Tuesday, January 30, 2018

It Comes in Floods - Grief of a Special Needs Parent

I have talked before about how the being a special needs parent has left me in a puddle of grief at unexpected times. This morning is no different. I am sitting here at my office covered in reports needing to be completed, but now unable to do them due to the tears continually flowing - blurring the screen and watering the documentation needed for the reports!

It was a simple phone call from one of my favorite school employees. She loves our kids, she is a cheerleader for us and a champion of all! But this morning, her words hit me like a sucker punch to the gut - "when we meet about Ava's schedule for next year, do you and John want to talk about putting her in some life skills classes?" It's a simple question, right? And we have talked about it many times - I know the answer. Yet saying it out loud feels like a betrayal, or maybe just another bubble of denial busted right open! I don't think I live in denial - but moments like this teach me that I still hold onto hope against hope that in the end, it will all be ok. And it will - just not the "ok" you dream of when you hold your perfectly healthy baby girl.

 I was talking to a friend just this week about how blessed we are by Ava. How thankful we are for her sweet spirit, contagious laughter, and determination! It makes me feel guilty about feeling guilty - she will love life no matter what it brings!

We want her to be the best Ava she can be, and fulfill all God's purposes for her in this life! So that answer is "yes"! We will put her in life skills classes for some of the day in order to begin the preparation for adult living - something that for her, we truthfully have no idea what will look like!

The grief this morning brought will pass - I will reconcile again that despite what our expectation of "normal" is, Ava Claire is fearfully and wonderfully made, and we know this full well!

No comments: