Friday, March 28, 2014

But he does have Gaucher

A Mom's Perspective: getting the diagnosis call

My name is Anita. I am the mom of a 9-year-old boy named Cody who has Gaucher disease. I remember seven and half years ago like it was yesterday. I was pulling the car into our garage. I was on my cell phone. I heard the soothing but firm voice of the doctor on the other end of the line say, We have tested for two diseases. Cody does not have Niemann–Pick disease, but he does have Gaucher disease. My thoughts were, What is that? Is he going to die? What does this mean? I felt numbness, a lump in my throat that didn’t go away for a long time, and guilt. The guilt. This is from me!!! I thought. The doctor continued to say, Thankfully he does have this condition [rather than Niemann–Pick disease], as there is available treatment if needed. Little did I know at that moment that because of the dedication and courage of a handful of individuals, this treatment would eventually become available in Canada. I would be forever grateful to these advocates and love them. Little did I know that I would meet a community of people who inspire me with their stories, who I admire for their acts of courage, and who always make me feel supported. From day one of Cody’s diagnosis, it hasn’t been easy. Countless hospital visits, surgeries, and the difficulty of seeing my child suffer from and endure pain. Wishing every day I could take it all away. But it is our life, and we embrace and get through each day with courage and a smile. I work with children with extreme special needs. Sometimes I just sit back and look at other families going through scenarios I could never imagine. I always think how lucky we are or how much worse it could be. Although Cody’s life may have some limits, I really believe his life is limitless.

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