Thursday, May 6, 2010

Saturday April 24 – What are we going to be? Dominos or Pillars?

My lazy Saturday that I have been dreaming of for a long time, started out great. I had a shower and sat on the edge of the bed, contemplating whether to trim my toenails or not. Something that I have never ever given much thought to in the past, even before your stroke, but for some reason it seemed important to think about it today.

Today, the first day of being together again officially as a family and I’m thinking about my toe nails. Well the moment passed quickly, The phone rang. Whoever called didn’t stay on the phone to get an answer but Tara and I both picked up the phone to take the call. The result was that we were talking to each other on the phone … Rather odd since she was in the next room! She reminds me of all the things she has to do. There’s the birthday present and party as well as the choir practice this afternoon and the performance tonight. I sigh and cut the nails short as she rambles on. Then you pick up another phone and butt into the conversation. “Don’t forget I want to visit Donald, and go to the bank and the tattoo place. We need things for the fish and we have to registrat Quinn for baseball.”

The only thing I wanted to do today was to get groceries. We didn’t have time to do this.

It was a very busy day. I can’t believe we got through it. We very nearly didn’t. I started the morning by forgetting your wheelchair. When we registered Quinn for baseball, you had to walk into the building. Although it had a ramp, it wasn’t a well-designed ramp and the access to the ramp was not ‘mobility-impaired friendly’.

How crazy is that? A ramp built for the mobility impaired that the mobility impaired can’t get to. I was angry at the stupidity and wondered how often we would come across this situation.

We dropped Tara for the birthday party and Quinn at a friend’s place. When we got to Donald’s we realized that your wheelchair was broken. Your brand new wheelchair. The chair that we were forced to rent because the paperwork wasn’t done in time to get the chair that was ordered for you. Even though the staff at the NSRC had 14 weeks to make this happen. We still were forced to rent a chair.

My guess was that we had to wait for the wheels to be harvested off the wheel tree before the chair could be made. I was angry about this too. When I discovered this yesterday, I shoveled the anger under some other thoughts and tried to forget about it.

It didn’t work. When the chair broke, I couldn’t suppress my anger any more. It flew out of me. The anger that I’ve been keeping stuffed in all the corners of my mind comes springing out of my mouth.

You did what you usually do when I get stressed, you tried to make a joke of it and lighten me up. It usually works … but not today. Today, I had too much anger and even your best attempts to curtail it would have failed.

I took the chair to two local drug stores on town that deal with wheelchairs. I had hoped that someone there could fix it. Of course, it’s Saturday, the person who could fix the chair wasn’t there on a Saturdays. I tried calling the company in Halifax where the chair came from. They were closed. I left a searing hot message about the “piece of s… contraption you are renting us that you call a wheelchair”. I was still angry.

Thankfully, the lady who worked at the local Lawton’s drugstore and homecare center, has a marvelous dog who is a patient of mine. When I saw her familiar face, I tried to explain the problem and finished by bursting into tears with frustration. She jumped into action and the next thing I knew was she dug out a wheelchair, just your size, that we could use over the weekend … at no cost.

My outburst of insuppressible anger affected you. I think you felt like you failed me by not being able to rally me out of my strong emotions, like you could always did in the past. You thought that you had lost another talent because of your stroke.

The whole chair ordeal ate up the afternoon. By the time we got to the tattoo place, there wasn’t enough time to get the tattoo. You were angry now too. Angry and sad and disappointed and you felt like you weren’t important enough to get the tattoo. Even thought I explained that the broken chair was the reason for the lack of time, you were convinced that I felt it was a low priority to me.

The fact that I never did get groceries today or visit Mum, who was moved to the Colchester Hospital yesterday, my only priorities, didn’t pacify you at all.

You wanted to smoke. A ‘mulligan’ you said. You explained it by saying that you never choose not to smoke. If you smoke now … for a day … then you can choose to stop tomorrow and the choice would be yours to claim. The logic appealed to me. I swallowed hard and against my better judgement, I took you outside. I half expected you to consider the idea and then back off and keep the streak. But you didn’t, you smoked. I caught a glimpse of you smoking. A very foreign gesture to me. I had never seen you smoke before and I was struck by the impression the image left me.

The cigarette didn’t help your mood. By bedtime you were sullen and not talking. You wanted to go to get early. You don’t want to sleep with me. You want to sleep in the hospital bed in the family room. I get you into bed. You refuse to take your bedtime medications. You want to force me to accept your choice about medications.

You want desperately to control something … anything you choose to smoke. For the first time I see you with a cigarette in your hand and you sit out side smoking. I felt physically ill thinking of the image.

Earlier this week before you came home, I talked to the children about the strength that a family has as a unit. I tell them about dominos and how when dominos are stood on their ends side by side. They are only as steady as their weakest member. “When one falls so do the rest.” I said. “What we have to be as a family is to be pillars that hold up the roof.” I point to a house as we drive by it with pillars supporting the roof eave. “Pillars hold up the roof. If one goes the remaining ones support the roof and if town go, the remaining pillars continue to hold up the roof.”

“When Daddy gets home it will be great and bad moments. During the bad moments, it will be hard to us to hold up the roof. The family. But we will be pillars because that’s the only way we can survive. Survive with the strength and support from each other.”
At the time of my little talk, I wasn’t convinced that the children really understood what I was trying to say.

I was wrong. Tonight, as I tuck Tara into bed. She is saddened with the news that you refused your medications. She hung her head in her hands as she sat at the edge of the bed. “We are dominos.” She repeated sadly. “We are all dominos.”

If this is going to be how the first day goes, how am I ever going to get through the rest of our lives? I pray that tomorrow will be a better day.

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