Cerebral Palsy, Epilepsy, Health, Our Son, Parenthood, Seizures, Toronto

Paper

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Do you know what it’s like to have your child monitored by doctors of all kinds? Do you prepare notes and count seizures for your next neurology appointment? Do you cringe at the thought of having him weighed or his height measured because even though he looks bigger and his clothes fit less, on paper he is not growing?

On paper he is a child whose seizures are under control enough to be transferred to a community neurologist. But will they be good enough? You wonder. You worry. The doctor sits across from your child and asks him to do simple things like look at your mama or give me your hands. Your child can do this and so much more. But he doesn’t speak. He doesn’t play like other kids so the doctor looks at his papers and sees a diagnosis instead of a child who loves the world and everything in it. A child who laughs at the jokes in Elephant and Piggie books but the doctor assumes there is nothing inside because he can’t show you in the way others can. A doctor who can be kind but condescending at the same time. Because she sees your child as a patient. Not a child. But he is a child. He is my child.

On paper he is a child that has not grown in cm or kilos in the past four months but he is healthy and happy. A child who now walks 20-30 mins a day in his walker, eating up his calories so on paper it looks like he is not growing. But he is. And you argue with the doctor to remind him that you are the mother and he is your son and he is well. He is more than well. But you know he needs to grow more.  You want to cry but instead you are strong. The tears come like bursts of rain in a storm. Only when you are alone. And you order the next magic supplement and hope it will be the one. You get on a waiting list for a new doctor you don’t want to meet. And you pray. That someday there will be no more doctors telling you how your child, that patient of theirs, number 502, must live his life.

Later you watch your child. Head up. Smiling. Then laughing. He is riding a horse. He is strong. He is growing. In ways which no paper can measure. And you are thankful. And the heartbreak that sometimes comes with parenting turns into happiness. There is your son. And he is happy. He is love.

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9 thoughts on “Paper”

  1. kara, be prepared noe for me to bombard your blog with so much love! seb is devine as are you x Hopefully the appointments lessen and make sure when your bub comes to take some time out from them, time out from reality, just sit and be a family xxxx we love you guys so so much. Can you use your ipad to take a movie of seb to show the doctors just to remind them every now and again?

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    1. Thanks Bron, I’m looking forward to lots of love as well as your blog posts too! We are trying to get all the appointments out of the way before baby comes. Another nutritionist one mid-May and then a couple in June. Seb and I will have a month together of no school and few therapy appointments before the baby comes so we can just chill out and enjoy summer together.

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  2. …and he is beautiful. Every photo you post of him shows his smile. Makes me smile. Makes me show my daughter this wonderful smiling little boy. I so hope to meet him one day.

    And you again, of course! 🙂 Have you any plans to visit the UK again?

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    1. Thanks Chris! I hope our kiddos can meet someday too. It’s nice to hear from you. Thanks so much for visiting and your kind words.

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  3. 😦 so much of what you write feels so familiar, professionals only ever see numbers and figures they rarely see the little people with the big personalities and independent thoughts. Every time I read your blog i realise i need to write more. Hope all is well xx
    Thank you

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    1. Thank YOU Claire! I’m glad I can inspire you to write more. I go through phases where it is difficult to make the time or just sort through my thoughts. If feels good to write and when I do I always tell myself the same thing, I need to do this more often!

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  4. I totally get where your Coming from. I go to at least 1-3 nutrition appointments a month. It always depresses me and makes me mad to listen to a nutritionist tell me how bad my client is doing, what typically developing line he’s not following and that they are so worried. They are not so worried, not as much as I am anyway. When they are the ones making dinners, adding oils, forcing kids to finish that last bit of nutritional drink and feeding you kid ridiculous things like ice cream at bedtime in the hopes they will gain some weight, then they can tell me of their worry. I usually come away depressed and frustrated and even when I try to tell them the positive things, they go back to their rant. I have learnt to listen, say yes and then throw out their prescriptions so they can see me or let them know I appreciate their input, but am not taking their advice, which sometimes seems futile.

    Seb is a great guy and you are a great mom. I have been lucky enough to have known many kids who are now adults. Now that I know what I know now, I don’t worry as much. What I know now is, happiness feeds the heart and soul, those things are much more important in life!

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