The "F" Word

Let's talk fears.

You know, the big ones we all have about what kind of people our kids will be when they grow up. Or what kind of adult I'll be when I grow up... Oh wait, that happened when I was least expecting it.

My biggest fears at the present moment are: if we want to find a handicapped accessible, nice, open, full-of-windows apartment here in NYC, will we be able to snag the one we want? Will we always be constrained by a budget? Will I ever go shopping again at the beginning of a new season to be up-to-date in all the latest styles? Can I just go get my hair re-highlighted already? Ok, so enough of the surface-y stuff.

What will Anna be like when she grows up?

Sure, sure, I've discussed this before. Still doesn't make it easy. Sure, sure, I've relinquished as much as I can at the present moment to give up to God and do my damnest to make sure we're pushing her hard at her therapies and listening to every point made by specialists.

But I had a moment last Friday, when we visited the Rett Clinic at Montefiore Hospital in the Bronx, which came to me by recommendation by a few fellow-Rett Mom's who swore by this clinic and couldn't stop the praises for the director there, Dr. Sasha Djukic. We originally went to Baylor at the urging of our geneticist, and we are more than thankful we went. After seeing Dr. Sasha, we were able to see the difference in their treatments. Baylor seems to be much more clinical, statistical. Dr. Sasha and her team of specialists there treat the whole person... lots of heart tests and bloodwork and bone density tests and.... and.... and..... Let me get my list.

So we see her, and she tells us straight up, "When I reviewed the paperwork you sent me, my heart dropped when I saw her regression began at 6-months. I will be honest with you. The earlier the regression starts, the more severe in symptoms the patients seem to be."

Immediately my attention level went from a 5 to a 3. I have heard enough, I think, I can't hear this anymore. But then Dr. Sasha continues. "But I look at her, and her eyes are so intelligent. I am very happy to see this."

She then pulls out a communication device, a pre-programmable box with two enormous buttons, one red and one blue. She had pre-programmed the buttons for one to say "ANNA" and the other played a lovely musical note or two. She takes Anna's hands and she places them on each button. "This one says ANNA. This one plays music." Then she says, "What do you want to listen to, Anna?" (I'm thinking to myself, Safe Question.) Anna hits "ANNA."

"Ok, you like your name. But Anna, I would like to hear Music."

Anna moves her hand, and plays the music.

"Now show me ANNA."

Anna hits Anna.

"Show me Music."

Anna hits Music.

And so it began. Something we knew - from her eyes, that our daughter is in there - but was now confirmed through an adaptive communication device.

And it has been confirmed for us everyday since (minus the device), now that we are giving her choices for everything - from what fruit she wants for dessert to what shirt she feels like wearing to what book she wants us to read to her before bed.

And it went beyond.

Manny asked her on Sunday, "Where's the blue ring, Anna?"

Anna touches the blue ring. And so it continued... Yellow, red, orange, and green. She knew them all.

Then it escalated. "Where's the letter 'A'?" he asked her last night. Out of A, B, and C, she chose A. Then we asked her for B and C, and she knew those too.

How amazing and how indicative it is for us to know, our daughter is there, and she is smart, and she can make choices, and she knows her primary colors and the first three letters of the alphabet.

How much more is inside there, dying to tell us yet being trapped in this body?

This perfect person. In an imperfect body.

I chose this new blog layout for a few reasons, but the number one reason were the birds at the top... Flying. Next to "This Stefanie Matters" and my favorite quote about how having a happy family is like an earlier heaven, and then. The birds. My symbol of sorts for what we are going to do together, as a family. Soar to the highest places we'd never thought we'd see and go together, as one.

Lots of storms I suspect ahead. But we're learning to weather.

We head to Montefiore again tomorrow morning to meet with GI and Dr. Sasha again. We're going to talk about communication equipment we can buy for Anna that will enable her to tell us what she'd like, or how she's feeling. We're going to talk about a feeding tube, which is becoming more and more apparent that this is what Anna is on the borderline of needing. While she loves her American cheese slices and the occasional rice cake, or the pear slices dipped in cinnamon, the monotonous diet of puree's she's on, even with the Vital Jr. in between meals, isn't enough for her nutrition or hydration. Especially in the summer.

I'm not able to give her the multivitamins she needs or the cod liver oil that's proven to help those with Rett or even relieve her thirst with a drink of water because she is usually aspirating. It's frustrating, but we aren't to the brink of malnutrition, yet we don't want to get there, either.

It's not an easy decision, at all. I never thought I'd be here, doing this, making these decisions. It's takes a toll on me. I am sure on Manny.

We live our lives, our day to day, with doses of humor in between the struggle, but it is just that, a struggle. The other night he was cleaning up after dinner while I was getting the kids ready for their bath. I yelled, "Can you get me a t-shirt?" since all of Anna's laundry was still in our room, waiting to be put away. I think the sink was running and he didn't hear me so I walked out with Anna in my arms and yelled again, "Can you get me a t-shirt?!" and he threw the dish he was washing down hard into the sink and came running, eyes wide and mouth agape.

"What are you doing? I'm just asking for a t-shirt!" I said.

"Oh my God I thought you said 'we were having a seizure.'"

T-shirt. Seizure. I could see the confusion.

It was a small example on a grander scale of the symptoms we have to be on the lookout for, and sometimes they just get to us. No matter how good the day, no matter how happy she's been, there still lies in us the fear of what's to come.

And to be honest with you, I look in the mirror and I see me becoming someone I said I'd never be, a mom so wrapped around her kids that I'd let myself go, become sloppy and overweight and just old.

Granted, I'm not there at this moment, but it's a fear. Amongst everything else.