Our Journey to Understanding... and Understanding the Journey

After a relaxing, pool-time filled vacation and visit back to the home state, we came back to therapies, Gabe's soccer camp, The View, The Tablet, and a Thursday spent seeing four specialists and having an echocardiogram done on Anna Banana.

One of Anna's therapists told me as she was leaving the other day, "I read a great article that a father wrote whose daughter has autism... It was about how your life can't be all about your special-needs child."

Hmmm.... My first reaction was to ask her what exactly it was she was trying to say, but that was just a bit obvious now wasn't it? I smiled, said "Great! You should get me a copy! It sounds interesting!" and she said she'd try to. I left it at that. Later, when I mentioned it to another therapist of ours, her immediate response was, "How could you not make your special needs child the center of your life?"

I knew what the first therapist was saying. But does she not think this is a daily struggle for me? My first two top priorities right now are making sure Gabe is an involved child and well-attended to, all the while fulfilling my other top priority, Anna. This week, Gabe is in soccer camp! Next week, we'll go to a school camp many of his friends attend. An active boy is a happy boy, and he's having a great summer. Sarcastically I will ask you, do you think I felt a little defensive inside?

Anna is a different story. Not a better story, not a worse story, not a special needs story, not a Rett story. Just a different one. While we have weaned her off all medications besides her acid-reflux medication, we have a strict schedule of therapies, where we sometimes start as early as 8 a.m. and don't end until 3 p.m. There's the other regime's too: making sure she wears her eye patch for four-hours a day, and surprisingly this is the hardest feat of all. It's also bracing her ankles for four-hours and practicing her weight-baring. It's also a constant battle wondering if she's eating enough, drinking enough. It's also trying to understand what she's trying to communicate -- is she communicating that right now she's hungry, thirsty, uncomfortable, or constipated? There's also the coughing from the acid-reflux and the oftentimes gagging after a meal, where only Manny, myself and a few others know that once that sound is made, seconds are precious to have her standing with her arms above her head until the reflux dies down and she's comfortable again (or else we've lost the entire meal we worked so hard to get in).

I read this now and it seems much more daunting than actually living it, because our life has now been this way for five months, and this is is improvement. We haven't had a hospitalization since March (I just knocked on wood), it's been three weeks since we've had to use the nebulizer, and she is a very happy girl, a smiley soul who laughs everyday. She is also a temperamental one, sometimes throwing her toys away from her therapists in protest. Sometimes yelling at them, making mean faces at them, oftentimes biting them. When I chastised her in front of one, the therapist told me to not worry about. She said she loves Anna "spunk." Spunk is right. Oh how Anna makes me laugh!

Manny and I were talking last night about how he remembers coming home from work and seeing no reaction from Anna, and his goal for that evening was to do everything he could to make his baby girl smile. Most nights, during what we now know was her 8-month period of regression and stagnation of skills, she went to bed not having ever made eye contact with us the entire day or smiling just once.

He mentioned last year, and immediately my mind went to August 2008, when we brought Anna home from the hospital. I corrected my time-frame, knowing that was actually two years ago. And then I had to think hard about last year -- July... August... September of 2009 -- and I have almost no memories. The last pure, crystal clear memory I have from 2009 is sitting in my office after Anna had gone down for an afternoon nap and the month was May. I was on the computer and had just received a notification from BabyCenter.com that Anna's "10-month update" was just a click-on-a-link away. I had learned to dread these updates because as each month passed her development fell more and more off the chart. It was this memory, after reading that developmental update, that I cried and knew deep down something was seriously wrong.

I had used this very same website for everything when I was pregnant with Gabe and throughout his first two-years. The development charts were wonderful, and I was able to look ahead at what to expect throughout his first 24-months, broken down sometimes week-by-week, not just month-by-month. It was my favorite site. But when Anna hit six months... Then seven... Then eight.... Then nine... The first raindrops of this unexpected storm had just begun, and we were spending half our time living in denial and the other half completely confused. And while I now know I was innocent, a tremendous cloud of guilt hung over my shoulders, as if I was failing her someway. And as for those developmental charts, I told them to go #^%! off and cancelled my subscription.

This brings us to present day, because we all know the rest of the story. While my messy emotions bounce in and out of the neat packaging of the stages of grief - denial, anger, bargaining, depression and acceptance - I know I'll never be the person I used to be. I'm certainly not as naive, but I'm extremely more compassionate. I'm stronger. I tease Manny sometimes and I tell him "You're MANny enough for anything!" Because together, we've become the ultimate team. Warriors, really. With him next to me, I feel invincible. I take care of the stuff I'm good at, he takes care of the stuff he's good at.

We are out of denial (we were pretty much slapped out of that really); we still get angry and sad (especially when seeing little girls who are Anna's age); we've given up bargaining (her genetic deletion is completely sporadic - it's nothing we or our parents smoked or drank in college); we do find ourselves sad at times (who else doesn't?); and we are accepting (we have found, and are practicing daily, our new normal).

Anna has been a tremendous joy, especially in the past month. She's been healthy, communicative, aware, and lovey-dovey. Yesterday, when we spent seven hours at the Rett Clinic at Montefiore, we were prepared for the long day ahead and for the first time in my life, I felt like my daughter and I were partners. I felt like she understood why she was there and she knew that I was there to make sure she was going to be okay. She communicated that in her eyes.

After our third appointment of the day, where Anna played on the My Tobii and spent time placing her hands on monkeys, elephants, tigers and bears when we asked her to (yes, she knows some animals now!), I asked her, "And where's mommy?" She placed her hands on my face, and smiled.

That was sweeter than hearing any baby say "Mommy" for the first time because this was our first time. My daughter was able to clearly communicate with me, at 23-months: I Know You're My Mommy.

It was a gift from the Heavens. That moment - that one pure moment - said to me, "You will find meaning in the suffering you've experienced. And this is a gift. Be confident and know, I will not forsake you." To God be the Glory.

It was the past 23-months come full circle. Perfectly.