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.