The Honest Reality of Living With a Life-Limiting Condition

After my son, 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” — no one should ever have to hear that sentence 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 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 and as far away as possible 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 aren’t many, and I talk to roughly 100 or so. I see my life being lived thousands of miles away. I’ve connected with some families simply because their son has the severe form of Hunter’s, just like Ethan. I check up on all my other boys, read their Facebook pages, comment on their videos, pictures or their posts. 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 because 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.

I’ve been friends with a certain family since 2009. I’ve 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. T has the severe form of Hunter’s 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 lost with new ones. T was very much holding his own against Hunter syndrome. But recently, T is not doing too well. That is putting it mildly.

I froze as I read his mommy’s update. “Hospice”… “Regression”… All the words that force the box I keep locked to pop right open. In what world is it normal to have a Facebook thread about end of life care for a 14-year-old boy? But it is normal in my world. Underneath her heartbreaking post were hundreds of comments offering support, stating that hospice care 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 being delighted 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 did 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 a strength you never knew you had 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.

Light a candle for T and his family, pray, send good vibes — whatever you can do, please do it. Kiss your wonderful, grumpy teenagers. Let them know they are special, because they are. Because no one tells you the honest reality of living with a terminal, life-limiting condition — not even the doctors.

Follow this journey on It’s Me Ethan.