Getting Ready....

Late Saturday evening, I was finally able to get around to filling out 25-pages of medical history for the Rett Center, as well as faxing them all of the different tests they would need for our visit this week. (Think EEG's, EKG's, MRI's, swallow studies, history of medications, hospitalizations, as well as forms asking about Anna's development.) How do you like our new 2-inch binder of the past 11 months? It keeps me amazingly organized and focused!

Last night, it took me a good three hours to sit and focus on everything the Rett Center had mailed to us in preparation for our visit. It was the first time I had seen a developmental sheet that really pertained to Rett girls, and it was eye-opening, to say the least. They had columns next to each development: "Acquired." Then "Lost." And finally, "Regained."

It was hard enough for me to sit and contemplate at which month Anna acquired a certain skill, but then it was equally difficult for me to sit and think when she perhaps lost a part of that skill, and then to ask myself, has she regained anything?

I was left to calm myself down afterward, with a nice glass of shiraz and a good prayer, to remind myself she is still young, and a beautiful 21-month old with a smile and laugh who lights up our lives and whose personality comes out more and more everyday. But I can't say filling out these charts and intake histories was easy. I can't say that I just chose not to look far into the future and worry. I have my moments, especially when, in front of me, is a 25-page initial history form asking what she has acquired, lost, and perhaps regained. This is by far the hardest thing about this diagnosis. Not knowing and wondering if our efforts are in vain.

Anna has acquired a lot in the past few months. She has become a different baby - she is actually a little girl now - and with all of the stimulation she is receiving from Early Intervention and our wonderful, dedicated therapists, she has grown so much. But one area I had to truthfully mark "Lost" is the significant decrease in Anna's babbling and cooing. Her speech therapist works so hard, and hopes to hear just one "BaBa" out of her, but even after 30 minutes, we hear nothing.  A few months ago we heard so much more.

Right after the diagnosis, that very realization would have brought me to a puddle of tears. But I don't know whether to attribute this to Grace or the very Strength He promises us, but instead of looking at the "Lost" category, I instead look at what else we have acquired... Anna does communicate with us. Anna finds ways to let us know what she wants, needs, or is thinking. She speaks to us in different ways. Do I want to hear her say "Mama"? Of course. Do we hold out for the day we can hear "Dada" or "Gabe"? Absolutely. Our faith is not lost. But while we travel on this journey, I can't focus on the "Lost"... Because for every thing we lose, we gain in other ways.

We are not just teaching Anna. Anna is teaching us.