Monday, March 28, 2011

Life and reality checks...

It's been a long year and a half, almost two years since the Kiddo was diagnosed with Adrenal Insufficiency. For awhile every time we put the Kiddo into a new situation I would tell the adults involved what to watch out for with his AI. Every time he got sick I would wonder how he was going to handle it, if he would sail through it as he always has or if this time is going to be "the time".

But then he made it through the year with hardly a sniffle, he's got my genetics, my families solid constitution. I don't remember being sick much when I was younger, and even now I hardly ever have the flu, and usually only one cold per season. He broke his leg, and slid through that as well. I did the requisite load dosing when he broke it, the hospital loaded him up some more, and he didn't have a single AI related scary moment. After he was released and came home the doc told us to go strait back to normal dosing, nothing fancy, no extra days of extra meds (which I expected) but just back to our regularly scheduled program. I wondered, I questioned, but I did it. And the Kiddo glided right along, no (AI related) problems.

There comes a time when it becomes less real, less immediate. You have an idea of the possibility, but you don't have that reality kicking your door down shoving things in your face. The three times a day pills become just a few more vitamins, just like the extra calcium the kid take with breakfast, or the Flintstones he takes with dinner. Another pill, you try not to forget or miss, but no big deal either way.

And then reality hits and you're suddenly faced with the fact that your child isn't quite like the kid next door who takes fruit flavored bear shaped vitamins and putters through the flu just like any other day. No your kid is the one who could catch that flu, and not have it be "just a flu".

I am a member of a support group for Parents of Children with AI. There's a link on my sidebar to their blog. There is also a Facebook page, it started as 5 people maybe half a year ago and now we have 19 members. One of those members lost her daughter, Annie, this past weekend. Their little girl was diagnosed four years ago. She was diagnosed when, like most of these children, she went into crisis and ended up in the hospital where they were smart enough to run the right tests and found it. A month ago, she caught the flu and strep and landed in the hospital because her body couldn't handle it, she fought for nearly a month. She was 7 years old.

THAT is the reality of AI. My heart is breaking for this family, I didn't know them well, in fact I hardly knew them at all. But I know what they lived with daily, and I can't help putting myself in the "what if" shoes, and I cry for them. I cry for their loss, and their heartbreak, and all that they've been through.

We have been so lucky with the Kiddo. True his start in life was rough (probably due to the AI, with all that time in the NICU, and all those tests somehow they missed the one... but hindsight is 20/20 and there was no other indications of it). Even so once he bounced out of it he did okay, and his diagnosis was easy, almost a side thought... Two pushy parents, one pediatrician that actually listened, a quick Endo visit and voila here we are. And since diagnosis we've only had a couple condition related scares, all resolved quickly.

So this past weekend was a wake up call. A reminder that AI isn't just another vitamin, it's a life threatening medical condition and my six year old son has it. And it reminds me that this is why I nag people to watch him, to understand what to look for, to know how to contact me. This is why I carry around emergency medication, and a shot pen. It's why I have volunteered for the fieldtrip, and why I will forever be grateful the the amazing understanding and support of my family (and my 'parents of' group)... because it's rare, and it's serious, and it's our life every single day.

Several of us from the support group and getting together to send a tree to Annies family, for them to plant in their yard. It's going to be a Tulip Poplar, they have amazing neon green leaves and bright yellow flowers in the spring, and vibrant yellow leaves in the fall. I am really happy with the idea, it is a beautiful tree and it's a longer lasting gift then a bunch of flowers would have been. We are also trying to find out if there is a memorial fund set up for her so we can contribute to that as well (even if all we have to give is a few dollars). There is nothing we can say to them to ease their pain, but we're hoping these little things help lighten the burden of it.

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