Redefining Beauty

If you have a child with a disability, do you remember the day son or daughter was diagnosed?  Do you remember sitting with the geneticist?  I do.  I remember it clearly.  Both times (because we have done this 2x), we sat with the geneticist and they really weren't able to give us too much information.  The first time, Samantha was still an infant.  And so, we went home, and I went to Google.  I didn't want to.  I think I held off for a good 15 minutes before succumbing to that evil search engine!  And the images that came up broke my heart.

I now know that pictures don't define my daughter...but they do certainly impress a lasting impression on one's mind.  And in the very beginning, when you are moving forward inch by inch, hanging on words and phrases that doctors give you...those pictures can make you feel like any and all future for your child is doomed.

That's why I loved this story.  I love what this fashion photographer is trying to do ~ to redefine beauty, to open our eyes, to help us see hope, love, and beauty in our children.

How would I have felt if instead of pictures like the ones I saw, when I typed in microcephaly these images popped up?  I could have still seen tight arms, smaller body frame, facial features...but they are also just really cute pictures, aren't they?

Ok, I could have found a cuter picture.  But still.  She's so cute.

Look at the light in those eyes.  Our doctors gave us no hope for light...but it beams from her.

That's one reason why making Samantha's story public is important to me.  Search microcephaly today, and you'll see her face pop up, among the many other pictures.  Parents need real information...the everyday stuff.  They need hope.  They need comfort.  They need reassurance.  And with all the pain, they need to see the smiles and the beauty.  I love this man for the work he is doing.  His influence will help many families, and hopefully even change the medical books.

Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness Month. That's right. There is such a thing. I've been thinking about this a lot the past couple weeks. I wanted to post something right away -- to make people...well...aware. But, it just never happened. Too many other thoughts on my mind.


And honestly, I've never really associated Samantha with Cerebral Palsy (CP). I know she has it, but it's so secondary to who she is. If I'm going to label her with a diagnosis of any kind, it's Chronic Sweetness and Lovable-ness (CSL as it's also known around these parts).

I remember one day reading a report from her neurologist. Written on the paper, he mentioned cerebral palsy. I was so worried. I knew that name, but I had no idea what it meant. At our next visit, I wearily asked him about it. He informed me that Cerebral Palsy is an umbrella diagnosis. It's a diagnosis that really just explains a group of symptoms.

Samantha has microcephaly -- the jury's out on what her actual diagnosis is, but for now it's the same as what it was the day we met with the geneticist at Primary Children's Medical Center. For now, Samantha has Primary Autosomal Recessive Microcephaly. I have just spent a good 45 minutes scanning different articles, looking for something that would better explain her diagnosis, but unfortunately, they just left me depressed. So, I won't share that annoying stuff. BUT, what I do know is that we were told upon her birth, due to her small brain size, she wouldn't amount to much. And what we DO know that she is very much MUCH. She's more MUCH than most I know -- and they have a "normal" brain. I'm getting off track here...back to CP...

So, Samantha has a group of symptoms including high and tight muscle tone and jerky movements. It's the way she moves that classifies her as Spastic Quadriplegia Cerebral Palsy with Ataxia. So, what the heck does that mean? It means her movements are spastic (jerky and sharp), it affects all 4 limbs, and she has balance issues. All of this is true.

As I talked with Samantha's physical therapist today, who just finished a very intense course with Billi Cusick (creator of the TheraTog and an internationally known pediatric physical therapist who specializes in cerebral palsy and other neuromotor deficits), she told me about some of the things she learned the past week. I have no references for the information I am about to share.


1. Billi Cusick eats, breaths, and sleeps pediatric physical therapy. I don't know. We'd have to ask her ourselves.

2. Billi Cusick is intense -- in a good learning-a-lot way.

3. Recent research shows that CP, though the diagnosis is because of mobility problems, the real problem is a sensory problem! Whhhat?! This is exactly what we've been doing with Samantha! Sensory craziness. Glen Doman said this in the 1960s, and now research is catching up I suppose. So, she continued, it's important to have them on their feet, on the ground, trying to move even if we think they can't. They need as much sensory input as they can get. That will help the central nervous system and that, in turn, will help with the symptoms -- mobility, muscle, etc. I was very excited to hear this, and she got really excited when I told her more about our therapy. "Isn't it good to hear that there's some stuff backing up what you're doing and the progress Sammy's making?!" she asks. Um, yeeeaaah. 

Very interesting stuff -- if I do say so myself. And I do. My thoughts are wandering. Here was my original point when I started (for heaven's sake Jenny! sheesh):

Things change everyday. Research and funding and blah blah blah changes how we all see things. But it's also WHO we interact with that changes us. When I saw Cerebral Palsy on Samantha's paper, I was so worried. But you know, it doesn't change who she is. She's still my little Sammy and she's adorable and kind and I could just tickle her all day long to hear that laugh. But, knowing she has cerebral palsy -- and microcephaly and epilepsy -- and knowing kinda what that means has deepened my love and respect for her a little. She's one tough cookie. I feel gratitude to have her in our home. And I have such gratitude for those other families that help me feel like we're not so alone in this journey.

So, for all you CP fighters and heroes out there...this month is for you.  I give you all my love and respect.

Microcephaly

Microcephaly affects 2 - 2 1/2% of the entire
population.  Microcephaly is COMMON - it is far more
common than other well known disorders (i.e.
Autism).  Microcephaly affects more than 25,000
infants in the United States each year.  

If it's so common, how come nobody seems to know about it? Whenever I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have to explain this statement above.  It can be tiring.  Sure, Sammy's type of microcephaly is rare, but microcephaly in general isn't.  And how come whenever I type it in, there's a red squiggly line underneath "microcephaly" and the spell check doesn't recognize it as a word, even though it's a legitimate condition that 25,000 infants are affected by each year in the USA alone?  I'm not sure, but I'm feeling a little...blargh...about the whole thing today.  I guess I need to think of it more like...every time I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have the opportunity to educate them.  That would be a better attitude.  But come on...

I think about all these other conditions/diseases/disorders that are raising good amounts of money.  I don't want to discount their work or their need...that's not my point here.  But I wish microcephaly somehow was able to gain more recognition so that we could find out stuff about this...about my child.  I'm glad when people raise a ton of money for their kid's cause; again, that's not my point.  It's just...sometimes I feel -- discouraged?  I'm not sure that's the right word either.  

Guess it's just one of those days.