The Life He May Never Get To Live
My son, Rowan, will be two in January. At four months old Rowan was diagnosed with Tuberous Sclerosis, a 1/6000, rare, genetic disease that causes epilepsy, tumors to grow in all major organs and development delays including autism.
My love for him is bigger than life itself.
I want nothing but greatness for him, for him to flourish in every way imaginable. And here it is ladies and gentlemen…the “but” we’ve been waiting for: But…
But I hurt FOR him. I cry FOR him.
I think about the life he may never get to live. I think about the jobs he may never have and the girlfriends he may never kiss.
Now, that may seem silly to you “Why would you worry about that? He’s only two? He’ll get there.”
But what if he doesn’t?
This is what consistently weighs in my heart. This is the grief I feel everyday. And I slap on a smile and try to move past it but the grief only comes back and tears me to shreds.
Recently, I went to my best friends son’s birthday party. He just turned one!
His parents are strong. They’ve battled so much together fighting infertility but now they have their little boy and he is just growing up so fast. I should be happy, I should be over joyed. But I’m not.
I’m resentful. I’m angry. I’m jealous.
Their one year old is doing things that Rowan isn’t doing yet. Rowan can’t eat with a spoon or a fork. He isn’t able to talk.
I can’t let him walk around a house without holding his hand for the fear of him being unbalanced due to the medications he takes for seizure control.
I left that birthday party in tears. I cried the whole way home with Rowan in the car seat just looking out the window.
I feel resentment that my husband and I may never be able to experience the things that most parents will. I feel hurt.
I feel like I let Rowan down.
Written by, Nicole Wells
Just a working mom fighting my everyday battles. There’s not enough time in the day to get everything done so sometimes dishes get left in the sink and clothes don’t get folded.
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