Saturday, January 23, 2010

How long will it take?

Almost 7 years and 3 months - that's how long we've been playing this game. We've learned alot since we started. We've adapted. We've surprised ourselves by learning how to give insulin injections using a syringe. We've learned how to prick a finger to measure blood glucose. We've learned and understand how to use an insulin pump. I'm still learning how to get the maximum benefit from using a Continuous Glucose Monitor (CGM). We've recently learned that cold (an icepack) applied to a freshly removed pump infusion site really helps alleviate itching. We've learned that old pump infusion sites can get infected if they're itched too much (Adele's thigh is much better now thanks to the oral anti-biotics). And I've learned how to make basal insulin and meal carb ratio changes without the help of the diabetes clinic nurse or doctor.

As much as the above list is long and that things like getting up multiple times some nights to check Adele's blood sugar seem a bit easier than they did in the past, I still haven't accepted Adele's diagnosis. I'm not as bitter as I once was. I don't get as upset with non-Type 1 gamers who simply don't "get it". It's much easier to go through the motions than when we started playing, but I still can't fully accept Adele's life sentence. I think about it alot, I mean I have to whenever she is in my care. The other day she just looked at me with her big eyes and I just found her so beautiful, the most beautiful 9 year old ever, she was perfect, she was daddy's little princess... with a serious chronic disease called Type 1 Diabetes. It just kills me.

Thanks for listening...


11 comments:

Wendy said...

I agree.

Sometimes I feel like we're almost 5 years into this and I'm SUPPOSED to be "over it".

But I'm not.

It just continues to break my heart.

Wendy said...

I dont think its something we can ever get over. Deal with? yes. Get over it? No. We just all have to do our best to conquer this life changing disease! As parents we can be their best example! You guys are doing great..

Hallie said...

I feel your pain. I don't think I'll ever get over it. It might be her "normal" but it won't be mine, really. It's been 9 months- I'm still in shock. She had just turned 3. She doesn't remember the hospital. But I do. She doesn't remember life before D. But I do. Did you read that 'Welcome to Holland' post? It hurts us as parents- no matter how positive we are. These are our precious children!!! Hang in there.... You're not alone.

Meri said...

As parents we want our children to be healthy and happy. And for the most part, my boys are healthy and happy. It's just those instances when they are made to suffer...an extream high, or low. It is those times that anger me. I can only do so much to make this disease not affect my children. I go to great pains to make it no big deal. Unfortunatly, as hard as I try...I can't make their sugars do what I want 100% of the time. That makes me feel helpless, which in turn pisses me off.

I feel ya.

alix said...

So true Mike. We are only almost 4 months into it.. the worst part has been over 90% of our friends abandoning us, ones we have known for years, all the "obliviot" comments and the true lack of caring.

On a more positive note... There is a T1 food revolution coming.. I can feel it!!!!! We are living it!

Nicole said...

WOW great post.
Some days I feel O.K., no problem we can do this, we are strong and really it is not that big of deal....but reality likes to sneak it's awful head in to my peaceful, wonderful imaginary world that I like to live in most days. The reality that no matter what you do and how hard you try my child is in a battle, a battle for her life each and every day. One little mistake and game over! Wow how reality bites!!! Now back to my nice imaginary wonderful "everything will be alright" world!!

Amy said...

Awesome post! Most days I deal well with this disease...but there are just days/weeks...sometimes MONTHS where I think I'm going to lose my mind b/c nothing we do seems to work. Most of the time...I live with Nicole, though, in a little imaginary world! haha! :)

You're doing a great job D-dad!

k2 said...

I always learn so much from T1 Parents blogs.
Thanks for sharing the flip side with me
Kelly K

Christiane said...

I find that I need to keep my mind busy all the time so I don't over think about her diabetes too much. when I'm alone, like driving to and from work, it really hits me. I cry a bit then crank the radio and sing real loud. It's therapeutic.

Shamae said...

I agree somtimes I look at Syd and just think, "really? She has T1?" Sometimes I run into that brick wall again and I have to take a step back and realize that even though "doing everything right" is a relative term because everything can still be going wrong, I am doing the best I can. So are you. And, yes, Adele is beautiful!

Shannon said...

Sniff....I couldn't have said that better. My kids are amazing kids and have so much to do so much to offer to this world. I can't help but think how diabetes with effect that. I just take a deep breath when my mind gets carried away and think that it is only going to make them better...I hope!