Tuesday, September 29, 2009

Monday September 28 – The Power of Positive Thinking

It’s been 29 days since you began this marathon. It seems like to longest 29 days of my life. I hope for you, it will seem like the shortest 29 days of your life.

I forgot your fish for 2 days – but they forgave me as some as they saw me or rather the food. There were no floaters. Erik would be angry with me – He went into great detail before he left for Newfoundland about how to feed your fish. “They should be fed twice a day” he said. “Just a small amount of the flakes a a few shrimp pellets in each tank. Too much or too little can kill them.” He was very serious.

I don’t want to have to explain to you that I killed your fish – so I made a sign in the kitchen to remind me.

I drove in with Darren. He talked passionately about the youth group he started. Clearly, this is his ‘baby’ – he can see, that he can make a difference. We are so lucky to have Darren in our community, who quietly helps make a improves the lives of young people. His words and his positive attitude about tomorrow’s adults inspire me. I believe he will make a difference.

Darren has two, very lucky, daughters. He is so pleased that his youngest likes watching hockey with him. I thought about you and your love of baseball. Recently Tara and Quinn would watch a little baseball with you, but I can’t sit still that long … I just don’t have the attention span baseball requires.

Usually as the season whines down in September, I would get interested in the playoffs … especially if the Angels are involved. I don’t have to follow the season during the summer, because you would always bring me up to speed the next day. Tell me about the good plays, the bad plays and if the angels deserved to win or lose.

If I watch a game with you, I suspect I would annoy you with the questions I’d ask. I would try to get into the game, but my barrage of questions would irritate you and you would strategically suggest that I might have something else to do. I would take the hint and leave you to your game.

As we drive to Halifax, we pass by an accident scene on the 102 – by the look of the car – there had to be fatalities – more families whose lives have changed in a split second. I feel for them. The pain feels very real for me now.

When I get to the hospital, I note there is tone in your fingers on your left side again. I’m thrilled, for a while I thought the tone, I felt on Saturday, was just my imagination. The tone didn’t last long – but it was definitely there.

Carrie, today’s nurse said she would help advocate for the urology consult we have been waiting for since last Tuesday. I also mentioned to her about the nasal-gastric feeding tube. She said she’d ask about a swallow assessment, to determine if you are ready for real food. I expect you would appreciate the taste of real food and it might wake up another part of your brain. Currently, you will suck on the foam mouth cleaners and you swallow after. The other day, you reached for my can of diet Pepsi!

Nurses have a tough job of being the go between. They have to advocating for their patient with other medical staff as well as balancing the patient’s family’s concerns and giving them realistic expectations. Not an easy task.

No urology consult today. The floor doctor wants to consult with other medical staff. I am frustrated. I could never work in human medical field – too many specialists - it dis-empowers the front line physicians from making timely decisions. I wonder how often this happens and at what cost to the patient!

Swallow assessment – apparently, you have to be more alert before that happens – so, it could be a while.

Physio Elaine came in and worked with your arm. She is pleased with your arm’s range of motion – no tightness in the joints. I told her about the tone in your fingers on Saturday and this AM – she asked if I thought it was a conscious effort. I had to confess – I didn’t know – you didn’t squeeze with the left when I asked, so that maybe just a reflex – but she was quick to say – “keep thinking positive”. I have no choice but to think positive – anything less may be a self-fulfilling prophecy.

Got you in the chair, I tell you about the Angel games. They have 7 games left, 4 vs Texas and 3 vs Oakland. I plan to start taping the games – I just have to find them in the program and figure out the VCR programming on your TV. This may not seem like a big deal – but this is stuff that you did so I will have to learn it. I will have to remember to do this, because since you have been in hospital – I have not watched any TV, not even the news.

If I can tape the games for you – I know it will boost your spirits later in your recovery so it is definitely worth the effort. At this time of year you always take each ball game very seriously, taking care to put on one of your many Angels shirts before the game.

You feel that this positive energy you contribute to the game definitely influences the outcome. If you missed a game and the Angels lost, it wasn’t the Angels loss, it was yours because you weren’t there to support them. If they won, you knew the reason why. You were there to cheer them on. You believe in positive energy.

Juanita with Maddie and Farley came to visit you. Maddie is almost ready to go to you but not quite yet. – still a little shy of you and your nose tube. While Juanita and Maddie got some lunch, we had the privilege of baby sitting Farley for the first time. He slept along with you initially. But not for long, still hungry, he was making obvious gestures to nurse. Juanita left a little milk. He drained it quickly. I had to mix more up, that seemed to settle him.

David, came to visit. “Here on library business.” he said. He had with him a present for you. “Go ahead and open it for him.” Wrapped in Christmas paper (David thought, you might appreciate that) was ‘Picture book about Rod Carew.’ I know as David did, this would be a cherish book of your when you get well.

You are awake again and watching as he nurses on the bottle. I realize how much Farley and you have to learn and relearn. The Dr. words came back to me “It’s like he is a baby again except the changes are faster.” He meant the learning resulting in changes would be faster with you. You have to relearn everything nothing is instinctive … that’s certainly going to take some time.

Get you back into bed, kiss good by – you mouth out I love you – I get it I lip read. Then the facial expression of despair cross your face – you try to say something – I don’t know what … I say “Rest and things will get better each day – I have faith in you – you already proved you want to live now you just have to keep working at it.”

Just as I leave, Barb accompanied by Lorraine (Mother to another patient about your age) met me at the door. Barb is with the psychology dept. She asked if I’d like to talk – I said yes - we arranged to meet tomorrow and I give her your blog address.

As I drive home I get a call, Quinn is sick again … fever. I meet Ann at the gym to pick up Tara and Quinn, who was nursed along by Ann. Tara is happy, she had fun at gymnastics.

Once home Quinn rallies again and figured out Yankee Doodle on the piano. On seeing this, Tara picks up the guitar and picks it out too. (Including the sharp notes!) They clearly enjoy the challenge of sounding out a tune. It’s a game or a puzzle to them. They both find it quite rewarding.

Music is going to be an outlet for them. A lot of the interaction between the children and you has been physical – wrestle sessions on the big bed – the two of them ganging up on you. This always seemed to happen just before bedtime – a time that I thought – winding down is the best thing – but this became a favorite pastime of the three of you.

If you have mobility issues at the end of this marathon – your shared love of music may be the connecting point for the three of you.

After dinner Tara and I negotiate the Scholastic book order. She started wanting 9 books. I could see this was going to be expensive so we decided that we would pay for half the books, but the other half had to come from her wallet saving. She had about $70 and was saving for an ipod. She downsized your order to $80 then $50 then $29 dollars. She quite pleased with her order and poundly produce $30 and demanded some change …please.

Jennifer visited with a BIG card from the church in tow as well as a very special picture of the cross-country team sporting a signs that says. “I’m running for Chris Cashen”. Jennifer said that her daughter, Katie shared your story with her running club and they were all touch and decided to do this for you.

There you are, laying in bed – most of the time, oblivious to us and yet inspiring us to do special things.

We do homework. Tara is stressed – she forgot a book at school, she cries, she vents about her class – it’s too noisy, she says … we can’t learn anything. Is it really the class she can’t control or is it what is happening to you that is making her frustrated.

I reminded Tara of your strong belief in the Angels, and her strong belief in the magic blanket. You believe in power of positive thinking. Positive thinking applies to all things in your life… even noisy classmates. Have Faith.

Monday, September 28, 2009

Sunday September 27 –Sprinting and Pulling Back

Quinn was sick last night but seems better in the morning. The children went for another swim at the pool – lots of fancy jump-ins and diving. They even cartwheeled into the pool. I warned them “Daddy wouldn’t think that is safe.” They agreed.

After, while eating an apple, Quinn chiseled out a Q and a T into the apple skin with his new emerging front teeth. “Look Mum, a Q and a T… get it? Q, T … you know ‘Cutie’ … Tara and I are Cutie” He makes a big grin. He is just starting to find his own style for a sense of humor.

I read yesterday’s journal entry to the children. They liked it but they think it would be good if, when finished, the journal ends on a page with a 29 in it, As in 129, 229, 329 etc. I said it all depended on Daddy and how he recovers.

Had a battle with Tara about wearing a coat. I am getting tired of the small conflicts between us – I did the wrong thing. I played the trump card – “If Daddy were here you wouldn’t even consider not wearing a coat.” Then I relented a little “You don’t to wear it but you need to take it in case you get cold.” Tara begrudgingly brings her coat.

I think to myself that I better not use the trump card too often – Tara is so head-strong – she needs to ‘own’ her decisions. I better learn to pick my battles, after all it’s just a coat.

On every elevator ride since we have been in the hospital, Tara and Quinn have taken get joy in riding in the elevators. Once in, they flock to each far corner and push themselves off the floor bracing their arms against the handrails. When the elevator starts to go up they groan against increased G force and as the elevator stops they sing in glee for that split second when they feel lighter then air. The same is true on the down rides, only reversed. It has not got old.

The next time they want to go on exhibition rides, we should just take them to a tall building with an elevator and go for rides. It would save you a lot of gastric discomfort compared to going on the ‘Tilt-a-whirl’ or ‘Tilt-a hurl’ as you call it.

You are pretty sleepy today. Not much response. We stay for a while. When it’s apparent that you are tired out, we go out to lunch and do some shopping.

I have noticed in the past few weeks that there is considerably less laundry to do, without your things. The problem with this is I don’t do laundry as often as you would, which means, the children are running out of clothes. Our mission was to find two pairs of pants for each of them so I only have to do laundry every 7-10 days.

As you know. I don’t like shopping – perhaps that is putting it too mild – I really don’t like shopping. Grocery shopping is bad enough - but clothes shopping – “I’d stick a needles in my eye’ as you would say while imitating Jack Nicholson.

The winter of 2006, Tara and spent the better part of 2 hours picking out a winter coat. Tara was head-strong then too. Finially we agreed on a hot pink brats coat. I tried to steer her away from brand names but this coat did meet my other criteria of a good winter coat. It had pockets, a hood, a good easy to do zipper and covered her butt. So we got it

About a month later, while I was sowing something, I left the scissors in Tara reach. The next thing I knew, Tara had cut three long cuts up the back of the coat. Now the coat would not cover her butt. I was steaming mad. When you came home, we put our heads together. I said she should live with the coat the way it was, but considering that I left the scissors out for her to get, I agreed, that Tara should get another coat. You came up with the plan that the ‘punishment’ would be that you go out and get a new coat for Tara. Tara was mortified. “Daddy can’t pick out a coat – I’ll hate it”.

When you arrived home, you hand Tara a plastic bag. Inside was a pretty nice coat. Tara’s eyes opened wide and said “I love it Daddy”. Tara was 5 years old the coat was a size 8. It was miles too big. We ended up returning it to the store, I fixed the old coat and Tara wore it for two winters. I never did ask you if you bought the coat too big on purpose. Very clever if you did – because we all learned from that incident. I never leave scissors around now, Tara has never cut up her clothing again and you never bought clothes for the children again …except running shoes

We did find some pants in a record 45 minutes. At the cashier we filled out a card for a $1.00 Olympic Games donation with your name on it and a special message to the athletes. ‘# 29 Rocks’. This won’t mean much to the athletes but it felt good to write it for you

We come back and you are still quite sleepy. Quinn is starting to feel sick again. Tara and I read a book while you and Quinn sleep …at separate ends of the room. I am worried you would pick something up from Quinn.

Our next mission is to get that urology consult that was requested last week. Carrie tells me to start getting assertive. On Monday, I will become the squeaky wheel. My other mission is to loose the NG tube – you don’t want it in – you have pulled it over numerous times – we have to put hand restraints on you to control this problem. I hate seeing you with the restraints.

As we leave, Tara, the rule keeper, reminds me to put on the restraints.

Days like this are hard – good progress yesterday – but now you are so tired. I’m so grateful you rallied for the children yesterday. I think they both feel better. When we went home – they didn’t talk about the tired day you had today, no – instead they talked about the great day you had on Saturday… They are still thinking positive.

It’s so hard leaving you – tying your right hand up and kissing you good night with your eyes wide open but not responsive – then turn my back and leave. That’s the image I take home with me, not the bright Saturday you had. I am thinking negative.

As we drive home Quinn sleeps and Tara and I talk. She says “ Well… well - it just makes feel sad knowing that we will never have the exact some family again. I know there be some things that he won’t be able to do the exact same. I am missing the old times … I not quite sure what’s going to happen in the future – So I just hope that … he gets really close to being his old self.”

We got to do a lot of things together as a family this past summer. I am thankful of that. I don’t know what the future will bring but I know there will be a new version of you that we will all need to get used.

Quinn goes to bed early to help treat his bug. Tara helps me fold laundry. She sees that I’m down a bit tonight. “Mummy, you have to be a little selfish and think about yourself for once” She says this as she gestures quotation marks for the word ‘selfish’. “That’s what I do – just like Quinn – we have to distract our selves from Daddy’s sickness. That’s what keeps us going.”

How does a nine-year-old get so wise? I accept her advice and tell her that might be something I’ll have to practice first before I get good at it.

I have to remember, when you have a good day like Saturday, not to assume that the momentum of your recovery is going to pick up – because it doesn’t. Like a marathon, if you sprint ahead for a while – you will have to slow down a bit to collect your energy for the next stretch of road or the next sprint.

I think, I should follow your lead. I sprinted over the start line, dealing with this event in our lives, planning how to help the children, by maintaining as normal life as I could for them. I also felt that, if I could write this journal to help you fill in the blanks then, you will have it to help with your recovery. These, I realize now, are bad coping strategies. If I can plan or be busy doing something then I don’t have time to grieve.

So now, I am learning to live in the moment. Which means I have to process the grief just as Tara said. I have to grieve for the possible changes that will emerge from you and how our family works.

The tough days, a few weeks ago when you were in ICU and the step-down ward, were your ‘hills’ in this race. You still have more hills to over come but probably not for a while yet.

My ‘hills’ were all the epiphanies I have learned. I needed to learn to overcome my hills by learning about myself.

We are running the same marathon but we have different pathways to get to the same finish line.

Tomorrow is day 29 of your Addiction to Life Marathon. I know I have to pull back a little if I’m going to last the duration.

Sunday, September 27, 2009

Saturday September 26 – The Irish Connection

Last night just before bed, as I tucked Quinn into bed, he was crying. He always seems to let his walls down at bedtime. When I asked what was the matter, he replied “ Today was the Terry Fox run at the school… and … Well, Terry Fox ran and Daddy ran and… Terry Fox died!” I tried to sooth him by explaining that Terry’s cancer was very different from Daddy’s stroke. He seemed a little comforted by that but I’m not sure he really believed me.

I thought I might sleep-in this morning, but I guess, my brain has evolved to be a morning person. It’s rather odd – you are the morning person and I don’t like getting up too early, now you sleep about 22 hours a day and I’m the morning person.

I get up at 6AM. I start the day with lice laundry so we can get to Halifax in good time. I get a few other household things done and pack for the weekend in Halifax. We load into the car and twice within 15 minutes Quinn peeks over my shoulder and comments on the speed limit. “Is this 50 km/hr?” – Opps No, I was going 60. I grind the gears in response to he query. “Is this 80 km/hr?” – It’s like you are right here – you, and now the children, seem to bring out my worst driving habits.

We drive Annie to Kaila’s horse farm, where she can play with Indy (Kaila’s duck toller) and Juno (a homeless dog from the practice). She should have a great time … sort of a doggy camp - sounds like a vacation to me.

Tara was concerned about Annie’s hair in your car. The hygiene standard you have for your car dictates that you clean it out once every two to three years whether it needs it or not. I said “I don’t think Daddy would mind that much.“ Pressing more Tara reminds me how important it is that I drive the van once in a while to keep it going. “Mummy, Daddy is not here, someone has to keep the rules and remind you about things.” (I have been hearing this quite a bit lately). You are always in their minds. Not all the back seat comments are negative – I did have one good one. As I turn onto the Stewiacke on ramp, Quinn pipes up “Good turn Mum!”

As we drive to Halifax, Tara and Quinn take turns playing a little toy piano … it’s quite loud in a small car … the trip seemed a little longer then usual, but their piano passion continues.

We are off to Halifax to visit you. You are awake when we come in the room. You seem fairly alert but it’s really hard to tell. Just because your eyes are open doesn’t mean anything. Tara and Quinn talk to you – you are doing lots of gesturing with your right hand. You point to Tara and then rest your hand on your heart – Tara got the message … “I love you too” she says. I explain to Quinn, that for now, you use your hand to talk.

You reach out and rub Quinn’s head, then touch his heart. Meanwhile Quinn lays his hand on your heart. Later, Quinn was holding your hand and you started to do a little light finger wrestle. I said “Hey, I wonder if Daddy can arm wrestle!” Quinn got his hand in position to wrestle and you did too! The match went back and forth a bit – but you won! Quinn says “Daddy won and I was really trying – I didn’t let him win.” You beat Tara as well.

By this time Tara has got the white board, that I brought to the hospital, off the wall. She wrote her name. ‘Tara Shilo Cashen’. She handed you the marker and you wrote ‘Chris Cashen’. Quinn was impressed, sounding like a proud parent, he says, “I can’t even write like that!” Then you and Tara played half a game of X’s and O’s – but that wore you out – you fell asleep.

You have been saving all your new tricks for today. The children are thrilled. I think Quinn feels a lot better. You are not Terry Fox … you’re Daddy.

While this was going on I picked up your left hand to exercise. The physio staff suggested that I exercise your fingers regularly so the joints don’t get stiff. When I picked up your hand – I was surprised to see that your fingers had some tone… some strength. Until now, there was no strength to your hand at all. Just limp. Now, there is tone – I could even lift your hand into the air with your finger curled around my index finger.

I am thrilled with this new trick.

After all that activity – you are sleeping again. Juanita, Wayne, Maddie and Farley came to visit. But you were worn out. Tara and Quinn excited told Juanita and Wayne of today’s progress.

Tara drew a picture for you on the white board. We put it by your bed so as soon as you opened your eyes you would see it. The white board is quite large and the picture almost looks like a view from the window. She drew a large green hill with a king wearing a very ornate crown at the top of the hill. Beside the king is a throne. The sky is blue and in one corner of the ‘window’ Tara wrote ‘The Hills of Tara’.

When Chris and I went to Ireland, we visited the Hills of Tara. We were struck by the ancient history it had for the Irish people. The place where all ancient Irish kings were crowned. It seemed like a magical place. It must have made an impression on both of us, because when we were looking for names for our first child, we shopped looking when Chris reminded me of that visit.

A friend from Truro who now works in Halifax during the week has an apartment near the hospital. She goes home to Truro on weekends so she offered us a place to stay over-night. We met Lenore at the 29th Annual Film Festival at the Oxford Theatre. Lenore was a guest speaker at the event and got us free tickets to a children’s film from Ireland. ‘The Secret of Kells’.

The number 29 surfaces again, and not only that but Chris and I saw the Book of Kells in Trinity College, when we traveled in Ireland. Ireland and 29 – two of Chris’ favorite things - the coincidence did not escape the children.

That’s two separate references to Ireland in one afternoon. For you there really is no other place to visit then Ireland. In the past few years, you have expressed interest in other areas, but I think your first love is Ireland. This may be because your family roots are from Ireland.

When we went there the first time, it was November. There is a river in Ireland called the Cashen River. Chris stripped down to he swimming shorts and took a swim in the Cashen River. Later that day, after he thawed, we stopped at small local museum and asked the origin of the river’s name. “Oh, Cashen? Why, that’s Gaelic for ‘pathway’.” Chris, I think, felt a little dejected. It wasn’t a famous nobleman’s name or after some prodigal son in the area. It was just simply ‘pathway’. I, on the other hand, loved the meaning. Metaphorically, pathway is a powerful word.

I have faith that this past month’s events, is part of a Pathway, part of the marathon.

We all enjoyed the film. When you are better, we will have to see if we can track it down.

After the film, we went to Lenore’s apartment and the children went swimming with Lenore’s nephews (Aidan and Lachlan) and niece (Maia). While their parents (Tamara and Tim) supervise the children, I came back to visit you.

I doubt that there are any lice left. We have all been treated even though only Tara had any signs. But just in case we settle in with our sleeping bags and pillows from home for a good night’s sleep.

Today was a good day. I think we ran through some beautiful scenery on the pathway of your marathon.

Friday, September 25, 2009

Friday September 25 - Just One Foot in Front of the Other

I talked to Steve (brother) last night. He and Laura (wife) are planning to come to visit you sometime in October or November. Like me, he is consumed with your health and feels helpless to do anything. Your Mom also feels helpless in Ottawa and wants to travel here with a friend. She is going to make arrangements soon.

It won’t be long before you start getting a lot of visitors. Many people want to see you but don’t want to tire you and possibly slow you recovery. I’ll have to ask the medical staff – at what point are visitors helpful.

I didn’t sleep well last night – restless and looked at my watch every hour or so. I noticed while laying in bed that Himmy is drinking a lot of water. I have got to get him checked out. I think I might be a bit paranoid but I don’t want to have any other losses to our family.

I must be paranoid, because when I did sleep I dreamt there was a fire at the QE2 and I had to get you out of the building without the elevators. In the dream, I seemed to have super human strength and I broke the window in your room and got you, and some other patients, out on the roof to be rescued … then I woke up again.

Quinn started last night in his bed! It was for the first time since August 30. In the middle of the night he took the migration route across the hall. He found his way into the bed despite the fact that Annie and Himmy had it monopolized and I was hugging a small corner. Another reason why I didn’t sleep all that well.

I drove in with Kevin, who works in the city and is the father of three boys, about the same age as Tara and Quinn. We talked about summer vacations and sailing and we talked about our work and work places. I am starting to crave my work again. I’m looking forward to a solid 8-10 hours of thinking about other things. It will be a mental break, an outlet and a release. It’s my comfort zone.

I have arranged to work Monday, Wednesday and Friday from 8 to 4. This fits in well with the children’s schedules of school and after school activities.

The week before this marathon started, we had just finished planning the children’s after school activities. Actually I planned it – you, quite wisely, went along with it.
We have gymnastics on Mondays, Swimming on Tuesdays, Ballet for Tara and more Gymnastics for Quinn on Wednesday, Piano for both and singing for Tara on Thursdays and Choir for Tara on Fridays.

We deliberately kept Saturday free. With Chris working Sundays and me working the occasional Saturday – there were very few days that could be a relaxing spontaneous family day. That’s right – I even plan ‘spontaneity’ for family times. I know you think this is a bit ‘over-the-top’ but you humor me.

Some might say we have over scheduled the kids, but if the children are busy doing things that expand their minds and bodies, then they don’t have time for my pet peeve – mind numbing TV and computer things. We do let them watch TV some but it amounts to less than 2 hours a week – and often less than 1 hour a week.

No time for trouble. A lot of circles of friends. Get to explore many interests. The recipe seems to work for us. But it was a schedule that really requires two parents who drive. Thankfully, our friends have collectively taken over a lot of the transportation and after school commitments. The kids are actually even happier then ever – they have a bigger circle of friends. I don’t think we have had the TV on since your marathon started.

You are a little more alert this morning. You had a good night, but you pulled out your nasal gastric feeding tube again. By the time I got to the hospital, they had it going again.

At 9:15 your tracheotomy tube came out. A large hole remains and a bandaid is put over it. The wound is to heal in gradually over time. In time you will get your voice back.
Quinn will be pleased – one more step to getting Daddy back. Perhaps this weekend, when Tara and Quinn are here, we will have golden chain ceremony to celebrate.

You are a little more alert this morning but the physio tired you out. You sleep and I write the journal and subconsciously scratch my head as I write about the lice.

When you wake, I take you to the patient lounge room for a change of scenery.

A woman whose adult son has been here for some time says she has also learned that she must take a day at a time. When supporting family members pass each other in the hallway – we exchange stories and feelings. It’s like an unofficial support group. It all helps. It is not a lonely journey.

You got 2 letters from Janice plus a binder to put the letters in. The first letter came with instructions, to the nurses, to read it to you when no one was visiting. It is hand written and surprisingly legible for Janice’s typical ‘dr writing’. It is also short (another surprising quality I didn’t know Janice had) but very meaningful and a short quote enclosed.

“Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary… Impossible is nothing.”

Nancy came to visit, she was pleased to see you and said that you needed to get better of the next Cabot Trail Relay. They are counting on you. It’s the rum runners race this weekend and something has been planned that you might like. “There will be photographic evidence.” She says.

We talked about your and Chris G’s wild idea of a running race in Truro … ‘Beat the Boar’. It would start in Old Barns and follow the dyke and Cobequid Trail. The timing of the event would have to depend on the lunar cycle – so it couldn’t be at the same time every year. But it would be fun. Nancy liked the idea. Who knows? That could be a project for you that will help get you going again.

You listen to your ipod for a while – it looks like you are sleeping but I spy your right foot tapping to the tunes. Another good sign.

While you sleep, I draw out plans for a outside chicken pen that is mobile and predator proof – so the poor chickens can get outside and enjoy a normal chicken life. Now, I just have to find time to build it. It looks pretty good on paper – I wonder how it will turn out.

It’s 4PM and I have to catch my ride. It’s raining and I feel a little down but I have to think about the progress that you made this week rather than today.

I buckle your right hand back in your hand cuff and say “Good bye, see you tomorrow, rest up for Tara and Quinn.”

I suppose this is the part of the marathon, where it seems like it won’t end – just one foot in front of the other – no major challenges and no victories … just one foot in front of the other.

Thursday September 24 - Reason, Season and Lifetime

Quinn asks this morning – out of the blue – “Will you tell me when Daddy’s tube comes out?” “Of course – it might even be today.” I say. Quinn seems relieved, he has been tracking your progress by the number of tubes you have going into you.

In ICU you had a intracranial pressure monitor and drain in your skull, a nasal-gastric tube for feeding, a tracheotomy tube, a central line, a venous line, a urinary catheter, a mushroom catheter, as well as the pulse ox wire and four lead ECG. This makes a grand total of 13 (tubes and wires) emerging from you.

It was hard for me to see you like that and I know what they were all for and how they helped you get well. It must be very hard for Quinn to see and understand – no wonder he has decided to measure your health with the number of tubes.

“Hey! There will only be two tubes left!” he says sounding pleased. “Now, that’s progress.” He says sounding rather grown up.

Tara is up early, dressed with her hair beautifully brushed and pulled back into a ponytail. She is looking a little more grownup too, taking responsibility for some little but still important things, like the fish feeding.

Tara and Quinn: Don’t get much older – stay little for Daddy – He doesn’t want to miss your growing up.

I drive in with Megan. Megan is a young lady who is wise beyond her 22 years. Her boyfriend, Jason, wrote a newspaper story about Chris’ Addiction to Life Marathon. Megan called me last week to see if I needed a ride. She comes to Halifax 3 days a week to finish her teaching credentials.

She tells me about her personal experience with left-sided paralysis after a nasty car accident six months ago. She told me to give me hope … it did … Now she is driving a standard car and was playing baseball this summer. Her recovery is not complete – but it is almost.

It’s obvious to me she is a very determined individual who let not let challenges block her way in life. She worked hard at her recovery and had Jason and a very supportive family watching her back all the way. I got the sense that SHE made her recovery possible but the outside support was a much-needed safety net.

In our conversation, she shared with me on her philosophy of friends. She said that her mother told her there are three types of friends. People you are friends with for a reason (you may not know the reason at the time but it will surface at some point). People you are friends with for a season (you help each other through a tough time). Lastly, there the lifetime friends.

Reason, Season and Lifetime friends - I wonder which type of friend she will become?

You are almost dressed and ready for physio when I get to your room. You had a good night with the tracheotomy tube – The oxygen levels have been very great. Your NG tube is on the other side – you pulled it out last night! So they replaced it on the right nostril – I suspect you are not impressed. Once the tracheotomy tube comes out the NG tube will be the next ‘ball and chain’ to be removed.

While you are half-asleep in the bed, I note that your right leg is making rhythmic movements as if you are walking … or running. Do you realize that this is a marathon. It will take a little while to get there since there is still no movement in your left leg.

You have 2 student nurses Kim, again, and Jenn too – The students are from the NSCC. Sadly, for them and us, their education might be put on hold because of a pending strike. I feel badly for them, this is a very good learning environment and the patients get a lot more nursing attention with the students here.

Kim brings some mail - a binder that Janice and her gang sent – with letters to read to you to help inspire strength in you recovery. The students are thrilled at the idea. I’m touched. Janice, Edwin and their family always think of the little things that make big differences.

The students keep checking you all over – lots of attention. They noticed the purple nail polish that is growing-out on your big toes. The ICU nurses knew exactly what that was a sign of – a great Dad with a young daughter. I think you enjoy letting Tara make you into her canvas.

The student nurses ask me why I brought running shoes with holes in the toes. I said that I thought that shoes that were like old friends - would be the best. I did have to pick a pair out of a collection of 15 pairs of shoes.

I have to give you credit – you do throw out about 1 –2 pairs every year. The problem is – you add 3-4 pairs to your collection every year. You don’t to be a math genius to figure out that after more then 12 years of running you would have a small flock of shoes.

I think you regard your retired shoes as old friends that you want to visit from time to time. You know your shoes far better then I. You even know which shoes you ran a specific race in.

Your shoes do vary a little, but they are all Asics gel running shoes. The model number and colour may vary, depending on the year. The problem, with this practice, is that you don’t know if you are mixing up the lefts and rights with a closet full of identical shoes. How do you know that the left and right shoes that you mate together will get along OK? Maybe they compete for your attention and slow you down ot trip you up!

I hope I picked some comfortable old friends for you for this marathon.

Physio Steve and Jill get you sitting up and stretch your back. They try to get you to lift your head up – your neck muscles are weak, I’m instructed to try to get you to turn your head from side to side to help keep your neck supple.

In a chair – we do a ‘wheel about’ the floor. There are four sections to the seventh floor. Two orthopedic and one cardiovascular and the neurosurgery unit. Lots of stories pass through these halls – lots of hope and miracles too.

When I got back into town, I picked up Tara from the vet hospital, where she went after the lice were found. She was looking at a louse under the microscope. “Augh, that’s gross” she says as she shutters. Lisamarie, one of the best nitpickers I know, had just spent the last few hours nit picking and recovered 3 adult lice. Tara’s hair looked quite beautiful now.

She bottles her prized lice and names them ‘Franko’. While I am pretty gung-ho about exploring all aspects of nature, I really feel that lice should be in be segregated from other life forms. I seal the bottle with duct tape. She wants to take to school tomorrow! I guess she is not too traumatized with the whole lice thing, although she is annoyed she had to miss almost entire day of school over it.

2004 was the year of the lice. Chris calls me at work one day. “I was playing catch with Tara and Quinn outside and you won’t believe what I found.” Well he was right – with that type of set up – I was thinking – a deer or rabbit or raccoon or something that lives in the woods. I wasn’t thinking head lice. “Tara’s hair is crawling with them.” He says.

By the time I got home with Nix shampoo, Chris had picked out and saved the evidence for me … in case I didn’t believe him. There was a lot of evidence. Tara (4 years) has the worse dose but Quinn (2 years) was a close second. Chris found some on me and I found some on him. Eeeck – I still shutter with a creepy crawly feeling when I think about it. It took us 2 months of continuous treatment to get them all.

2004 was the Year of the Lice. I make a mental note to check you tomorrow.

When we got home, Tara found $10.00 of quarters in the ‘food fairy’ cooler by the front door. I said to her “That’s what you call ‘cold hard cash’. She didn’t get it – I had to explain it to her. She said “That’s funny Mum, but not as funny as Daddy”. Thanks Tara!

Music lessons were next. Chella could tell they practiced. Quinn still loves the piano.

Then we were off to ‘Meet the Teacher’ night. All the children’s teachers are great … it’s going to be a good year.

Things I learned today: Lice are not friends. Shoes are old ‘Reason’ friends and we have a lot of ‘Season’ and ‘Lifetime’ friends.

Thursday, September 24, 2009

Wednesday September 23 – From Realist to Optimist

I feel that I shortchanged you that first night – I accepted the ‘No Hope’ message too easily. All I could think of at the time - was – I have to accept the ‘No Hope’ message and assimilate it quickly so I could help the children through their paths of grief. I felt if I denied the ‘No Hope’ message myself – I couldn’t help them. Denial breeds hope and I felt that giving the children false hope would be more destructive. I felt I had to be a realist.

I hope you will forgive me.

You have a very attentive student nurse today, Kim. Her father had a big stroke 10 years ago – he is still quite active but has some right-sided weakness but most people wouldn’t know. He can still put in a garden – I smile upon hearing this … I wonder if you would ever want to garden ... I doubt it – ‘Busy work’ you call it. Oh well, that’s OK – that’s my passion.

I help clean you up with Kim and another student. Poor you, you have two lovely young ladies fussing over you and you can’t even appreciate it. Hopefully, reading this will help you enjoy the thought! The muscle atrophy in your legs and back is astounding – muscle doesn’t stick around long if you don’t use it. All those hours of training – gone in three weeks. There is weight loss too. You were always trying to lose those extra love handles – this is a heck of a way to lose them.

Your tracheotomy tube has been corked for 24 hrs - so far so good. Maybe tomorrow you will get your tube out.

Dr. Walling was in to visit. He says you will have periods of lucidity and they will increase and get longer as you connect back to reality. “It’s like watching a child grow – but faster”. I am really happy. Last week’s emotional turmoil seems like a year ago.

Physio Jill did range of motion with arms and legs – “Hamstrings a little tight” she says. I told her you didn’t like to stretch much. I told her how you had read in a marathon-running book that if you don’t normally stretch – then you shouldn’t. You felt this gave you permission not to stretch.

Jill feels there is a little tone in your left leg, but “Nothing in the left arm today.” Jill says, sounding positive – as if maybe tomorrow there will be some strength. Is her optimism real or a put-on for our benefit?

I ask her about the Rehabilitation Hospital. “Oh he is not ready for that yet – that’s at least a few weeks away. He has to be aware enough to cooperate with the treatments. Then, there may be a wait of a few weeks to get into it – there’s been lots of head injuries this summer – you know motorcycles etc.” she says.

Great  Mental note – don’t get a head injury in the summer – probably the winter is bad time with falls and motor vehicle accidents. I guess if you plan to have a brain injury then do it in the spring or fall!

Steve and Jill get you sitting up on the edge of the bed of about 5 minutes. They help you stretch out your back. “He seems sleepier today” Steve says. He’s right – you are sleeping more – I remind myself – sleep is restorative to the brain – for normal brains and injured brains.

I wash your back. Your strong back muscles are small and your back is boney – it doesn’t look like your back.

I think you spotted the clock The children and I got for you – it’s 11 AM and your eyes are open but I’m not sure if you are here or somewhere else (in that mystery room 7329 perhaps).

You are having problems passing your urine. The nurses have a small ultrasound machine that is called a ‘Bladder Scanner’. They have to catheterize you regularly. There is an increased risk of bladder infection when this is done often. An urologist is supposed to check you out sometime soon.

We get you in the chair just as I have to go back to Truro. I kiss you good bye – you are sleeping.

Your first marathon was in 1986. About 6 months after we started going out. You were 22 at the time – young and foolish and didn’t believe that serious training was something you to do at that age. You would run from your home to my apartment and you called it a training run. I think the very most you ran at once, before the race day, was 17 km.

You ran that race on guts and faith that you could do it. You even had a half descent time, considering the ‘effort’ you put into training. About 3:35 I think. You were so casual about the training, I didn’t think it would be big deal to bike home from the marathon after – so we brought our bikes. You didn’t think it was a big deal either.

Fran was visiting me that weekend in Ottawa and we navigated the streets of Ottawa to various spots throughout the course and cheered you on. We met you at the finish line at Carleton University with your bike to go home. You even tried to ride the bike – it was a no go. Your quads quit. You had to walk home (about 2 km) and push the bike!

You really did run that marathon on guts and faith. The marathon you are running now has a similar theme. You didn’t train much for this one either – not to recover from such a massive brain injury – but I know you will finish this challenge too … on sheer guts and faith.

Since then you have tried different training strategies with many different results. There was the:
- ‘Stay up all night and run 2 legs of the Cabot Trail Relay while nursing a cold, and then cough so bad that you vomit on the road’ strategy.
- ‘Get as many long runs in as possible within 2 weeks of the race’ strategy.
- ‘Eat NO carbohydrates for 2 weeks before a race – then 2 days before lots of carbs’ strategy.
- ‘Run in as many marathons in a row as you can (preferably every 2 weeks) – because you may get lucky’ strategy.
- ‘Run fast in the first half and ‘bank some time’ then slow down in the last half’ strategy.

Thankfully, the latest strategies that you got from a book seem to work. You researched the ideas and it worked for you in the Johnny Miles Marathon. And at Boston, you stumbled across a new one … start slow and your race will have very consist speed right to the end. You were the most proud of this tactic.

On Tuesday, I drove down with Karen, a friend from Tara and Quinn’s school and her husband, Hollis. Next Tuesday will make the 1-year anniversary of Hollis’ stroke. He has made a remarkable recovery. He had some speech and memory issues but he is still improving every day .

I got the sense from both Karen and Hollis, that Hollis’ determination to get better was a big part of his recovery. That stubborn streak can be a blessing at times like this. Karen did her best to maintain a positive attitude and that helped make a difference.

I asked Hollis if he had any memories of his stay at the QE2. He was there for about 6 weeks. He said no significant memories, just a few vivid pictures (like photographs). “It seems like it was yesterday, and yet it was a year ago”. He says. His first significant memories are of moving to the Rehabilitation Hospital. I suppose that is a good sign his brain was ready to move on to the next chapter and restore itself.

This knowledge comforts me a lot. Even after meeting Hollis of the first time – I wouldn’t know he had a stroke. He still feels the effects of the stroke, at times, but is learning to adapt. Recovery is part healing and part adapting.

Knowing that some memories will likely never return also gives me comfort. I cringe when I think of the three frightening hours you spent on the bathroom floor, conscious, wondering what had happened to your body – feeling helpless, scared and alone. I hope those memories are not written to your hard drive. They are best forgotten. The same applies to your few lucid moments in ICU when the intracranial pressure increased – that must have been the worst headache ever. I don’t want you remembering that.

I look forward to the day when you can remember things and start the new chapter of healing in this story.

Wednesday, September 23, 2009

Tuesday September 22 – Three letters and a few kicks to the head

Tuesday September 22 – Three letters and few kicks to the head.

Being a veterinarian, I have always been interested in the perception of animals. Things like; how do dogs think with their noses, how is a cat’s night-vision different from ours. What perceptions do my patients have about their environment? How can I understand it better?

Now I’m interested in your perceptions. What do you see? How do you perceive sound? What about touch? Is it amplified or dampened down? Maybe it is distorted and is frightening or is it strange in a comfortable sort of way?

Recently I’ve have talked to some people who are recovering from head injuries. Listening to their memories and perceptions of their past experiences has helped me a lot to understand how you might be feeling.

I got an email a few weeks ago from a woman whose husband, also a marathoner, had a similar brain injury about 1 ½ years ago. His recovery has been steady … and quite remarkable. She suggested reading a book entitled ‘My Stroke of Insight’ by Jill Bolte Taylor. As soon as I read the email I remember reading a book review about the book. I had mentally put it on my ‘must read sometime’ list, but that list is long and it was just added – so I hadn’t acted on it yet.

That night I went online and ordered it – received it last week and started reading it. I had planned for it to be my nighttime reading, but my bedtime is rather irregular at this time. Perhaps I’ll get more read today.

Your perceptions must be erratic. I think you tune in and tune out and there is no predicting when it will happen. Your facial expression and body language are misleading. I imagine your brain to be like a radio receiver. Input (stimulation: sound, sights, feelings, touch even smells) turns the tuning dial but the frequency is passed by in a moment so you get a moment of lucidity and then you receive only static again. Thinking of it this way helps me to understand.

I hope it’s not like that Mr. Bean episode where Mr. Bean tries to watch TV with an antennae this is not working well. The viewer only sees Mr. Bean trying to get reception by manipulating the antennae, you don’t see the TV screen but you can hear either static or a BBC broadcast depending whether Mr. Bean beside the TV or in front of the TV. He gets clear reception when he is beside or behind the TV, but as soon as he turns to watch the TV, the static returns.

This continues for sometime. He finally realizes if he simulates his presence elsewhere in the room, he can fix the problem. So, he undresses and places his clothes in such a way as to resemble himself by the antennae. The plan works! He finishes the skit, watching TV in his underwear.

I shall sit by your bed, and wait for those moments when you tuned in to your channel 29.

This morning you are in a new room … #7341. I know you would have preferred 7329 but I checked around – there is 7329. There is a 7328 and 7330 but no 7329. Maybe 7329 is a hypothetical place in this brain injury unit. Maybe it’s somewhere here in a different dimension and that’s where you are when your eyes are open but you are not responsive.

Physio Steve and Linda got you sitting up. You had to work at lifting your head. You still needed help to balance your torso. Steve and Linda tried to get you to stand – you are not able to … yet.

Dr. McNeely came in to visit again. He seems like a quiet and gentle man. I didn’t know who he was – he had stopped in yesterday … I thought he was a resident. (I asked the physio Steve after he left.) He doesn’t look especially young – but he doesn’t looked worn or jaded - attitudes that seem to come with age and experience. Dr McNeely just looked kind and interested. He asked you to lift your head up – he seemed pleased when you did.

You have two nurses today, Serena and Jenn. Together, they look after 7 patients. A little different from ICU where had a whole nurse to yourself and in the intermediate unit where you had 2 nurses for 4 patients. They stop in regularly to check on you.

The short physio session wore you out – you are asleep again.

When cracking the cover of a book of fiction, I have the somewhat annoying habit of reading the last page first. I only read the last page – nothing more. Then I start the book from the beginning. I like doing this because I am intrigued about how the story is going to go from one point to another.

This is a habit that I will have to drop. Yesterday’s epiphany – one day at a time and live in the moment has to override this urge. If I can then we can count the moments together.

Can’t write as much today – You are more alert then ever and for longer too. I don’t want to miss a lucid moment – so I am not as long winded as before.

At noon, Serena ‘corks’ your tracheotomy tube (clamps it off – so you have to breath through your mouth and nose). A monitor is place on your finger to measure the oxygen level in the blood. I am instructed to watch your percentage of oxygen. This is a test to see if you have a good airway. The oxygen hovers around 97%. That’s pretty good. You are passing the test – and you didn’t even study… Well that’s not really true – all those bad coughs you got from our infectious snotty nosed kids – have paid off – “He has a really good cough” the nurses say. Who would have thought that all that practice coughing (your pet peeve) would help save you now.

If you can keep your oxygen level up for 48 hours – you get to say good bye to the tracheotomy tube. I don’t expect you will miss it.

When I get back to Truro, I pick up Tara and Quinn from their swimming lessons at the pool. Then we go and mail three letters to Rod Carew. Thanks to some amateur detectives I have three different mailing addresses for him with possibly more leads to come.

We sent one letter to him in Anaheim CA, his home town, one to the Baseball Hall of Fame in Cooperstown NY, and one to a baseball bat company in Connecticut. The three of us stamped the letters, said a special magic spell (‘Go 29’ hey – it can’t hurt) and handed them off to the postal clerk.

My friend Julia, who experienced an aneurysm a few years ago, suggested to me that as the brain tries to connect with reality, the sense of time is lost. “You close your eyes and you don’t know if you have been asleep for 5 minutes, 5 hours or 5 days.” injured So to help you reconnect to time and reality we bought a large display clock/radio and a white board to write the date each day.

It’s an early bedtime for us all tonight, I must get up early for a lift with Marsha. I rushed around to get things ready for the next day. When I go up stairs to kiss Tara and Quinn good night, Quinn is hiding under the blankets of our bed. I thought he was just being silly – so I pulled the blankets down … he was crying. “What’s the matter?” I asked. He mumbles. I ask again. He says “I thought you forgot to kiss me good night.” Oh God, I got so busy planning and doing things, I didn’t see his pain.

Quinn slept in our bed again … and kicked me in the head several times in the middle of the night … I deserved it.

Tuesday, September 22, 2009

Monday September 21 - In the Moment

It’s another beautiful Marsha morning – although still dusk when we leave Truro – you don’t know what’s the weather going to be like until we are almost in Halifax. We talk about food. Marsha and her husband are great ‘from scratch’ cooks. I have a garden of fresh organic veggies that are looking for a good home. I think I might have found a home for some of the produce.

You are awake when I get here – up since 5 AM! The docs did rounds at 6 AM, I get there by 6:45. Your eyes are open. They drift from thing to thing within the room - exploring. Perhaps you are searching the room for something familiar. Despite the visual search, you don’t seen very responsive.

I tell you about the Angels win yesterday over Texas: 10 - 5, “now they are 7.5 games up!” No obvious response. Are you sleeping with your eyes open again.

A lab tech comes in to take blood – you are very cooperative. That activity wears you out – you sleep. While you are half-asleep – I notice you tuck your right hand in the waistband of your hospital clothes. Gosh – another familiar gesture. Whenever you would fall asleep in front of the TV, you would usually tuck you’re the finger tips of your right hand in your waistband. I guess that little ‘body position’ memory is back!

Dr. McNeely was in to visit briefly. He asks how I think things are going. I optimistically say that I see little subtle changes each day – and I try to hang onto those for hope. Their advice: Patience … Mmmm … not a strength of mine.

Tracheotomy tube will be capped and we will see how your oxygen levels perform – if you play this game well you will get rid of your tracheotomy tube and win back your voice … and your golden chain!

I noticed last night that I’ve lost some weight. I don’t know why, I am still eating and trying to eat healthy, I do forget sometimes to eat but my stomach reminds me eventually. I’m not getting much exercise – except for doing seven floors of stair once or twice a day - so I don’t know where it’s going – Perhaps it’s the weird hours I’m keeping - I am a morning person now – a new default set in my ‘hard drive’ brain.

Stress has always caused me to gain weight in the past – I’d eat my way to comfort – This is a different type of worry – a worry that, I feel, is completely out of my control. I guess my body deals with it differently.

Remember when we had a hailstorm. It was on a day that we both had off. You wanted to go for a run and as you left you said the weather looked odd. The children and I decided to go for a hike cross-country to Juanita and my Mother’s house. A little bad weather was no deterrent to us. As we entered the top of Victoria Park, the hailstones came down – it was a fantastic experience for Tara, Quinn and me.

We reached Juanita’s house with hailstones in our pockets to put in the freezer and stories to tell. You were running when the storm hit but rather then be deterred – you made the best of it and you hydrated with the hailstones – sucking them in your mouth as you ran. By the time you got home you had composed a write up in your head to put in a running club newsletter entitled ‘Hydrating with Hailstones’. You felt that this was a test for you – and you passed – you ARE a serious runner.

You are a serious runner – you ran through that hailstorm and you managed to run through the ‘hailstorm’ last week – and you made the best of it. What do I have to worried about – really?

While waiting for Debbie to get you changed and into your chair. I talk with a gentleman in the family room. His wife came to the hospital a few days before Chris. He has had some worries about his wife and her care. He feels his wife has received quite a range of care – from medical staff who go beyond their job description to others who give mediocre care. He said this especially true once his wife was a regular hospital bed.

He also talked about his frustration with his wife’s progress. Even though, she is cognitively aware and able to participate in her rehabilitation, they were still waiting for a space in the Rehabilitation Hospital. He is painfully aware that the best outcomes occur when rehab is started early.

Debbie tells me you are moving to a new room this afternoon. I think of the advice I was just given. There are pluses and minuses to the move. I guess we will have to see.

It’s the first day of fall. I think it’s your favorite time of the year. Probably for a number of reasons. The crispness in the air makes you think about baseball season series starting, good running weather and it’s time to play pickup football with your friends.

At noon, I go for a walk, while you are sleeping. I going to check out the tourist bureau to see what activities I can find for the children to do when in Halifax – so their visits to Halifax offer them other experiences. I think it’s probably better for them if they visit you for short periods so they don’t wear you out and you can get your rest.

As I leave the hospital, I walk past a stretcher with a body shrouded in a green cloth… A person with a different story and a different outcome. I put my hand in my pocket and rub the polished ‘gratitude’ rock and give thanks.

This is the first time I’ve been outside the hospital in the middle of the day since your ordeal began. I walked for about 90 minutes – it felt like I was away for hours – I couldn’t wait to get back. My mind clears as I walk and I begin to understand my coping strategy.

I couldn’t bear to think very hard about the present, and I couldn’t imagine what lies in the future, so most of my journal has been about our past. Remembering those events – gave me comfort. Now, I think I’m getting ready to embrace the present – because you are still here and fighting for a future. I am beginning to realize that thinking too far into the future is pointless and dangerous – it serves no purpose now. This is my epiphany for the day.

The lady at the tourist bureau was very helpful. She shared that her husband battled cancer when their children were young. That was 12 years ago. Life is good again for her family. Everyone has a story … his or her own version of a miracle. It’s strengthens me to know that recovery is within reach.

You are alert again – we hold hands, you seem very alert now – I talk about the children and coming to Halifax. Mid way, I stop and ask ‘If you hear me, squeeze my hand once”. You give a good long squeeze. Good, I think. “OK, if you understand what I’m talking about, squeeze my hand” …Nothing – Oh what does this mean? I rest my head on your lap. And my eyes well up.

A little later, Juanita, Wayne, Maddie and Farley come in – you perk up. We talk. I tell Juanita about the plan to move you and periodically test to see if we can remove the tracheotomy tube. Maddie looks at you closely, from a distance. She doesn’t want to get close. Juanita lets you see Farley up close. You hold my hand, then you pick up a towel with your right hand and wipe your face! – Another first. We talk more – I don’t know if you understand me or not.

Marsha comes in after her shift. She is impressed at how much better you look. I don’t see the difference. “Well, when you see him every day – it’s harder to spot ... He does look much better.” I want to believe her … there are moments when I do.

As I say good bye, you whisper – “drive me home”. I explain that you need to stay in the hospital for longer but you WILL come home. I said “ I love you”. You say “I love you” fairly clearly.

Turning and walking out of that room was very hard to do.

I think I’m going to have learn a new trick – learn to live in the moment. Being a planner, by nature, means living in the moment doesn’t come naturally to me – I will have to work at it. If Chris can continue to improve a little each day – I will learn to live in the moment. I probably have the easier job.

Monday, September 21, 2009

Sunday September 20 - Sportsmanship

Today was the day Chris had been looking forward to. The Fiddler Run in Sydney, Cape Breton. It is a marathon that he hadn’t done before. He loves running in the Cabot Trail but hadn’t run in Sydney yet. This was to be a training marathon so he could qualify again for Boston in 2010.

Chris turned 45 this year. The age 45 years put Chris into a new age bracket and the Boston Athletic Association (BAA) allow you 10 more minutes to qualify. Last year he had to run a marathon distance in less then 3 hr 20 min. As a 45 year old he gets 3 hrs 30 minutes.

In April 2009 his time at boston was was 3:22:45. Just missed the time to qualify as a 44 year old, which was what he was. But the BAA has a little loop-hole. If your birthday in the year that you ran – takes you up to another age bracket, then you get the extra time to qualify that the new age bracket allows. So, even thought he was 44 when he ran in Boston this year, and in theory needed a time better then 3:20, he is allowed to qualify in 3:30 instead.

Although he appreciated the loop-hole – he didn’t want to use it – he wanted to get to Boston again as a official 44 year old. (ie run a qualifying time under 3:20 not 3:30.).

A few years ago, when he first started doing a lot training to qualify, he knew that this was a lifetime dream and felt that he HAD to run in the 2009 Boston Marathon … Why? – Well - For no other reason then the year 2009 has a ‘2’ and a ‘9’ in it … or a ‘29’. When I suggested, naively, that he wait until he turns 45 so he could get and extra 10 minutes, he said “I might as well not even go in if I can’t get in the 2009 Boston Marathon.”

It was 2009 or bust as far as he was concerned.

The day he qualified for Boston in the June 2008 at the Johnny Miles race (with a time of 3:16:41)– was probably the third or fourth best day of his life. Tara and Quinn’s birthdays are probably tied for first, the Angels winning the World Series in 2002 would be the second. After that, I’m not sure but I would say that the qualifying marathon time probably beats our wedding day. I don’t know – I’ll have to ask him when he is able to talk again.

You have always had a strong sense of fair play, even when the events went against you or your team, if the other team or person played better, you appreciated their efforts and felt they deserved it. You apply these values to all aspects of your life – sports, parenting, and even socially when you were a jury member this past summer. Fair Play is your motto.

You have been trying to teach Tara and Quinn that same standard you hold for your self. Recently when you taught them to play checkers and crokinole, you would not make their game easy – sometimes they win, sometimes they lost. I love the way you teach them to love ‘the game’ – and not love ‘a good outcome’. I believe that is awesome parenting.

Tara and Quinn are feeding your fish most days. The days that they forget, I remember – so far they all are alive. Today, Tara said “It’s a little scary in Daddy’s room without Daddy there”. I agree your man cave – seems lonely and empty without you there. It’s eerily quiet, with no music or tv sounds, just the hum of the fish tanks. We are feeding them and I’m going to have to get fish food again soon.

When we get to the hospital, Debbie, the nurse, says you have been up for about an hour. That’s a long time, given the recent events. Tara and I do your left-hand exercises – extend and flex each finger. Tara likes to help. She is a ‘doer’ like me.

Debbie gets you up into a chair and you visit with us. Janice and Erica and Jessie are here too. We go to the sitting room to visit. We talk – you listen … I think. I take a picture of all of you together – at first a regular smiling picture (you are not smiling) and then a pointing picture. Quinn gets really excited about doing a Daddy pointing picture.

I am the family photographer. We have very few pictures of me. Most of our pictures are of children and animals. Occasionally, I can get a spontaneous picture of Chris – but generally – he knows that I’m in photography mode and will pose for the picture – his one and only pose is of him looking to the side and pointing … at nothing in particular – just pointing. The children have picked up this behaviour from him and now they do the same. The result is – We have lots of pictures with the three of them all pointing at something … but in different directions.

I think you will appreciate the picture I took. I can’t wait until you see it and respond to it.

I have been worried about your vision. A few days ago, when I told about the Angels record. I tried to show you an article in the newspaper, you reached of the paper, but put it down. Can you see? Or is it just too difficult to read right now. I thought that if you can write, then you can read – but maybe that depends on the level of awareness you have at the moment. You haven’t written anything since Sept 17th

On the way here today, the children spot 2 eagle nests near the spot we have dubbed the ‘Red Lake’. A spot, at the 52 km marker between Truro and Halifax, where the fall temperatures have turned some maple trees, by a small pool of water, a beautiful colour.

Tara and Quinn have definitely learned the ‘spotting skill’ from you. You have such sharp eyes – Always spying interesting things in nature – a skill I think you learned from your parents. You would get frustrated with me – for not seeing what you are trying to point out. It seems so obvious to you but I appear blind to it. You would have been a good provider back in the hunt-for-food days – Although you would never hunt now – You believe the only way hunting is a fair sport is if “the deer had guns too.” (It goes against your sense of fair play). I’m glad Tara and Quinn have your sharp eyes.

After seeing the red lake and eagle nests – Tara is working on a word search book, when she notices on the back cover and advertisement for name poetry. An example was given and it happened to be for ‘Christopher’! She reads it aloud:

C is for character, integrity so true.
H is for helpful, so caring too.
R is for rollick, laughter and fun.
I is for intelligence, you out shine the sun.
S is for sharp, a brilliant mind.
T is for thoughtful, always kind.
O is for obliging, showing you care.
P is for perfect, happiness you share.
H is for honour, a devoted li’l man
E is for excelling, talented and grand.
R is for radiant, a princely boy.
Christopher, pure pride and joy.

Tara summarizes “That’s perfect for Daddy”. I would have to agree … except for the ‘li’l man’ and ‘boy’ parts.

Janice takes the children for some lunch and a little walk about – While they leave you wake up. You seem to want to know what’s happening. I try to tell you briefly what’s going on – trying to keep the message upbeat and positive:

“You were really sick but you so much better now.”
“Your body probably feels strange right now – but the doctors think you can make a good recovery.”
“You are so tough – and you’ve come a long way fighting this – keep it up, we are counting on you.”
“We love you – keep going and get better – it’s going to be like another marathon.”
“You can do it.”

After a short time you start to cough, but the cough if different from your tracheotomy-clearing cough, nothing comes out of the tube. The ‘cough’ almost seems like a chest-heaving sob. Oh God - Are you scared inside?

You fall asleep again. Today was the first day that you were awake for as long as you were. Essentially, you were awake (eyes open) for 2 hours in the morning and another 2 hours in the afternoon. This is an improvement from earlier this week. During your eyes open times – I think you are aware at times but there are other times you are not. There are other times when your eyes are closed and your right hand explores things. You run your finger over something repeatedly as if trying to figure out and understand what it is. It’s like your sensory input can only receive one stimulus at a time … auditory, visual, feel. Maybe this is how the brain heals – one little part at a time.

I talk with two other women with their son’s in the neurosurgery ward. One mother’s son is here for a rather routine shunt replacement – he is 21 and has had a shunt since he was a baby. The other mother is in her seventies, and supporting her son ‘s recovery from a brain injury. He has been here since June – and it looks like he will be for longer before he is ready for the rehab hospital. I feel her pain and admire her strength. Somehow, she still maintains a positive attitude … at least in public.

On the way home, we stop at the Dartmouth Sportsplex. Once the children see the pool – they are excited – huge water slides. They can’t wait for their next visit in Halifax when we spend the night, rather then drive back and forth. Maybe next weekend…

After dinner, Tara and Quinn play with Maddie, helping her get ready for bed. I watch and wonder whether Maddie will master speech before or after you and who is going to master walking first Farley or you?

Sunday, September 20, 2009

Saturday September 19 - Music

Saturday September 19

As I lay in bed to catch a few extra moments of sleep, Himmy (Chris’ newly tamed and adopted cat) walks over my face and makes himself comfortable and stretches out across the king size bed. For a stray cat – He certainly has learned how to hog the bed. Thanks Chris.

Quinn is the first one up. He is dressed and has his hair brushed in seconds, runs downstairs – right to the piano and practices all 15 pages of his book twice … then again without the music, by memory! He does a little victory dance, rather like an Austin Powers and runs back to the piano to do some more. He sneaks a peak at the next few pages. “They are easy!” He exclaims. He loves discovering his new developing skill.

Tara has been the musical one in the family – I suspect she gets it from Chris. A few years ago, I gave Chris an ipod for a birthday present. He wears it for some of his longer runs. The music playlist, he has is made up, consists of well chosen pieces that are very motivating to him. I can’t remember a tune or carry a tune until it’s drilled into my head repaetedly. Chris has am amazing ability to remember music and I think he feels music emotionally much more then me. Of course, maybe he is just normal and I’m the abnormal musically challenged one.

Tara and, I think, Quinn, have that part of his brain inside them. From an early age I could see that they felt music like Chris. Tara was easy to talk into music lessons. She started with a do-it-your-self book with a built in keyboard. She figured out Happy Birthday in no time and played it for Chris’ Mom when she was 4 years old.

Quinn has been a little shy of stepping into the music world – I think he feels Tara’s shadow. The experiment, this year, to get him interested in music - was – just that …an experiment. If he didn’t want to do any music – we would keep looking for another passion. But now, I don’t think we will need to look further, because he has found a passion – at least for now.

We start out to Halifax to see you. Tara spots Erin and her mother driving by as we drove through town. I note “Wow, You have a good eye – spotting them like that.” Her response is “Well, I am a Cashen! Mother!” Mmmm. Another driving dig at my expense. She probably picked it up from your observation of my ‘Mr.Magoo’ driving style. Tara and Quinn have come to assume that their superior ability of spotting the little details along the road is due to your genealogy – not mine.

At times, I wonder - What DNA did I ever pass on to them? – They are certainly your children. They have your appreciation of music, sharp eyesight and increasingly sharp wit. It’s a good thing I remember giving birth – or else, I would wonder.

Oh well, I embrace the difference and as we drive to Halifax, We break into song:
“Make new friends but keep the old, one is silver the other gold.” The three of us in-a-round. They don’t seem to mind that I mess up the words and lose the tune consistently – actually – Tara seems to mind it a lot, but Quinn is nice about it.

One day, a few months ago, I was walking Annie, and suddenly, without any effort from me, my thoughts became crystal clear – like I was looking at our life together at this time for the first time from the outside. I thought, Gosh, look how lucky we really are, we’ve got a great family, our health, our priorities in the right order for this stage in our lives. Life is good – I wonder what new challenges can we take on.

I thought about the empty-nest stage and how that will be an adjustment for us. I thought about retirement and the opportunities it offered for big projects like travel and building our own house that is off the grid or at least as energy neutral as possible.
What would be the next challenge – I wondered, thinking it would be one of our choosing… I didn’t expect a challenge so soon.

We get here – you wave Hi to Tara and Quinn and say their names very clearly. They are very happy about that. Debbie, the day nurse, gets you up into a chair with a hoist. Quinn tells you all about his music lesson.

You tire quickly. Getting into the chair is wearing. Tara and Quinn leave to go see a movie with friends, Madeline and Bella. You sleep some more. I think about when we would tell the children that they need to sleep if they expected to grow. I’ll bet your healing happens more in your sleep then in your waking hours … At least I hope it does.

Jody, a fellow runner who went to Boston this year too, comes to visit you and we quietly talk ago the psyche of the marathon runner and decide that the marathon runner thinks differently from other ‘normal ‘people.

You awake to greet Jody. You energetically put out your hand to shake Jody’s hand. Jody teases you that he will nag you to get running again – maybe it’s not a tease – maybe that is what will happen! It seems weird to say this but you are in a great position to over come your disabilities at this stage of your life now.

As Jody leaves, Janice, Erica and Jessie (from PEI) come to see you. They bring you a few presents – a sun catcher and a Canada Games shirt. You reach out to hold their hands. Janice can’t (won’t) … She thinks she is starting a cold “I think I’m being more paranoid then you’d be … if that’s possible” She says. The nurse breaks up the party and says it’s time to get you back in bed. Once your head hits the pillow you are asleep.

Tara and Quinn return. They had fun at the movie –“Cloudy with a Chance of Meatballs”. I remember reading the book to the children one-day at the church – it has a cute-crazy theme. Tara and Quinn said the movie was good.

Suddenly, you are wide-awake again! We hold hands and talk – you try to talk but your new voice is very hard to understand. You gesture to your chain around my neck. I take it off and you hold it. I suggest that you might like your chain and rings back on. I ask the nurse if this is wise – She says the rings can go on but not the chain yet. You can have your chain back when the tracheotomy tube comes out.

Great! – When the tracheotomy tube comes out you not only get your voice back but you get your chain back too! That sounds like good motivation to continue to improve.

Just before we leave, Tara spots your foot moving. “I think Daddy wants some music. We should get his ipod out and let Daddy listen to some tunes!” I put your ipod on your ears. Jackson Browne’s ‘Running on Empty’ leaks from the ear-piece as we kiss you good bye. I hope it calms your worries and heals helps heal your brain while you sleep.

As we sit down to dinner, Tara and Quinn excitedly tell of you saying their names loud and clear today. Juanita teasingly said, “That’s great, but he said Farley’s name three times yesterday!” “Oh He was just teasing him” said Tara grinning.

They had a good visit with you – they felt your presence today – They know that you are inside! Thank You

Friday, September 18, 2009

Letter to Rod Carew


Dear Mr. Carew,

As you read this letter, my husband, Chris Cashen, is lying in a hospital bed. He has been there since Aug 30,2009. On that day he had a spontaneous brain bleed and he was expected to die a brain death within the day. He has a good healthy body. He is a marathon runner and competed in the Boston Marathon this spring. He had left instructions to donate his body after death.

He didn’t die as expected. The doctors repeated a CT scan the next day and realized that he was one of very few ‘lucky’ people where the bleeding leaked into a ventricle in his brain. That prevented the brain tissue from being crushed against his skull. Surgery was done and he is fighting to make a recovery.

Chris is a stubborn man at times … Thank God. Perhaps he didn’t give up because his beloved Angels are doing so well this year. Maybe it’s because Chris is such a very involved father; he realizes he still has a lot of parenting left to do, or perhaps; unknown to us, there is still more good things he needs to do on this earth … that remains to be seen.

Chris has been a passionate fan of yours for many years. It started when he was a kid, in the 1970’s. You caught his imagination in your rookie year. He has followed you and your career when it took you from Minnesota to Anaheim and from player to batting coach. He loves your approach to playing ball, your work ethic and the intelligent way you perfected your skills.

The number 29 is special to him. We were married on the 29th of Aug 1987 (thankfully the 29th landed on a Saturday that year or else I would have had to wait for 14 more months for a wedding date!). He wears a golden 29 on a chain around his neck. Twenty-nine is featured in many parts of his life, including on his hospital bracelet right now.

He was especially touched when Michelle was very ill. He asked every Black Canadian he knew to register with a tissue registry. As a father, he felt your pain and the need you had to do anything to help your child. He felt your sorrow too.

I know, you probably still have many people who love and respect you and your approach to life, and this letter is probably one of many that you get every day. But if you were able to reply – even a few well-chosen short words – it would be a great boost to Chris.

It’s been 19 days since his brush with death, and we have a very long road to go. I took the liberty of calling his recovery “Chris’ Addiction to Life Marathon” (note: there are 29 characters if you count the apostrophe on Chris – Chris would appreciate this).

When this ordeal started, I thought that if I documented what has happened to him – the power of the story will help motivate him to keep working at getting better. Recovery from brain injury takes a lot of strength and determination. I know he has these qualities and will tap into them (I expect most marathon runners do) but there will be days when his frustration will get to him. That’s when he needs us.

I have posted his story on a blog site.
It is at: http://marathon-of-hope.blogspot.com/
Please feel free to check it out.

Thank You for your time and even if you don’t respond to this, know that you planted a seed in his heart and head that has made him strong as a person. When he overcomes his brain injury, some of the credit can go to you and your influence as a role model in his early years. Thank You


Gwen Mowbray-Cashen

NOTE TO READERS: Unfortunately this letter was returned - the mail box is full
If anyone has any ideas to get this to Mr Carew - I'd love to hear about it - email be at: ccashen@eastlink.ca

Friday September 18 - Fingers and Farleys

Friday September 18

Big rush this morning – it’s picture day at school – I try to make sure Tara and Quinn are presentable from the waist up. There was some discussion about wearing the 29 shirts backward for the pictures but we decided that we would save them of Saturday’s visit to you.

I drive to Halifax with Lori and 2 of her children. It’s a beautiful morning with some fall colours showing and we have a great talk about raising kids and helping them find things to be passionate about in their life … and then the conversation drifts to you … again. Lori’s positive approach to parenthood and life (and even death) is contagious.

You are asleep, I let you sleep because I spotted Steve and Rebecca, the occupational therapy (OT) team – they are going to get you up soon enough. Christie, another OT person has left some instructions on exercises you can do to help your recovery. I want to get a handle on them today so I can help you do them on the weekend.

Marjorie, day nurse, said you had a good night, but you were less impressed with the early morning, and when asked to give a thumbs-up, you gave another finger instead! You better not do that in front of the children. I’ve never known you to use that sign in the years I’ve known you. She wondered if there was a little frontal lobe damage (it controls personality – I think). I like to think that you are yourself – but just extremely frustrated with everything and being trapped in a body that doesn’t do what you tell it.

I have been thinking a lot about how I talk to you. Are your thoughts confusing to you or are you able to think clearly? Do you hear and understand us as you normally do. And if so, are you irritated that everyone is talking to you like you are a child? Yesterday, I tried to listen to what and how I was talking to you. I have no idea how my words or perceived by you. What feelings are you having – confusion, sorrow, despair, euphoria – I don’t know – your face reveals nothing – maybe your finger conveyed the real feelings you are having.

When you awake, I will try to talk to you like I normally would in my usual style of a some rambling, a little nagging and add in a lot of encouraging thoughts.

Today, I am going to try to catch up on the diary, because as you are awake more – I’ll have less time to write and yet I want to continue to document your story for you.
Tomorrow, Tara and Quinn will come to visit you. I want to try to find some activities nearby for us to do so the visit to you will be broken up over the day. Quinn will miss a birthday party to come to visit, when I asked him what he wanted to do, he said – “visit Daddy”.

Christie comes in and goes over your left-hand exercises with me. I ask her about the muscle tremors and whether to massage them out or not. She says – “lightly massage only – the tremors are probably coming from the brain injury and unlike the muscle cramps from running, massage will only make them worse.” She asks about your running and I give her some stories of your Boston experience and the blog address.

Christie asks about your bracelet on your left wrist. It’s the blue rubber bracelet you wear for the Notre Dame Fighting Irish Football team. It reads ‘Play like a Companion Today’. A motto, that is dear to your heart. I said to Christie that you WILL be one of her best patients because you will work very hard and do everything you are told.

Steve and Rebecca get you up in the chair and I give you a tour around the 7th floor. We settle back in your room with you in the chair and I try to talk to you and tell what’s happening. You motion that you have belly pain – I ask if it’s heartburn – you indicate yes.

The feeding tube, that goes through your nose into your stomach, maybe the source of the discomfort. It passes right through the lower esophageal sphincter – which allows acid to burn the esophagus. I ask Marjorie about additional treatments to help the pain. The feeding has to stay in until the tracheotomy tube comes out – so medicating heartburn is the only thing to do.

I get out a few treasures of your that I brought from home – to see if they provoke any response. I show you a baseball – you finger it and palm it and try to squeeze it, even weakly toss it in the air … What a show off!

Juanita and Wayne come to visit with Maddie and little Farley – but you asleep. John K visits – you still sleep. John and I have a great talk about the amazing power of the brain – the seemingly untapped potential … or IS it untapped – maybe it is being used in ways we just don’t understand yet. Just before John leaves, you rally and even shake hands with John – another new trick!

Adva visits. Tonight is the “Jewish New Year, Rosh Hashana, ” She says. “I brought you some apples and honey because it will bring you a Sweet New Year. What a great thought.

You get to see your new nephew, Farley for the first time – and you clearly say ‘Farley’ three times…“Farley, Farley, Farley”

It’s music to my heart.

Thursday September 17 - Robots and Rocks

Thursday September 17

I didn’t sleep well last night – restless and disturbing dreams left me with the sense of helplessness and a head ache, I don’t know why – I hardly get headaches anymore since I started to life healthier life. I suppose the last few weeks are catching up – hope I’m not sick – than I can’t visit you.

At 5:30 AM, Annie greeted Marsha and Marianne the usual way – a butt sniff – that’s her way … her dog way. They comment on her name and say it suits her. “Yes, that’s what Chris said on the way back from Cape Breton where we got her – ‘She is an Annie – we have to keep the name’, he said”.

Annie came from a family friend’s farm in Cape Breton. Kate and Brook and their three children, Linnaea (10), Liam(8) and Eben(6)have a little piece of heavenly farmland nestled in the hills of Cape Breton. Their family dog, Phoebe had a litter of puppies April 20, 2008. She had 10 beautiful white fluffy puppies. We first saw them when they were 5 weeks old.

We were up in Cape Breton for one of Chris’ favorite running events, the Cabot Trail Relay. It is a 24-hour race with 17 legs. Most of the 65 teams have 17 runners, some with fewer. They start at St Ann’s College and run over all the peaks and valleys of the trail and back to Baddeck for the next morning. Chris ran in it for 2 years then he and Chris G took over as team captains. He loves this weekend of running, cheering the runners, the camaraderie, the sleepless night, the crazy antics … it is a complete joy. He looks forward to all winter. The last few years, he ran 2 legs of the relay and this spring he ran 3 legs (about 54km all together – I think).

Chris loves to go to Cape Breton for the relay and the children and I love to go to see our good friends. Chris and I talked about getting a dog, but he wasn’t ready to make the commitment. So I tried to keep an emotional distance from the puppies. Their father is a Maremma, a livestock protection dog. He is 13 years old now and fathered Annie’s litter at the age of 12. He is about 120 lbs and white and very hairy.He lives with many sheep, keeping them safe from predators like coyotes. He is a real working dog. Annie’s mother, Phoebe, is also a working dog – but she works part time on the farm and fulltime in the house. She continues to mother her three remaining babies (Annie’s siblings) and look after her human flock.

We got the see Annie’s litter once more over the summer. They were growing fast. We weren’t sure if, given their parentage, they would make good family pets. I continued to keep my emotional distance. In late August. Brook called and says there is one female that is not going to be a working dog. “She likes to be in the house too much.” He says. “Might make a good family pet.” Chris took the call and told me about later that night. “What are you saying?” I inquired. “Well” he said, “Let’s go up and check her out.” I smiled – my heart soared … so much for that emotional distance I was striving for.

Labour Day weekend last year, we went up to Cape Breton and brought home our new dog – Annie. Linnaea had given her the name and it suited her. Chris, who has taken great pride on naming all our animals since we met, felt Annie was … an Annie. Although, later, he added ‘Annie the Wonder Dog’. Chris has a real talent for finding the right name.

It’s another Marsha morning – a beautiful sunrise over the city greets us. Jenny, the night nurse, worked hard all night – a very busy night. Jenny, a nurse for 34 years, says you had a good night, thumbs-up and a new trick – high five, no tremors, a little diarrhea – mushroom catheter is back in (actually that’s ‘back end’ for Chris). She said you seemed to have enjoyed your teeth brushing. Your sodium level is normal! The extra fluids worked. Your temperature creeps up but not high like before. Tylenol helps that.

My head ache gone too … It was just likely stress and fatigue.

Dr Mendez stopped in! We talked about Chris – his advice –take life in 24 hours steps – He put into words (validated) what others have been telling me and I have been learning myself – Yes – day by day – that’s how I have to think.

We talked about stem cell treatment and it’s potential – which cells are the best – what’s the best timing for treatment? 250 M dollars have just put into this research – there will be a lot of information soon.

You woke up for about 20 minutes. You said Tara & Quinn’s names again. I am warmed by this act of love and determination. Tara and Quinn are going to be a big part of why you are going to reach your full potential.

I talk to you about what has happened and our hope for the future. I don’t know how much you can take in – but I talk anyway. I tell you that Janice (from PEI) is coming to visit this weekend – and how she’ll talk your ear off and you have no choice but to listen – that should be good for you. She, as well as many other people, have been thinking of you everyday.

Dr Mendez was in to see you again – by way of his new medical toy – a robot – which will enables him to see patients all over the Maritimes. An actual robot wheels into the room with a screen for a head with Dr.Mendez’s face projected on it and a small image of Chris and me in the corner of the screen. I get the feeling that he is a man that thinks outside the box. An inspiration to behold.

We spend a lot of time holding hands, I can’t do as much writing. Your hand is always exploring, and you try to say things but the tracheotomy tube prevents this. You feel my face and explore my shirt, your oxygen tube, your feeding tube and the blood pressure tube. While you were sleeping again, I write a letter to Rod C. Nothing ventured – nothing gain.

Dr MacNeil came in to change your tracheotomy tube to a type that will give you your voice back. That procedure took a lot out of you, you are sleeping again. Dr Grandy (of infectious disease) stopped by – will continue to watch over you but is very pleased with your progress in the last 2 days. Later, Dr Schleck (also of infectious disease and the name is not spelled right – I have to get it right if this ever makes it to a book!) comes in to see how things are going. It turns out we have a mutual friend in Truro who told him of the blog!

Steve and Rebecca, from physio, came with a special chair. Steve asked where were your clothes – Oh gosh –you have no clothes here! – I never thought of that – you came to Halifax naked and haven’t needed clothes until now. Mental note to me –bring clothes!

Steve and Rebecca sat you up – first time since that Sunday that you were upright. You are weak but had balance and could do things with your right side. This undertaking made you break out into a sweat – “It’s a lot of work” Steve said.

You fell asleep in the chair and I fell asleep in your bed ... for 30 minutes. Then Jay, Marty and Janice visit from the church. They think you look pretty good – last time Jay saw you was when you were in ICU with tubes coming from most body parts – You do look better then you did. But you still look a little rough around the edges. Time will take care of that.

I get a lift home with Jay, Marty and Janice. We talk about … Yup that’s right – you … You are going to get a swelled head after all this attention. The subject of organ donation comes up – and Jay wisely points out – that if you were still alive 24 hours later in Halifax after your collapse, you would likely still be alive after the same time frame – if you stayed in Truro. At that point, they would have likely investigated your condition more and got you to the QE2 for more help. It may have taken a little longer – maybe more damage – but you would have ended up in Halifax sooner or later. Did being an organ donor save your life – I don’t want to really know anymore.

Once home, I pick up Tara and Quinn and take them to music at Chella’s. Tara has enjoyed and thrived with piano and more recently singing with Chella. Earlier this year, Quinn expressed interest in piano lessons, but now, was not so sure. I asked him if he could promise me he would try it. Since he is seven, I asked if he would try it for seven weeks. He agreed.

Quinn’s lesson was first – in 20 minutes he and Chella did 15 pages of the first book and he is thrilled. Tara and Chella work on the Forrest Gump ‘Feather Theme’ that you like so much. At the end of the lesson T&Q start to argue – who is going to get to practice first when we get home! I think Quinn is sold on the piano lessons.

As we leave Chella’s, Sheena (Chella’s daughter), brings out two T-shirts. They are special shirts. A blue baseball one for Quinn with the word ‘Endurance’ on the front and the number 29 on the back. Tara got a dark pink shirt with hearts and the word ‘Strength’ on the front and the number 29 on the back. They were very pleased.

That night I read a Dr. Seuss book that Quinn picked out – It was an excellent choice for us at this time. ‘Oh, the Places You’ll Go’. It’s a book that is good for all ages and very thought provoking as you get older. It is a must-read book.

Later at night, as I put away laundry, that had mysteriously cleaned and folded itself (thanks Marianne), I found a small polished emerald-green rock at the bottom of the basket. I though of the gratitude I felt today – and I knew just who I was going to give the rock to … YOU.

Today was a great day

Thursday, September 17, 2009

September 16 - Wishes on Rainbows

Wednesday September 16

Tara and Quinn both had vivid dreams last night … about you. The dreams were different but had the same theme. Their dream’s events lead to a way to help you get better. You are always in our conscious and unconscious thoughts.

Children have a lot of positive energy for you. Thanks to their dreams and hopes of the future – I keep going but how much longer can I keep it up? Four days of steady regression is very hard to watch.

I drop Annie off at Juanita’s so she can play with Charlie (Juanita’s dog). I tell Juanita and Bill what’s been going on between sobs. Hope is slipping from my hands. At home there is an email from Bill and Laura (runners) asking if I saw the rainbow yesterday – they said “that it is a good sign”. I sigh.

I call the day nurse, Jane at the hospital while I wait for Marianne to drive to Halifax.
“I’m so glad you called, he is having a good day. He is MRSA negative. His eyes are open and he is following instructions. The temp is down too.” “Thank God, MRSA negative and he is responsive? Wow that is great.” I said. “That’s not all when I asked him his name, he mouthed out Chris and when I asked him the kid’s names – his lips moved to say Tara and Quinn!” Gosh …Rainbow wishes really DO work!

It is strange. When I am drowning in a sea of worry and despair, all you do is mouth three words and it’s like throwing me a life preserver and saving me – three simple words saved me and projected me over the crest of the hill – I am invigorated again.

I put a cooler out by the front door for the ‘food fairies’. The ladies (and some gentlemen) at St. Andrew’s Church (where Chris works) have been supplying us with food since the beginning of this story. Every day an entire dinner arrives along with concern, love and well wishes. Since I have been spending so much time at the hosptial – the fairies find it difficult to find me at home. So the idea of the ‘Food Fairy Cooler” was born. All the wonderful meals have very appreciated and at some point I want recipes – because has not been a meal yet that the children haven’t eaten! Thank you to Catherine and her crew of amazing people.

I drive to Halifax with Marianne and her Mom – we talk about … you of course – and your miracle to date and Marianne’s belief in signs. We talk about the amazing swell of support for you. I tell them about the food fairies and we decide that, for most of us, when we are unable to do much to fix a problem - we choice to feed the people most affected by the problem … Food is Love.

We also talk about stem cell therapy and the amazing advancements that researchers are accomplishing now. There are so many applications for stem cell therapy in the future – it will likely touch all our lives one way or another. Stem cell therapy can give you so much potential for your full recovery.

Your heart rate is slower now and BP is lower. You opened your eyes and squeezed my hand – you ARE home – I guess, yesterday - you just weren’t answering the door. You were too busy healing yourself inside.

There has been some twitching and tremors lately. If they continue Dr Walling has ordered an EEG to see if the tremors are actually seizures.

You are awake at lunch when we move you – we held hands but no writing today. I talked – I said be strong and we love you and that you will be Ok with some time and effort … Stay strong.

I finish yesterday’s daily journal and I sleep with you. I want to crawl into bed with you and hold you in my arms. Instead, I rest my head on your bed and think about all the talented doctors and nurses that have worked on you – and how much we owe them.

Despite today’s improvement, your cough is still very juicy. I suction your tracheotomy tube regularly. I smile while I do it. With any bad cold, you would have a nasty cough that would wear you out. More then once you would say, “I wish someone could suck that crap up”. (Referring to the material in your upper airway). This is an ironic twist. Your ‘suction fantasy’ is coming true. This fantasy about suction is not likely a fantasy shared by most men.

At the school, Craig, a guidance counselor, met with Tara a few days ago. Tara taught him a card game. He beat at the game but also established some lines of communication for her. Today he played cards with Quinn, Quinn beat him and they had a good talk. I made some phone calls and made arrangements for Tara and Quinn for after school tomorrow.

What a wonderful feeling knowing that the community – both school and in general are helping me support Tara and Quinn emotionally as well as physically – they are a safety net - I’m really not alone.

I had a good talk with Assieh who has the strength to support me with positive thoughts while still having her own worries. Like rich cream – people with strong personal character raise to the top … I think there is a lot of cream in Truro.

What did I learn today? I learned that:
A child’s belief in magic can be stronger then medicine.
Food is Love.
Suction fantasies can come true ... for Chris.
A village can support a child emotionally and physically.
Friends are everywhere.
Today … I learned LOTS.