Glitter in the Hour Glass

Every day she slips away. Every day a little further from me. I want to grab her and hold onto her so tightly and keep her from slipping through my fingers, but she’s getting too old for that now. Eleven isn’t really the age to be cradled, even if you are disabled. Eleven is the age of boys and fashion and acne and periods. Even if you are disabled, even if you can’t say your name or brush your hair or tie your shoes. Eleven is the age for growing up.

I want to stop the clock. Even moreso, I want to turn it back. I want to watch the hands go left as fast as they went forward. I want to go back to when skills were celebrated, when laughter outweighted tears, when hope lit up the future. I want to go back to before I knew things would only get worse. I want to go back to when it was okay to cradle.

That’s the thing with regression, you never know when it’s going to hit, never know what it’s going to hit, never know each morning what’s possible. That’s the thing with regression, it takes away the hope of the future. It takes away the joy of the moment. The success for today may be the loss for tomorrow. Nothing is sustained and everything has the potential to slip through your fingers.  Every day I fight to find her, to hold on to her, to save her. Every day I fight to keep my fingers closed tighter so less of her slips through.

Savannah is disabled. You can call it special needs, but it is a disability. While there is plenty that is special about Savannah, there is nothing special about losing abilities. Abilities are stolen from Savannah without regard. Without pattern, without expectation, without reason, skills vanish. They never fade. Whether social, academic, gross or fine motor or self-help, they are all susceptible to the Vanishing. A few are susceptible to success. A few skills find their way back fragile and broken. Sometimes they appear like they never left at all. There is no patten. It is the ultimate magic trick.

At four years old, we sat in the reading room of our first house, in a recliner that once belonged to my grandmother. A stack of index cards waited anxiously on the chess table before us. Incredibly, I remember it was a Sunday afternoon. A sunny day during a Texas summer isn’t actually that remarkable, but it does make the memory shiney and bright like its been laced with glitter.

I placed a marker in her perfectly soft hand, and wrapped my fingers and hers. Slowly, we began to write S-A-V. “Can you feel it?” I asked. “Can you feel that?”  The marker slid across the slick index card. Over and over. Frictionless. “This is what your name feels like.” Finally, I let go. The first time she wrote her name she misspelled it. The second time it was perfect. Then there was the third and forth and fifth and index cards filled up with blue Savannahs. By the end of the week, the first two Savannahs were framed and hanging in my office. Three months later, her fingers didn’t remember how to hug a marker or pen or crayon.

That was seven years ago. It took four years of occupational therapy before her fingers remembered markers. Five years to remember how to colour. Six years to remember how to write her name. Seven years and counting to remember how to do it without help.

Eleven years old is the age to write your name without help. Eleven is the age of purple markers, not blue. Eleven is the age you hope to find the skills you had at four.

I wish I could turn back the hands of time. I wish I could go back to smooth blue markers, hours of cradling and days filled with glitter.20130429-130458.jpg

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