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Monday, July 4, 2011

6.30.11 (It happened.)

dum spiro spero

I'm not sure really where to begin this post. A lot of what I've typed has been deleted and typed over because I can't quite explain what Christian's attempts at smiling mean to me and this family on so many different levels. Even as I type and read over, my words just don't do it justice.

In the special needs mommy circle, I heard maybe it would be four months...six months...nine months before I saw a smile from Christian. Four months came...then six months...then nine months...and nothing. The build up was worse than the actual dates. And then the year anniversary was upon us and still? No smile? Not even a twitch?

After every therapy, with every holiday, even every birthday, the one and only outcome I wanted most in this world was a smile. It's all I wanted. It's ALL I wanted. It's all I wanted.

I contorted my face, made every goofy noise, bounced, shook, swung, rocked, trying to coax any inkling of what might resemble a positive response from Christian.

After days (and nights) of his nonstop crying, I wondered - Why is it that he can cry so much but can't crack a simple smile? Isn't there a trade off of some sort?

And then I started thinking that maybe he just had nothing to smile about. Maybe he was just truly miserable and unhappy in this life.

A smile became the defining feature by which I judged every other hurt kid. Do they smile? Yes? Well, at least you have that, don't you. Snarky much? That's just pain talking. It wasn't about his first steps, sitting upright, eating by mouth. It was all about his smile.

I had daydreams of the moment he would smile and I imagined that it would be so emotional for me when that day came that I'd cry while daydreaming it. I would think - How lucky I will be to have THREE smiling children?

And then it didn't happen. Time passed and still no smile. I remember standing in my kitchen, feeling defeated, in tears, and saying to myself - You may just have to accept that you may never see your son smile again.

There it was. I had to accept it. And after enough time passed, I started to accept that maybe there wouldn't be any hope for a smile. Maybe he was smiling and I couldn't recognize it. Maybe the ship has sailed and if he's not smiling yet, medical statistics about brain injury might infer that there would probably be no smile.

It was such an emotionally gut-wrenching issue for me, I couldn't even bring myself to mention it to doctors or neurologists for fear they would, in deed, confirm that there would be no smiles in his future. That was until I met with his keto neurologist in Phoenix. I asked about the smile quickly so that maybe it was so quickly she wouldn't even acknowledge it and wouldn't have to say it out loud, my worst fear - "Silly lady, you know that if he's not smiling by now, he probably won't."

But she didn't say that. She just said, "He'll probably smile. It may not be like it was before, but it will probably start with him turning up one corner of his mouth and go from there."

Just as simple as that? And, You really think so? After a year and a half?? - Is what I thought.

I let the fight for a smile go for a while. In the past six months things have gotten to the point where we just wanted him healthy and content for God's sake. A smile? That wasn't the priority. (Although, we would have been elated if it made an appearance!)

I won't lie and say that some days it has been difficult to muster up that mixture of hope and faith that gets us through the day.

But then, seemingly out of nowhere, it happened. He started having what I thought and what probably were smiling seizures about a month ago - and, yes, there is such a thing as smile seizures. When I first saw one, I dipped his toe into the warm bath water, the corner of his mouth went up into a smile and he had a little jerk. I wasn't concerned. Half of me felt lucky, even if it was a seizure, it was all we had.

And then the other day, I noticed he was maybe...possibly trying to smile...on purpose! So I started tickling him under his left armpit right at the ribs where he's really sensitive. And the corner of his mouth seemed as if it might be thinking of heading north for a bit. So I thought we should do something bigger to encourage that mouth to get to smiling.

I grabbed him and bounced him and rolled...and happened. And you better believe I had to do it over and over again to make sure what I was seeing was really happening. The moment I had imagined for just shy of two years was actually happening. But I was in what my friend, Jenny, calls "smile denial." I couldn't believe. And it happened exactly as that neurologist in Phoenix said it would!

I didn't cry, though, as I thought I would. I didn't call everyone I knew. I was still in smile denial and afraid that what I'd seen wasn't real, or maybe it was a mistake. I was just in disbelief.

Now, I'm humbled. After almost two years, we got something. Hope was not lost. There was still possibility. It was not set in stone that he would never smile again.

I don't care if it didn't look like a big cheesy grin. This is a child that has shown absolutely no positive emotional expression in almost two years. TWO YEARS! None. Zip. Nada. So a turning up of the corner of his mouth in response to rolling on the floor is MONUMENTAL.

You know when I did cry? Today, when I tried it again, and I saw the corner of his mouth head north again. Now, he's been sick, but it was still there. It was real. I didn't imagine it. It wasn't a fluke.

The lesson here? That even after two years, there are still miracles in store. Even after days (and nights) where it's hard to find any hope and you're weary and tired, something big might be right around the corner.

If he never does it again, I had that day. I had that moment. It's what I hoped for and what I prayed for and it was waiting right around the corner for us.

dum spiro spero
While I breath, I hope.

It used to be a phrase I used to remind myself not to loose hope.

Now it's my motto.

And I'm so lucky to have THREE kids that smile.


Jen said...

I am SO happy for you, for your family, for Christian!!!! for ALL of you!!! that is so wonderful, and even though you will take this day, and be happy for that, I hope and pray that it keeps happening, and it gets bigger, and biggest, and that it turns into a giggle, and then a laugh, and then a string of laughs....

I'm sorry, give us an inch, we take a mile, at least I do. I should not, but it's natural, right?

Happy Day to you all, and many, many more :-)

Love to you guys!

Meredith said...

That is so amazing!!! Thank you for an incredibly moving post; it is so awesome that Christian is smiling!! He's such a gorgeous little guy. =)

Caroline said...

Shauna, I can only imagine how special that moment was for you! Those small miracles are what keep us going in life...There is hope, and you of all people know are such an amazing mom! I'm sitting here all teary! Yay for Christian smiles! (of course he has reason to smile, you are his MOM!)

ferfischer said...

I'm so glad you were in smile denial! I didn't realize that was going on (well, perhaps I did) - and of course, you know how happy I am for you all! It does get better from here! Hope is never lost. Have a happy holiday!

Deana said...

Happy smiles to you...he will continue to surprise you for years to come. Even almost 8 years on, it makes the whole room hush and look in awe when Max does something we didn't think he would ever do. And it seems to be something different every day.

Stacie said...

That smile for mommy from a special needs child is the most amazing connection that can be made. You brought it to life for your readers!

Karen Owens said...

Amazing.. Beautiful. A wonderful gift for a wonderful mommie!

Thea said...

The fact that Christian smiled after that long gives me hope. My daughter's anoxic brain injury happened 6 and a half months ago when she was 9 months old and I think the absolute HARDEST thing about it right now is the absence of her smile. She had that kind of smile that could light up a dark room and melt your heart all at the same time. I miss it more and more everyday. I keep telling God that if she could just smile (even one more time), it would make everything easier (at least for a while). Anyway, enough about her... I just want you to know how just the few entries I've read (starting back from the beginning) have inspired and relieved me. I finally realize I'm NOT alone in what we're going through and neither is my daughter. So, thank you so much for sharing Christian's journey with us!

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