Sunday, May 17, 2009

Codename: Little Enigma, Total Miracle

We met with Isaiah's neuromuscular team last Friday. From 8am until almost noon, we met individually with all of the doctors and specialists involved in planning his neuromuscular care. It included his developmental pediatrician, an orthopedist, a physical therapist, and a neurologist. We met with the same team this time last year ~ only the social worker was absent this time.

Basically, we have come to the conclusion that we will probably never know what caused Isaiah's cerebral palsy and developmental delays. There is no known etiology at this point, despite years of testing. The doctors say it's very rare for CP kids with his APGAR scores (1,7) to have the severity of his continuing symptoms. It might have been caused by the SVT he suffered in utero, but that would be assuming a few different things. So we have to accept that the fact that it is inflammatory ~ not caused by an injury to his brain at birth.

So here we are. Isaiah has not regressed in any areas of his development. In most areas he has absolutely improved. His doctor asked us where we think Isaiah is developmentally. Then he asked us if we have given any thought his to long term care. It gave me pause ~choked me up~ but only for a moment. Our answer is and will always be that when we can't be here for Isaiah, we will make sure someone is. But we plan on being around for a very long time. Isaiah has lots of miracles still in store.

I've wondered what I would do if they ever came out with a pill that could make my son "normal". Would I give it to him? Probably not. Because the Isaiah I have is the son I'm supposed to have. He is the son I know and the son I love. Anybody else would be an unwelcome, uninvited impostor.

God has blessed us with 3 beautiful, amazing children. Who am I to mess with perfection?


Michele said...

Isaiah has been sent for a specific purpose and is truly a miracle. Although I have not met him, I see the love in his eyes and his heart. I am expecting the continued extraordinary miracles from God in Isaiah.

s said...

That choked me up too Sharon. You said perfectly well. You are stronger because of Isaiah and you know what, he is your strength despite being a little kid. I wish nothing but the best for him.

Jenny B said...

You do have a perfect family!

Trina Gueck said...

That was beautiful!