Tag Archives: Developmental Delay

Too Much To Wait For

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Tomorrow’s the day.
We are tucked in our beds. Savannah’s suitcase has been re-packed with EEG-friendly clothes. We have reached the food prohibition time. Now, I am waiting for her to fall asleep so I can hide the snacks and water and everyday clothes. Then I can pull out the toys I’ve snuck along, just for a hospital surprise, in the hopes she’ll play with them.
The rational part of me wishes she would go to sleep. Midnight has passed, my body is tired, and the shuttle leaves bright and early. The realist part of me knows that even if Savannah was asleep and the food was hidden and the toys were packed, I would still be lying here awake. I would be waiting for tomorrow. Waiting for the shuttle, the anesthesiologist, the insurance approval.
There’s too much to wait for to sleep.


the Bike That Wasn’t Pink

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When Savannah was three she would cling to the padded pink handles of her princess bike, hands gripping from underneath instead of above. She’d petal her legs and squeal “wee!” with each press of the pedal that lurched her forward. Slowly and cautiously she sputtered around our apartment and then and eventually our house.

“Wee! Wee! Wee!”

At five, after we moved her away from her friends and family to a new state to find her voice, she looked out the window at the new neighborhood kids riding their bikes. She took my hand and lead me down the stairs then down the basement stairs and to her bike. She climbed on her larger pink bike still with its training wheels, gripped the pink padded handles from underneath and sat there. She sat there and then she sat there and then she cried. She knew she should know what to do, but she didn’t and so she cried some more.

Savannah was eventually put into physical therapy to help with gross motor skills and motor planning. One out of eleven goals was to learn to ride a bike. The bike was large with three wheels. It had an ugly curved black back support, a belt and clunky non-pretty pedals.

No part of the bike was pink.

One year later Savannah was riding the ugly bike with minimal help from her therapist. (Steering was still a challenge!) Savannah was so proud of herself. It was fun. It was typical. It was something she could with friends. Savannah loved physical therapy. There she could ride a bike. Unfortunately that is the only thing she could do. Despite her best efforts, she had not met any of her other goals. The insurance company decreed the physical therapy was not helping and services where discontinued.

Savannah lost her bike. For the past five years, we have tried to obtain an adaptive bicycle. We have applied for grants, for government programs, for private programs and jumped on every waiting list we could find. We are still waiting. Each day we wait is a day Savannah cannot relate with the neighborhood kids. Each day she gets older, the more awkward it becomes.

There is a new contest. Please vote and help Savannah get her bike.

https://www.friendshipcircle.org/bikes/triaid/


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