I used to be one of Them.
I used to think of all the things Ethan will never do.
It’s still very easy to make that list.
I’d sit and listen to family members, friends and well meaning strangers tell me that medical science advances so fast that none of us have any idea when they could come up with a cure for Ethan. They’d tell me I must have hope.
I do have hope. Plenty of it. I’ve got so much hope that I could lend some to those who pray to Saint Jude.
I just don’t have hope for a cure for Ethan, at least not in his lifetime.
I’m not even sure if I’d want him to be ‘cured’. Yes, I’d be more than happy to take away the ‘life limiting condition’ tag that is attached to Hunter Syndrome. But a cure would take away all of Hunter Syndrome, wouldn’t it? Isn’t that what the word ‘cure’ implies?
Ethan isn’t Ethan without Hunter Syndrome. That is a fact. Hunter Syndrome makes him hyper; giddy beyond any illegal high! Hunter Syndrome gave him his beautiful full lips, his big round eyes, rosy chubby cheeks and wiry hair… it’s called a ‘syndrome’ because you can see it and yes, my Ethan is a typical Hunter Boy. It gave him his infectious laugh, once he starts you will find yourself smiling at first, then bent over laughing with him at absolutely nothing. It gave him the ability to show unconditional ‘blove’. Every day, I am kissed within an inch of my life, I am cuddled, I am ‘bloved’ by Ethan and he’s happy to share his ‘blove’ to anyone else who enters our home.
Without Ethan having Hunters, I believe I would never see things the way I see them now. We all say things like ‘work to live, don’t live to work’ and other such quotes to remind ourselves to take time to enjoy the little things in life. I don’t need reminders. I see my four foot nothing, almost 13 year-old boy and I know to cherish him. I know I won’t have him forever. I know what time means. My camera is never far from my hand as I video and capture all my boys, but especially the moments of Ethan being Ethan.
While Hunters is without a doubt, one of the cruelest syndromes, it also teaches us so much, it lead us into a secret world. A world no parent would enter willingly, I’ll grant you that, but a world that when you’ve dealt with the blow of being told your child is battling a condition that will eventually end his short life, (let’s face it, no one can ever really deal with that, that bit is locked away in the back of your head and kept well away from your heart) where you find you actually belong. You are witness to the most beautiful moments and you know it. You know to treasure it. You don’t take words your child says for granted, when he finally strings a sentence together you sing, dance and shout. You beam with pride, while trying not to cry. When he hits and punches because he is angry, you are happy that he is able to express his anger. You, of course, hope he doesn’t hurt anyone but there is a huge part of you that is delighted that outburst had a reason. Valid or not, a reason is better than wondering if your child is in pain. I am witness to all this and so much more.
Ethan has no idea he is different. Ethan runs when he should walk, Ethan shouts when he should be quiet, Ethan laughs when he shouldn’t, Ethan does what Ethan wants to do, when he wants and how he wants… and who am I to say I want a ‘cure’?
Ethan spends far too much time in doctors’ offices, hospitals and therapies but that comes with most syndromes. Wishing he didn’t have that syndrome is a wasted wish, he was born with it. It is part of him. I don’t like it but I’ve learned to accept it. How else can I enjoy Ethan for the time I have him if I am constantly hoping for a cure?
I used to wonder what Ethan would be like as an average child… I don’t anymore. Finally, I don’t. Ethan is Ethan and he has Hunter Syndrome… I wish for understanding and acceptance. I wish Ethan could just be Ethan and I believe Ethan just wants to be Ethan. There have been plenty of times he has told his lovely audiences to “F**k off”… another one of this mom’s proud moments.
I used to be one of Them, praying for a cure, screaming at the man in the sky, studying the internet for any sign or hope of a possible cure or at least research into Hunter Syndrome, hoping somehow, somewhere someone would come and cure my boy, my first born bundle of Ethan.
Now? Well now I’m just a different mammy, hoping for the next day (and the next) with my wonderful, beautiful amazing Ethan, who has Hunter Syndrome.
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 or read yesterday’s post on ‘A typical family outing to the supermarket.’