Tag Archives: coming of age
Every year it comes, the dreaded annual.
Living with a child with disabilities, the grief comes in waves. No matter how long you live in acceptance, milestones come that usher in fresh reminders of what your child cannot do, and the grief floods in again. Another child’s success, a failed outting, the annual doctor’s visit.
Savannah’s annual visits are my downfall. Every year I am reminded not only of how far away she is from her peers, but how far away she is from where she used to be. There is a review of skills she may have lost or that she is having trouble regaining. Annuals are a reminder of what is not blooming.
This year Savannah is thirteen. Thirteen is a whole new level of development. The teen years have begun, and my teen still can’t bathe herself. But this year, there are things my child can do.
In the past twelve months (really just the past six), Savannah has gone to the theatre for the first time; she is getting 80’s-100’s on modified AR tests; she is following directions; she is controlling her anxiety; she has pet, more than once, both dogs and cats; she can type her first name without help; she will spontaneously use her AAC device to communicate; she has eaten in more restaurants; she helps with the dishes; she is wearing eye shadow and lipgloss.
The doctor sat there stunned at my words of new things and lost skills that Savannah is now able to do. Moreso, the doctor was stunned by Savannah. She teased the nurse and listened to the doctor. She showed the doctor her eyes and nose and mouth and ears. She remained engaged. It was obvious that Savannah was blooming.
Savannah is blooming.
Five years ago, and every year before, Savannah’s weight remained in the 10th percentile. Five years ago, Savannah wore a 7 slim. Four years ago, I could hardly squeeze her into a size 18. Medications had created an insatiable, obsessive hunger. Her weight had grown dangerously into the 95th percentile. Food had to be measured and proportioned. It was hidden in the basement in tubs and re-measured and re-stocked in the pantry each night. Calories were calculated in a notebook every day, every meal, every snack. Sneakers were bought for walking, which turned into running. And now, after four years, the calorie notebooks are being thrown away and new running shoes have been bought. Savannah is officially in the 55th percentile. We will keep the healthy lifestyle, but we will no longer struggle. No longer worry. No longer obsess over food. The days of food rationing are over.
This year the dreaded annual was a celebration. This year, it was a perennial.