Another week has gone by, but what a week it was. Today is Sunday, a day that I tend to stay home with my two boys and try to unwind while getting ready for the week ahead. This morning, so many thoughts and honestly not a lot of clarity.

Questions, though, loads of questions…and so I muse…

Earlier this week I had the wonderful opportunity to be on the Today with Sean O’Rourke show on RTE Radio One. (Please listen here:  The Plight of Carers  ) Since it aired, I have been blessed with contact from families across Ireland who are in the same shoes as myself, or very close to the same shoes. It has motivated me, inspired me, and furthered my resolve and commitment to helping create change for the better when it comes to our disabled children and their family caregivers. So, a huge THANK YOU all of you out there who fight the daily fight along with me!

And, a tremendous, heart-felt thank you to Sean and all his staff for giving me the voice! Bless you. 

Yesterday, I had my first home nursing respite in nearly a year. The HSE had originally allotted 5 hours a week of respite for me. (Never mind my work as a full-time carer is 24/7). But, it was later decided that my son is that fragile, that medically complex…which is true…that he needs TWO people to care for him. HSE refused to pay for 2 nurses. Respite got put on hold. I came up with the idea, which I proposed to HSE, of a nurse and a home care assistant because the HCA is paid less. Watching out for HSE funds, that’s me! (see the grin on my face?) The answer was no again, too expensive. Oh, and Tracy, the nurses won’t work a 5 hour shift, it’s not worth their time, so they want a longer shift. Respite got put on hold, yet again. Finally, I said ok, ok, cut the hours of respite by a few hours to pay for the HCA and let’s do respite twice a month instead of each week. After more waiting, it came back to me, via the respite nurse, not the HSE or the healthcare agency, that my respite hours were cut from 5 a week (20 a month) to 10 a month and they were to be taken all in one timeslot. Wow, I thought, 10 hours at one go with my 8 year old son leaving the house and doing…what exactly? (Side note: in some areas of Ireland, parents are being told that they CANNOT leave the home when the respite nurse is there! That is NOT respite! More to follow on this matter)

We gave it a go yesterday. It didn’t work so well. It was too long of a time to basically force ourselves out of the home so we could go “recharge”, which is what respite should be about. There was no recharging, despite my best efforts. We drove to Liffey Valley to get my glasses fixed and exchange some items at Dunne’s. Ok, we had lunch too, which was indeed nice enough, yes. The siblings of our special needs children often don’t get one-on-one time with their parent(s), so to hold his hand as we walked along was beautiful.

STORY TIME: So there we were, my son Declan and I, standing in the queue at Dunne’s customer service. There was one lady in front of us waiting, no one behind us, and one lady being helped at the desk. Now here is where it gets interesting. The lady being helped was a Dunne’s employee. She had her uniform and nametag on, so there was no missing it. She was exchanging some wall hanging that seemed to have a mysterious origin because the gal at the till wasn’t sure what to do with it. At the end of the counter were 3…count them THREE…other Dunne’s employees all staring at a computer screen trying to find this item’s serial number. But wait, up walks employee number 6 to say she can’t locate the item on the floor. By this time, 2 other people joined the queue to watch this farcical fiasco. Being the bold, often outspoken person that I am, I politely commented aloud that since there were 2 other tills, maybe one of them could help the customers that were waiting. Two of them diverted their eyes from the computer screen to look at me, then went right back to ignoring me. The lady in front of me in the queue found me quite funny, giving a giggle and a wink to me. I said, “This reminds me of the joke, how many people does it take to change a light bulb?” She laughed again. And we waited. And waited. Finally, a second till was opened and we were relieved of our having to watch incompetence at it’s finest.

Now, I know, I am being a bit harsh. But, here is what I was wondering while I was so impatiently waiting: Is this, at least in part, what happens in our government that makes the system so dysfunctional? Too many cooks in the kitchen all trying to figure out what the recipe calls for? Arguing about what spice to use, each clamoring to get a taste of it before the other guy, all the while no one paying attention to the fact that the dish they are attempting to create is getting burned?

Let’s all think about that. Who is getting burned? How are the disabled and the carers in this country doing, really? 

Back to this week. A chance to have our story told – the story of all the families across Ireland who have a profoundly disabled child, no matter the age – and the struggles we face. A chance to announce a new campaign (Profound Ireland) to facilitate changes within the system that will better the lives of those with profound disabilities and the families who care for them. And a chance for me to give the 10 hour once-a-month respite a go. OH WAIT…strike that. When I got home, the nurse let me know she was told she was wrong. I don’t get 10 hours a month after all. I GET 8 HOURS PER MONTH.

Deflated…momentarily.
Back to the negotiating table, so it seems. 

Sunday morning musings…

Who is ready to join in and raise their voice with our families who have profoundly disabled children? Who is ready to work for system reform so that our families can have a fair, equal quality of life and the services and supports we need?

And if not you, then who?