The story of Geraldine
Does it get easier?
I have been asked that on a few occasions.
Does it get easier after my son, Ethan, was diagnosed with Hunter syndrome? I figure that’s what you really meant.
The short answer is…I don’t know.
I remember the day Ethan was diagnosed like it was yesterday. The difference is I can talk about it now. Back then, I couldn’t.
I cried and screamed and told the doctor he was wrong. My child was not fighting a losing battle.
The doctor handed me tissues and repeated to me, “There is no cure, Geraldine. I am so very sorry. This is a fatal condition. Go home and love your son. Love him for the time you have him.”
Does that get easier?
I still don’t know.
I am unsure if I deal with Ethan’s diagnosis in a healthy way. How can I?
I try not to think about that day, but every now and then, like today, it pops into my head. I write about it as a release. I used to cry instead. Does that mean it’s gotten easier? I don’t know.
I see Ethan and his diagnosis as two separate identities. Ethan is my son, my beautiful, smiling little man, and his diagnosis is the other part. It’s the part that rears its head up and forces me to see it, to acknowledge it.
When Ethan forgets simple words or simple tasks, I see Hunter syndrome.
When Ethan has mobility issues, breathing issues, eating issues and sleep issues, I see Hunter syndrome.
I deal with it by doing what I have to. I call the specialist, go to the children’s hospital, arrange emergency appointments. I get through it.
I stare at Hunter syndrome, and it gets my full attention.
Once my boy is stable again, I ignore Hunter syndrome. I’m not sure if that’s “healthy,” but that’s how I get through it minute by minute and hour by hour.
I lock Hunter syndrome away and what it will do to Ethan, and then I swallow that key until I have to open it again.
I can now talk openly about the syndrome without crying. I see it as a separate identity. I don’t picture my Ethan when I answer your questions.
So to answer that question, “Does it get easier?”
I still don’t know.
I write about our life with Ethan on geraldinerenton.com or over on facebook https://m.facebook.com/Its-me-Ethan-1589885454611660/