My Soul-Ache from Little Pink Soles

Does this get easier?

Because of Anna's slow growth from 9 months - present day, girlfriend's been wearing size 12-18 months for about that long. Even when she had the feeding tube placed, she didn't grow out. She grew long. She's our little brunette Taylor Swift. Recently, her growth spiked when we changed to an amino-based medical food (Elecare) and we were, for the first time in months since getting the feeding tube, able to do a night feed vomit-free (Knock. Heavily. On. Wood.)

Now she is wearing - not swimming in - 24-months. Her feet - a size 2 or 3 since she was 10 months old - have also grown. We always have shoes that fit with her ankle braces (size 7 or 8, enormous for her I know) because she wears them about 4 hours a day. But when we go out and she isn't wearing the braces, we just slide into a smaller pair of "typical" shoes and we are off.

Since it's been winter here and freezing, Anna pretty much stays in the house for everything, unless it's for a doctor's appointment. It sounds sad, I know, but the alternative is her getting out, and getting sick. And there is no "a little sick" with Anna. There is only "sick."

So, Spring decided to grace NYC with it's presence this weekend and the first call to action was to get Anna outta the house and why not run an errand while we were at it? Hello: First Haircut Since March 2010. She just has this crazy cute monsoon of curls atop her head 24/7 and some days it's cute and other days it's Out. Of. Control. It's also at the weird stage where we can't pull it up fully into a ponytail and if we do she usually rips it out anyway. So to the kid salon on the East Side we ventured, Abuela and I co-piloting the endeavor. Anna did great!

And then we got home, and she was in the weird mood where she wasn't sleepy (so she said matter-of-factly with her Yes/No cards) but she didn't look all that great either. She did say she was hungry, but 2 bites into her Boost and she was gagging and wretching and all of those other terms my fellow Rett-moms know so well. We decided to lay her down. Perhaps I am just a big ball of paranoia, but when she woke up I took her temperature. I did, after all, take her out of the house for Exactly One Hour.

Well now, here we are into the evening and she is down for the night. Teeth grinding - grind grind grind grind - a lot lately. It used to bother me to bits. Now I just grind my teeth too, but for some reason mine don't make that skin-tingling, hair-raising sound like hers do. I'll also massage her jaw joint to loosen her facial muscles up a bit. This, as I am sure you can imagine, she just loves. Not. But we do see marked improvement after a good massage session. It just takes a few sessions to get there.

As Daddy was bathing her, I was putting away a few new 24-months outfits that scream SPRING! and ended up reorganizing most of her closet. I also phased out all of the clothes that are too tight or too short or just plain old old.

So enter the shoes:

Since today was that first day she's been out of the house in a month or so (The View! I just remembered! That was the last day she's been out... Poor bubs), I hadn't been keeping track of her going-out-without-braces-shoes. So today, we had 1 pair out of 3 that fit. Barely. Once we arrived home I freed her sausage toes and knew: These shoes are no longer usable.

I added them to the box of clothes I've been meaning to give to charity for a while now and looked at the pile - the first real pile of her clothes I've ever had to give away because of obvious reasons - and I started crying. Here I was, congratulating myself the past 24-hours for making it through yesterday. A 6-year old's birthday party full of attendees with big kids and a few toddler girls Anna's age and not crying and actually being OKAY with Rett and my life, to now, this moment where I looked at the box of shoes and my heart shattered to pieces. Again. (For the record, I am getting pretty sick of these moments and then having to work really freaking hard to pick up the broken pieces to feel "whole" again.)

It was the Sketchers that did it. Those little pink sneakers. I bought them when Anna was 10-months old. You know why? Because I thought she just needed more traction to feel more secure and these shoes would be the ones that she would finally walk in.

She didn't.

So giving them away is a bittersweet experience for me. Once upon a time, they were a beacon of hope that our Anna was going to be okay (a.k.a. "typical") and they'd help her be okay. Now, they were merely a symbol of a shattered dream and outlined my past denial in the same color pink as their soles.

A part of me wants to keep them. The other part wants to forget the Sketchers because that bit of my heart and soul echoes what I read in People magazine (of all things, I know) when it interviewed former playboy and actor Colin Ferrell, whose son has Angelman Syndrome, and he said, "My son is exactly who he is supposed to be."

I now tell Anna that on our hard days. When I have sorrow and grief and wonder about our life without Rett when her hands are moving all over the place without her being able to control them or her tremors prevent her from eating well or she chokes on her own saliva because it's hard for to coordinate breathing and swallowing at the same time. So I realize those more-than-perfect-words are more for me than they are for her right now. But as she grows older, and it becomes clear to her that without a cure this will continue, I only hope that these words will resonate with her: "I am exactly who I am supposed to be."

It changes my perspective and my attitude. My girl's going to change the world, one person at a time.

Goodbye, Sketchers.