Beat the Bridge to Beat Diabetes 2010

Letters will be sent next week after our website is officially set up. In the meantime, here is a preview of our letter.

Dear Friends and Family

2010 is a momentous year for Sáin. It’s the year she made the school play; the year she gets officially recognized as an honor roll student; and, sadly, the year that marks two diabetes landmarks.

On April 5th Sáin will mark her fifth diagnosis anniversary. Most families I know living this disease are told a cure will come within five years. We were no exception.

The second landmark is the hardest for me. This fall, about one week after her 11th birthday, Sáin will have official lived longer with diabetes than she did without it. This means more than half her young life has been spent worrying about highs, lows, carb counts, and, most recently, complications. I don’t know too many other parents who have had their 10 year old say, “Mom, I’m really scared I have kidney disease.” Luckily she does not have kidney disease yet but too many of the early signs are there to ignore.

I say it every year, this disease is not fair, but somehow it seems even less fair now. I’ve watched Sáin struggle to be “normal” while trying to maintain her health and I’ve seen this disease rob her of the childhood innocence that she is now too old to ever get back. I watched my 5 year old cry while praying for her cure and just the other day I watched that same child still crying while praying for her cure.

2010 is also the sixth year for Team Sáin. We’ve gone through a few incarnations but at the core we’ve always been the same – One family coming together for one day a year to fight for Sáin.

Please join us for Beat the Bridge to Beat Diabetes 2010.

Help us show Sáin she’s too important not to find a cure! We truly appreciate your support!

Thank you!

Busy Times

I could easily write a post of excuses but I will leave my nearly 2 months since blogging at this -- life is busy!

Here are a few things that have been happening:

I got a job! In early September I got a great job at Clearwire (of Clear depending if you're in a 4G market.) I work with a great group of people and am doing more of what I like.

Sain and Aidan started school. Aidan is loving first grade and is really growing up this year. Sain started fourth grade and is also loving school. She's gotten a lot more independent and even did her own infusion set change at school!

I started karate. After months of telling the kids I would join I finally took the plunge. I've discovered it's very fun to hit and kick things -- and a great stress reliever!

Sain also turned 10 about a week ago. In some ways it's hard to believe she's that old but, in other ways, she seems much older.

Just before her birthday Sain had her labs done. For the first time her results were less than favorable. It was/is a hard reality check proving this disease, no matter how controlled, is serious. I'm not going into a lot of details -- I will do that at a later time -- but we've added some meds and will have labs again in December. Best case scenerio is these three months will take care of everything and we can move on.

More to come later...

Belt Testing

There are so many reasons why I am proud of Sain. She's a great kid, kind to people, does very well in school, etc. But one of the things I am most proud of is her determination -- she never lets diabetes win and won't let anyone tell her she can't do something.

When we saw Will Cross speak in July he said something that really hit home. "Find the thing you love to do that makes your diabetes secondary and keep doing it." Martial arts makes Sain's disease secondary.

Below you can see a little of my daughter's passion.

(Today was Sain's last PeeWee class -- tomorrow she begins Juniors (ages 10-14) It should be interesting since this will be the first time in her nearly 10 years that she's the youngest in a class.)

I wish...

I was smarter than this disease. I wish I could somehow know what it was doing. I wish this disease was like math and had an answer. If this, then that.

But it doesn't.

I feel like I'm at war; at war with an enemy far more intelligent, far more advanced than me. Nothing about this arrogant enemy is predictable. Nothing about it is fair or humane. There is no Geneva Convention with this disease.

After a week of amazingly good numbers and no spikes or dips even at karate camp, Sain is high. Not an "oh, she's running a bit high." No, she's HIGH and I can't get her to stay down. We've done set changes, insulin changes, everything -- 20 + units of correction alone yesterday with precious little results.

Maybe it was a mistake letting her go to a birthday party after getting sick at class; maybe I shouldn't have tried to be somewhat social while mapping out strategies of our next move in my head. But I couldn't let it win -- not yesterday. Yesterday we had to pretend to be normal.

My wish for today -- no ketones and that somehow the correction I gave Sain at 4 am is working and that when I go in the living room to check (camp outs in the living room are one of our "sick day" traditions) there are double down arrows from the sensor!

The somewhat evil, somewhat wonderful backyard

I have a love/hate relationship with our backyard. I love it's size (about 1/4 acre) for the kids to play in, I love that it is fenced, and I really love sitting back there looking at the stars (there are no street lights around.) But that is where the love ends.

I truly hate mowing this yard. It is huge, bumpy and slightly sloping. On the best day it is not a fun yard to mow and today was far from the best day.

My mower has been in the shop for the last month or so. During that time I kept the front yard mowed using my dad's electric mower but the backyard was neglected. The grass (truthfully, it's mostly weeds) was halfway up my thighs but I was determined to get it mowed today.

Four hours, three complete mowing jobs (on three different settings) and a very full yard waste bin later I am happy to say it's done!

The best part about the yard being mowed -- seeing the kids play out back again!

(The worst part is knowing it will need mowing again in a week!)

The not-so-happy Monday night post

I tried.

I tried and tried and then tried some more to write a positive blog post but I can't do it. It's not that things are horrible; I know they could be worse. It's not that good things haven't happened; I could easily blog about the kids' trip to Oregon, the JDRF banquet or karate camp this week.

That's not it. I am just tired.

I am tired of things being hard. I am tired of people being stupid. And I am tired of having to fight for every little thing in my life.

I am tired of putting on a happy face when I really want to just be pissed off and yell at the world. I am tired of people telling me things will get better -- really? After 20 + years of hearing that you stop believing it.

I am tired of people who have never really used the US medical system telling me it's fine -- what I wish for all those who think it's fine is a chronically ill child. (Sounds mean, I know, but at least I'm honest.) I'll give you a year fighting for your child's life and future then lets see how you feel.

But what I am most tired of is nothing going right. Let me clarify, things have gone right but every thing has been a battle. The big things, the small things and everything in between has involved so much work. Can't something just be easy?

Growing Up

For the last 4+ years Sain has been happy wearing her medical bracelet. I owe so much of this to N-Style ID.

When Sain was first diagnosed I searched and searched and searched for a medical bracelet that would fit Sain's style. (Sain has been choosing her own style since well before her first birthday. If you don't believe me, just ask anyone who tried to dress her as a baby -- Sain's got definite opinions and is heavily influenced by one of her favorite TV shows, Fashion Files.) The day I discovered N-Style ID was a very happy day in our household.

Sain wore the Jelly Bands for 4 years. She had everything from the solids to the stars to the polka dots. They are great because of the low price and the variety. But Sain is growing up and ready for a change.

Enter the medical heart charms. It took two charms to put all the info we needed. (Having a long last name and two chronic diseases takes up a lot of letter!)

Thank you, N-Style ID for allowing my daughter's medical jewelry to grow up with her!