Bernadette Scully and her daughter Emily Barut. It’s not an easy topic to discuss especially for parents like me.
It is a topic which needs to be discussed but those who don’t live a life like Bernadette’s can never really understand.
My life has changed dramatically in a little over two months and to say it’s been hard is an understatement. I hope by sharing this ; you the general public can help when the Carers of the country tell our government that we need more supports because quite frankly we do. We need far more than the government are currently giving us and those who work with kiddies like my son Ethan.
Last week there was a meeting called. It was the second meeting to happen within weeks. I was only invited to the second sitting of this meeting; because everyone at the first meeting needed to understand what their roles were, before including the parent- me.
Ethan isn’t unwell- he hasn’t got a flu, a bug or something that requires pain killers.
Ethan is going through a decline.
His syndrome is a progressive one, which means Ethan will never get better.
Ethan’s brain has shrunk, meaning his abilities have all declined – Ethan’s brain isn’t receiving and sending messages like it used to.
We have to find a medication that can calm down the side effects to this.
I, his mammy , have had to hold him down so he can’t hurt himself while he screams and shouts until he cannot catch a breath.
The side effects to shrinkage of the brain are not easy, they are horrible for him especially, but horrible for us all.
Ethan is not responsible for any of his actions- it is important to me that you guys reading this know and understand that.
Imagine being me for one minute- two months ago I had a happy child, laughing , talking , eating and generally happy; yes he had his moments of meltdowns but he was overall happy. And yes, he was still a terminally ill child but he was ‘holding his own’.
Today, I have a very different child.
I have seen Ethan smile three times in two months.
He doesn’t kiss, hug or ‘blove’ on anyone now.
Ethan will be fitted for a peg soon; the same kid that I couldn’t trust to leave any bit of food around, will soon be peg fed.
The child that slept over 11 hours each night now needs medication to help him sleep.
Some nights he sleeps , some nights he doesn’t.
I sat in this meeting and listened to everyone who works with Ethan and who is involved with Ethan talk about what supports they need in order to do their job to the best of their ability and to ensure Ethan’s safety too.
I nodded agreeing to what they were discussing.
Ethan has a good team of people looking after him when he’s not at home.
When Ethan is at home; it is just me.
Just me and my two younger boys Monday to Friday until around 6.30pm when D gets home.
I don’t get supports. I don’t have an extra person here to help me and I sure as sh*t have no idea where I could find one- I am just told that there isn’t enough resources.
The professionals all need two people to manage Ethan; yet I am expected to manage Ethan and my two other boys and run a house by myself.
I don’t have home help.
I can’t take the time Ethan is in school to go out and about because I am at home preparing dinner, changing his bed clothes, ensuring his bedroom is safe, checking the sitting room and the dining room is as safe as it can be for him ; in case I have to leave him in there so I can use the toilet. Then there’s the phone calls I’ve to make, the emails I’ve to send and the appointments I have to attend.
I have great friends and family but they cannot put their lives on hold while we try to learn our new way of life with Ethan.
I am home with the boys every single day. I cannot bring Ethan out and about because I am afraid of what he may do; add a toddler who is refusing to listen to me along with an eleven year old who has severe ADHD- going out even to the park brings me out in sweats, I simply cannot do it without another adult.
I always presumed that when Ethan had a decline that I would have more supports than ever; but that’s not the case. In fact, Ethan gets less respite because we have no idea if he will sleep or not add to the fact that he needs more than one staff member with him at all times and you’ve got less respite due to staffing issues. (This is not the respite house fault- it goes much higher than them)
I cannot stress enough how those people who work on the front line with Ethan are amazing; they are- but if they need help and extra supports to care for Ethan why the hell don’t parents get the same?
Bernadette Scully and her daughter Emily is a tragic story ; but one our government must listen to and learn from.
Where is the support for parents like Bernadett, parents who have terminal children to take care of, parents like me- the emotional roller coaster of raising a child with a terminal condition is unbelievably heart breaking ; it is enough — everything else from home help, financial support, support for the other children in the home, respite should all just click into place — haven’t we enough to deal with knowing our children won’t reach adulthood?
I have no training in caring for a terminally ill child; yet I am the one who is least supported while caring for my terminally ill child.
I no doubt know Bernadette loves her Emily just as much as I love my Ethan but Christ ; I know how hard the day to day life is …
We are not saints; despite what the general public thinks- we are not saints – here’s the truth:-
We lose our temper, we get frustrated (mainly with the HSE and all the supposed services there to help our families) we cry, we cry a lot to be honest. We are isolated. We feel like failures as we watch our child in pain. We can find it hard to find the joy, we don’t always see it because we are often too worried over the lack of fluid or the lack of food our child is eating. We are exhausted. We can be short tempered especially with extended family and friends who are simply trying to help. We can feel so disheartened by a simple fly away comment ; we can be very sensitive yet we can let other ‘stuff’ roll off our backs. We feel guilt like we are the only ones ever to feel it! We feel like we have never done enough. We feel disappointed in ourselves when we forget to keep a promise we made to our other children. Yet we try every single day to do better like all parents the length and breadth of this beautiful island.
We are and continue to be the forgotten group of people in Ireland despite saving the state a fortune by doing all the caring for SFA( sweet fu*k all) pay.
We do all this because we love our children. We would do anything for our kiddies but we need our government to hear us, to see us and to help us.
I hope I never read another story like Bernadettes because that is truly heartbreaking – that is something that could have had a different outcome, had she had the supports she should have had, in my humble opinion.
Rest In Peace Sweet Emily.
This was originally published on FamilyfriendlyHQ