We walk to the start of the parade. I hang out with the children for about an hour and make it back to the hospital a little after 7 pm.

As I rush through the carefully timed plan, I realize that this does not feel anything like the quality time I am used to giving the children. I might be able to get them to think it seems like quality time … for now but I doubt I can fool them for much longer. I need to be there for them without a rushed schedule bouncing around in my head.

At the present – this is how my life has been and will likely be for a few more months. I worry about the price they might have to pay for my divided attention.

You would often tease the children about their birthdays. You would try to tempt them with the idea of a ‘Super Birthday’ celebration. You would dangle this idea for them with the added hitch that they would have to forgo the birthday this year to get a Super Birthday next year. They saw it as a raw deal and never took you up on this. Lately, You mentioned the idea of a ‘Super Christmas’ since this Christmas will be a little weird. You said “Maybe next year, we’ll have a Super Christmas!” They still are not interested.

Well, I’m not looking forward to a super Christmas or Birthday but I am very interested in a ‘Super Family vacation’. A vacation that is not weighed down with schedules or pressure to balance your emotional needs with their emotional needs. I can’t wait until we can have an day off all together.

As we wait for the call, you calculate that you have been a Rod Carew fan for 29 years. You had to do a presentation about Rod Carew in french for school. 29 years … 29 seasons. It seem ironic that it’s the magical 29 pops up again especially as we come close to 29,000 hits on your journal.

At 9:40 pm, the phone rings, It’s Rod. You answer the phone “Roscoe’s Meat and Wicker” Then a pause and then you say “Rodney Cline Carew! Thank you very much for calling.” Rod calls you the ‘miracle man’. You invite him to come to Nova Scotia. “You’ll have a place to stay… Do you run? We have a great relay race around the Cabot trail. If you want a leg.”

It’s a good talk and he says that he is going to call periodically and see how you are doing. You believe him. He was very sincere and caring guy - I want to believe him.

I hope that Rod’s call has the same effect on you that your pep talk had on the children. This weekend is going to put you in a better place mentally and emotionally for attempting more intense physio next week. I can feel your energy.

Friday November 20 – A Standing Dream

This morning Quinn asked me to come into his room. Another clothing crisis, I thought. Lately, all his pants have been either too small or too big. But that wasn’t what he wanted. He wanted to show me his worry board. His blank worry board. “I don’t think I have to worry about Daddy dying anymore.”
He had wiped the worry board clean. He had done this a few weeks ago but didn’t announce it to me, I had just noticed it. When I commented on it in an upbeat positive way, he secretly put the same worries back on the board. Worries about you and your death, worries about you walking with a cane.

I think that once he realized that you were worried about things too, he felt he didn’t have to worry about these things anymore. Once you acknowledged your fears and sadness to him he was able to let go of his. What a gift you gave to him.

“If I don’t put that on the worry board, what should I put on it?” He asks me. “Well,” I pause to think,”Nothing, Quinny. You shouldn’t have to worry about things you can’t do anything about. There are a lot of grownups, like me, that haven’t learned that lesson. I don’t want you to think that there is any good in worrying about things you can’t change yourself. That is a waste of your talents. Just worry about things that you can do something about.”

You did well with your pep talk. The results are almost immediate. First Quinn’s clean worry board and then Tara was up early today, feed Annie and put her out to pee. She fed the cats and got her own and half of Quinn’s breakfast. Tara feels better too and wants to be more grownup and more of a big sister this morning.

They were happy when they saw that you still had your sense of humour and that you could flip a devil stick about with your right hand without even looking. But the most important skill has now returned. They know that their Daddy is back.

I know their Daddy is back.

You have had an organized visiting schedule with friends from the church. Mildred has orchestrated this daily visit to help make your mornings go easier. I think it is helping. You are much more positive about the next chapter in your recovery. ‘Rehab or Bust’.

You have also had other visitors. The cyber kind. The other day, I had noticed that the number of unique visits to the blog was less then 1,000 hits away from 29,000. The thought absently drifted through my head that something important would happen when we reach the 29,000 mark. I had thought it might be a move to rehab but maybe it will be a call from Mr. Carew.

This morning the toilet seat is wet – I blamed Quinn – But it’s not Quinn - it’s your cat. Himmy feels compelled to drink out of the toilet even through there are four water dishes in the house. Which he takes great pride guarding from Annie when she is in the area. Annie says he is a bully. He really is becoming a cat of privilege. It’s hard to believe that this time last year you were trying to win this ‘wild’ cat over.

After work, Annie and I walk home with the last rays of sunshine. I don’t like the short days. When we got home, I checked the phone and there was a message from Frank Pace. He is calling from LA on behalf of Rod Carew! He said he is sending an email and he wanted our cell phone number. I can’t wait to tell you.

As soon as I got to your room, you told me that you were a failure. The physio team tried to get you to stand, but you couldn’t or wouldn’t. At the QE2 the physio team had tried this maneuver a few times, but there was not help from you. I didn’t think you were awake enough then – you don’t even remember these tries. This was the first time for you while really awake. You failed and you feel bad.

You had another letter from Janice. This was a very timely letter. She writes about a dream she had about you. A standing dream. There were struggles in the dream but you stood. She is proud of you, proud of everything you have been through, proud of your daily efforts, physical and mental, and proud of what you will go through for the love of your family.

We are all proud of you.

I remind you what Dr. Wallin had said about your progress being like that of a baby. A baby would never be able to stand on the first attempt. Failure is a teaching moment to cherish. Without a lot of mental effort from you, your brain will store that failure information and learn from it. You may have to try five or twenty or twenty-nine times before you get it. But you have to keep trying. This may have also been more of a test to assess how you are doing and if you are ready to move onto the next level.

I tell you about the close encounter with two degrees of separation from Rod Carew. That seems to pick you up a little but you still wonder aloud if you are worthy of his attention, if you can’t stand. To lighten the mood I beg that you not to share your enema stories with Rod Carew.

You smiled and said “I just want to be his friend. But if I can’t have friends then I want to be enemas.”

While Tara eats her dinner between her Ukulele and Muscial Drama, we talk about our next family excursion. “Sea kayaking. I want to go sea kayaking.” She says. That was a plan for the day after your stroke to celebrate out anniversary. You weren’t really excited about it but I was hopeful to talk you into it at some point this year or next year. Now, that seems an unlikely dream.

Tara was upset that I’m not spending enough time with her. “We never do anything together anymore.” While I remind her that it is not true, I realize that since you have been back in Truro, all my ‘spare time’ I have spent at the hospital. I haven’t done anything special with the children since the Halifax days … It’s been three weeks. She wants me to go to the tree lighting celebration. This is something I would usually do with the children but I don’t want to go - I want to be with you. I am torn .. I also want to do things with the children.

You are down on yourself today. You wonder why I am sticking it out with you. You seen to think it’s a mystery. I tell you what I love about you, not to mention the fact that you are still needed to be a parent to our children – I could never do that job by myself. I tell you how proud I am of your pep talk with the children and the immediate impact it made. A few well-chosen words can do amazing things to attitude.

“Besides” I said “I always get what I want … eventually – I just have to be patient and persistent and so do you.” (I’m thinking about your standing efforts.)

Earlier today, I had a good talk with Julia about brain injuries. Julia, who suffered from an aneurysm a few years ago, observed that a brain injury might take some things away but you may also get new things or feelings. In her case it was an extra dose of empathy. She thinks you are more empathetic too.

You really wanted me to stay overnight at the hospital. I was a wreck last weekend when I stayed the night. I don’t know if I could do it again. If this was a sprint – I could do it - but this is a marathon – I have to pace myself. I need a good sleep or else I’m no good to anyone. You understand and ask if I can just stay for an hour. We agree on a phone call before I come in to see if you are awake still. If you are, I’ll come in I promised.

Fran was going to come over and stay with the children but we switched plans. Fran suggested that since she was heading back to Newfoundland tomorrow morning, she would visit you tonight and see if you were still awake. I agreed. After a short visit with you – you were asleep- she came to the house. She warns me about spreading myself too thin.

Mmm, I wonder how she could give that kind of advice since she is has been spreading her time pretty thin between Mum, Dad, Juanita and me and the children. You also made this observation this week. “All Fran ever does - is give – when is she going to take some time for herself?” You wonder.

I guess this is more proof of your heightened sense of empathy.

Saturday, November 21, 2009

Thursday November 19 – A Priceless Parenting Moment

You are far more talkative with honest and open communication. Is this a legacy of the stroke or a passing phase like your bladder control and voice control? I hope some of it stays.

Last Sunday you called Pete in Ottawa. He emailed back some great observations about your recovery. He said:
“Wow, that was awesome and unexpected. What a wonderful surprise. Not surprising, it was deeper than our past conversations and I note the change in voice. However, in case you are interested, the other things I most noticed were:
 he was more articulate than before
 he was very aware/frustrated by his difficulty with time perception, and yet he never repeated anything
 everything he said was very intelligent
I was so happy!”

As I read this to you, you smiled. “I always have big belly aching laughter with Pete. I hope he can visit sometime.”

Kristin has already come and gone with your physio today. But she popped her head in the door, a little later, and I asked her if there was a time-line for rehab yet. She said that she is in contact with the rehab assessor, Nadine. This is the person you have to impress to get into rehab. Hopefully she would know more next week.

You feel frustrated that you can’t do things … physical things. You feel trapped in your body. You are frustrated that rehab is still out of your reach.

Liz, the stroke coordinator, was in to visit with you yesterday and left some home work for you to do. You are to think about your short term and long term goals. It’s a little unclear what she is looking for here. You ask me to help you with this. We talk about goals – the possible and the improbable.

One of the goals is for you to write the Christmas letter for this year. This is a job that we do intermittently. We do it every 3-4 years whether we need to or not. You have taken over writing the generic letter that goes with the card. I do all the rest. Your letters in the past years have been very funny and are a topic of conversation amongst our friends.

This year, your job is to do a really really good Christmas letter.

Andrew is your nurse today, He is your coke supplier. The ‘Coke Man’. He learned of your fondness for Coke Cola and has tracked down a hospital source for you. Your man, Andrew, arranged with the food service people to bring you Coke with your meals. When your lunch tray was brought up the lady also brought three cans of coke as well!

I read you some more emails – one was from John H in Ottawa. It brought you to tears. This is not as easy to do as it was a few weeks ago. You were touched by his words. John says:
“Chris Giles and I spoke on Monday. I hadn't spoken to him before or even knew his name. He put it best. "Chris is my very best friend. I don't know if I'm his best friend, but he's my best friend." That's the way I feel about Chris and me, and I am pretty sure that's the way many people feel about him. He has a way of getting and staying close to people, forever, and making each person feel like what they have with him is unique and special.”

This made you cry. You haven’t cried much this week but you did when you heard these words. I think John nailed it – you are a good friend to so many because you make an effort. In today’s world, it’s easy to let other details of life pull friends apart.

Life’s too short – communication is key – that is your mantra now.
You are much more talkative and open about your feelings. I like this new improved side of you but you paid a heck of a price for the legacy.

Julia (friend who had an aneurysm few years ago) said that in her experience, some things were lost and some things were added. Empathy, for example, was heightened for her. I think it is for you too.

“We were lucky that we got another chance.” You said. You are grateful – I want to feel it too.

You are right we are lucky. Over the past few years our lives have sped along at increasing speeds and slightly different directions. We were still insight of each other but we both wondered how long that would last. When the children left would we still want to be together? Neither of us wanted to think about the answer.

A relationship with a good foundation is only good if you want to share the basement.
We hadn’t talked about ‘us’ in ages. There always seemed to be more important things to talk about but like you said “Life is too short” – we need to talk about the important things first.

I read you a letter from Janice. She writes about the impact you made on her family. She said that she had noticed that “you never gave up on friends and the people you love and I doesn’t think you will give up on yourself either. ‘If you can meet with triumph and disaster and treat those two imposters just the same.’ She quoted this line from one of your favorite poems by Kipling.

Janice points out that you “have given us a second lease on life because of this disaster.”

You had another date with the commode chair. This time you couldn’t make it the second base without a little help from a fleet enema. While you are held hostage in the commode chair, I check out your bed and start to fall asleep. I wake to sound that can only lead me to the conclusion that you are giving birth to twins! You share all the details with anyone who is willing to listen and even those who won’t.

I tell you about Tara’s experience at school. You listen carefully. You are concerned
“I’m being selfish. I have thoughts in my head that made her doubt me.” I point out to you that when you run in a marathon – “you must have points when you want to quit
It’s natural to have those thoughts.”
“Yeah but she’s my daughter.” You said.
“Yes and you are her hero and she knows you are going to do your very best to get better.” I say reassuringly.
“I made her doubt me by doubting myself … a daddy should never do that.” You say critically.
You have always been one who likes black and white – you are too hard on yourself.
“I just don’t want to fail.”
“You won’t fail” I said.
You worry about Quinn also – he is so sensitive.
“I should give them a pep talk” You said. We arrange that I will bring the children to visit after their music lessons.

As soon as we get in the door of your room, you gesture for the children to come to your bed. You want to give Tara and Quinn the pep talk.

“I know I’m not much of a Daddy right now but I’m doing as much as I can to change that. Sometimes I cry but then I remember that you guys are my life and I want to be back and be your Daddy again. It is going to take a long time but I am going to do everything I can just to prove to you that I love you so much.”

“I’m going to work as hard as I can to come back to be your Daddy. I know there are going to be sad times but we have to get past them and think of all the good times we are going to have.”

“It’s will not always be like this”. You say.

Quinn told you that there were times when “I wanted to do this.” He is referring to the trick you worked out with him to help him let others know how he feels -pull on your ear lobe.
“Did you do that or did you just cry? “
“I cried.” Quinn said.
“Just remember that there are people all around you; they want to help you and make you feel better. People like to help – it makes them feel better too. You can also help each other. Tell us if you feel sad. All the grownups who look after you after school can help you feel better. “ You reply.

This is the first time since your stroke that you actually parented the children. In the past they were impressed with various aspects of your recovery. Thumbs up, writing things like ‘Is is Christmastime yet?’, getting rid of tubes and wires one by one, whispering then talking, arm wrestling and playing cards. All these were positive signs of recovery that would be typical of anyone with your condition. But this pep talk was a Daddy moment. A real feeling and sharing moment full of good advise that only a parent can give with love.

It’s was a priceless moment.

Thursday, November 19, 2009

Wednesday November18 – What If

Early this morning I was half dreaming and for the first time, I was thinking about the ‘what if’ game. What if we had got to you sooner on your stroke day. What if, I was there when you felt odd and took you to the hospital right away, would your injuries be as bad as they are now.

It seems crazy that I’m playing the ‘what if’ game now after 3 months. Immediately after your surgery, I played a version of the ‘what if’ game. But this version had a different twist. That ‘what if’ game involved thoughts like: what if you were found too late and you aspirated, what if you hadn’t donated your organs, what if you were in the shower when it happened. At the time I felt lucky. I felt gratitude.

I concentrated on how much worse the situation would have been. Not how much better it could have been. Because, at the time, the only alternative scenario, was for you to die. Living, even with deficits, was infinitely better then dying.

Now, I am playing the ‘what if’ game again. I am playing it with an alternate scenario of a full and speedy recovery. I don’t like this game but my mind is doing it anyway. As a result, I feel less gratitude.

This change in perspective bothers me. Why do I feel less gratitude? Is this part of my grief. Maybe it’s anger. Maybe I’m bargaining. I do not like this feeling. I do not like these thoughts.

In an odd way, I worry that these thoughts will somehow jinx your progress. I want to hide my thoughts from you until you are ready for them. I don’t want you to dwell on the negative, because your attitude is instrumental to your recovery. I don’t want your attitude ambushed.

The dietician has been consulted about your diet to see if tweaking your night feeding will help your gut motility. She wants to keep track of your intake for the next few days and if it is adequate, she will change how you get your nighttime feedings.

Today you had a special visitor. Richard (fellow runner and Tidal Boar teammate – the ‘Iceman’) came to the hospital to see you and show you the Olympic torch that he carried last night in the relay through Truro. The two of you caused quite a stir. Pictures were taken for the hospital newsletter. It sounds like it was a good moment … I wish I was there but I was at work.

While I was at work, I got a call from Tara’s teacher at school. Today, one of Tara’s classmates brought in a CD with photos that their grade 1 teacher had taken. He wanted to show the class how everyone had changed in 3 years. It was a good exercise. The slide show was good. Tara said it was interesting to see how friends were growing up. It was interesting … until a photo came up with you in it. You were volunteering with the class when the camera caught you helping the children.

This caught Tara off-guard. She started to weep at the sight of you. Her teacher took her aside and asked what was the matter. Tara explained that she is worried that you may never be able to do things like that anymore and she is worried about how you will be a Dad again. She is scared.

I talk to her about it before bed. She seems better now. Back in control – ‘Tara- Control’. I make a note to talk to you tomorrow about it.

Today seems like one big race. Most Mondays and Wednesdays seem this way. It’s a race from the moment the clock goes off in the morning. We have the rush to get to school and work. I have the get though work in a timely fashion so Annie and I can walk home and pick up the car and pick up Tara from ballet then I have to pick up Quinn from gymnastics. Then, it’s a race to eat dinner and do homework and get to bed.

There seems to be no time for a hiccup in the day. This pace is tiring. I am looking forward to a break, from all the activities the children do, at Christmas time. Of course, we still have to get past the Christmas concerts and special Christmas activities between now and then.

A break would be nice. Whether it will really be a break, remains to be seen. Perhaps I would prefer the normalcy of a routine then the spontaneity of change.

The race continues.

Tuesday November 17 - Miracle of Nature

Tara slept in this morning – she’s tired. She stayed up an extra half hour doing extra homework that she asked for – math homework. She loves math. When I kissed her good night she was happily adding and subtracting 5 digit numbers from and to each other. Today she is sleepy. I let her sleep an extra 30 minutes. She had a headache but after some breakfast - she felt better and ventured off to school. She doesn’t want to miss a day of school. It is her normal.

Carpet cleaning was here. The house seems cleaner and smells good. While I wait for the guys to do the carpet, I do some cleaning and made some soup. Although domestic duties are generally not my favorite job – but I’m in a groove today.

You were in a good mood. Marsha had visited you this morning. You are pleased with yourself because you had a date with a commode chair this morning and it was fruitful! Using a commode chair is a first. You credit the combination of coffee, bran cereal and eating your veggies.

Uncle John and Shirley came to say good bye to you. They are heading back to England. As they leave, Shirley says “Keep strong” and Uncle John says “Stay strong” as he hugs me. This seems funny to me because, since your stroke day, the standard goodbye that I say to you, even when your brain was sleeping, is “Be Strong”.

There seems to be a family theme around the word - Strong.

Erik’s ears are better. Fran got an ER doctor to check his ears – they are better but he is still grounded until the end of the week. No flights home. Erik is not that disappointed. He likes school, but the idea of spending a week alone with his Mum is pretty attractive. This also gives Fran and Erik an opportunity to visit Dad some more.

Maddie is intrigued by you but still not willing to make contact. She comes very close but won’t touch you. You really want to connect with her. I spot a polished rock that a friend had given you. A beautiful amber irregular polished rock that would fit nicely in Maddie’s hand. I pick it up and show it to her – she reaches out and takes it from me.

She smiles, pleased with her new treasure. I ask for it back. She acts rather coy and slyly gives it back. Then I give it to you. Maddie looks a little reluctant but she decides that it’s worth the risk. She reaches out her hand and takes the rock from your hand.

We play pass the rock game … for about 10 minutes. Maddie is making friends with you because you have nice rocks.

After lunch, the physio gang comes. Kristin does some range of motion exercises. You are locating pain much better. Kristin lets you talk so that you are distracted and that lets her push the range of motion a little further.

You ask if Kristin would give you exercises to allow you to be more flexible. “If I’m going to run again, I’d like to be more flexible.” Kristin replies somewhat encouragingly, “I can find some things for you to do.” You are pleased, “maybe I can do them while I’m stuck in bed.”

They get you sitting by the side of the bed. You ask if you can try to do it a different way. “No” She says, “We want you to do it this way so you won’t relearn to do it the wrong way.”

I picture that every movement that I take for granted will have to be broken down into a sequence of small movements so that, if you do them in order, you can do a simple task – like get out of bed ... the right way. This process has to be repeated for all the little tasks that we do.

Dr. Wallin was right. You ARE like a baby – learning to do things all over again. I hope his second piece of advice is correct …. the learning is faster.

Some water spilt onto the hospital bed table – Kristin got you to wipe it up. This gives you a task to concentrate on while trying to maintain your sense of balance, using your core muscles, beside the bed.

You ask if you could practice some throwing some balls. Kristin seizes on this idea for distracting you while doing the sitting exercise. If you sit while throwing a ball, you will have to practice balancing with your core muscles and yet time might not tick by so slowly.

Once you are in your chair, You go for the longest wheel chair drive so far. To the end of the hall and back and then to the end of the east wing. Then you fade. I push you back to the room.

I read you the first chapter from the book Dr. Feltmate loaned us, ‘Locked In, Locked Out’. You are interested in the story about a doctor in NB who suffered a major brain bleed that affected his brain stem area.

I tell you about Tara’s morning and her fetish for homework. “Tara is going to be and over achiever.” You say. I nod agreeing. We wonder if that will be a good thing or a bad thing. “She going have to learn how to handle failure sometime” you said.
There is nothing wrong with your ability to parent intellectually.

“I know that technically, I’m a man, but I wonder if I will ever feel like a man again. Would Quinn ever come to me if he was scared?” I point out that although the physical interaction may be difficult, You can still give the children the emotional and intellectual support that they need.

You will have to redefine your role in our lives. You will still have an important role in our family that will be unique to you – it will just look a little different. And it may be only temporary until your recovery is complete.

I mention the idea of stem cell therapy again. You said you want Edwin’s stem cells. I say that while that’s flattering, you would reject his cells, you need your cells for it to work well. Since your brain bleed seems to be a freak of nature, there is a good chance that it won’t happen again. Your stem cells are the best cells.

“Yeah, I’m pretty good.” You say proudly. “Someone told me I was a miracle, and you say I’m a freak of nature. So, I guess that makes me a ‘Miracle of Nature’.”

I pick up the children and drop Tara off at the Good Neighbor Club for a rehearsal for tonight’s performance with DRUM at the Olympics Flame ceremony. I ask the kids to look for the building – I didn’t know where it was. Quinn spots it first – he has your sharp eyes.

As Tara leaves, she realizes that the special hat she must wear for the performance is in the van that Fran is driving. Quinn and I have to go hunting for the van so we can retrieve the hat.

Gosh – nothing is simple. We drive to Juanita’s – no van, to the hospital – no van. Finally, desperately, I drive to the Mira where Dad lives – Success - Quinn spots the van … and the hat. As I collect my thoughts and try to lower my blood pressure, I think philosophically, that this journey brought me here for a reason, even though I thought the reason was to find the missing hat, maybe the reason was to put me at Dad’s doorstep. I seize the moment.

I planned on visiting Dad, but I thought that I would wait until Fran, Erik, Uncle John and Shirley left. I would visit when he didn’t have so many visitors. But now, I’m there and I feel compelled to go for a quick visit.

As luck would have it, Fran and Dad are by the front door. Maddie is playing with a big bouncy ball. Dad seems in good form. Pleased with his latest ideas about getting better. He even recognizes me … I think.

It was a short visit. He got tired quickly and went to bed. I’m glad destiny brought us together … even if it was just for a short while.

Quinn and I go off to see the Olympic torch relay finish in the park and watch Tara’s choir sing. It’s a pretty upbeat performance with lots of hype.

Just before bed, we call you and the children say good night. Another ‘normal’ routine is back in our lives – the family good night ritual.

Tuesday, November 17, 2009

Monday November 16 – New Beginnings Equals Stroke Day

I am so thankful that you still have your big three – Personality, Memories and Speech.
Personality and memories they make you who you are and speech allows you to communicate this fact to others. Mobility issues are certainly a problem to overcome, but the lack of some mobility does not change you as a person. It may change how you perceive yourself but for the rest of us, there is much more to you then your ability to get around and see well. Mobility and sight don’t define you – personality and memories are your real definition.

I ask you if you can feel deadness to your left side. This is how I had imagined that you felt in the early days. Even on stroke day – I thought the reason you wanted Uncle John to roll you to your right was because your left felt like a dead weight.

You said, you don’t notice a dead weight. You just don’t even acknowledge the left at all. It’s a ‘neighbor’ not you not a limb. You are frustrated that you can’t move but you don’t feel weighed down by your left side.

This has been changing every day in little ways. You gesture to the left now when it hurts. You look more to your left. Your brain is slowly finding the mate to the right.

Yesterday, I said to you that it was “11 weeks today” “11 weeks – that’s almost 3 months.” – It’s going to be a long road – a long marathon. It has been a long time. Home for Christmas doesn’t look likely.

Aunt Shirley and Uncle John from England visit you. They are also here to see Dad and share some time with him. They both feel you look quite well. The last sighting of you, was seeing you on the bathroom floor and in the ICU when there was ‘No Hope’.

You thank them for saving your life. You even have a vague recollection of them finding you on your stroke day. Your memory is amazing.

I think I am going to rename Aug 30th on our calendars. Instead of Aug 30th, it will be known as ‘Stroke Day’. After all it does mark the day that you choose to live again. It a birthday of sorts. A new beginning, Something with a potential that has not been realized before. New beginnings … new possibilities.

Whenever I kiss you good bye since your stroke day, I have always whispered ‘Be Strong” Today you acknowledged it and said “Yeah, that’s good advise, it helped me the other day when I had that enema. I can’t wait to hear the end to the enema talk.

Your nurse, Mary, wanted to establish a ‘Naptime’ for you between 1 – 2 pm.

Sunday November 15 - Stages of Recovery

I slept from 7:30pm to 4 AM. I feel so much better. My mind is awake and I can’t sleep any more. I didn’t have any bad dream. The night in the hospital I was plagued with them between the waking moments. Dreams about MRSA, intracranial pressure increases and No hope. What dreams I had - I don’t remember, but my heart and head feel good. My back even feels good too.

I get up and catch up on the journal that I’ve neglected to last few days. It feels good to get caught up. I feel more complete when I write in the journal. It nags at me when I fall behind, but when I get caught up, I feel like I have a little control of things. Even if it’s only processing the day’s events and making a little sense of them. Getting the thoughts onto paper – help recharge me for the next day.

I am also starting to realize that I can not do it all. My body won’t let me. My reserves are gone and I am existing on what ever energy I store the night before. If I’m going to keep up with life … keep up with the marathon – I need my rest.

I hope you understand.

Gosh my back feels good today. In the past, I always relied on your great back rubs to give me relief. I think I must have relaxed enough last night that my vertebrae slipped back where they belong. I will have to remember that trick for the future.

The children are still at Juanita’s house so I head off to the hospital early. I never said good night to the children last night – I just dropped them of at Juanita’s for dinner. They may have overheard a brief discussion Juanita and I had about dinner and a possible sleepover. But I didn’t say good night. I think this may be the first time ever that I never said good night to them – I feel very badly. When I get to the hospital, I call Juanita. She tells me the children seem fine and have not skipped a beat. No sense of abandonment.

Erik seems better – he had a good sleep and the antibiotics are working.

I guess sleeping over with cousins trumps a couple of good nights from a Mum.

You greet me with a good morning and “I had a Bowel Movement already!” You also ate bran buds for breakfast. That should make life, in that department, good.

This morning you feel like making phone calls. You call Chris K and Pete in Ottawa. You talked about many things with both of them but the common point, with both phone calls, was your disgust with the eye examination results. You also shared the enema story and your frustrations with time and how it is treating you. Bbut they were demoted to ‘page two’ stories.

When I overheard you talking with friends on the phone, I hear you practicing saying the phrases that you have been hearing. It as if you are trying them on for size. Words like: hemorrhagic stroke, two-year recovery, partially blind, rehab and lots of hard work. I wonder that if you practice saying the words – it will help you believe in the future and what it can bring.

I read the rest of the first week of the journal to you. I think it’s best that you take it in stages. As I re-read it, I am amazed at the energy (and bad grammar and spelling) that I had then to write – of course, at that time I had very little else to do. I wasn’t allowed to touch you or talk to you. Too much stimulation in that first week put your intracranial pressure up too high and endangered your recovery. Now, every second I’m with you, we talk, hold hands and I read to you and harass you to get in your chair and exercise. There is no time for writing – just reporting.

The phone rings and you answer it before I can. “Roscoe’s Meat and Wicker” you announce into the phone. It’s Janice and Ed from PEI. She had missed your call because she was outside … running. You feel that is an acceptable excuse.

Fran and the children come to visit. Tara tells you about her run with Marianne. You are proud of her. She seems very excited about the prospect of running every day – Oh no another streak-maker in the family. You suggest we measure the distance around the block and she and Quinn can run laps. That sounds like a good idea.

We all played a new game together. A question and answer game. A question is asked and the players makeup their own answers. The answers are then read out aloud and the players have to match the answer with the player. It’s good fun. Most of your answers were easy to spot. “Eye doctor” was your answer to, ‘things cause trouble’, ‘things you just can’t believe’ and ‘things that are politically incorrect’.

You can’t let go of the hurt that you felt when you heard that you have visual field losses.
I take the children to lunch and Fran, Erik and you have a good talk. Fran is pretty amazing. She is always popping up and providing support when you least expect it. And she does this for us all - Mum, Dad, Me, Juanita. She is the most empathetic person I know.

When I return to the hospital, we talk. We talk about my Dad and how he perceives his situation. I ask you “Would you want to know that you are dying?” “Yes – of course, in many ways – it’s a gift to know – the moments that you live from that point onward are more real and mean more. Just like the moments that I have now.”

You have those moments because you choose not to die. Now you appreciate life much more.

You wonder if I am happy with how things turned out. I feel a little hurt with this question – but I understand that you have to ask it. From this point forward, our lives will be very different from we thought they would be. Our roles will be different. You are concerned that I will resent the role that I must play. You worry that your dependence on me will push me away.

We didn’t choose our roles – they were handed to us. We were type-cast for the roles we have – you are the determined survivor and I am the planning doer. If our roles were reversed – I know the outcome would have been very different.

You wonder how the children will adjust to the role shifts within the family structure. The children defer to me now for decisions …not you. I think the children will adjust. When you came home – things will slide back to normal … Daddy rules.

You worry that I will stray away from you. “I’ve stayed by your side through all this so far and I don’t intend on doing anything different. The parts of you that I have always loved from our very first meeting are still with you. – Your humour. It’s worth it for me to stick around.

At bedtime, Tara wants to snuggle with me and ‘have a little talk” she says cryptically. She wants to talk about growing up. I tell her it’s OK not to want to want grow up too quickly – it’s a process that takes time and doesn’t happen over night. “Enjoy being a child.” I said “Because in the grand scheme of things, you are only a child for a very small part of your life.

The same is true for you. Being a child is a stage of life. Dependence is a stage of recovery. Embrace it and grow from it.