Cerebral Palsy, Epilepsy, Our Son, Parenthood, The things people say, Toronto

‘How are you coping?’

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.


 

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8 thoughts on “‘How are you coping?’”

  1. Beautifully written Kara and something I can totally relate too. Hope Seb continues to thrive at Nursery school, that Ali comes home early one night son and that you enjoy all those beautiful play dates xo

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  2. As a respite worker and sometimes, esentially a third gaurdian to some of the kids I support; My favourite question is “oh and what is she/he doing now?” I have gotten this question many times when I run into old teachers, BT’s or other professionals. I always answer, “they are doing great, they enjoy their music program, they love playing with their friends and we are enjoying being part of their community (I can only share so much because of confidentiality). I am then told by the profeesional, “that is great, but what are they doing?” (accompanied by a concerned look and turned head). I then realize they want to know where the child is in their physical development and if they rolling now, where they are in their phychological development and if they now what things mean?!? I actually have had people say that, “does he now respond to what people are saying and does he know what they mean?” Well, he does and always did, but his communication is different and he needs time to process things that wasn’t always given in the appointment time we saw you in. Wait, do I have to answer that? Do you ask most people “what are you doing now? or how are you doing?” Our kids are always defined by their disabilities. I have definetly done my part to advocate and change the way people ask questions. It is important that they know that like any other kid there are struggles but as parents and/or gaudians we don’t focus ont hose things. So, I sypathise with you when asked that question byt he nurse.

    Cheers till next time

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  3. Another fantastic post Kara. So eloquent and true!
    It is a very odd question. Rather random when the context isn’t clear! The word ‘cope’ is such a funny one. I am sure I’m not the only one who often hears ‘I don’t know how you cope’ or ‘I couldn’t cope the way you do’. It is such a nothing kind of comment because really, what is the alternative to not coping? I think we all have to cope with so many little challenges all throughout life, that to throw out questions or comments about coping is never particularly helpful or easy to reply to.
    In fact, I am so baffled by these questions and comments about coping that these days I answer – What do you mean?
    Thanks for such wonderful words on a Friday afternoon :-). I hope you have a great weekend and Ali is home to enjoy it with you!
    Dianne
    XO

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  4. What an interesting way to look at things. I don’t think anyone has ever used the word “cope” with me before, and I probably would have thought the same things you did. I almost feel that if I were “coping” with my son having cerebral palsy that it would feel like a burden. And Wade, cerebral palsy and all, is anything but a burden! I think you have a beautiful outlook!

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  5. The word does seem so doom and gloom and I understand how you’d feel this way after such a question. Keep your perspective, it’s one of the most beautiful things our kiddos have given us.

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  6. Thanks for all of your comments! I just realized I can reply individually to each one, in the future I am going to make of of a point to do that. I appreciate your thoughts and your visits to our blog!

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