Siblings

When you watch Sáin and Aidan together it’s pretty obvious they love each other. Sure they fight and compete -- don’t all siblings? But there’s something special between those two. It’s been there since the beginning.

When I was on bed rest before Aidan was born, Sáin and I would watch Blue’s Clues together. She would get down near my stomach and give a play-by-play of what was happening on the show. “Aidan can’t see what’s going on yet and I don’t want him to feel left out.”

Last night I began to realize just how much Sáin loves her little brother. Sáin and I were playing a math game (part of her homework) and Aidan was playing on the computer. I must’ve looked up at Aidan with a worried look because Sáin stopped the game and said, “You’re worried about him, aren’t you?” I admitted to her that I was. Aidan’s been sick since Thanksgiving. I never told Sáin I was really worried because she got the flu the November before diagnosis and our doctors and researchers figure that is what triggered the autoimmune response that caused Sáin’s diabetes but she must’ve been thinking the same thing. She said to me, “I would give up my cure if it guaranteed Aidan would never get this disease.”

It was one of those moments where you have to choke back the tears and all you want to do is hug your kid. As a mom it made me proud; as a little sister it made me sad. My sister is hardly a sister to me anymore. I hope Sáin and Aidan have this forever.

(Aidan has been having a lot of “events” that seem to parallel the time leading up to Sáin’s diagnosis. I’m hoping I’m just being paranoid but with Aidan’s genetic predisposition to the disease I get worried about the similarities.)

Letter to the Editor

I was asked by JDRF to write a response to a rather offensive article in The Stranger regarding Gingerbread Village. Here's my response:

Dear Editor,

I would be the first to agree with any article cynically reviewing this time of year -- the holidays tend to get a little saccharine for my tastes. However, in your recent article Constructing Christmas, the authors didn't seem to (or didn't want to) understand what the Gingerbread Village is actually about.

Yes, the architecture firms take the building of these displays very seriously and yes, there was a big opening ceremony complete with Miss Washington, but the Gingerbread Village is not about them. As was mentioned only briefly, and in a rather sarcastic manner, Gingerbread Village is a fundraiser for the Northwest chapter of the Juvenile Diabetes Research Foundation. All donations and proceeds from the cookie sales go directly to funding research to cure juvenile (type 1) diabetes.

Despite the authors' assumptions that diabetics are "naughty diseased children," you would be hard put to find someone whose life is not touched in some way by this disease. Type 1 diabetes is an autoimmune disease and, much like other autoimmune diseases, is very prevalent in Washington State. It usually strikes in childhood or young adulthood and results in a drastic reduction in quality of life and shortens the average life span. My daughter was diagnosed at age 5. She requires multiple injections of insulin daily to survive and faces the risk of serious complications. Diabetes complications (everything from kidney and heart disease to blindness and amputation) come on quickly and can strike a seemingly healthy person even at a young age.

As I said before, I have no issues with cynicism. I often find the pageantry associated with Christmas to be empty and commercial but, as the authors failed to point out, Gingerbread Village is something more. So go down, check it out for yourself and while you're there drop a dollar or two in the donation box and next time you're getting a piercing or tattoo check to see if that little girl there with her daddy is wearing an insulin pump on her hip. You might've just helped save her life.

Thank you,

Angie Ravenscroft

Scary Moments

Part of the Promise to Remember Me campaign we're involved with through JDRF is writing a blurb about life with diabetes so our government officials can see why funding research is so important. I thought I would share mine...

I thought about telling you the story of Sáin’s diagnosis (diagnosed at age 5, now age 8.) I could recount every detail of that day. And I thought about telling you our struggles as a single mom with a diabetic child trying to make ends meet. Instead I will give you this; it is excerpt from my journal. This ranked up there as one of the scariest moments in the diabetes roller coaster ride.

Monday, 08 October 2007

I startled awake and looked at my watch -- 5:47 am. The panic set in. I haven't slept through the night in years. Where was my cell phone? (I use it for my alarm) I find it underneath my back -- it's been vibrating since 1:30 am. Why didn't I wake up? Of all the nights to sleep through an early morning blood sugar test this was not it. I frantically go unlock to front door since my dad will be there in 3 minutes, run to the bathroom to put my contacts in (if things are bad I need to be able to see) and grab the supplies outside Sáin and Aidan's bedroom door. I freeze at the door. Last night I upped Sáin's Lantus (long acting insulin) and it peaks about 6 hours after injection and gave Sáin a corrective dose of Humalog (short acting insulin) at 8:45 pm (it peaks 3 hours after injection.) Her 11:45 pm numbers were good but it's the early morning ones that scare me. Sáin's been known to drop into the 30's when tweaking her dosages and that is on the verge of a coma. If she dropped that low and then experienced the "dawn phenomenon" (biologically most people's blood sugars drop just before dawn) she could be dead. A lot of moms are scared to open the door because of a mess or what their kids might've done, I was scared because I might've killed my daughter. I open the door and walk past Aidan. He sleeps fitfully and at that moment I would've given anything for Sáin to be a fitful sleeper too but she was still and quiet. I grab her cold hand and poke. As I was about to get the blood on the test strip she pulled it away. I've never been so happy to fight her on an early morning test. She was low (43) but she was okay. She drank her juice box in her sleep as only a diabetic kid can and her blood sugars were back up in range. I kissed her forehead and told her I loved her. "I love you, too, mom" were the best words I've ever heard!

(Sáin went to school that day never knowing the fears I had that morning. I went to work, sat through meetings, and did my job that pays for this disease and all its endless cost but never shook that fear.)

Why "more than a statistic"?

The one thing I’ve been able to do since 05 April 2005 (the date of Sáin’s diagnosis) is rattle off stats about diabetes. I could tell you that every 10 seconds someone dies of diabetes complications, that everyday more than 40 kids in the US are diagnosed with this disease and that 80% of type 1 diabetics experience some diabetic retinopathy within 10 years of diagnosis.

In many ways the statistics are a shield I hide behind. Statistics can be powerful but they are anonymous. A stat can never tell you what it’s like to be a kid with a chronic disease or what it’s like seeing your child lying scared in the emergency room with IVs covering both her 5 year old arms.

Diabetes forced me to move beyond the statistics and to recognize the face behind them. Sáin is not just a stat, she is my daughter. She’s a big sister, a second grader, a proud Canadian and a math wiz. Sáin is so much more than a statistic and I hope, through this blog, you can see a little clearer what life is like for an 8 year old (and her family) living with Type 1 Diabetes.

Here are a few statistics that really do matter to us… Type 1 Diabetes is an autoimmune disease. Sáin did nothing to deserve it and, as of yet, there is no cure. Aidan and I both have the gene that has been linked to diabetes so it could strike either of us at any time (or not at all.) Insulin is not a cure; it’s merely life support.

In less than 1000 days, Sáin has had:

over 8500 finger pokes

74 vials of insulin

over 4250 injections

12 visits to the endocrinology clinic at Children’s Hospital

33 days missed from school

4 social work appointments

6 nutrition classes

6 complete lab work-ups

8 research appointments

2 ER visits

2 mandatory flu shots

1 pneumonia shot

3 beat the bridge walks

2 retinal scans

1 test for nerve damage in her feet

(To see more of our life check out our Flickr page. I will be adding more pictures soon.)