How Do You Eat An Elephant?

The last two days have been marked with many emotions, some too deep to even touch upon here. This morning when I awoke, I was overcome with an incredible sense of grief and depression, for the first time ever in my life I found it actually so hard to move my foot from under the sheets and step out onto the cold hardwood floors of our apartment to begin my day.

Taking those first steps toward her crib were the hardest. But as I got closer, and I heard her making Anna sounds, not coo's, not cries, not babbles, just sounds that have become Anna's way of communicating with us, I realized what I have known all along. I am her voice. Her gestures that only Manny, Gabriel and I know give life to what she can't. The clacks of her mouth mean she is hungry. The deep growls when she's upset. That illuminating smile when the only person she wants to be with is you. I can't say for sure if I will ever hear my daughter say the words "MaMa"... but Manny gets to hear this beautiful song she goes into sometimes that is a repetitive "DaDaDaDaDaDaDaDa.... DA-DA!!" It doesn't matter if it is directed toward him as a title or as recognition. The smile on her face tells us all we really need to know. The rest of our doubts and fear and sadness can be shelved for a while. We have her, and she has us.

After a difficult OT session this morning, I stared at the stack of papers on the coffee table. All of the follow ups ahead of me. All of the first time appointments ahead of me. All of the things that are going to be able to help her. And if I am not anything else, I am competitive. So I said, in pretty much these words: Let's go, Rett Syndrome. You and me are on. And you're going to lose.

I began by calling all of the doctors who know us now, faxing the same diagnostic sheet over and over, delivering the news. Some were devastated. Others were more matter of fact. All of them were supportive and ready to take on the challenge.

Then I called Houston, Texas, home of the Blue Bird Circle Rett Syndrome Center at Texas Children's Hospital at Baylor College of Medicine. This is the epicenter of Rett's like what the Mayo Clinic is to cancer. It's the center for everything new relating to Rett's and I wanted to get there. A few of our doctors had already mentioned it, gently suggested it may be good for us to go. I tried not to think of the financial well, everything, that it would take. But how did I know if I never tried? Day 3 of our diagnosis and I'm grabbing at the practical. I can't live in this cloud forever.

The woman who answered was as sweet as could be. "Welcome to our family," she said. "We're going to take care of you." As I learned who we needed to see, where and why, I thought about what my dad says in really overwhelming situations.

"How do you eat an elephant, hun?"

"Eww well uhmm never really thought about that Dad."

"Bite by bite, piece by piece."

Next, I was on the phone with our insurance company. Then I was requesting a case number to see what they needed in order to approve us to go. Then I said a prayer, and asked to speak to the head nurse who oversees the cases. I told her everything. And suddenly, something happened. She threw out my case and said we were approved and could go as many times a year as we wanted and all we had to pay was our co-pay.

I texted Manny, who got on the line with his best friend from college, Adam, who is also Anna's godfather, and whose daughter Manny is also godfather of, and who is also studying medicine in Houston, Texas. Where do you think he would be studying? His college shares a campus with Baylor College of Medicine.

Doctors, covered. Housing, covered. Now, it's how do we get there???

So Anna's first appointment at the Rett Center in Houston is April 28. We will see a leading GI, Dr. Kathleen Motil, who specializes in Rett kids (we have had many GI issues with baby gal) and she will also look at her nutritionally. A lot of Rett kids are malnourished, even if they are really good eaters (like Anna). On the same day as the GI, we will see one of only a handful of Rett specialists in the country, Dr. Jeffrey Neul, who actually trained directly with the doctor and scientist, Dr. Huda Zoghbi, who discovered the gene that causes Rett and is the leading specialist on the syndrome. And, not too surprisingly, Dr. Huda is doing all of her research there! I called her office to see if we could meet with her, and they said Dr. Neul was her apprentice of sorts and if we wanted to give her a call while we were down there or even shoot her an e-mail, here was her info. It felt like a family of people who were just waiting to hug us and help us.

The second bit of good news is that I contacted the NIH (National Institute of Health) in Bethesda, Maryland, and Anna has been accepted into one of their clinical trials that is currently recruiting! I will hear from one of the leads in the studies tomorrow morning, and they will cover our travel expenses to and from the NIH, as well as house us in what they called "the Children's Hotel" for kids and their families who are being studied there.

These two... shall we call them breakthrough's??... Have helped me see that even though this road will be a long one, we have no way of knowing the future, but if we can handle the present and succeed at taking part in our every option, why shouldn't we?

Now, Manny and I will start praying for pennies from Heaven!