Having a child with Hunter Syndrome, is for me, about living in the present. The past is upsetting and the future is so scary that I do my best to avoid the natural thoughts we all have; I wonder where we will be in five years, I wonder what my boys will be like…
I guess the simplest way to explain Hunters to you is terrifying – you have a beautiful, bright, funny child; he is missing an enzyme,
(or part of an enzyme) a teeny tiny enzyme. This enzyme is so very important though, more important than you could ever imagine.
His body pays a high price for this missing enzyme. He has joint and mobility issues that will eventually require a wheelchair or a specially adapted buggy. He has every organ in his body damaged, all oversized, all will require regular check-ups and surgeries. His airway is badly damaged, making even the simplest of surgeries begin with a permission form; stating that we, the parents understand, due to complications that may arise form Hunter Syndrome, that this surgery may be the one that causes his death.
Every part, every single part of Ethan’s body is effected because of this tiny enzyme or lack of. His brain is effected too, meaning as Ethan ages; his mind will go, not unlike Alzheimer’s. He will even forget how to swallow. He will stop talking. Every week, he gets a ‘man made’ version of this enzyme, this simply slows down the physical progression of Hunters, but it does not cross the blood-brain barrier, meaning in lay man’s terms, the damage will continue in Ethan's brain and we can’t stop it.
So yeah, I don’t visit the past videos of Ethan, I don’t imagine the future with Ethan, instead I live here and now with the Ethan I have right now, not yesterdays Ethan, my Ethan, my today's Ethan.
I am a special need parent who lives in a world where I can only hope I get a next week, a next month… I write my blog to remind myself that Ethan brings me many laughs, giggles, and amazing experiences. Hunter syndrome is always in the background where it belongs.
Ethan, J and Baby D along with my wonderful husband D, are very much in the foreground, where they all belong.
Read more about a typical day's outing for Ger and her boys tomorrow....
I am Ger, wife to D and a mom to three boys; I am their world while these four men are mine. We are trying to learn how to laugh again after our eldest son Ethan was diagnosed with Hunter Syndrome. This is a blog about living, laughing and learning.
We are thrilled to have Ger on board as our Guest Blogger this week, for more of her beautiful words, follow her blog: geraldinerenton.com.
