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My On-the-Job Training as a Special Needs Mom

I am a wife, a sister, and a friend. I am a woman who at the ripe old age of 31 lost her mother and also became a mother. I’m passionate, kind-hearted, and very stubborn. I go with the flow and try to see the best in people. I believe all things happen for a reason (even the bad stuff, sigh) and that sometimes love just isn’t enough. I’m not perfect, and I don’t try to be. I tend to have a pretty bad potty mouth (except in front of kids—gotta keep it clean), and I have no intention of changing that. Who am I really, though? Why was I put here? I’ll tell you: I’m the mother of a “special needs’” child. I’m a mom who is operating under the label “special.” I am, in every way humanly possible, especially proud to be her mom. She is the reason I left my promising career and the reason you are sitting here reading this. I am an advocate and a caregiver. I am scared, and sometimes I cry in the shower.

Devastating Diagnosis

In December of 2013, when she was four months old, genetic testing confirmed our daughter Miranda had an ultra-rare genetic condition called WAGR Syndrome. She is missing part of the short arm of chromosome 11, which is the region that sustains eye growth and proper kidney development as well as an array of cognitive and motor functions. She is legally blind, wears glasses, and is learning to walk with a cane. Her kidneys are checked every three months for Wilm’s Tumor (she has a 57 percent change of getting kidney cancer), and she has numerous therapies and teachers in her complex special needs classroom. Miranda’s WAGR Syndrome diagnosis was, as you can imagine, devastating to our family. My husband and I were first-time parents, just trying to navigate this brand new world with a newborn, when the universe decided we were meant for something more. It had another plan for us. We slowly began to grieve the loss of the child we no longer had, and although it took a while, we stopped asking questions no one could answer. We embraced our daughter for who she is, and once we let go of the grief, we were rewarded with a clean slate and found staying proactive was the right path for us.

The Journey Begins, and Never Ends

Fast-forward three and a half years, and here we are, celebrating her fourth birthday. We have had hundreds if not thousands of hours of therapies, and we have been seen and evaluated by countless doctors and therapists. Miranda now attends preschool and is in a classroom built for children with complex special needs. We have set goals and achieved them. Some came easier then others, and some we are still working on. Word by word, we build her vocabulary, and day by day, we give her the tools she’ll need to communicate and succeed in school and socially with her peers. It is still sometimes difficult to see other children of the same age thrive in situations and watch mine struggle, but I try to always remind myself of how hard she worked to get to where she is. I try to remain focused on her strengths and keep an eye out to make sure she can grab my hand, should she need it.  Her tenacity, humor, and strength cannot be matched. Miranda meets every challenge head on. She has never given up, and neither will we. I am so grateful that she chose me to be her mom.