I don’t know…

Does it get easier?

I have been asked that on a few occasions.

Does it get easier to deal with Ethan’s diagnosis- I figure that’s what you mean when you ask me that.

The short answer is …I don’t know.

I remember the day Ethan was (finally) diagnosed like it was yesterday. The difference is ; now I can talk about it; then I couldn’t.

I begged the consultant to tell me it was cancer. I cried and screamed and told him he was wrong. My child was not fighting a loosing battle. I figured with cancer, we had a fighting chance… a plan… a treatment and a chance… a chance of a cure…a chance at life.

The consultant 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 think about that day; and I think about how so much ended in that three hour appointment. Our lives were forever changed. We were forever changed.

I try not to think about that day, every now and then, like today, it pops into my memory bank. I write;to release it. I used to cry…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; the part that rear’s it’s 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,sleep issues…I see Hunter Syndrome.

I deal with that by doing what I have to; calling the specialist, going to Temple Street Children’s hospital, arranging 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 Hunters.
I’m not sure if that’s ‘healthy’ but that is how I get through minute by minute, hour by hour…

I lock Hunter Syndrome away and what it will do to Ethan and I swallow that key until I have to open it.

I can now openly talk about the syndrome without crying…I see it as a separate identity …I don’t picture my Ethan when I answer your questions.

I picture Hunter Syndrome; a dark figure with a clock, ticking so loudly—I want to blow up that clock.

So to answer that question; does it get easier?

I still don’t know.