Note: Parents who have chosen a variety of schooling options have shared their educational wishes for 2016. This is the final installment in this year’s series.
by Jennifer Wilmot
Seven years ago, my daughter was born a beautiful, pink baby girl: six pounds, six ounces, ten fingers, ten toes, and a full head of hair.
Since then, my entry into the world of special needs parenting has been a persistent whirlwind. My daughter has Digeorge Syndrome, also known as 22q11.2 deletion — the most common genetic syndrome you’ve never heard of, second in incidence only to Down syndrome. In those first few days, I had absolutely no concept of what being the parent of a medically complex, special needs child would be. What would our future look like?
Since my daughter was about two months old, we’ve had two to four therapy sessions a week, every week, for seven years. This special girl has worked so hard for what so many take for granted. I would read blogs about “new mom guilt” but could never relate to the breast-fed-vs-bottle-fed controversy. I only longed for my tube-fed child to gain weight and eat by mouth those first few years. We celebrated every ounce she took in. Like all parents who want the world for their child, my husband and I did everything to provide the best care and intervention we could.