Wednesday, June 16, 2010

Just words

Today we had some very important (and long awaited) appointments. Here are phrases a parent hopes to never hear from her child's doctors:

spastic cerebral palsy
....we'll have to wait and see
grossly deformed brain
....we'll have to wait and see
significant brain damage
....we'll have to wait and see
extensive encephalomalacia
....we'll have to wait and see
significant visual impairment
....we'll have to wait and see
will never walk
....we'll have to wait and see
may never talk
....we'll have to wait and see
severe global delays
...we'll have to wait and see
low cognitive ability
and guessed it....we'll have to wait and see

...and that's not even all of them.

At some point, one just shuts down and realizes they are only words. Our neurologist asked me if I was "one of those parents" who wanted her to paint a fluffy, optimistic picture. I told her I was the polar opposite of fluffy - I wanted it straight and scientific. That's what she gave me, and I appreciate that. What I know is that the only solid truths we have right now are that:

1. her hydrocephalus is currently stable
2. there is permanent damage - we already knew that
3. we'll have to wait and see - we already knew that, too

To quote one of my favorite geniuses:

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" — Dr. Seuss

So, we move on to the next phase of this journey - fighting like hell. There is nothing we will not do for our kids. We will go to whatever lengths necessary to ensure M has every resource available to her.



Tiffany said...

I'm like you.....are like the hard truth too. Then I can create my "worst case scenario" and then work to make it better. My son is two and if you looked at him and then at his scans... they do not agree. He is doing WAAAAY better than expected.

Work with and love on that baby....then wait and see.

janiece said...

yep--that's what we do--give our child the best chance. You are the perfect person to parent your children. Fight like Hell!! And know that we are behind and beside you 100%

Michelle said...

You go girl. I love that she is not headed to the is a win!

Christina said...

You go girl! It is amazing what a lot of time, love and patience can do for these sweet babies. My friend had her twins at 25 weeks. One survived and one did not. The little fighter had multiple multiple problems. Shannon, his parents worked their tails off with him. He is now 9 and so smart. His mom said he likes to take things apart only to put them back together again. It can be done with prayer and determination. I'll be keeping you guys in my prayers that she surpasses all expectations.

Confessions of a Mother, Lawyer & Crazy Woman said...

Oh, wow. So much to process. Having been on the end of the "wait and see" neuro, I know how nerve-racking and stressful that is. Sounds like you are in for the fight, however, so good for you for that attitude. I'll be thinking of you.

Only the Sheppards said...

We had an MRI done at 8 months and, though we have different brain issues, we heard many of those same words... Our child, too, we were told, will likely never walk, never talk, never sit or roll over, or have good functional vision, and we were told the best possible outcome we could hope for was only mild mental retardation in addition to everything else...

And we were told to wait and see.

But we're a lot like you. We did no waiting and seeing. We pushed and fought and prayed and sweat and swore and...

Now the neurologists wait and see what he'll do next that he was never supposed to do... The wise ones will tell you a baby is much more than a picture of a brain on a screen.

So, I want to share with you one of my favorite quotes, a quote that once upon a time meant nothing to me...

"Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway."
Mary Kay Ash

Best of luck as you process all the news and start down this new path. God bless you and your amazing little family!