How My Son’s Hunter Syndrome Makes Us View Time

Tomorrow our baby D turns 1. That year flew by quicker than a hungry cheetah chasing a zebra!

Time is a funny thing. It’s different for us now. We don’t view time like most. Time is a tough pill to swallow.

We celebrate like all families do, we embrace the boys getting older, but when it comes to our son, Ethan, getting older, it’s different.

On one hand we are delighted. We do our “up your’s Hunter’s” dance, and we actually dance and sing it in the tone of “Happy Birthday!” On the other hand, late into the night, we talk about Ethan and how much Hunter syndrome has taken from him, us and his younger brothers.

It is sad. That’s the truth. No one wants to hear the truth. They want to hear about how great Ethan is doing, how happy he is and how great we all are for getting on with “things.” What choice do we have?

Time does not allow you to wallow. Time moves. Time pushes you, ready or not.

“Time heals all wounds.” For us, it doesn’t. We’ve known about Ethan’s syndrome since 2008, so that’s six years. We are not healed. We are not ready to deal with the harsh reality of Hunter syndrome. How can any parent be?

“Time stands still for no man.” Sadly that is true.

I remember writing a poem about Ethan. It was a way for me to talk about Hunter syndrome without opening my mouth. I still find it easier to type. It’s hard to tell the gods honest truth to a friend who just wants to hear that everything is OK. I cry too much when I talk frankly about Hunter’s.

My poem was basically about wanting to stop time. I still would like to stop time. I had written it, crumpled it and tossed it into my computer desk. A year ago, my brother A was moving. We were helping when I spotted a framed poem hanging on his bedroom wall. “What is that?” I was embarrassed and a little annoyed. “Yours. It’s beautiful. I hope you don’t mind. I saw it in your desk, years ago. I was afraid you’d throw it out, so I kept it,” he stammered. “Do you want it back?” He took it from the wall. “No, keep it.” The annoyance dissolved as I watched him carefully cover it up and place it on top of his box marked “memories.”

I appreciated that. I appreciated A could see the value of the poem. “If I could stop the time, I would.” He kissed my cheek as he left the room carrying far too many boxes.

We don’t talk about Hunter syndrome in too much detail, my family and I. My guess is it’s just too hard on them, but that day, among all of A’s childhood memories, I knew he understood how I really felt. We never spoke of the poem again. It has a spot in his sitting room wall now and that’s OK with me.

I value time. I value the time I spend with all my boys. I treasure the time we spend watching TV, dancing, singing, walking, running, playing… I treasure it all, like all parents.

Except for us, we know one of our boys won’t ever get to do any of the things we imagine for our children. In time, he will be unable to walk, in time he will be unable to eat, in time he will be unable to communicate, in time he will not recognize us, in time we will have to say goodbye.

That is Hunter syndrome. That is our reality.

I want to end this rather depressingly honest post on a positive note: time can do so much. Yes, yes it can.

Research and awareness is vital; there’s ongoing research and it’s successful. In time all those who qualify (who are deemed healthy enough and not too far into the regression stage of Hunter’s) might get the drug.

It is a waiting game.

We feel time is actually on our side. Ethan is doing OK. For a boy with the severe form of Hunter’s, at the age of 12, he is still talking (two- to three-word sentences), walking, playing and of course laughing. He is still here and with us.

We thank time for giving us him, for letting us still have him and for being good to us all.

Time is an amazing thing.

I still wish I could stop it or even pause it. I can’t.

Tomorrow is baby D’s very first birthday. We will take the time to enjoy it and watch our three boys enjoy it.

The here and now is all the time any of us are ever guaranteed. That’s how we view time in our little family.

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