No one tells you, not even the diagnosing doctor. You find out on your own.
After Ethan was diagnosed; I spent a huge amount of time Googling Hunter Syndrome. I felt I had no option but to Google as the doctor simply told us "Go home, enjoy him, you won't have him for a long time" - That sentence no one should ever have to hear about their child, but we heard it and I choose to ignore it, for a very long time.
Even today, seven years later, I still ignore that sentence when we speak to specialists about Ethan and how his syndrome is progressing. It is by far; much easier to type it.
Today; the specialists don't say that particular sentence but they do say sentences that send me into an anxiety fueled panic.
They tend to remind me that "Ethan is doing ok, but that there will be a point where the infusions (ERT) won't work anymore, you must be ready for that day Geraldine, as you know ERT is not a cure, it is simply a way to slow down the progression of the syndrome"
I hate that sentence, while I do understand why they have to say it; it stills brings my heart rate up,forcing blood rapidly through my tired body.
Ethan is not even close to having his infusions stopped; that is what gives me hope, comfort and eases my pain.. I put that sentence along with the one we were told on his diagnosis day into a box and I lock it. I keep the box in my head, as far away as I possible can from my heart...I can't bear to even discuss what we would like to happen when Ethan becomes that unwell.
And that is how I cope with raising a child who is terminally ill.
I only joined facebook to find more families like ours.
There are 2000. That is it. In the whole wide world there are only 1999 boys like my Ethan.
1999 families like ours.
I talk to roughly 100 or so.
I see my life being lived thousands of miles away.
I have connected with some families simply because their son has the severe form of Hunters, just like Ethan.
I check up on all my other boys, read their facebook pages,I comment on their videos, pictures or their posts in which their mammy or daddy is asking for advice on. We laugh at our poo stories or our temper stories - we bond.
When I read about how unwell they are; I feel like scrolling past ...I find it so hard to read it. I find it hard to read the posts about 'end of life care' or 'that ERT is no longer an option'...but I must read them, I must support them as for one day I know it will be me.
I will be the one online, begging these parents to hear me, to read my pain and to connect with me...miles may divide us but our boys bring us close together, we become more than family, more than friends..we are kindred spirits even though we would all rather not be.
I've been friends with a certain family since 2009. I have never met this family in person. I felt drawn to them as soon as I saw a picture of their wonderful little man 'T' .
T is one year older than Ethan. T has a big little brother too; just like Ethan (at the time; there wasn't even a hint of baby D). T has the severe form of Hunters just like Ethan and T spoke like Ethan, played like Ethan, walked and laughed just like Ethan.
When I 'met' this family T was doing well; yes he was losing skills but like Ethan, he was replacing some of the skills he had lost with new ones. T was very much holding his own against Hunter Syndrome.
I feel in love with T and his wonderful, happy, friendly family.
Thier updates, pictures, stories always brought a smile to my face until recently.
T is not doing too well, that is putting it mildly. I froze as I read his mammys update .."hospice".."regression"..all the words that force the box, (I keep so well locked up) to pop right open.
In what world is it normal for a thread on facebook about end of life care for a 14 year old boy?
But that's it; it is normal, in my world.
There underneath her heartbreaking post, where 100's of comments, offering support, stating that hospice can be used to ease the transition ...words I can't even type...
She updated saying that T was refused hospice care, as he was not sick enough.
She was delighted.
Imagine; delighted that your child doesn't need hospice care (yet) but actually having to go and check if it was time for hospice services.
I don't know how she done that.
How she (and her wonderful husband) went through all that and still had positives to share on her facebook page.
I know, more than most, that there is a strength that you never knew you had; which will overcome you and you will get through things you could have never seen coming; I simply can't imagine; fear keeps me from imagining. And I am all too aware about what's coming.
If you have read this far; thank you.
I know it is not an easy read, but when I chose to write about raising Ethan, I feel the harsh reality of my world has to be shown every once in a while.
Light a candle for T and his family, pray, send good vibes - whatever you do, please do it.
Kiss your wonderful, grumpy teenagers...let them know they are special; because they are.
Because no one, no one tells you the honest reality of living with a terminal , life limiting condition; not even the doctors.