Wednesday, February 28, 2007

Something is missing here...

Today is a frustrating day.

Poor Douglas sits downstairs, watching TV. It's not what he wants to do, it's not what we want him to do, and it's not what is best for him. But it's what is happening.

Why?

Because we are dealing with his "administrative" side. We've got more medical opinions and diagnosis than I knew existed, and with them are suggested treatment programmes. To help us with the treatment programmes, there is funding. To get the funding, you have to do the paperwork. It's ongoing. So, instead of teaching and playing with Doug, Allison sits in my office filling out forms. Once those are complete - we get to track down, interview, and book various therapists for him. At least we could - if someone could point us to a good one! It feels so wrong to just pick a name at random from a phone book. But to find a good one, requires research, and THAT requires more time. And Douglas sits in front of the TV.

As a result of all the extra help that he needs/gets, he gets to spend less time with us - because we need to "manage" it all. We want to find the best possible help for him - but at what cost? Where do we draw the line between finding the best help, and saving enough time and energy for our family life?

Make it all stop.

Monday, February 19, 2007

Thought for Today

Today's thought to keep me sane:

No matter how many labels are attached, and how thick the binder of diagnosis gets, the little boy in the room down the hall remains unchanged. He is my son, created in the image of God, and entrusted to me to love.

The more things change, the more they stay the same

I thought for sure I had blogged about my battle with the squirrels last year - but I couldn't find it. It was a good story. Oh well.

It looks like I'll get to make another one. I hear the pitter-patter of little feet again the other morning. Very little feet. Above my head. I've got a squirrel (or maybe more?) in my attic again. I thought I had done a thorough job after the last eviction of screwing closed all of the possible entry points. I guess I missed one.

On the plus side, it doesn't really seem to be all that big a deal anymore. I guess if you have enough troubles in life, you start grading them on the curve. This squirrel doesn't even rate a C- (yet).

At least I've already got the ladder inside (been painting again).

Reno update:
- hole made in ceiling by plumber - repaired and re-stippled (painting required)
- paint applied
- counter installation booked for this week (need to rip out the old)
- new stove repair booked for this week

To Do:
- prime and paint dining room ceiling
- paint baseboards and crown moulding
- drywall bathroom
- paint bathroom
- repair subfloor (bathroom)
- replace flooring (bathroom)
- install shower door

Hmmm. Not a lot of this is on topic today. That happens when you don't get much sleep. Never start "just one coat of paint" at 10:00pm. (unless, of course, you LIKE finishing at 3:30am...)

Wednesday, February 14, 2007

Kids are so perceptive - and accepting!

So far, in Doug's preschool, there has only been one kid who has asked about what is wrong with Doug. One day, on the playground, Emily came up to Allison and asked "What's wrong with Doug?" She asked it in the direct, yet completely innocent way that only kids can. "His muscles don't work the same way that yours and mine do" Allison responded. And before Allison could prepare to answer the expected battery of "why" questions, Emily simply said "Ok" and wandered off.

Kids are so accepting. When do we grow out of this? It's no wonder why Jesus loved kids so much, and why he said "the kingdom of God belongs to such as these" (Luke 18:16) They are so accepting of people for who they are.

This week, in another conversation at preschool, some more light was shed on the topic. Emily's uncle (who lives with them) also has Muscular Dystrophy. The explaination Allison gave her was the same one she heard from her parents about her uncle.

It's a small world, isn't it?

Wednesday, February 7, 2007

Needed - One Administrative Assistant

I think I've figured out what type of help is the most needed for families dealing with long term disabilities. An Admin Assistant.

The amount of paperwork that is generated by each appointment is remarkable. They've all got their own forms, and they all ask almost the same questions. Then there is the scheduling.

Working all of these different appointments is a scheduling nightmare. I think this might be a key contributor to many of the stressors we parents of disabled children face. We want the absolute best for our kids - so the schedule is important. But I'm booking things into May and June on my calendar right now - and Outlook is already advising me that I have double booked myself twice! That just boggles the mind. And none of it can be simple, everything has to be booked around work, and school, and the occasional social appointment that sneaks in. (I can see these being eliminated soon due to the amount of energy it takes to make happen) We spent a day and a half getting ready for, and booking the outcomes from, our one day at Children's Hospital yesterday.

To give you an example of the types of things we're up against: Doug is supposed to see the paediatrician every 6 months, and Children's Hospital every 6 months. They are supposed to be offset, so he's seeing one of them every 3 months. The paediatrician doesn't book appointments 6 months in advance, he only does 3. So, today we called for an appointment. Since our last appointment was about 7 months ago, our referral has expired - meaning we need to book another appointment with our family doctor to get a referral to be booked into our regular 6 month cycle.

Anyhow - if there's anyone out there listening from BC Medical or the CCRA (or whatever the heck the tax people are called now) - there's got to be some sort of admin assistant allowance for families for this. 'Cause I don't think I can manage this on my own.

Come to Me, all who are weak and heavy-laden, and I will give you rest.

Mathew 11:28 is currently on my mind.

I am weak. I am heavy-laden. I need rest.

I just don't seem to have time or presence of mind to do the "Come to Me" part. I'm caught up in the struggle to keep myself afloat in the stormy seas - thrashing with all my might to catch my next breath. I'm so caught up, in fact, that I am ignoring the life preserver that God is holding out for me to grab onto. I need to snap out of this. For my sake, for my family's sake, and for Doug's sake.