Slice of Rett Life: Tea Party Dreams

By Vanessa Covington

In the corner of my daughter’s room sits a child-size wicker chair. Not quite blue. Not quite Lavender. I bought it for Martilee’s first birthday with anticipation of tea parties, teddy bears and dress-up bonnets. I dreamed of special mommy-daughter times—escapes from the world of her two older brothers and bugs, balls and guns made of sticks. I knew it would be a while before she was actually old enough to sip juice from a miniature tea cup and make-believe her bear was a royal guest. Until then the chair could sit in her room; a throne awaiting its princess.

Shortly after her first birthday my little girl’s life became filled with doctors, blood tests, EEGs and more doctors. Instead of dreaming of tea parties I wondered why she could no longer hold her sippy cup. Instead of anticipating her saying, “I love you, Mommy,” I questioned why she had stopped babbling. How would she ever run into my arms for a hug when her legs couldn’t hold up her tiny body? How could she play make-believe when reality was she may have a terminal illness?

While still searching for answers, our family prepared to move to another state. Gathering up things to sell on a yard sale before the big move, I pondered that little wicker chair that was never quite the right color to match the room. Maybe I should just sell it. After all, my tea party dreams seemed to be fading right before my eyes. But did giving up on those dreams mean I was giving up on Martilee’s future?

Soon after settling into our new home we got what we had been searching almost a year for. We had a diagnosis for our precious little girl. She has Rett Syndrome, a neurological disorder that affects speech, hand skills and coordination. It can also include seizures, irregular breathing, curvature of the spine and a myriad of other symptoms. Martilee is 3 now and her life is filled with physical therapy, speech therapy and occupational therapy. She may one day walk with assistance and she is learning to communicate in new ways. An arm brace helps to control the almost constant movement of her hands.

There have been some rough times and I have shed lots of tears. But I didn’t sell that little wicker chair before we moved. It is in Martilee’s new room now. It is as much a part of her room as the antique iron bed and the angel quilt that her Grandma Dixie made for her. This spring, Martilee sat in the chair for Easter pictures. Her brothers, one on each side of her, were instructed to “grab her quick” if she lost her balance and started to fall. She looked like a princess sitting there with her royal guards protecting her.

I haven’t given up on those tea party dreams, only altered them a bit. Delicate china cups may never be a part of our special mommy-daughter times, but as I hold her plastic sippy cup to her mouth I am thankful for every moment that I have. She may never speak the words I long to hear, but her beautiful eyes and engaging smile help me make it through the most difficult days. That little wicker chair will always have a place in Martilee’s room. Not quite blue. Not quite lavender. My dreams aren’t quite what I anticipated, but just as that chair was a gift to my daughter, she is a precious gift from God.

I need to call Grandma Berta now. About the time I bought that chair she bought an adorable miniature tea set. She was dreaming of special Grandma and granddaughter times. It is still sitting on a closet shelf unopened. I think it would look perfect sitting next to that little wicker chair.

Note about this blog:

Vanessa Covington is the daughter of board member John Schaffner, a RMRA supporter for many years.