August 18, 1993

That's the day she entered the world. It was an extremely hot week in the desert of Twenty-nine Palms, CA. My husband was an active duty US Marine and this is where we would live for three years. There wasn't anything particularly remarkable about labor or delivery, except she was born so quickly that my doctor delivered her in his dress uniform with a mask and gloves. She was instantly here and beautiful and different.

She had a very weak cry, so they scored her Apgar low until they "realized that's all she had". She had a pretty big head (15") and was a bit floppy. When they finally brought her to me in my room, my doctor said these words "You will notice the dimple in her back, that's a lumbar sacral dimple. She almost has an open spine defect, but she doesn't". Huh? What does that mean? I asked the nurse later and she told me not to worry that lots of babies had that. She showed me how to clean it out with a Qtip. The baby slept a lot and they kept waking her up to check her blood sugar (which was fine). They took her newborn picture and we brought her home. Just like you would expect, right?

There is no other word for this baby but delicate. There was such a vulnerablity about her. She had some feeding problems, gagging a lot. Nothing else unusual at that point. She "felt" different. We called her our "squishy" baby, because she was so soft. If we knew then what we know now, that this softness was due to hypotonia (low muscle tone) we would have done so many things different. She should have had therapy from birth. But we didn't know so we didn't do.

She had such an easy going disposition. She grew and eventually hit those milestones. A little late on some and really late on others. "Don't compare her to your oldest daughter, babies are different" is what they told me when I questioned her progress. I listened to them, they were the doctors, who was I to question their judgement? This went on until it came to her speech. Those milestones came and went and that was the one issue they couldn't write off or explain. She was eighteen months old and hadn't said a word yet, not even "mama". She had lots of nonverbal sounds that she made, but nothing resembling words. They were finally going to help me find out what was wrong. It would only take another eighteen months and the help didn't come from the doctors.