Sunday, February 21, 2010

Wednesday February 17 – Planning for the Weekend

My early morning dream was odd. I sensed that was to take place in the future. We were out for a meal in a restaurant. It must have been a special occasion because, in normal life, we rarely go out to eat. The four of us were there, so were Maddie, Farley, Erik and Neeson. The children were all playing and having a good time and you were playing with them. The children were giggling and everyone was having a good time. It was obvious to anyone witnessing this that the children saw you in your ‘funny parent’ role.

The best part of the dream was that I could see that slowly the children were convincing you that you are a parent ... a funny caring loving parent. A Daddy and an uncle. I dreamt that I wrote about this in the journal and someone commented back in the blog about my observations. “Of course the children will see Chris as a parent. They don't see disabilities they see a role model.”

It’s funny how the subconscious mind works.

I got a phone call returned from a stair lift company in Ontario. It sounds like a do-able idea and a much more attractive idea then moving or doing extensive renovations to the house where we may never recover the expense. If at some point, I hope that you will outgrow the need of a stair lift and we could sell it.

While I appreciate the OT’s safety concerns, I am very aware that ‘aids’ can also create a dependency and not facilitate recovery. While ‘aids’ enables a disability in a positive way they also enable in a negative way.

If true independence is not part of your immediate future and you will need assistance for most things then why not use the assistance to it’s maximum potential for recovery.
‘Home care’ doesn’t have to have to be defined by VON or other agencies. ‘Home care’ can be defined by us. It can be integrated with PT and OT and all the other T’s (therapies).

After the phone call, I try to do things about the house one handed. It’s hard and takes about three times longer to do anything. I expect there is a learning curve and one gets more efficient at things with time. OT and home care will have to be integrated.

It’s the first official full snow day of the year. Usually a time to rejoice when you are 7 and 9 years old. The children were excited and both woke up early! I am always amazed that their early wake up days is always on weekends and now apparently on snow days. Why is that?

Quinn wanted to drive to Halifax to visit you. I started work at I pm today so I had the morning free to do things, At least that’s what I planned until there was no school.
Instead we stayed home and played with some of the undiscovered Christmas things that Tara and Quinn got. That lead to sibling spats and then me yelling and getting crankier by the minute. By the time I got to work, I was in a real huff. Joye could tell right away that I was having a bad day. Apparently I’m a lousy actress. I hate that I lose my cool and vent my frustration and feelings on the children. I want to make this time easy on them not harder.

I caught my breath – it’s just a bad moment not a bad day or a bad week or a bad month or … No, it’s just a bad moment. I say to myself. Children are too resilient to be damaged by a bad moment … I hope.

During our nightly phone call, you talk with Quinn. He tells you about his favorite things in gymnastics. He has a meet coming up soon and he is pleased that he is starting to figure out the pommel horse. You talk to him about the things you are figuring out … mastering transfers and walking. Quinn’s response to this news is an ‘over the phone ear tug’. He misses you.

Tara gets on the phone with you. As she talks, she paces around and around in a tight circle. This is something you would do when you talked on the phone. You tell Tara about your new leg brace. They cast your leg to get the shape right. You asked for it to be turquoise … Tara and your Mum’s favorite colour with a 29 written on it. The OT thinks that she can grant your wish. I can tell Tara likes this idea by watching her. She starts to talk faster and faster. The faster Tara talks, the faster she walks in the circle.

I tell you about the research that I did on the stair lift. You are a little shocked, at first, with the idea and possible costs. In the long run, if it is a safe option, the cost would be considerably less then moving or renovations.

I also mention to you about the idea for a weekend with us at Lenore’s apartment in Halifax. Her apartment building is wheelchair friendly. The only area of difficulty would be the bathroom, but I think that there will be enough space for your chair to fit and me to help you transfer to the toilet. If we can’t do it, that’s OK, then we will just take you back to the NSRC for ‘real’ toilet business, everything else can be done with a carefully positioned bottle. This is a skill that you have mastered over the past four months.

You said that you would ask the OT and PT about the weekend. I said that I would email the OT. Between the two of us we will make this happen. The weekend after this weekend, I’m on call and possibly won’t see you until the next Monday. I want to make this weekend count.

1 comment:

  1. Hi Gwen...Gordie had the same as Chris...only his was the right side...he had the leg brace , 4 point cane and the wheelchair $$$...where we lived we had stairs....outside and inside.......they (NSRC) worked with Gordie on going up stairs...they told me that climbing stairs is easier than walking...I had to put railings on both sides of the stairs....he did first it took longer..but he did get it by himself.....swinging his hip to move his right leg....I had the hand rails put in the bathrooms where the OT told me too......but had to move them after Gordie came a place where he found them to work took awhile ...but everything worked out of the hardest thing "NOT" to do was Not to do everything for Gordie...or he wouldn't be able to do for himself and we know how important independance is...every body needs're doing great Gwen..I'm glad you have such a good support group at work....I did & still have ..everything always manages to fall in place...

    Love Margo