Hoping through a year

 

It has almost been a year since.

A year since we thought we were witnessing Ethan leaving us.

A year since Ethan was so out of control that no doctor we turned to had an answer.

I can remember doctors vividly telling us that perhaps Ethan would be best cared for in a psychiatric unit due mainly to his behaviour or full time residential care.

My ‘go to’ experts (other parents) had only ears to listen with and heavy hearts to offer as they too had no idea what was going on with our once happy carefree son.

I can remember the specialist scratching her head trying her best to figure out how to help.

We felt very alone.

Our parents would take turns visiting so they could help with our other two boys.
Friends would call and offer to cook.
All the while Ethan would shout, roar, hit , bite and refuse to eat or drink.

At the height of this , which the doctors would later refer to this as a decline, Ethan’s weight fell to just under 4 stone.

We had to have our younger boys stay with their grandparents as we didn’t know how to explain to them what was happening.

The pressure we had on our shoulders was over bearing.

 

         

D had missed a lot of work, due to this he was let go from his job.(having said that, his company were very understanding but they were running a business and needed D there; that is the reality of illness within the family)

I became so unwell that it was discovered I had a growth in my stomach , which doctors told me was more than likely from stress. My weight fell rapidly.

We spoke to social workers, councillors all in preparation for Ethan’s end of life care.

End of life.

Ethan’s consultant decided fitting a peg would at least be a way to feed Ethan and help get his weight back up which could in turn help him to stabilise .

We were told of a children’s hospice ; Lauralynn .

During this time I can’t quite explain what was going on in our heads.
We could not fathom that Ethan was near the end of his road with Hunter Syndrome .

It was so quick.

So different from everything we had read, had been told and had seen through other parents eyes.

We hoped .

We hoped that Ethan could just stabilise. We didn’t care what stabilise would look like, we just hoped he would at the very least be calm again.

We hoped we could get used to our new normal, after all, that is pretty much the path hunter syndrome takes- it meanders into so many new normals over time, that we become used to finding a ‘different’ approach , ever adapting to our ‘new normal’ as we go.

When I look back now over those long months, I don’t know how we survived it.

All I was sure of at that time that this was not Ethan’s time.
I knew deep down in my being that this was not the path Hunter Syndrome would take with my son.

I can’t explain it more than that.

Today, almost one year to the day when Ethan just woke up …changed ; we have so much to be grateful for.

Doctors who listened to us, especially those locally.
Amazing public health nurses.
One hell of an outreach nurse.
The team up in the metabolic unit in Dublin.
Home help.
Ethan’s school.
Ethan’s respite carers.

Each and every one of these people were just as distraught as us as they witnessed Ethan rapidly decline.

Each and everyone of these rang, emailed, called in to see what exactly was happening.
They offered support, advice, services which I think is fair to say, which were often above and beyond what was expected of them.

After the peg went in, this was another ‘thing’ to feel pressure over- I had no idea how to care for it and at the time it took five people to clean it. We had two public health nurses call daily along with the outreach nurse, D and I. It took all of us to get that peg turned and cleaned.

Today, I can clean, turn and wipe that peg – alone, while Ethan laughs at my version of singing. (Ethan is eating by mouth again so the peg is used for medications)

We changed Ethan’s medication to much milder versions (obviously with the help of the doctors) and then we took a gamble. We added in CBD oil.

Today Ethan is more like the Ethan of this time last year.

We stood on the verge of the end; we took a step off believing it was not our boys time.

We were right.

It’s hard to admit that all the while this was going on I would find myself thinking of Ethan’s funeral. My heart would tighten. My breathing would sped up.

 

I would magically find myself in the chapel of either hospital lighting a candle.

 

I remember D ringing me asking where I was one evening while in Temple street, I had somehow just wandered into the chapel.

It was so peaceful there.

I could be alone and let those horrible thoughts flow through my mind while crying.
I didn’t want comfort. I didn’t want to be told it would be ok; I knew two outcomes were possible , I begged for a stabilisation.

For the first time in almost a year, we are looking forward to something.
Days out.
Halloween.
Christmas.

Ethan has very much stabilised and is back to causing mischief.

He has his moments but he has always had that.

We do still have pressure, as many many families have.

The day to day pressures are the same for us as they are for other families, with the added bit of watching Ethan carefully and ensuring we have returned every phone call, made the ones we need to, dodged the ones we want to, arrange his medications, keep on top of his appointments the list goes on.

D recently started his own company too, we are confident it will be a success but that doesn’t take the pressure away!

The main pressure we are feeling right now is ERT (Enzyme Replacement Therapy)

Ethan hasn’t had his ERT in almost a year; we are worried sick about the coming winter and what it could mean for Ethan’s health.

We are hoping to restart ERT but it isn’t just our decision nor is it a decision to be taken lightly.

We have a new normal (again)

Ethan has not said my name in a year, nor D’s , nor his brothers , aunts or uncles or our good friend A who calls often.

Ethan has forgotten the games and songs we used to sing together only a year ago.

Ethan isn’t as mobile as he was.

Ethan however is still able to tell us to ‘Go away’, very clearly and when he wants us to actually go away from him. He used to tell us to ‘fug way’ so at least ‘go away’ is much more polite!

Lately, he has been sitting on my knee, something I thought he’d never do again, he even lets me kiss him.

Ethan has sadly lost the affection he was always so well known for. He no longer kisses people but has let us hug him of lately to

We are in our new normal and despite the things Ethan has lost; this is a much better new normal than I could have ever imagined one year ago.

I’ve said it before and I will say it again; hope is a powerful thing.

Hold on to it, even in your darkest hour.

 

*I have since found the weight I lost too! 

 

 

 

 

 

 

 

16 comments

  1. I don’t know what to say. I’ve only just found you and Ethan and haven’t had time to have a proper look around yet. I also know very little (read nothing) about Hunter Syndrome. I can’t believe that a year ago you were talking End of Life care and Ethan is still here! It’s amazing, well done Ethan. I’m sorry you have (yet another) new normal, but I don’t think I am sorry. I understand it. Our ‘normal’ changes frequently too.

    1. Yes I read a few pieces on your site . You’re a wonderful writer ! And yep I know you know all too well about the new normal families like ours face almost monthly xxx

  2. Sounds like you’re all having a stressful time of it but that your little boy has the most amazing parents, who will bend over backwards to do everything they can for him. Lucky little boy.

  3. Oh goodness, I had tears in my eyes reading this. I’m new to your blog so have just had a read of some other posts and wanted to say thank you for writing so eloquently and openly and raising awareness of Hunter Syndrome. I can’t imagine what a difficult time it must have been for you a year ago. I have a family member with a serious mental health condition so I understand some of what you mean by finding a new normal (again) and all the ups and downs along the way. I agree that hope is a powerful thing indeed.

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