2 sons divided by stairs. A mother divided between 2 sons.

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Today the boys and I spent 3 hours away from home so that Declan could take the assessment for the Center for Talented Youth program via Dublin City University. He was invited to participate because of his very high maths score on the national standardised test. So, off we went, me proud as punch of my youngest son and excited for the possibilities ahead of him.

We drove up to the beautiful centuries old buildings of the IT Carlow Wexford Campus. The first hurdle was seeing all the other parents with their children go up steps to get in the door. “Around the back of the building” I hear a man tell me. Sure enough, there was a ramp around the back. We get inside and discover hurdle number two.

Declan’s assessment is being done upstairs and there is no lift in the building. 

I give him an encouraging talk and send him alone up the stairs amongst all the other families. Declan, my sweet youngest son, is terribly shy and I knew he’d be nervous beyond words. Out of an office comes a lady who turns out to be an instructor. She kindly stood with Brendan Bjorn while I ran up the stairs to get Declan sorted and explain to the CTY team why he was up there on his own. And with that, back down the stairs I ran. The instructor had a meeting to get to.

About 30 minutes into the assessment, Brendan Bjorn began to fill the hallway with quite the pungent odor. Yep, he pooped. There was, of course, nowhere to change him.

He had to sit in a poop and pee soaked nappy for 2 hours until we got home. He deserves better.

Brendan Bjorn and I spent some of the time waiting in the canteen. At a table near us, 4 women sat chatting. They were obviously instructors at the school by the conversation being had. I sat there remembering when I used to be just like that – sitting at my place of work having an intelligent conversation with my professional peers. I nearly broke into tears. All of that was a lifetime ago.

After the assessment was done, it took a few people going upstairs to look for Declan as other kids were beginning to come out of the room. Eventually one of the assessment instructors came down and said she’d go back up to tell the other instructor to send Declan down. Definitely a group effort, but it was done!

As we drove through Wexford town on our way home, we discovered there was an ice skating rink put up on the quay. It was surrounded by Christmas lights, making it all very festive and inviting. I found myself once again having to apologise to Declan because we couldn’t stop…because of his brother. I left the last part of that sentence out. It’s standard unspoken understanding in our house now. I don’t want it to be, though.

More and more, I want to be free to take Declan on adventures, big and small and in between. 

I wanted so desperately to stop and go ice skating with him! He’s never been. In truth, there is so much he’s never had the chance to do. I wanted to hold his hand as we skated around the rink and before he’s of the age he won’t want my hand in his any more. He still does, you see, and that special time of youth is quickly passing by. With each year that screams past, I can feel my anxiety screaming internally along with those precious, fleeting years. I need to experience these things with Declan now, and I simply can’t do most of those things while his brother is with us.

And I hate myself for even thinking this way.

The fact I’ve gotten to the point of being able to say anything remotely close to this tells me just how burned out I am becoming as a carer. 

I just want respite. Strike that. I need respite. Regular, weekly, respite. I want to be able to leave the house with Declan…just the two of us…free to discover what little adventures await us without having to worry about stairs or steps or lifts or narrow doorways or rain or wind or nappies or feeding pumps or gagging or vomit or seizures or pressure sores or…

…without having to worry about anything or anyone but us.

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International Disability Day

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Today is International Disability Day. No, I’m not disabled. I can only write from the perspective of caring for my profoundly disabled teenage son, but I will write about disability today because I am his voice.

Not enough is said about the needs of the profoundly disabled. Those children and adults who are fully dependent upon a care giver (usually a family member) to assist with every daily care task there is to be done. I’m talking about those children and adults who are totally incapacitated. This is the sub-group of people with disabilities that I am writing about today. People like my son, Brendan Bjorn.

Generally speaking, profoundly disabled, incapacity children and adults depend on their carer to be their voice in the fight for their rights and needs. So, in my opinion, you cannot have a discussion about disability rights without also including the carers of those with profound disabilities.

I am going to emotionally vomit here, so hang on tight. (I got that phrase, by the way, from a friend of mine who lost her daughter recently to complications of the same condition my own son has. It’s a great phrase.) I could write with a tone of professionalism and articulation that would represent my graduate level education, but I’m not going to do that today. I am going to write from my unfiltered heart today, with all the raw emotion that I feel.

Here comes the emotional vomit.

I’m pissed off. I’m disgusted, angry, hurt and heartbroken. I’m also exhausted and don’t want to be a carer anymore. I just want to be his mother. I want someone else to do the nursing care duties for me. I’m tired of changing nappies, administering medications multiple times a day, hearing alarms going off even when they’re not, lifting when my back says don’t do it…and so much more. I’m tired of being a nurse 24/7. I’m so damn tired.

Go back to me being pissed off, etc. I feel that way because of the feeling of not wanting to care for my beautiful, first born son anymore. Pissed off because if profoundly disabled people like my son had the full, proper supports, services and equipment they required, parents/carers like me wouldn’t be driven to this point of wanting to give up on someone they love more than life itself! Is anyone really f*cking listening?! No.

No one is really listening. 

I’m sure I’ll get a few messages saying, “I do hear you, Tracy” but that is where it will end. That’s where it always ends. I’m sorry, but to be blunt, people in my situation don’t want or need platitudes or words. We need action. Nursing help in the home. Respite away from the home. A f*cking overhead hoist system to safely lift my completely incapacitated adult sized son with a spinal fusion in and out of his bed rather than me f*cking lifting him manually on my own! Time off of this 24/7 work saving his life daily while at the same time knowing he has a life-limiting condition and so my work is, to be frank, saving my child who I know will one day die. Hard to read that, isn’t it? Imagine living with it every day.

Do you know how much it weighs on a person’s heart, mind and soul to devote every fiber of their being saving their own child knowing that one day they may very well wake up and discover their child did not wake up? It is horrific! And yet there are no counseling supports provided for parents in my situation in Ireland. What an appalling state of things.

People like my son aren’t valued by the society or the government. If they were, I wouldn’t be writing this piece with such emotional vomit. Instead, I’d be talking about how great it is that I can continue with my career while I know my son is safely being cared for by a nurse at home or how my other son would have a typical social life and be involved in activities outside of just school or how he and I would have the freedom to go anywhere we want pretty much at the drop of a hat because there would be a nurse to care for his brother at home.

We could be “typical” – even if only for those times when nursing help was there to provide care. I’ve not had any in-home nursing respite provided by HSE since summer of 2017. I’m tired.

Talk of inclusion in Ireland at the moment is remiss as well. Another thing that pisses me off. Those organisations who have the loudest voice don’t include the voice of the carers of the most profoundly disabled children and adults in the country. Why? Because people like my son aren’t valued, as I said above. And it is this fact which leaves me heartbroken and disgusted.

It’s not just the government who are guilty of this value judgement and prejudice. It’s the culture and the society, too. And it makes me damn sick because it is that same judgement of unworthiness which translates to a lack of care and support services for the profoundly disabled children and adults, and ultimately for their carers, too. 

What can YOU do to fight for the services and support which children and adults with profoundly disabilities need? Ask yourself, please, because carers like me are ready to give up caring.

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