February 23, 1998 is a day etched forever in my mother-heart. On February 22 everything was fine and on February 23, everything changed.
Kaetlyn was 7. She has always been the hardest to put to bed. I attribute that to potty training too close to the time of switching from crib to bed.... anyways, she has always got up 2 or 3 or 4 times after being put to bed. And she was doing it again. Up in the night. Has to go pee. Thirsty. On and on. "Go to bed, Kaetlyn!" "Stop getting up" "Do this before you go to bed!" But on and on it went. And as the nights went on, it got more and more frequent. Up to go pee. Up to get a drink. Until it was happening at 15 minute intervals.
Finally that warning light in my mother-brain went off. I knew what it was. My daughter had diabetes. That night I stole into her room and smelled her breath. It had that smell - that acetate smell that diabetics get as their body consumes their muscle tissue as it starves to death. I hardly slept that night.
I knew what to do after living with her father who has diabetes for 7 years. I was waiting on my Dr's doorstep on February 23 for a lab requisition. We went and had her blood taken. My desperate mind making up tons of excuses. "
It could be a kidney infection. Infections make your breath smell funny... I'm just making this up... always a drama with me... everything is fine..." She played hookey from school and we hung out, bought old valentine's chocolate at Zellers and ate it.
She had a pottery class at the Art Centre. While she was there, the Dr's office called. Those dreaded words. She has diabetes. Take her to the hospital at once. There was absolutely no doubt. It was an absolute. We picked her up from her art class and her and I spent the night at the hospital. She spent more than a week there as they brought her blood sugars under control and figured out her insulin levels.
After that first night in the hospital, I crazily went to work where I was facilitating an employment class. Duh! Like I was any good to them! Finally after work, I went home. I can remember sitting on the bathroom floor and crying and crying and crying. I just kept thinking of my perfect baby girl. And all the things I had done to make sure she didn't get diabetes. I wept for the loss. I wept for what she was going to have to deal with - a disease we have yet to find a cure for.
That was 8 years ago. We've learned alot about diabetes in the meantime. I have struggled and she has struggled. Her teenage years have been especially difficult. And one of the very unfair things is that even in Canada where we are so fortunate to have medical services available to everyone, there are very real limits. Like we have to buy her diabetic supplies - things that she needs to live. This comes out of our family's pocket. Of course there is Pharmacare but that only kicks in after you have spent a certain amount. There have been times when I have had to choose between food or insulin or testing strips. I don't think that is right. I think diabetic supplies ought to be free. If I didn't buy them for her, she would die. And then there is the matter of treatment. The only kind of treatment that is covered by pharmacare is the most basic. Not the best. So appliances like an insulin pump that allow her to have much better control over her diabetes and the best chance for avoiding complications like blindness, kidney failure, neuropathy and early death, this I have to pay for myself. They cost $7000 and they last 2 - 5 years. The alternative to pumps is injections through needles. People with diabetes have to continually rotate their injection spots as scar tissue builds up. And for teen agers, finding a good insulin mix is very difficult as their adjusting hormones mean that their bodies metabolize insulin much quicker. And long acting insulins are undependable.
With my mother-heart finagling, I managed to get her an insulin pump for free - technically a loaner from a most awesome factory rep. He is gone and the insulin pump is on its very last legs. Probably it is toast already. We haven't been able to get it serviced because it was a loaner and the rep was transferred before it needed fixing. She needs a new pump. We need to raise $7000. We have a goal to have it well under way by April 26 when her next appointment is at the diabetes clinic. She will have to get off this pump and back onto injections.
Any ideas on ways to raise money? All the sales of my hats (www.hippiehats01.blogspot.com) will be going to our pump fund. Kaetlyn may have some bags that she has sewn available there soon, too. And I will be updating with some spring cotton hats soon as well. We are planning on approaching some charity groups for help but we will still have to raise a significant amount ourself, even if they help us. So.... ideas? We'd love to hear some!
I spent the entire day outside yesterday. Rhiannon and I started the day with another hike down to Cosen's Bay with some friends. Although it wasn't really sunny, it was a beautiful day. This was supposed to be a picture of Rhiannon running through the water (she wore her bathing suit this time) but by the time I clicked, she had run.... Its a nice picture of Cosen's Bay anways.....
