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Whispers of Joy

April 20, 2012

According to aerodynamic laws, the bumblebee cannot fly. Its body weight is not the right proportion to its wingspan. Ignoring these laws, the bee flies anyway.
~ M. Sainte-Lague

When she was a baby the doctors told me she was having seizures and that her loud heart murmur combined with her severe heat intolerance was something of great concern.

They were wrong.

When she continued to present with significant gross motor delays and persistent hypotonia, they told me she may never walk.

They were wrong.

When they found some abnormal blood test results, they told me she had liver cancer.

They were wrong.

When they found more abnormal blood results, they told me she had ataxia telangiectasia and that she was dying.

They were wrong.

Since that time, the doomsaying doctors have started to score on some of their predictions. She has had regressions, lost her speech and her sign language – virtually all of her expressive language. She has lost eye contact, and withdrawn into her own little universe. She lost some fine motor skill, including the ability to isolate a finger to point to a picture or push a button. She has developed some form of seizure activity, as yet unidentified. All of this was as predicted by the doctors. More recently she has started aspirating liquids as we see her swallowing ability starting to suffer some setbacks. The doctor told me we would likely continue to see further regression in her hand skill and strength- that she may lose even more ability there.

But today, during a therapy session, I watched as her therapist excitedly cheered to me “Did you see what she just did? There, she’s doing it again!”

She was pointing to touch a button on her iPad so she could choose another Fresh Beat Band song (her absolute favorite band!). She was using just one finger, the pointer, nearly perfectly. She was doing one of those things we weren’t sure she would ever be able to again.

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And there’s more.

She smiles. God, she smiles and she laughs. It had been gone for what seemed like such a long time. She is here, now, more than she is not. She is present with us, and engaged. It had seemed like we were losing her to her own little world.

She makes eye contact more now too. She looks at people when they come into the room. She acknowledges them, then goes back to reading her books.

She has regained two precious signs – “more” and “finished.”

It’s not as though the autism and the disabilities are gone, but rather that we have learned how to work past the difficulties and to work with her abilities. We have learned how to engage her in her own world and to help her learn a little about how to take a small step into ours. We are making progress. Small progress to those who don’t know our children, but leaps and bounds to those who have worked tirelessly with us to get her to this point. I look at the enormous progress my son has made in the two and half years since he started therapy, and I wonder what miracles lie in store for my baby girl.

We have long since let go of the idea that she may speak. The doctors have told us that she won’t. The therapists and teachers all seem to agree. But I can’t help but wonder, if someday…

Bumblebees do fly, after all, and my little Mary is just starting to spread her precious wings.

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