What It’s Like To Raise A Terminally Ill Child

What is it like raising a child with a terminal illness?

I’ve often been asked that age-old question “How do you do it?” It in this sentence is in reference to raising my son, Ethan who has not only got some extra needs but he is also terminally ill.

My answer to this has changed over the years.

HUNTER SYNDROME changes my child physically and mentally, and I have to admit that changes me too.

My perspective changes. My idea of coping or finding the joy and hope have all changed as I watch my son being ravished by this relentless syndrome. Other parents in my little world often use the words “fighting hunter syndrome” and I too may have used those words once upon a time.

But time changes you and teaches you.

I don’t use the word “fighting” because that implies that he has a chance at winning which sadly he doesn’t. He doesn’t have that chance as it’s an incurable syndrome. That’s not a defeatist attitude, it’s a realistic and even a bitter one. (Yes, bitterness and I are old friends)

There are hopes that in the near future there could be a possible cure but money is currently stopping this from becoming a reality. When a cure becomes a reality, my reality won’t change as Ethan is 16. In the world of Hunter, Syndrome Ethan is considered old.

16 equals old -let that sink in for a minute.

When a cure is available it won’t be available to my son; therefore I don’t follow the up to date information about Hunter Syndrome. My heart simply cannot handle that too.

Years ago I used to follow all the clinical trials and even took Ethan to participate in one.
But now? Now it’s too late and I really don’t want to spend my time or Ethan’s time dreaming of “what ifs” and “if only’s”.

So, how do I raise a terminally ill son? 

I wake up, for a brief millisecond, I forget how far the syndrome has progressed. How much it has already taken from Ethan.  I sometimes expect him to be sitting up singing “good morning good morning”

My reality sets in quickly as I hold my breath and open the app on my phone which is connected to the camera in Ethan’s bedroom. I brace myself because I know. I know that there’s a chance that today is the day.

I thank God for another day as I see him squirming in his bed,  his arms moving, legs kicking and his little lips making whistling sounds.

I don’t think much about God but if there is one, I want him to mind my son.  I get dressed so quickly that I’ve often gone out with a top on inside out.

I get Ethan’s medications, breakfast and clothes all sorted while carrying my phone so I can still see him on my screen.

I get my other boys up. I sing loudly and badly, sometimes that’s to quiet my mind other times it’s to annoy MY TEENAGER.

I get on with my day and in moments of calmness, I am so fucking thankful for Ethan.

I am thankful for his smile; something no one honestly thinks much about but me. I think about his smile a lot. I count how many times I can make him laugh. I miss him far more than is necessary. My other boys accept that mammy is a bit over the top with cuddling and kissing. My middle guy J, makes me laugh-I am allowed one kiss on the cheek and two hugs per day, teenagers eh?

My mind wanders every single goddamn day to THE HEARTBREAK which I know awaits me. Since doing mindfulness, I have learned to let my mind wander and let myself feel the pain.

Those are the hardest evenings for me. Other times I can’t.

I push the reality away and focus on the here and now, which is much better for my heart and soul.

It’s hard.

I make a memory out of the simplest of things; tv watching, throwing teddies, laughing at each other, putting on funny hats or taking selfies…

I am so afraid that my boys will forget or worse, I will. If I could bottle Ethan’s scent, I would. I know that may sound odd but until you walk an inch with me, you cannot understand.

But I can’t. I can’t bottle his scent and I can’t freeze time, slow it down or go back in time. What I can do is capture as much of Ethan’s life as often as I can.

I spend most of my days filming and taking pictures, yet I find it so hard to replay or look at the past but there’s a comfort knowing I have it all captured through the lens of a camera.

I search for the joy, some days it’s easy to find, other days I’m a broken mess and just can’t find it.

Same with hope. Hope is a tricky bugger which changes from week to week. My hopes for Ethan have changed so dramatically that I sometimes can’t believe what I am currently hoping for him.

No parent should have those kinds of hopes and if I’ve lost you at the above line; that’s ok, you’re one of the other parents who doesn’t live in my world.

I laugh at Ethan calling me a bollox (he doesn’t say it clearly but that is exactly what he is calling me!)

I laugh when Ethan laughs at his brothers who put on plays for Ethan and me.

I smile as I watch my three boys enjoy TV.

I enjoy going out for walks, racing with the manual wheelchair or racing the electric chair against the dog as the boys place bets and then race the winner. Ethan has always been a devil for speed and if his legs won’t carry him, I will happily push that chair as hard and as fast as I can.

And in the midst of it all, I feel blessed.

Blessed that my boys, all three of them are mine. Each one of them showing me in their own unique way what life is all about.

I am more present than I have ever been.

I am more alive than I ever was.

I am more aware than I have ever been.

I appreciate everything that little bit more.

I genuinely only worry about money when it comes to Ethan’s needs which is not to say I have money, I just don’t worry about it. Silly things can upset me as easily as silly things can make me laugh.

I sometimes pretend I don’t see the dog ripping a nappy outside the back because MY HUSBAND will be home soon (shhhh). I have long stopped wondering how she is getting the said nappies out of the bin. I think I am a better person because of Ethan.

I take it literally one day one hour at a time, I know that’s a cliché but it’s true for parents in my world.

And that’s how I do it right now. Who knows how I’ll do it tomorrow, but like all parents all over the world regardless of their situation I’ll do it because he’s my son, he’s my Ethan.