Friday, March 15, 2013

Most days...

Most days, I honestly forget that we are a "special needs" family. Our life just is what it is- we have never known any differently, and we just go about our business.

Yesterday was NOT one of those days. I was reminded just how different our lives are than most. Sitting in the ER at ACH, waiting for them to call us into triage, and going over in my mind the medications she takes- in order of relevance, her diagnosis's, and her history, it donned on me just how different being a special needs mom is.

I don't know why the Lord chose to allow Ava to be born with Angelman Syndrome. I don't really think it is my place to question the "why" of it- although I find myself doing just that from time to time. But I do know that, through His grace, we are able to handle all that comes our way. Even big, bad, scary seizures!

I pray over Ava each night- pray that the Lord protects her and keeps her safe. Pray that she doesn't have a seizure in her sleep that stops her breathing. Pray that she wakes up each morning the happy beautiful girl I love so much. Those prayers took on a new importance last night, KNOWING that she has tonic-clonic seizures. The enormity of the stress is hard to explain and isn't something I can put into words- just suffice it to say it is not fun.

I have so much respect for my fellow special needs parents- they are all so strong. Not by choice, but by instinct. And I have learned so much from them. I am just thankful that we are going through this with Ava in a time and place where we have resources to help us navigate this journey.

So to all of my fellow special needs and Angelman Syndrome parents- thank you for your support, guidance, wisdom, encouragement, and strength! You are all amazing!