In with the old and out with the new
It’s the other way around for most people but we are not most people.
In the last quarter of 2016, we spent quite a few nights in hospital with Ethan. It happened quickly and out of the blue for us. Not completely out of the blue, as doctors and specialists had repeatedly pointed out to us at the time – ‘Hunter Syndrome is terminal and can progress differently in all children who have it, the only thing that is the same is the fact that it is a terminal condition. We are so sorry.’
I can tell you, when doctors and specialists are telling you that they are ‘so sorry’ – you still can’t quite believe that your son is terminally ill. Yep, even that far down the rabbit hole, you still cling to hope.
Like many parents who face that kind of reality, we decided to disagree with the doctors and fight them at every step. They wanted to sedate Ethan. We refused.
They wanted to discontinue all medication, as these were obviously not helping. We wanted to try milder medication. Sadly, we did agree to the idea of a peg to feed Ethan, as Ethan had lost too much weight and was finding it difficult to eat.
There were no shouting matches with doctors. Everything we suggested, they tried. They always gave us that gentle reminder, however, that Ethan had a terminal condition which would end his life during his teens.
Doctors have to keep you in touch with reality while trying to help you cope. We are forever grateful to all the members of Ethan’s care team, especially over those long, hard months.
It was only when we would repeat these conversations to family or close friends, and see their reactions, that we began to realise that we were numb to what the doctors were saying. Maybe deluded, or maybe in denial, we weren’t sure what our family, friends and doctors really thought about us at that time.
We ourselves were never fully sure which we were. We decided that we were numb. It sounded better than being in denial.
Eventually our boy came back to us, not completely but mostly. We did have to accept that Ethan would never be the same – accept that Hunter Syndrome had taken some things from him which he could never get back.
A Harsh Reality
But the reality of Hunter Syndrome is exactly that. It takes and takes, changing each and every moment of our children’s lives.
We are well used to finding a new ‘normal’ with Ethan. We just never had to find our way through such a rapid, spiraling new ‘normal’ before this. Ethan’s condition has always been declining, but much slower and only in a way that you’d notice if you hadn’t seen him in a few years.
This decline took the floorboards from under us, not just the carpet.
I say that we ‘accept it’ but the truth is we can’t ever accept it, we just move with it. For example, Ethan is now linked in to a hospice. That shattered our hearts but we do think it is something our family needs the support of.
In the second quarter of 2017, Ethan began to take medication from which we felt he would benefit. Our boy came back, little by little, bit by bit.
He went from not eating to only needing his peg for medication. He went from not communicating to talking, laughing, playing and engaging with us. He went from violent meltdowns to one meltdown maybe once or twice a week, with zero violence.
Despite arguing with the doctors, without their support for us and Ethan, we wouldn’t have Ethan as he is today. The doctors are the reality givers not the hope makers. Parents are the hope makers.
We began to give Ethan Charlotte’s web oil in April 2017. The changes were subtle at first, we were even afraid that we were imagining them. Ethan’s school saw the difference. Respite too. Doctors and those who called regularly to see Ethan noted the difference too. He was indeed stabilising and happy once again.
With a condition like Hunter Syndrome, your child’s stability is a huge thing. Our boy started to come back to us, with little bits of speech appearing. His love of jigsaws, TV, music and his affection for us returned by December 2017.
It’s January 2018 now, and I really hope it is a New Year for Ethan too. In with the old and out with anything new regarding Hunter Syndrome.
I want Ethan to stay the same. Even though I know that’s not realistic, I can still hope. After all – hope is what got us through last year.
Hunter Syndrome showed us the speed at which it can amp up at last year, but it also made us enjoy our Summer, take longer days out with all our boys. It made our Christmas very special. It showed us once again how precious time is.
We hope that this year, it continues to show our boy some mercy, so we can enjoy him for that bit longer.
This article was originally published on Firefly Community