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.
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. At that same time, through our fog of frequent surgeries and interventions, we watched as the Great Recession extended to our city. Like many families, we experienced the effects firsthand through our work, and our family scrambled to make ends meet. Mortgage payments and insurance bills began to drown us, and we ended up foreclosing on our first house, just in our early twenties.
I write all this to paint a picture of the brokenness I felt one day at a therapy session in clinic for Josie. Our wonderful therapist had the habit of recommending therapy tools to aid in our daughter’s development. Our therapist would ask, did we have this toy, that seat, or like on one particular day, she mentioned casually how much a set of toddler markers would help with Josie’s hand strength.
At the time we were doing whatever we could to purchase food and gas and keep the power on. And I remember when I stopped at a stop light that day on the way home, after being told to purchase a set of markers and knowing full well we couldn’t even afford something as small as markers, I cried out if God was there and would He please come through so I could provide the tools Josie needed. I could not navigate this path without assistance. I have never felt so helpless as in those first few years.
But my prayers were answered. I cannot believe that the Personal Learning Scholarship Account is anything but a miracle. Yet you don’t have to be a religious person to understand how much of a blessing it is for special needs parents to receive a scholarship that funds the therapies, tools, art supplies, musical instruments, books and school supplies to help these beautiful children reach their full potential.
My wish is for each parent of a special needs child. It’s for anyone struggling with poverty, guilt or heartache. I wish that they receive a miracle, too. I am grateful every single day since I learned of this scholarship almost two years ago, and I hope parents everywhere will soon have access to similar forms of support. My daughter Josie is now truly thriving in this moment, and I couldn’t wish for more than this.