Monday, June 23, 2008

more than meets the eye


I get it.



Why it's hard for some people to wrap their minds around Trevor's IS diagnosis & our obsession with what the future holds for him.



I mean, look at him. SO beautiful. Healthy.






So NOT sick.








On the cover anyway.








And really he isn't. Entirely. I get that too.



But Trevor is more than meets the eye.








He is an IS baby.



Just a few months ago his baby body was wracked by forty plus seizures a day. Just a few months ago our lives crashed into a world we had no idea existed. Just a few months ago we were forever altered in the deepest core of our beings. Just a few months ago we watched as a combo of Hope & Nasty was injected into our baby.









The hope hanging in the air was tangible. So was the nasty. Would he be a miracle? Would he not? We stood there...frozen. An undone mixture of faith & fear. You don't have the luxury of hindsight when you enter IS.



It is a land of little to no answers. No assurances. A lot waiting. A lot of testing. A lot of doctor speak. It's like all these little tiny pieces of some gigantic puzzle that you're supposed to try and put together. Try and force them to make sense. Only you're working blind. Like some morbid practical joke all the pieces are dumped in you lap...but there's no box cover to offer guidance.










It can make you crazy if you let it. So many times I have.


And I think in a way that's why I had butterflies before going to Boston. It was like my mommy-instinct felt that some of the pieces were going to start fitting into place. And I wasn't sure I was ready to glimpse into the picture gracing the cover of our life's puzzle box.


I knew it was bigger than me. I've always known.


Let me assure you that Trevor is okay. But it's not as simple as we were starting to hope.






The speech delay. The way his right thumb is smaller than his left. The slowness of his right side reflexes. The pre-mature favoring of his left hand. The zombie movement in his right arm & leg. The slump of his right shoulder. The struggle to crawl. The frequent falls. The continued abnormal EEGs. The spasms. The cord around his neck at birth.


Each one a piece. Alone...they might not be remarkable. Significance comes when you fit them together.






We learned this week that Trevor is not cryptogenic. His IS is symptomatic.


Trevor has Cerebral Palsy.


The doctor assured us that it's a mild case & he has great hope for Trevor. Our hour long conference included introducing AEDs - which he strongly believes Trevor needs. The very real possibility of brain surgery - to remove Trevy's damaged left temporal lobe. The doctor witnessing a Trevy tumble - and seeing it as something not so innocent. But rather as a seizure. How even with therapies Trev will probably never be the star athlete or give eloquent speeches.


But with lots of love & fight...he's going to be okay.


When I let myself linger on what this means for our future...my insides quiver. I've never claimed to be more than I am. A coward.


But in my heart I know he's going to be okay. We're going to be okay.







I believe it!







I believe it!







I believe it!








Because Trevor is SO much more than meets the eye!






14 comments:

Sophie's Story by Elaine said...

It must have been hard to hear the diagnose but as time goes on and you are able to wrap your mind around it...it will get easier. It has been a little over 2 years since Sophie was first diagnosed with IS and I am now just starting to accept that Sophie will be...well just Sophie. She is who she is and I love every bit of her. Not that I don't wish every minute that she could just be "typical" but she wouldn't be who she is if she was "typical".

My heart goes out to you.

((((hugs))))

Molli Salzman said...

Danielle,
I am glad you got your answers. So all of that information is what gave his diagnosis of CP or did the doctor do other testing? I will be praying for your family.

Molli

Molli Salzman said...

I wanted to also tell you that Trevor is simply gorgeous! He looks so happy!!

Take care,
Molli

baby trevor's mommy said...

Elaine - I know. I feel like the rest of our lives are going to be spent trying to find that balance between mourning & loving. *sigh* I can be such an emotional basket case...and sometimes dwell too much on the sadness. But I'm learning a lot from other moms...like you...and Jen...and Rebecca...and so many others!

...danielle

Molli - Trev's had 2 MRIs which were read as *normal*. The doctor in Boston basically said (w/o using the same wording) that the guys we see just don't have the same experience. He promised to have his team study Trev's MRIs until they found the problem. And if they don't we'll do a repeat MRI. But yes...ultimately some of the major factors are Trev's premature favoring of his left side. And all those other things I mentioned were key in his opinion. With mild CP it can be somewhat subjective...and Trev continues to overcome which can make it harder to see...but the neuro said there is a definate issue with his right side.

Anyway...

He is beautiful. More so everyday in my book!

Thanks! I hope your little Charlie is continueing to thrive!

...danielle

JSmith5780 said...

SO my comment never made it thoruhg cyperspace yetserday huh?

Mostly I just wanted to say how eloquently you put this into words. You and J are doing everything you can and you are doing it right. Trev will succeed. I have faith in that!

baby trevor's mommy said...

Jen - made it this time! :O) Finding words for stuff like this is so hard...but you know how strongly I believe other families going through this deserve access to how IS impacts us. Each journey is so different. But at least we can share...ya know.

Thanks SO much for everything!

...danielle

Shanna Grimes said...

Having an answer to the question "what caused this?" is a relief, even if it's not what you want to hear. Knowing the problem is part of the battle. It allows the experts to know how to treat it. I remember when we first got diagnosed with all three kids, we just wanted to know why all our kids have issues. Then you grieve for their future and grieve for the hopes you had for them. Then time goes on and they achieve things you would have never of imagined they would. Kids will always try to prove you wrong:) Just take one baby step at a time and cross each hurdle as you come to it.

Trevy is a tough little guy to have gone through what he has been through so far. I know that you aren't through the woods yet, but he'll get there. You all will :)

Dawson said...

The way that was worded along with those awesome pictures of him is just beautiful. I mean, isn't that what all this is about? Finding beauty in each situation. The diagnosis IS another piece of the puzzle, but it IS NOT an answer to what his future holds. Keep searching for the beauty of the situation. He Looks GREAT!!! and we are sending more prayers than ever for you guys

Anonymous said...

Danielle and Jonathan, We read the posts and are continuing to pray for the peace of the Lord. We love you all. Remember Psalm 139:14-16 gives us the answer, we are all wonderfully made!! We love you, Trevor!! We love you both, Toby and Bristel!!! Wish we could hug and kiss you all in person but Mommy and Daddy will have to be our proxy. Bibi and Babu

KC's Mama said...

Danielle,

Your son is beautiful. He is amazing and strong, and you are too. I am sorry to hear about the CP diagnosis. I am sorry for the hurt that your heart is enduring right now. While it's true that he is still the same Trevor that he was before the diagnosis...I can only imagine the ways in which you are not the same. You are in my prayers...always. Keep hanging on..I just know that God has great things in store for Trevor!

Karen

P.S. I will get back to you today about your previous email to me.

~Mama Skates~ said...

i 2nd all the previous comments - ur strength, determination & love amaze me! u're so honest & real! God truly does have great things planned for Trevor - especially with a mama like u, by his side!!! xoxox & prayers coming ur way!

baby trevor's mommy said...

(((sharon)))

thanks! xoxoxo back!

...danielle

Monica, James, & Connor McGuire said...

Hi my name is Monica & my son Connor was diagnosed with IS 12/06 when he was 8 months old. I sit here in tears after reading your wonderful explanation of the cruel world of IS. My baby too looks normal on the outside, so it's hard for others to understand what we are going through. I'm glad that I stumbled upon your blog. Do you mind if I link your blog on mine so that I may keep up with you & your beautiful baby? Our blog is connormcguire.blogspot.com Please feel free to check ours out!

baby trevor's mommy said...

Dear Monica - Thank you SO much for the sweet compliments! I'm glad you stumbled here too! I would be flattered if you added Trevy to your link list! I tried to find your blog...but for some reason it didn't show? I would love to read your story too...

...danielle