Friday, July 31, 2009

Speech isn’t all that

WARNING:  I babble ALOT in this post.


You don’t need anyone to speak to you about this tree to see the beauty in it do you?


 cherry tree


I don’t need anyone to speak words for me to see the beauty here either.

055Words aren’t always necessary.  They are only really needed when someone won’t open their hearts to “listen”.


Results are in from the MRI that Daniel had last week.

I can’t lie and say I didn’t shed a few tears, and the feel of my heart dropping one more time didn’t hurt.


I tried to not get my hopes up about the results.  All along they have told us that with Daniel’s brain malformation that it was very unlikely that he would speak verbally.  We do know he can say a few words when he wants.  He watches your mouth when you speak and he tries to form his mouth the same way, but nothing comes out.


But for some reason when they said lets do the MRI and see if the nerve tracts for language are there.  I secretly got a little excited. For the hope that Daniel would be able to have some speech.  Hope for the fact that maybe something in Daniel’s life could be “typical”.


Well this is a part of the email I received about the results, these are the few lines in an already short email (for those of you who get emails from HC, you know this is typical)


“The scan was analyzed for language tracts, but
these could not be identified on either side.  So I guess the outlook
for speech is not good.”

I read that repeatedly to see if I could dissect it and see if maybe I wasn’t reading it correctly, or if I could be misunderstanding it and that really things looked good but I was reading it wrong.  But nope, he’s pretty straight forward and to the point.  There is no way it could mean anything else.  Two sentences and each time I read them I get weepy.


Now I’m at the point where I read it and I think to myself, he said “I guess” so maybe he doesn't really know.  He said “speech is not good” but he didn’t say it was impossible right?  He said “language tracts could not be identified” but that doesn’t necessarily mean that they aren’t there, maybe they are hiding?


After a few more days, I will read those two sentences and it will read the way it is suppose to and acceptance will be there, but for now- they still hurt and I am looking to twist and over analyze those few words.


I have so many questions that I haven't asked yet because I don't know if I want to know any more.  I don't know if I want to hear the answers..

If those tracts aren’t there then why can he say a few words?

Is it possible that he could still have some speech, but that he just won’t be a keynote speaker at seminars?

Does it mean we should totally give up on verbal speech and just concentrate on augmentative and sign language?


Its kind of funny, when I get these little set backs it makes the defenses come out full force and I’m ready to attack.  So after a few tears have been shed, the reality is, Daniel is no different than he was a week ago before the MRI.  He is still one of the cutest little kids out there, and he communicates in his own special way.  And his way is beautiful.  It might not be the typical way everyone else does it.  But his expressive eyes, his facial features, his gestures, his sound...I know what he is saying and that is all that matters right now. 


The only thing this test means, is that Lonnie and I will continue to be Daniel’s voice for him.  We will tell people his thoughts (after he conveys them to us).  So if you hear me say ‘F*ck off” because you just said you doubted Daniel would do something.....its not really ME saying it, its Daniel!


But I second his thoughts! :)


Our lives are not over because of this, its just a set back, we’re still riding down that bumpy pot-hole filled road but I see a finely paved road just ahead.


Hey Daniel,

Momma doesn’t need words to know that you love me.  I know it from your eyes.  So regardless if people say you will talk or not, makes no difference to me.  I just wanted to make your life a little easier.

But just because they say you won’t doesn’t mean you can’t, and you should still try.  I know that you love to prove people wrong, look how far you’ve come already.

Just know that daddy and I will always be there as your voice to scream, to argue, to express your feelings that people don’t understand or listen to.

I know you have so much to tell the world, so many things to teach people. We will just find different ways for you to teach, and YOU WILL make a difference in this world.  You have already made a huge difference in me, and for that I am so grateful.



( I am turning off comments to this post on purpose. I know there are people who will say “I am sorry” and I do appreciate it, but right now I am staying positive and what I see in front of me is a little boy who is happy and he is ok with things, so, so am I.  But thanks for your thoughts.)