Preface: I simply love the women at Sebastian’s pediatrician office. The receptionist is amazing and saved me from being thrown out onto the street by the parking attendant earlier this year. But that’s another story. I think the doctors are great, we’ve seen three of them, although we have one who is Sebastian’s main pediatrician. And the nurse, well she is certainly friendly and great at giving Seb his vaccines. So far he’s had two from her and he hasn’t shed a tear either time.
Today the nurse really caught me off guard. When she walked in to see us she had the brightest smile and hello for Sebastian. And then she looked at me seriously and asked in a most concerned tone, ‘How are you coping?’ I just stared at her, thinking does she know something about my life that I don’t?! I did a mental scan through the lists in my brain to find what she could be referring to.
How am I coping with…Car insurance and their inability to accept my driving history beyond 5 years? The stress/worry of not being able to pay for the therapies and equipment Sebastian needs? The evenings alone while my husband works late on a special report? Moving to a new country and getting settled? Thinking about which neighborhood to move to next year? Or what school Sebastian will go to after nursery school? The fact that it is still winter? Keeping doctors appointments juggled with therapies and school and not being able to just hang out at home with my son? Keeping track of seizures that I wish would stop? Deciding which writing project to work on today? Creating a schedule for March Break with includes all the play date requests from friends at school because Sebastian is so loved? Hmmm. I’m pretty sure she doesn’t know about any of these things. And neither did most of you!
Staring at her and thinking about her comment, and her lack of knowledge about my personal/family life, I concluded that she was likely asking how I was coping with my son’s disability. His cerebral palsy. Cope: to contend with difficulties and act to overcome them. Is cerebral palsy something we need to or even can overcome? He is my son. He smiles. He laughs. He whines. He likes the water and swimming and music. He has friends at school who love to play with him. He is curious about the world around him. He likes to go down the slide really fast and kick his legs under the water in the bathtub while floating on his back. He likes to jump off the kitchen counter while I hold him up. He makes me feel wonderful and happy. We read books together and talk to Abby Cadabby on the Tobaloo. We paint pictures and make birthday cards for friends. We giggle with each other in the car on the way to school and take naps together in the afternoon. We love each other. It’s true, he does have cerebral palsy. But that does not define who he is. And it does not define our life, even if it does occupy a part of our lives.
I love being around my son. Being his mother is not something I have to cope with. When he was newly born and I couldn’t figure out how to make him stop crying and I wasn’t getting any sleep, I was coping with a lack of sleep. And my inability to read his mind. Which I didn’t overcome, but I got better at. And I sleep now. And so does he. When he had to live at the hospital for weeks until he could come home, I was coping with being apart from my newborn son at night. When he had to go in for tests, I was coping with the fear of what the results would say. When we were faced with a diagnosis we new that would come, I had to cope with the news in that moment and the first moments afterward. When Sebastian wasn’t ready to nurse, I had to cope with countless hours pumping my milk for him. When I learned we would be moving to Egypt when Sebastian was 3 months old, I had to cope with starting over in place completely foreign to me. These were all difficult things that we overcame. Together. As a family.
But even during these times, I never felt and no one ever asked, ‘how are you coping?’ So hearing those words today, nearly three years later, was kind of a sucker-punch. These words, unexpected, stayed with me for the rest of the day.
Yes, there are challenges. Life is not without challenges. No life is. But coping? Is being a parent to a child with a disability something that I have to cope with? It sounds like the death sentence. Blech. We were there for a vaccine. And yes, we had to get the Disability Tax Credit forms signed and completed by the doctor. But Sebastian having cerebral palsy is not something I have to cope with. He has always had it. He will always have it. It is a part of our lives, but it does not define who we are. So stop feeling sorry for us and instead ask us about the things that make him happy or the new things he is doing. Because there are so many.