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.

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