Merry Christmas!

So much has happened in the last couple weeks:

Sáin completed her pump saline trial on Saturday. She loved the pump and can’t wait until she gets her own pump in January. I wish she didn’t have to wait until January (she was hoping for a pump in her stocking) but I need to wait for my 2008 healthcare spending account money to become available. Pumps aren’t cheap! For the first time I am putting the highest contribution possible into my spending account. The tax savings are nice but I’m not really looking forward to seeing my first paycheck with the bigger deduction.

About a week and a half ago Sáin, Aidan and I went to see the Sound of Music. I was expecting your typical school production but I was thoroughly impressed by the performance. (Any production of the Sound of Music that can keep a 4 year old boy’s attention for 3 hours has to be good!) A couple things came from seeing the musical – Sáin would now like to try out for next year’s play, I discovered Aidan can yodel (who knew) and every shopping trip is now a musical. Sáin usually has the lead, Aidan is the director and I’m either the extras or the audience depending on what is needed. So far we have performed The Sound of Costco, The Sound of Safeway and have done a couple performances of The Sound of Target. I have to say, singing and dancing through the stores is a lot more fun than just shopping!

Christmas! The kids made out like bandits this year and we haven’t even gone to Grandma and Grandpa’s house yet. I think Sáin summed it up best last Sunday when we were driving home from my Aunt and Uncle’s house when she said, “I feel spoiled rotten!”

This year the kids learned that Christmas isn’t all about getting presents. Sáin’s school does monthly collections for the St. Vincent de Paul food bank and in December most classes do a clothes and toy drive. I wanted Sáin to see where the donations go so we volunteered to sort gifts and deliver food and gifts to a family that was unable to get to the Parish Hall. We spent a Thursday evening sorting gifts and delivered food and Christmas gifts to a mom and her 3 children the next Sunday. It was an eye opening experience especially for Sáin. The family we delivered to was so grateful and humble. You could tell it was very hard for the mom to ask for help. On our drive home I realized Sáin understood the lesson. “Compared to my classmates we’re poor but compared to the poor we are really rich.”

I will leave you with Aidan’s thoughts on Christmas – four is a great age:
- Next year Aidan hopes Jesus has his birthday party at Pump it Up rather than Christmas Mass. It would be way more fun.
- Aidan let me know that Santa is actually an angel who got bored in heaven because there weren’t enough toys. That’s why he can deliver toys so quickly and get in your house so easily. (I asked him if the elves were angels too… “Don’t be silly Mom, their just elves.”)
- Aidan is convinced Father Gary helps Santa somehow. He’s not too sure what role Father Gary plays but that’s why we always see him before church on Christmas Eve but then he has to go.

I hope you all have a wonderful Christmas!

Lighter Side of Diabetes

Sometimes all you can do is laugh at this disease. Here are a few of our lighter moments:

• When you ask Sáin how much food she wants she responds in carbs. (I asked her how many Nutter Butters she wanted in her lunch this morning and she responded “about 20 grams”)
• No one in our family says “I’m hungry” it’s always “I’m low”
• The other day I told Aidan he could get a candy while we were at Rite Aid. He ran back to the pharmacy and grabbed Glucose Tabs
• I learned first hand that Washington State Patrol is very understanding when you open your glove box to get your registration and the glove box is full of used syringes. (KIA of Renton is a little less understanding and makes you clean the syringes out of your car before they will work on it.)
• Awhile ago I had to give Sáin a corrective shot during church. It got some strange looks but that wasn’t the best part. When I got up to the front of the line for communion I noticed I still had the syringe in my hand. The look on the Eucharistic Minister’s face was priceless.
• Sáin is preparing for her first communion and she and Aidan have been debating whether or not Jesus is a “free food.”
• When I ask Sáin how her day was she starts rattling off her blood sugar numbers.
• When the nurse went to give Sáin her Chicken Pox vaccine booster this fall Sáin tried to grab the syringe from her. Sáin was a bit surprised that she did have to give herself her own shot.
• There’s nothing quite like the looks you get when you ask your 8 year old if they are high while you are out in public.
• Strangest place we’ve done a blood sugar test – in the middle of the Hannah Montana concert while Sáin was dancing and the lights were flashing. Even though Sáin felt low she wouldn’t stop dancing.
• Strangest place we’ve done an injection – when we were next in line at the US-Canada border. The Canadian agents were very understanding and even expedited our trip through customs.

Insulin Pump

We have our first insulin pump class today! Sáin already picked out which she wants; we will be going with the Medtronic Paradigm. (Sáin will be getting the crayon "skin" to make it more personal.) The insulin pump is not perfect but it’s the best treatment available. Eventually I hope she goes on the continuous glucose monitor for even tighter control but I’ll have to see what Premera covers on that since a 4-pack of the monitors runs over $200 and they are changed every couple days. It’s hard when you have to look at the costs of keeping your kid healthy. The insulin pump we’re looking at today is actually worth more than my car but complications scare me a lot more than the prospects of going broke or working multiple jobs to keep my kids healthy and well educated.

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.)