Entry Sixty Three- “Fix You”

“When you try your best, but you don’t succeed

When you get what you want but not what you need

When you feel so tired, but you can’t sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something, you can’t replace

When you love someone, but it goes to waste

Could it be worse?

Lights will guide you home

And ignite your bones

And I will try to fix you”

“Fix You” Written by Coldplay

I have always been a fan of the band Coldplay.

Many years ago I remember watching a youtube video of a father who had taken his autistic son to see a Coldplay concert and while this song was being performed, this little boy cried. It moved me. It made me realize how impactful music can be.

Years later, we learned of Oscar’s diagnosis. My initial instinct was to “fix him”. We dove into all therapies, both modern and natural medicine, and I also began researching stem cell technology. We had had cord blood taken and stored for both of our kids when they were born. My research taught me two things 1- Oscar is too young (at that time he was just a couple of months old) for any stem cell therapy and 2- His stem cells also have the genetic deletion so they would be useless.

Grief hit.

I can’t “fix him”.

“Fix You” by Coldplay was on my running playlist and I would run, listening to this song and just cry. (Wearing sunglasses of course).

My uncle introduced me to a podcast called “Unlocking Bryson’s Brain” and Episode 6 is titled “The Ethics of Cure”. During this episode, Bryson’s father discusses the ethics of finding a cure and wondered if by finding a cure it suggested that there was something wrong with his son? I had never thought about it that way.

Of course my instinct was to “fix” Oscar, to make him as “typical as possible”. I would fix his epilepsy. I would cure that in a heartbeat if I could. But the truth is, the rest of him is perfect. He does have his challenges. He is very delayed. He is nonverbal and struggles with communication. But he is the sweetest little boy who doesn’t need to be “fixed”. He needs to be supported, accommodated and loved.

Photo Taken August 2021

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