Breathe. Now Write.

Ahhhhhh.... That's me.... Taking a deep breath. Followed by a sigh of relief.

We made it to the airport, through security, and a 3-hour flight with smooth sails. It's been wonderful here, Day 1 down, and we spent it at a beach in Key Biscayne. Since it's still only late March here, not many people were there, maybe 10 total, and we sat nestled in between palm trees listening to the ocean breeze as the sun peaked out between the clouds. Gabe had free reign of the coastline, the water was warm for us Northerner's, and calm enough for us to let Gabe wade in waist deep and not be pummeled by a wave. Anna fell asleep in the warmth of Abuela's lap under the shade of a palm, and Manny and I took turns being the P.O.D. (a.k.a. "parent on duty).

The few hours we spent at the beach were truly wonderful. As I sat on my beach towel and looked out at the blue ocean water, breeze whipping my hair, my head - so used to being on overdrive - started compiling the list of people I still needed to call. I immediately told myself to Shut the Hell Up and enjoy this moment, for this was the best gift we've had in a while! I was out of our crazy New York life, with no jetting Gabe out the door by 8:30, or needing to plan Anna's feeding and napping schedule around which therapists were coming at which time and fretting over if she got enough calories and sleep for the day. I didn't have to worry about that!

I stopped, took a deep breath, and really appreciated the moment for what it was. What it meant. We were able to leave for a few days and slow life down a bit.

It's about 8:45 Wednesday night, and I need to head to bed, but I'm in writer's groove and need to use it while I have it. We had a late flight last night and I crawled into bed at about 2:30 in the morning. I woke around 8, feeling oddly refreshed, and excited for what this week will bring.

I'm not really sure where my newfound hope has come from. Perhaps it's the tremendous of prayers I feel coming our way. Or perhaps it's the little moments I am finding myself having with Anna... I feel like I'm just about to crest over this long, hard, steep hill and the sun is shining on her and I. I'm holding her, but in some ways she's holding me. Earlier today, Anna was having quite a tremor episode (from here on out I will call them tremorsodes) and I was physically manipulating her the way her O.T. showed me to: Firmly around the shoulders, then gently moving to the upper part of the arms, simultaneously, and speaking in a soft voice. She showed me how this particular movement calmed the tremors, referring back to her days when she worked mostly with Parkinson's patients. "They really loved this," she said. I found myself mimicking her movements today, and, to my surprise, it worked. Anna really responded and the jerkiest part of the tremorsode past.

Sometimes, to calm her, I will sing this little jingle, a very simple word pattern... "Bay-Bee An-Na... Bay-Bee An-Na" and just really fluctuate the syllables. She smiles every time. While I was holding her, she looked at me with those gleaming eyes and cute button nose and started moving her mouth in this odd way and I could hear a slight sound coming through. I looked at her inquisitively, like, "what do you want to tell me, baby?" and I could tell she was trying really hard. She then put her hand on my mouth and down over my vocal chords on my neck, and she wanted to hear - and feel - speech. So I started with "Bay-Bee... An-Na...." over and over and she sat there, focusing so hard on what - and how - I was speaking.

I know that cognitively Anna is very smart. No girl who isn't thinking something comes up with the things she is able to. But I see that the older she gets, with no words or even pointing yet, she's justifiably frustrated. Tonight, she was so tired, but I only knew because of the singles I've learned to recognize. When we are at home, we have our schedule, and it works for us. But when we travel, it is a constant guessing game for me. Is she still tired? ... Is she hungry? ... Ok... We gave her a bottle at this time ... Is she ready for food? ... We gave her food this time... Should we top off with a bottle? ... What is it now that has her crying? ... What is it now that has her in tremors? Today, for the first time in months, she was constipated, and I only knew to strip her of her diaper and put her in the one go-to position that works for her to be able to work it out by hearing the all-too-familiar sounds she was making as she tried so hard. In the end, it took Manny and I to do what we know best, and then she was fine again.

But after that happened, I couldn't help but reflect on what it took and what we went through to get to that point of knowing exactly what to do and when to do it to help her the most. Months of trial and error and many frustrated days turned into nights. I can only hope that we can learn how to combat the new symptoms we are seeing now faster than it took for us in the past. I've been reading a lot of different things on how to help Anna, with all of her different symptoms, especially the autistic markers that really seem to present themselves when she is sick, overtired, or anxious.

I have a notebook, that I need to start numbering it's items, of questions I have. Our trip to the Rett Center in Houston can't come fast enough, and I am finding myself more and more determined to find what will work best for our Anna.

Until then, each day brings it's own blessings. I know she loves to be kissed. She reciprocates in her own little way (usually with a wide open mouth, tongue out, and plops a big wet one on your cheek). I know she loves songs and the tune of a good hymn. I know she loves seeing me every morning when she wakes up and has her little head bobbing up and down, looking at the door, waiting for me to come through. I know she laughs the loudest when Gabriel is around. I know she adores dogs, and they adore her. Even here, in Miami, the family pet, Max, a big dog with big personality, approaches her and lets her pet (well, grab at him while we coach her "nice Anna... Nice Anna... Ok... GENTLE ANNA!"). And I know she knows - and loves - Love. I don't have to hear it. (Although I thank God every time Gabe busts out one of those "Mom?" "Yes, Gabe?" "I love you!" even if it's sometimes followed by, "So can I have....")

I don't really know what the point is of this post (as if the others are so well directed!) but I've been taking in a lot in the last few weeks (Understatement. Of. The. Year.) but especially the last few days, as I read more, research more, figure out more, and plan more. I guess one thing you could say I've added as of today is also pray more. I'm getting better at it. Bits at a time. But I feel the warmth of His smile, and I think He's glad.