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.

 

 

 

 

 

Teenaging in my shoes – I have Cystic Fibrosis

Benat like most fourteen year old boys loves computers and tennis. Unlike most fourteen year old boys however, his daily routine involves medication, physiotherapy and blood sugar monitoring –  because Benat has Cystic Fibrosis.

Ireland has the highest incidence of Cystic Fibrosis in the world and here Benat talks to me about the realities of living with this incurable disease.

Benat

What Cystic Fibrosis (CF) is …

CF is an inherited disease that primarily affects the lungs and digestive system, it causes mucus to build up in the lungs and you tend to get frequent chest infections over time.  I got diagnosed with Cystic Fibrosis (CF) when I was 19 months, which is quite late because they now diagnosed CF at birth.

Current treatment..

There is currently no cure for CF and the life expectancy for this awful disease is about 38. There are currently two drugs approved for Cystic Fibrosis here in Ireland to help prevent CF getting worse called ‘Kalydeco’ & ‘Orkambi’ these are not cures so they don’t stop all the symptoms of CF.

What the infamous Orkambi drug has meant for me…

Just over a year ago, here in ireland Orkambi was approved for patients aged twelve and up. Before its approval I was thankful enough to be on the Orkambi trial. That meant I got a head start on this amazing drug.

I started the Orkambi trial in January 2017 and I was expecting it to work straight away (which was not the case).

Orkambi for me took a good 6-7 months to notice changes such as my weight – my weight went up by approximately 16kg!

I grew a lot taller, I now have a lot more energy and better overall health.

My lung function has gone up also by a good 4-5% since taking Orkambi. I haven’t needed to go into hospital for anything other than my routine 4 monthly appointment. So I would say for me, Orkambi worked in a slow way but made me so much better

How Cystic Fibrosis impacts my life…

CF impacts my life in different ways, for example, every day I must take Nebulisers, Tablets (25), Inhalers, Airway Clearance, Exercise, Insulin, Manage my blood sugars.

Every day I have to be careful of who is well and who’s not. With CF, if I’m near someone who is sick I can very easily pick up whatever they have if it’s a cold or a bad cough. So I’m always wary of who’s well and who’s not.

 The biggest misconception…

I would say one of the biggest misconceptions with CF is some people are afraid they’ll catch CF. It’s impossible to catch CF because its is a genetic disease that’s inherited from both parents.

 One thing I wish people knew about CF is that we may look fine on the outside but you don’t know what’s actually happening inside.

How my friends react…

When I tell my friends I have CF, it’s quite funny because most of them have never heard of it and are always interested to know about it and there always very supportive.

Not letting it restrict my dreams..

My hope for the futures in to go into media particularly TV and Radio.

Benat – living the media dream!

To learn more about Cystic Fibrosis visit Cystic Fibrosis Ireland here

Time flies when you’re having fun!

Fifteen years ago tomorrow, I became a mother for the first time when my beautiful baby girl came into the world, informing it of her arrival with lungs that Shirley Bassey would have been proud of. She turned my life as I knew it, on its head and if I’m honest, in the weeks that followed, made me wonder what on earth I’d done.

In spite of the shock to the system that was first time motherhood, I fell completely and utterly head over heels in love with this gorgeous bundle of pink and my parenting journey began. Twelve years later to the day, my sixth child, her little brother and Godson was born.

 At the time, his arrival made my daughter seem very grown up by comparison, as she approached the end of her primary school time. He seemed so dependent in every regard while she was about to start an exciting new chapter in her education, one she couldn’t wait for. She strived for independence and he couldn’t live without me. The different needs were stark and challenging.

The first child gets to be the guinea pig in so many regards. I was she myself, so I can appreciate the frustrations but now I’m viewing it from a different perspective. This week as my daughter takes on her Junior Cert I’m like most mums I imagine, and I worry that she’ll get enough rest, not stress too much and hope the paper goes well. I’m trying in the little ways that I can, to make home life a little bit easier for her so she can do what she needs to do. What I really want to do however, is actually go in and take the exams for her.

As I type, my nine month old son is bouncing to the tune of “In the Night Garden” and my “one day away from 15” year old daughter is taking Irish Paper 2. How she gets on will be totally down to her. I can’t influence or affect the outcome of the exams, save maybe for helping her to be in the best frame of mind possible and discouraging the pointless post mortems after each paper. In contrast, I can pick up my bouncing nine month old and feed, change and do everything he needs done for him.

As I walked back from the school today many parents stopped to admire my littlest dude. They said they couldn’t believe how he big he is now and everyone agreed time goes so fast. It certainly does. As if birthdays aren’t enough of a reminder, state exams certainly hammer that home!

 

Appreciation!

When my first child was born and I realised the pain of childbirth, I found a new respect for my mother. And when my baby never slept and I had to function in a zombie like state, I found a new respect for my mother. When my toddler threw tantrums in the supermarket, doctor’s surgery, bus, school gate and every other place imaginable I found a new respect for my mother. And when the never ending mountain of homework started to arrive and preparing dinner and clearing a bomb site had to be fit in around it, I found a new respect for my mother. When I became the mother of a teenager and found myself in the alien territory of mood swings, strops and general hormonal breakdowns, I found a new respect for my mother BUT since my dishwasher has broken down and I have to wash the dishes myself on top of everything else, I’ve realised that woman, was a bloody saint!!!!

Last Day Of The Hols

The Easter holidays drew to a close here yesterday in pretty
busy style.  We had visitors in the shape
of my parents in law and my sister in law with her family.  Our nine year old returned from a friend’s
sleepover after having far too much fun to sleep and so was in the sort of form
you’d expect from a walking demon.  Our
teenager went to the last disco before her Junior Cert which started at 8
o’clock so obviously she had to start getting ready from 2 o’clock, (that
certain shade of tangerine they all like to be, takes a while to take hold) while
the “in between” kids played happily with their cousins without any regard for the
Department of the Environment noise pollution guidelines.
While eating we were treated to a floor show by my two year
old who is well capable of using the toilet but preferred to show the accuracy
with which he can aim at the potty , the sort of accuracy you tended to see
from the person who answered the questions on bullseye.  The five year old meanwhile imitated Dusty Crophopper,
complete with sound effects and actions from the Planes movie which was being
shown simultaneously on RTE and the seven month old looked on bemused but
definitely not fazed by the whole spectacle. It was a lovely afternoon.

When everyone was gone home and most of the kids were in bed,
all that was left to do was wait for my daughter to come home.  The baby, who doesn’t rate sleep, kept us
company and greeted his sister with a big smile as she came in the door.  It’s an almost surreal feeling sometimes to
have a child old enough to go to a disco and have a child so young he needs
propping up with cushions on the floor. It’s funny to have children who keep
you up at night for very different reasons.

Today, much to my kid’s disgust will be about getting ready
for the return to school tomorrow. 
Trying to reel back in bedtimes which have gone more than a little askew
over the last couple of weeks and making sure everything is ready for the week
ahead.  I have loved the break from the
routine, the freedom from homework and afterschool activities and the
reclaiming of our afternoons.  There has
been lots of fun had and far too many rows too but all good things must come to
an end. Now how to convince them that the return to school is not all bad……
#atleasttheresagrandstretchintheevenings #mamatude

Teenagers

Just when you think you have it sorted. Just when you think that you are finally getting the hang of this parenting lark, you find that you are the parent of a teenager! Harry Enfield’s Kevin and Perry could not have been more accurate (if you can’t remember this you should really google when Kevin turns thirteen, it’s hilarious). Suddenly everything you ever thought you knew, every reaction you thought you’d have and every “not until you’re such an age” goes flying out the window as you realise to survive this challenge you’re going to have to pick your battles! 

The teenage years can be a very stressful time for parent and child. It’s a difficult time for teenagers, who, while full of hormones, are dealing with growing up, finding their place in society, trying to assert some independence, and dealing with peer pressure which is at its most fierce at this stage of life. It’s also a difficult time for parents who are trying to balance allowing their child have more freedom to grow while trying to keep them safe from harm and maintain a decent relationship – all at the same time. One of the particular challenges encountered by parents is the virtual world in which our teenagers spend so much time. As adults we choose to log on to the internet. Teenager are always online. The virtual world means today’s teenagers are never away from the influence of their peers. There is a constant bombardment of snapchats, Facebook messages, updated viber groups messages with pictures and messages about who’s doing what, who got what, who went where. There is no escape from the peer group and the influence of family is pushed more to the side than it could have been in years gone by. In the virtual world there is also a pressure to engage in activities they might not otherwise consider. It’s not an easy situation to manage as most teenagers place huge importance on their virtual friends. 

Compromise is essential, but so are boundaries. While no one wants to fall out with their child, it’s our job, difficult as it is, to be their parent rather than their friend. They have enough friends who’ll support them through the trauma of having a cruel mother or father who insists all electronics are left downstairs at bedtime! 

Coming up with an agreement for an acceptable amount of internet usage and involving your teenager in the discussion is a good place to start. Explain your concerns. Teenagers being teenagers will always challenge what’s agreed, but try, as much as possible not to get dragged into an argument, no matter how hard your teenager pushes (not an easy ask by any stretch of the imagination). Consistency really is the key here. If you give in over an unjustified strop, you have just given them reason to have another one in the future. Less strops, generally equals less arguments. The teenage years are certainly a minefield to navigate, but I’ve met quite a few parents who’ve lived to tell the tale. So there’s hope for us all! 

Playdates!

Friday is generally playdate day here. Sometimes my kids go to their friends’ houses, sometimes their friends come here but, because I haven’t quite mastered the skill of managing to farm them all out on the same day, there are generally always other children here on a Friday afternoon. It can be a great way to see how your children mix with their peers. It can be a fantastic bribe (or threat) during the week to get them to focus on their homework, eat their dinner, put their underwear in the wash basket (tick as appropriate). It can also be a great way to keep the kids occupied on a Friday afternoon or, depending on the child who comes over and his/her effect on the group dynamic, throw the afternoon into excited chaos!ng the week to get them to focus on their homework, eat their dinner, put their underwear in the wash basket (tick as appropriate). It also can be a great way to keep the kids occupied on a Friday afternoon, or depending on the child who comes over and his/her effect on the group dynamic, throw the afternoon into excited chaos.

Playdates have changed a lot here over the years as the children have grown up. Obviously we still have a lot of younger kids coming over for the younger children but the older kids don’t have friends on playdates anymore. They have friends over to “hang out”. It can be very funny to observe a cool “meeting of minds” taking place around the dining room table over pizza as my daughter and her friends discuss important things in life, such as the Kardashians, who’s meeting who these days, and other stuff that I couldn’t possibly be cool enough to know about because I’m mam. What’s even funnier is to see my daughter’s reaction when the two year old walks into the dining room and interrupts the deep and meaningful conversation to proudly declare “I’ve done a smelly poo in my potty! Want to see?” After initial looks of absolute horror the girls burst out laughing and my daughter takes her brother’s hand and says “sure baby, show me”. 

Meanwhile, in the sitting room, where the potty has taken pride of place in front of the T.V., boys have gathered from every corner of the house, some related, some not, to admire what has been produced. No looks of horror here! Then after the two year old has been congratulated, everyone returns to what they were doing. It’s like feeding time at the zoo when the kids and their friends are called for their dinner and excited chat takes place around the table. I have to admit I love that part! Collection time involves a mad search for shoes which were discarded literally everywhere, as soon as the kids came into the house. Most recently, one child went home with different shoes, my son’s shoes, not noticed by me or the other child’s mother for several days! In our defence, there were a lot of black similar sized shoes, to wade through. 

Finally when everyone has gone I collapse on the couch, promising myself I’ll check out the playroom later, when I’ve built up the courage, to see what damage has been caused by the human tornadoes that went through it. Playdates are great, but nothing beats the feeling after when you know the kids are happy and the weekend’s really about to start. Good luck to all the mammies having playdates this afternoon!