Stevie …

There’s a plight in our country.

This plight takes many shapes and forms but the one thing which is common within this plight is the love and role of the sibling(s).

We all love our siblings, even though they may annoy us. They are forever linked to us and we to them.

My eldest sibling O, is a warm, funny, creative man.

My brother O can be childish, unreasonable and sometimes moody.

He is just like any other brother except he is in his 40’s and my parents both care for him.

My brother has Down syndrome and will always need someone to help him navigate this world we live in.

Families like mine, always have one eye on the future.

What happens when my parents are too old to provide the level of care my brother needs?

O will always have us, his six siblings, we will be there, but we will hope that O will get all the services and supports he and we both need.

O has never received respite; back when he was younger, it was simply never offered. The older he got, the more used to his routine he became. My parents tried on a few occasions to get him to attend some form of respite but my brother is stubborn. He refused and so work and home is all he knows and loves.

I couldn’t imagine my brother anywhere else apart from home.

My brother doesn’t have complex needs, he doesn’t require even half the care my 15 year old son does but he does require help, support, round the clock monitoring and obviously the same thing every person in this vast world needs; love and understanding.

But, as his siblings, it is always in the backs of our minds, what will happen when the caring becomes too much for our aging parents?

O could never go into residential care; to him it would be so foreign that we feel he would never cope or understand. O does not have physical needs or many medications. No, we as his siblings will care for him in his home, surrounded by his things.

We are one of the ‘lucky’ families, we are a big family, we are a close family and we all try our best to provide respite for our parents; we will figure it out .

I am telling you all this because yesterday I was sent a link.

With it was a personal message.

A sibling begging me to help shine a light on the plight of her brother, Stevie.

Instantly I connected with her. As a sibling I knew these worries. As a sibling I knew how much her heart was breaking trying her best to be heard by the disability services in her local area (Longford).

She wasn’t asking me to write anything, she was asking me to simply share her story, Stevies story.

I’m not a reporter nor a journalist but I am a writer and more importantly, I could relate to every worry she has, sadly I can relate to the anger she has too.

Her brother, Stevie, needs to attend a residential care unit. His mammy, (his full time carer for 28 years) is ill. She cannot continue providing Stevie with the care he needs.

That alone, as a mother, I can tell you is heartbreaking.

It’s not even her decision, her doctors have insisted that she no longer can provide the care to Stevie. I can only imagine the guilt she feels.

Us, mammys are fantastic with laying blame and guilt squarely on our own shoulders,huh?

Stevie is currently living in temporary respite accommodation.

The word temporary here means, the HSE are trying to find other accommodation for Stevie.

They are doing what they can. They have come up with a place for Stevie but it is far away from everyone and everything he knows.

Not only will Stevie be leaving his home to live in residential care , but now the solution is to move him away from the day service he knows, his family, the staff who know him, his respite centre, his siblings , his mammy…

Stevies sister’s request isn’t a big one.

She is simply asking to keep Stevie in Longford. Let him keep the people, the routines and the staff that he is used to. He will have enough upheaval leaving home as it is, why make it more difficult for him?

Stevie cannot say this himself for he cannot speak.

Stevie cannot tell the powers that be that he needs some stability, now more than ever.

While Stevies’ home life will change dramatically, the powers that be, have the power to keep Stevie in his day service, so at least he has that much stability in his life.

His siblings must be his voice, they must continue the advocacy that their mammy, has been doing all Stevies life.

There isn’t a choice when it’s your brother, your sister, your mammy…your family.

To the disability services, you guys do some great work.

All that is being asked here is to listen to this family’s plight; all they want is for you to help put some stability into Stevies life when he needs it the most.

Yes, there is a plight in our country.

I’ve told you about two very different plights but they both boil down to the same thing; we all just want to keep our sibling surrounded by what they know , who they know and what makes them happy.

Stevie has been attending his day centre since he was 2, Stevie is now 28 years old.

We know we will have to make hard decisions, we know we will always have to be some form of an advocate but we also want to know that our sibling is being cared for in a place that they know, with people who care and are familiar with them- it’s not a big ask is it ?

We just want stability in a time when everything is changing for our siblings and us.

It’s hard to watch your parents age, it’s hard to watch your mother cry over being too ill to do the physically caring for your sibling – it’s hard being the sibling because there is role that many siblings will never be aware of.

A role we take on with pride and a fire in our bellies for we have watched on the sidelines as our parents did the very same thing throughout their lives.

Yes, we are the siblings.

Yes we are becoming the advocates, the loudest voices in the room for we were taught at a very young age that our siblings have a right to be heard.

This was originally published on FamilyFriendlyHQ

To read Stevie’s story click here

10 comments

  1. A thought-provoking post. I can’t even imagine what Stevie’s family, and your own family, must be going through…I hope that Stevie isn’t forced to move away from everything he knows and loves. These issues wouldn’t be so well-known if you didn’t raise them, keep up the good work x

  2. If we could all give love and understanding regardless of anyone’s situation this world would be a better place, I can see all the love you have for your brother and you should be proud of your and your family!

    1. Me too. It is shocking all they have been through , fingers crossed Stevie gets to stay where he knows and with the people he knows and loves . Thank you for reading

  3. Such an unnecessary tragic situation for a family to have to endure and I so hope that the health service listen and Stevie is kept close to everything he knows and loves. Good on you for sharing this story and I hope it helps shed some light on an issue that desperately needs addressing.

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