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Wednesday, August 10, 2011

We're Live

Ok. Phew. I'm sweating writing this. But the day has come.

We're moving.

To Wordpress.

Please come join the party over at understandingprematurity.com

You have all been our lifeline over the past year. Please, come join us. Follow us as we make this move. And be patient. I have no idea what I'm doing am trying to figure this all out.

Sunday, August 7, 2011

Letters to Charlotte: Progress

Dear Charlotte Amalie,

Last night, your nurse told me how you were trying so hard to make the "la-la-la" sound. You would go through the motions, desperately willing your body to function as your mind wished it would.

Yesterday, this was not possible.

This morning, out of the corner of my eye, I watched you effortlessly roll from your back to your front, push yourself up and practically fly into the crawling position.

Last week, this was not possible.

Right now, you are precariously perched on your feet, in a stance that cannot be comfortable. You are holding yourself up, leaning over Caleb's yellow dump truck, attempting to laugh at the laws of physics, as you recklessly lunge towards the wheels. Spinning them around and around, you throw your head back and laugh. Laugh at the world, baby girl, laugh as much as you can.

Last month, this was not possible.

Tonight, I will place you in your crib. In your own home, I will lay you down for a night of sleep and slumber. I will attach your monitors and push medicine through your feeding tubes. I will swaddle you as you smile and kick your legs. You're the only baby I know who is so ecstatic to be swaddled. I will sing you a song, and then walk into the kitchen to wash the dishes. When I finish, I will walk back to you, and find you sleeping. I will gently place your BiPAP over your face, and I will stand frozen for a moment, mesmerized by your image; hypnotized by your presence.

Last year, this was not possible.

Baby girl, if you are certain of nothing in this life, be certain of this:

Anything, anything at all, is possible. 

And no one can ever count you out.

All my love,

Wednesday, August 3, 2011

Why Dad Should Never Leave The Diaper Bag at Home

That's exactly what you think it is
Peter had the blessing of taking Charlotte to therapy today while I stayed home with Caleb. Sometimes, dads have all the luck.

Sunday, July 31, 2011

In Which I Write About Something I Only Know Tangentially

I find myself in an odd position sometimes. Charlotte straddles the line between "normal" (what does that mean anyway?) and "special needs". Clearly, she has a lot of special needs. But now that she's not on oxygen anymore, her needs are much less obvious to the random person we see on the street. It takes a medical professional to realize the tube running down her leg is a feeding tube. Usually people just smile and say, "Her backpack is so cute! Where can I get one?" {Her feeding pump and formula are kept in a backpack that she wears on her back so her tube doesn't pull out. And really? You definitely don't want this kinda backpack, lady.}

More often than not, people see Charlotte, and not her vast amount of special needs. We hear all the time, "She doesn't even look like a preemie!" {which makes me roll my eyes, but I know, I KNOW, people are trying to be nice, so whatever} or "You'd never know how hard she's had it." Which is great and all, but it kinda ignores the incredible path we've had to take. Like we can just forget about the horrors we've experienced because she doesn't LOOK like she has special needs now.

On the other hand, it's true: Charlotte doesn't look like she has special needs. I cannot imagine what it is like to be the mother of a child who so clearly has special needs, especially cognitive special needs. Nor can I imagine what it is like to hear people throw around terms like , "You're so retarded" {spread the word to end the word} or, "Man, I was totally autistic!" knowing that people are comparing the syndrome your own child, the love of your life, has to an action or person that is being ridiculed.

Recently an article ran in GQ magazine, saying Boston had "a kind of Style Down Syndrome, where a little extra ends up ruining everything." There has been a very public outcry (here and here and here and here and I could go on), but only private apologies. It breaks my heart that people think that's OK. That someone thought, "Gee, look how witty I am!" instead of thinking about what a child with Down Syndrome, or an adult with Down Syndrome really is.

Thankfully, not everyone in the public media feels this way. Nordstrom and Target recently ran these ads:


Look people, kids (and adults) with special needs are just that. People first and foremost. They are children who have grandparents, parents, brothers, sisters, teachers, therapists, caretakers, and friends who love and play with them. They are children who need more help along the way. They simply have special needs. They are not defined by those needs, they simply have them.

That girl you see in the grocery store isn't "retarded". She is a little girl who has "mental retardation" (a medical term that is often met with some controversy) or "intellectual disabilities" or "developmental delays." That boy on the playground isn't a "downs kid" he's a boy who has Down Syndrome. Those children own those titles. The titles don't own them.

And it's never appropriate to throw around terms like you own them when you clearly don't. So just don't do it. Just don't. Ever.

Tuesday, July 26, 2011

Oh My

Warning: Caleb may or may not be running around in his underwear in this video. That's how we roll around here.

I love this video. To me, it shows what Charlotte has become. Who she is. What she is capable of doing. It shows the love she has for everyone around her. It shows her hope; her faith. This video tells me that there will be hard days, but she will be just fine. When I watch it, I see a future of pillow fights and pranks pulled on siblings. I see a little girl who is determined to be happy, and a big brother who doesn't mind providing the entertainment along the way.

This video shows me that I have two beautiful, loving children. It shows me that no matter how rough the beginning may be, siblings can find a way to love each other.

It shows me that sometimes I worry a little too much.

It shows me just how blessed I am.