Entry Forty One- Humbled

It is so easy for me to sit in my own worries. I am humbled as I learn of other people’s experiences.

I went to the hospital for an outpatient neurology visit last week. At this time, I truly have nothing to complain about. Oscar has been developing in a really positive trajectory and we have been fortunate that his seizures have been medically managed.

During the appointment, as we were discussing Oscar’s obvious speech delays, the neurologist reminded us that with Oscar’s diagnosis most children have moderate to severe language deficits. I think that I have been in denial out this and today this reminder hit me.

After the appointment I was sitting just outside of the clinic wallowing in my own worry. How will Oscar be able to advocate for himself when we aren’t around? How will he communicate his wants or needs?

Then I overheard a conversation…

There was a young mom pushing a stroller with a young child inside. Maybe Oscar’s age? Maybe younger? I overheard her on the phone summarizing her child’s medical appointment with her spouse. What I overheard was this… the child is on 2-3 different seizure medications, CBD oil, and has failed the keto diet. (I have learned that the keto diet for epilepsy is an extremely regimented program, not at all like the fad keto diet. Because it is so regimented, it is used only after the child doesn’t achieve seizure control with medication). Neurology is now considering a hemispherectomy (where half of the child’s brain is either totally or partly removed) in an attempt to control their seizures. And here I am worrying about speech… humbling.

I marveled at her strength. She was calm, she was collected, she expressed that this was the best thing for her child. And because of that, she seemed at ease. She has clearly been through a lot with her child (like many of you have) and has been through a lot for a long time for her to seem comforted by this news.

This mom was young, her child was young and was able to sit in a regular stroller. I watched her walk to the bank of elevators. I imagined her leaving the hospital, walking to her car or walking home and thinking that she would come across as any other mom taking her young child for a walk. If she wanted to, she could “blend in” and no one would know the news she had just received. I was hoping that people would be kind to her.

My son has a lot of challenges. But so many people have it so much worse.

I am humbled every time I sit in the neurology waiting room at The Hospital for Sick Children. I am humbled every time I peruse the various support groups that I belong to on Facebook. Sometimes I feel silly sharing my worries when other people’s worries are so much greater.

Everyone is going through something, whether they choose to share it or not. My journey with Oscar has really taught me that message.

Photo Taken: December 2020

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