Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Saturday, October 11, 2008

Starting To Tell a Lifetime

Well, it took some time before I really wanted to start writing this. I was not sure how to say all the things that needed to be said. I also wasn't sure if disclosure is such a great thing. I mean, do I really want to tell complete strangers details of our life? Do I want the scrutiny or even the ridicule (I have been on the internet 20 years, I have seen A LOT of flames).

But when I think of someone who may be searching for answers, like I was, and then they read about us and have that magical connection moment, I know it will be worth it to have opened up and told someone. Making a difference for even just one person will be worth it. After a lifetime of questions about a sister of mine, and part of the health questions about my son, we were introduced to the world of sleep apnea. Specifically Obstructive Sleep Apnea.

There are other worlds I have been introduced to (RSD, Back Issues, Shingles, Epilepsy, Autism, Asperger's, Degenerative Eye disorders, the list gets long), and I may touch upon them in this blog, but this is the one that blew the roof off of our smug little world.

If I say that both my son and my sister always had sleep issues, I would be understating it. The thing is not that we didn't know they had sleep issues, is that no one, NO ONE, thought anything of it. Not a single pediatrician ever said, Hmmm. "You say, she sleepwalks and snores, and destroys a bed every night? Well, she is growing wonderfully! See you in three-six months." Or it was, "it is not big deal that your 14 month old snores like an old man, he is off the growth charts. He will be just fine, you wait and see." If I sound cynical, it is because we have waited and we surely do see now. We see damage and wasted years, and hurt feelings, misunderstanding and lost opportunities. All because everyone thought there was no big deal.

For the lives of two people, it turned out to be...a very big deal.

For the older one (my sister), this diagnosis brings closure to a question of whether she was crazy, on drugs or just didn't give a darn. For the younger one (my son), it lead to another disorder that may alter the rest of his life.

It has already robbed him of 6th grade.

More to come...