Parenting in my shoes – My child has a life-limiting disease

Geraldine from Galway – the proud mum of three uniquely different and full of fun boys – married her husband on the TV programme, “Don’t tell the Bride”, back in 2012.

She is a writer, but life is not as simple as that – in addition to being a writer she is an advocate,doctor, dog-walker, mum and full-time carer for her eldest son Ethan who has a life limiting condition.

Here Ger talks to me about the realities of being the parent of a child with a terminal disease, how overwhelming it can be, her worries for her other children and the support that she really needs.

Realising something was wrong…

Ethan was diagnosed in March 2008 . Ethan was born in 2002 and from 2003/2004 , we knew something wasn’t quite “right” with our little man .

Ethan was hitting every milestone early but suddenly at the age of 18 months he began to lose words or forget how to make his favorite jigsaw puzzle. At first we thought it could be an “off” day but then it happened more frequently and he began to get chest infections every other week .

Seasons didn’t matter, he was sick with a runny nose almost the whole year round . He didn’t look like us or any family member and he was toe walking .
His belly was sticking out while he didn’t seem to be able to straighten his fingers .

For every new word he learned, he lost three. He didn’t seem to be able to hear us. He’d often sit and stare out the window shouting at nothing. His hearing was the first thing doctors zoomed in on and often used his hearing loss to explain his unstable walking .

The second thing was behaviour and we were told that Ethan has Sensory processing issues along with a mild learning disability and possibly Autism ; we agreed with all that but believed that there was more , something else wasn’t quite right .

After years of begging the doctors to listen to us , finally in February 2008 we were heard . A wonderful doctor sat down and let me talk and talk about all my worries – that doctor had little choice but to listen as I had refused to let Ethan have another set of grommets inserted when clearly they were not helping him hear . I caused holy war and finally got the right doctor ( up until then I had only access to an ENT doctor who just thought all Ethan’s symptoms were hearing related along with my “over anxious young mother ” nerves !)

Ethan was finally diagnosed with Hunter Syndrome two months shy of his 6th birthday .

Handling the news…

Well, how can any parent understand when the doctor tells you – “You won’t have him for long ,go home and love him. ”  Our old world ended that second ,that minute ,that hour …

Nothing was ever going to be the same again – that is all I really understood that day.

Hunter syndrome and the prognosis…

Hunter Syndrome is a rare genetic syndrome . It is progressive.  There is no cure . The body is missing or has a damaged enzyme which is in every cell of the body . This enzyme helps breaks down waste in our body (not poop , FYI !) .

Without the enzyme the waste has nowhere to go ,so it builds up and up until there’s no more places to store it . As it builds it affects every single thing in the mind and body . Then when it’s finished the person generally passes away , by then Hunters has taken everything from them …speech , ability to eat, walk , communicate … absolutely everything .

Hunter Syndrome does have a treatment which helps slow down the progression of the syndrome , but that only works for so long – you’re basically buying time .

There is a possibility of a cure and ongoing research but for our son, it is too late.

The impact on Ethan’s life so far…

Ethan now has a peg for medications . He is on a special diet of blended food. He uses thickener through his drinks . His speech is all but gone and he’s losing his ability to walk and eat .

Yet he smiles and laughs and tries his best to sing and dance still.

And the impact on ours…

It’s devastating to watch your child fade away . It’s an eye opener, a reality checker and a perspective maker. It’s changed us profoundly . It’s given me life and broken my heart a million times over.

Our support…

For a long time we had sweet feck all! We did have a family support worker from 2010 for ten hours a month. This was to be taken off us in 2012 but I fought tooth and nail to keep him as he adores Ethan and is very much part of the family now.

Temple Street Children hospital have always been excellent at trying to get us supports and help here in Galway but up until 2013, we were getting no Respite and no outside help , only ten hours a month with the family support worker.

We’ve two other boys and we have to give them a childhood too , without help , that’s very difficult .

Currently we have respite , home help and Lauralynn

LauraLynn and the struggle to accept our need…

LauraLynn and much more support ( more respite ,home help and social worker, community nurse, public health nurses…) all came into the fold last year as Ethan had a rapid decline . He lost the last of his speech and became very violent .

We thought we were going to lose him. LauraLynn stepped in to offer support for Ethan and us , our family.


I was afraid of LauraLynn because the word “hospice” is attached to it . I didn’t want to go and refused the first time it was suggested. I felt it meant that I was ready to let my baby go – I’ll never be ready .


But with a bit of support from our medical teams here in Galway and Dublin we ventured up late last year.


It was surreal. It was heartbreaking . It was beautiful.The staff are amazing .
 We haven’t been back since due to ill health and getting the time off to go there(husband works outside of the home)  but we are due back in June for a few days – this time all of us .


I’m anxious about my other two boys experience there ; I am sure that they will find it hard but also helpful , as there will be a team for them too so they can talk and play freely .

Ethan

 

Coping with it all…

I didn’t for a long long time. I was great at locking Hunter Syndrome away in the back of my head during the early days .

But Hunter Syndrome didn’t break it’s promise to me – it did take and still does take and take from my son,  so I had to face it .

I’ve had a lot of counselling and recently I have turned to mindfulness -which I have found to be brilliant for me . I have severe panic attacks and suffer with anxiety, stress and everything you’d expect a parent of a dying child to live with – but I am managing it as best I can.

I also writeI made a little dent for me and my style of writing. I have found my niche and my soul finds peace behind the computer screen while my fingers dance over the keyboard.

The highs along the way…

Ethan.

The people I have met .

The kindness I have been witness to.

The families that live this life along side us , whether they are in Ireland or New Zealand !

Ethan getting a courage award, a make a wish trip and his pending 16th birthday celebrations .

The funny stuff Ethan did when he was younger .

Ethan’s laugh .

Ethan’s ability to bring out the goodness in people while calling them a Ballio – let me explain that a little – when we were told Ethan would lose his speech ,we stopped correcting the curse words he used and to this day he still uses the word Ballio which is the B word .

Simply put Ethan has been the greatest high through the diagnosis.

And the lows…

Hospital machines , watching them ,praying for the stats to climb up so my son doesn’t need to be ventilated.

March 2008 – the day I really heard how deafening silence can be .

Ethan’s violent outbursts especially when he’d hurt himself. I’d take the kicks, punches , pinches over and over rather than to see him hurt himself.

Ethan being sedated for his own safety.

Coming to realise that Hunter Syndrome will win this.

The support I need…

Help for my two younger sons . I worry about their mental health.
Mental health check up for us , Ethan’s parents and extended family members.  When we ring regarding Ethan’s needs be it a huge thing or something small , I wish we didn’t have to go on a damn list.

Yes I’m asking for special treatment. I wish we didn’t have to reapply for medical card or for Ethan disability benefit , I really think families like ours could do without that stress . Once a child is deemed terminal everything should be automatic , I shouldn’t have to prove he’s not cured …ya know ?!

I do wish those who don’t know about Ethan’s condition wouldn’t wait to give us the supports we need until it becomes a crisis ; for example I have been asking for a home adaptation for two years now which has now hit a crisis point as Ethan is no longer able to sleep safely in his bed at night , but we still have to wait for all the paperwork and  approval before they city council even think about building a downstairs bedroom and bathroom. This was the stress I was trying to avoid , I thought if I applied in plenty of time it would all be there for when Ethan needed it but alas that is not what happened due to I believe a lack of understanding of the word ‘progressive’ in Ethan’s syndrome.

My advice for parents whose child has received the diagnosis of a life-limiting condition…

My advice would be to make memories .
Ask for a good social worker , an experienced one who can fill out all the forms and just get you to sign them – trust me giving up a job will be the first thing you’ll do ( I did)
Know the law regarding the state’s obligation to your child.

Take a mindfulness course , give it your all , it will help .

Remember that life no matter how sad, is for living. Enjoy as much of it as you can while you can .

It is perfectly fine to shut yourself off from the world , just remember to open a window, even on a bad day.

I will leave you with a quote which really sums up what it is like living with a child who has not only special needs but is terminally ill –

“You are now in a secret world. You’ll see things you never imagined; ignorance , rudeness and discrimination …but you’ll also witness so many everyday miracles and you’ll know it. You won’t think a milestone is just a milestone , you’ll know it’s a miracle. You’ll treasure things most wouldn’t think twice about . You’ll become an advocate, an educator, a specialist and a therapist but most of all, above all this , you’ll be a parent to the most wonderful child’ –Written by me (Ger Renton)

Ger and her boys.

 

 

 

 

 

One thought on “Parenting in my shoes – My child has a life-limiting disease”

  1. A heartbreaking post, telling it how it is. I hope you continue to make memories for a long time to come. Your love for Ethan shines through in your writing.
    Thanks Jen for sharing this.

Comments are closed.