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Posted on March 13 2017
I am the mom to a child with special needs. My son has special needs, a disability, a rare chromosomal abnormality. Technically, Graham has Cri-du-Chat Syndrome or 5P-. There was a deletion on the short arm of his fifth chromosome. He has special needs.
How did we get here? We got here by fighting, by pursuing, and by being his parents. On March 17, 2016 our lives changed forever as our first child entered the world at 5:55 AM. I whispered to my husband, as I held him for the first time, “he’s perfect”. As the days and months went on, I noticed things weren’t going as they should. Graham wasn’t meeting milestones. He was behind. We went to doctors and specialists and no answers. We held onto hope that he was “just a little behind” and that he would catch up. You read stories all the time about kids catching up, but the trend continued. We enrolled him in physical therapy and feeding therapy and saw major improvements, but still not where he should be. On top of it all, I was secretly battling postpartum depression and anxiety. Not a good combination. We didn’t let the world know that we were struggling and how badly we were hurting. We kept on searching for answers.
Finally, on September 23 Graham had an MRI on his brain. The pediatrician called and said that everything looked fine, no abnormalities, and the hope surged. Then, about 20 minutes later he called back after speaking with the neurologist, and said that Graham’s brain was smaller than average. It was structurally normal, but small. I fell apart. My hope was gone. We were back to the unknown, the unexplained. She assured us that this didn’t mean he had a disability and that his brain could continue to grow and, again, catch up. She referred us for genetic and metabolic testing to rule out other things, so I took my baby and watched and held him as several tubes of blood were taken and he screamed. I cried and he screamed. I watched as he sat with a bag on him to collect a urine sample. I’m supposed to be enjoying my baby and seeing him grow. Instead, there I sat in the doctor’s office again. So, off went the blood and the urine and up went the prayers. Begging God to bring normal results.
On October 7, 2016 I experienced the worst day of my life. God did not bring normal results. Graham now had a diagnosis- Cri du Chat Syndrome. Only 50-60 babies are born with this each year in the US and it happened to us. It happened to Graham. The thing I feared most in the world became my reality and all of the sudden those words rang in my ear “he’s perfect”. Someone was telling me that he isn’t perfect; he’s missing a piece of him. A piece of his little body was “terminally deleted”. Those words pierce and sting and burn. My world collapsed and I fell to the floor, shattered. I’ve never felt despair like I did that night. I’ve never felt emotion like that and didn’t even know you could feel that devastated. I ran and wanted to leave forever. The only word strong enough is shattered and that doesn’t even do the trick. I can’t even share the details of that night because they are too painful. I told myself that I couldn’t do it. I can’t be a mom to a baby with a disability.
“I don’t deserve this”, I thought as we visited the neurologist, the geneticist, the ENT, the cardiologist, the physical therapist, the speech therapist, and the list continues. Then the day came and a switch flipped. I vividly remember walking out of the neurologist’s office with my husband and we had a long conversation. Then and there we decided that there is a calling in this. There is purpose; we just have to find it. We have to choose joy. We have to be brave for him. That was the moment I chose to be Graham’s mom, regardless of diagnosis. I embraced the path I was given.
I sit here five months later and we are doing it. We didn’t deserve this diagnosis, but Graham deserves us. He deserves the best life we can give him. He is already beating the odds. He is the sweetest and happiest little boy. He is our fighter. He inspires us every day to be better, to advocate, to defend, to ask for help when we need it, and to love unconditionally. He is going to change the world and his inspiration has already become apparent through him and through us. This is just the beginning.