Four years ago when Sophie was diagnosed with Cri du Chat Syndrome I was overwhelmed with sadness and allowed myself to wallow in anger and pity. I thought that having a child with developmental delays was the worst punishment life could have handed me. I tortured myself mentally and emotionally obsessing about what the future would look like for her, for myself and my family. Little did I know that developmental delays would be the least of my worries.
You see, as the years have passed and my daughter has grown her developmental delays while very present and apparent are no longer consuming me. We have fallen into “our” normal and we see her and accept her just the way she is and for us, for me that is enough. It’s not that I don’t feel a sense of loss for who she might have been had her fifth chromosome been complete; it’s that I don’t focus on the what if’s anymore.
Even worse than having a child with developmental delays for me is having a sick child. In the last four years my daughter has been to more than two hundred doctors visits. She has had three surgeries, over a dozen X-rays and about a half a dozen CT-scans and MRI’s. Let’s not even get into labs work, swallow studies and dozens of other non-specific studies looking for answers. She cannot make it past a few weeks without an infection and her health is not improving despite my many efforts.
You see, the sickness is limiting her exposure to life. It has nothing to do with her delays or sensory processing issues because we can adjust to those issues. It’s the living in the glass box that is the hardest. How will she experience life if it’s impossible to let her experience it?
Worst of all is the fear of losing your child, far worse than knowing your child is developmentally delayed. You wake up multiple times every night just to see if your child is still breathing, afraid of every fever and the uncertainty of whether the next treatment for the next infection will work to keep your child alive. The suffocating dark feeling that floods every cell in your body each time a new symptom arises. The heartbreak that accompanies each new diagnosis and loneliness and desperation you find yourself in as you try to move forward and make it through another day.
So for the record Cri du Chat Syndrome is not the worst thing that life could have handed me. My daughter’s deteriorating health IS.