Tuesday, January 29, 2008

Insulin Pumps, Senators and Hockey (Oh My!)

Last Thursday Sáin started her insulin pump. It is great so far and I know it will be even better once we get the numbers all worked out. I had noble ideas of being healthy and well rested for the pump start. Funny how things don’t work out the way you plan. The midnight and 3 am tests would be more palatable if I could just fall asleep in between them. I tend to get to bed around 11, wake up at midnight, get to sleep again by 1:30, up at 3 and I’m lucky if I get back to sleep before I get up at 4:30 for work. I can’t say it’s ideal but you do what you have to do. I find it strangely amusing when people tell me how tired they are – maybe I’m too tired to explain what real exhaustion is or maybe it’s just not important. Truly, all that’s important to me is keeping Sáin and Aidan happy and healthy.

About a week before Sáin’s pump start we got to meet with Senator Murray and the lead researchers at the Pacific Northwest Research Institute. I learned a number of things that day. The research is amazing and Senator Murray is very supportive of diabetes research funding. (She has a niece who is type 1 so she sees the day-to-day impact this disease has.) The thing that really stuck with me that day is that, even three years after diagnosis, I can’t tell our story without crying. I don’t like crying in front of strangers but the emotions are so raw. I would never wish this disease on any family but I often wish some of the other parents could know what it feels like to be told your 5 year old daughter was 12 hours from permanent brain damage or death. It puts a lot in perspective.

On to hockey... my dad once told me that, if I was being honest, I would write hockey as my religion on official forms. Hockey has gotten me through more tough times than I could name. It’s been my therapy and my distraction for as long as I can remember. I don’t know if the hockey gods knew I needed it or if Comcast just decided to do me a favor but for one week I have the NHL Center Ice free preview. You can write my feeling this event blog-worthy off to my sleep deprivation but if you really know me you will realize how much seeing the Leafs play (even if they lost) on a Tuesday night meant to me.
(The picture is of Sain and Aidan with Rufus, the JDRF bear, at the Seattle JDRF Outreach event on Sunday -- it was a lot of fun!)

Monday, January 21, 2008

There's so much...

There's so much I should blog about right now -- so much has happened, both good and bad in the last couple weeks. Sáin met with Senator Murray and researchers at PNRI; I should write pages on that. Sáin got her pump and we go in on Thursday for our pump start; that is such a huge deal for her. Beat the Bridge is coming up so quickly and Sáin’s First Communion is even sooner but all I can think about is 119 days until our trip back to Toronto. I will write about the other events soon – they are important. Right now I just miss breakfast at the Sunset Grill, I miss my Leafs, and I miss writing while sitting by Lake Ontario.

Monday, January 7, 2008

Letter to Diabetes

Some days this disease is easier to handle than others... today I am sick of it. Sain's blood sugars have been high all weekend and I couldn't send her to school today because I can't get her numbers under 400. (Luckily she doesn't have any ketones!) I am tired, emotionally and physically but mostly I am tired of this stupid disease. Therapists have you write letters to the people causing you pain so I thought I would write a quick note to diabetes:

Dear Diabetes,

I am tired of you. You invaded my daughter’s life when she was only 5 and turned her world upside-down. She did nothing to deserve you and now she hardly remembers life before you. You robbed her of her innocence and took away a portion of her carefree sparkle. I will never forgive you. They can tell me all they want that forgiveness is essential but you don’t deserve it. You made her the “diabetic kid” and you made her feel different. Every time anyone says something about food people turn and look at her – that is because of you. Because of you she now knows about heart disease, kidney disease and amputations. No 8 year old should have to know about such things. She shouldn’t watch the presidential debates to find out healthcare policies, she should be watching SpongeBob. Because of you my daughter knows what life expectancy is and that hers is 15 years shorter than her classmates. That is a cruel thing to do to a kid! You didn’t just alter my daughter’s life, you made my son scared of his own genetic history. I will never forgive you for that either. You made me “that” mom – you know the one. The one people point out when she picks up her kids, the one who demands to know what snacks people are bringing, the lady who yells at Medco and the person who has Premera on speed dial. When people want to know about Children’s Hospital they come to me – that’s all because of you. Because of you I haven’t really slept in nearly three years and I’m exhausted!

Good-hearted people tell me that you made my daughter stronger and more caring. She was strong and caring long before you came into our lives. We didn’t need you for that. Haven’t you caused enough pain for my daughter? Why can’t you just go away?