It is hard to believe that my daughter will be 21 this month. When I was five months pregnant, I went for the usual ultrasound and expected nothing out of the ordinary. When the technician said he needed to consult with the doctor, my world turned upside down. Our unborn baby would have hydrocephalus (enlarged cranial ventricles). My husband and I quietly drove home and I immediately went to bed and sobbed for hours. I felt this was a death sentence. There was still a lot of stigma attached to disabilities. Little did I know, it would be an adventure.
For years, I felt ashamed and didn’t know what I did to deserve this “hard life.” No one else I knew took their babies to physical, speech and occupational therapies, not to mention neurology appointments. Why did my preschooler have to be subjected to so many medications to control her seizures, and why didn’t any of them work? Why did her seizures only get worse?
And then I read “Welcome to Holland,” a short essay describing a mother’s journey about parenting a child with special needs. The mother expected a child that was typically developing and instead, she had a child with special needs. In the essay, instead of vacationing in Italy (the typically developing child), the author ends up in Holland (the child with special needs). The author writes that there is just as much beauty to appreciate in Holland as in Italy.
Although I was comforted by the essay, it didn’t really prepare me for the stark reality of life with my child. Every year that passed I was reminded of the developmental milestones she didn’t reach. A week or so before each of her birthdays I would get in a “funk” and not understand why. What I know now is I was grieving for what I didn’t have: a child that was typically developing.
My daughter didn’t walk at a year old, nor did she talk by her second birthday. She didn’t get her driver’s license at 16 or go to college after high school. She will never get married, have her own family or live independently. My husband and I recently had to file guardianship, which means she is legally incompetent. It took me three years to accept that we would have to do this. Typically it is done at 18, but we waited. It was hard for me as it meant defeat and acceptance of my “lost dream” that my daughter would someday be able to take care of herself.
But is having a child with a disability all doom and gloom? Reflecting on the past 21 years of life with Gabrielle, my answer is NO. Although there has been pain and sadness, there is so much more joy and unconditional love I know I could not have experienced elsewhere or from another human being.
What my daughter cannot do does not define her. Instead, I have discovered to embrace who Gabrielle is as a person and what she brings to my life and the lives of others. Gabrielle is a strong-willed, friendly, loving, determined and resilient young woman who faces challenges with a positive attitude. I call her “my sunshine” as she radiates light in my life daily. She always has a smile on her face and even in the midst of a seizure, she is asking how am I doing?
So when May 28 arrives, I will count my blessings and celebrate my daughter, just as she is.