It was our sixth night in the capital .
We were not tourist .
We were not taking in the sites ; we were not going to marvel at the Phil Lynott statue which stands proudly on Harry Street; nor were we going to stand at the foot of the ‘Spire’ and wonder why our government spent 4 million euro on a pointed stainless steel pin which is now on O’Connell street and we were certainly not going to dance the night away in Temple Bar.
No, the most we were going to see from our nights in the capital was the local ‘Spar’ along with the lonely long corridors of the National Children’s Hospital, which is located in our beautiful capital city, Dublin.
We may not have been typical tourists, but we were tourist.
We were tourists in the all too familiar wards of Temple Street Children’s Hospital.
We were not here for our ‘usual’ .
We were here for surgery; surgery which could be a blessing or a huge mistake. A surgery we never thought our son would ever need, despite his progressive syndrome; we simply never let our minds go too far into his future.
Our son Ethan, at the age of 14, needed a peg in order to keep him healthy and well fed.
We knew nothing about peg feeding up until five days ago.
We were nervous, anxious and all those feelings we all get when any of our kiddies are sick or facing any type of surgery. We were also very aware of the difficulty that faced his team when giving him anesthetic due to his narrow airway, making him very ‘tricky’ to intubate.
If he were to pull out his peg in the first few months , he would need life saving surgery . If he pulled it out after a good few months , he would simply just get a tube placed and a thing called a ‘Mic-key’ button . If he were ever to pull it out, we had to make sure it was a good few months after the surgery and get him seen to within three hours at our local A&E department.
The first night Ethan tried to pull out his peg.
You can imagine how we have been over the last six days.
We knew learning how to navigate the peg wouldn’t be easy but we were really worried that Ethan may not tolerate it at all. We didn’t even think that his body may not tolerate it, we were so focused on Ethan not tolerating it that we were blindsided when we were told that Ethan had symptoms of ‘Refeeding Syndrome’, a day after his peg was placed.
This meant that we could be extending our stay in the capital for another few days. How long would be anyone’s guess as Ethan’s bloods were done and are being done daily to ensure his body is receiving enough of everything that our bodies need to thrive.
For years we have been attending Temple street. For the first few visits, we were tourists but after awhile, it becomes the ‘norm’; anything from one night to seven nights were not unusual.
Standing outside the hospital today, we felt very much the tourists, as we both could not see how Ethan would ever understand the peg, let alone allow us to clean it and rotate it. It had taken five of us earlier to clean the area, change the bandage and turn it. How were we going to manage this at home and how was I going to do this alone?
To say it was a rough few days , is an understatement. Due to Ethan’s high needs, a ‘Special’ was called in each night to stay with him so we could rest. This was something we both really appreciated and still appreciate. We did wonder could we take one of the ‘Specials’ home with us but alas , that was not on the cards.
We looked at our choices of venues to have a meal. Spar, the Hospital canteen (which was closed), so vending machines were on offer or the pub across the road.
“Let’s walk around that corner “ D pointed towards our usual feeding spot. “Ahh, ok but I think there is only that cafe there, it’s after 10”. The truth was , I didn’t want to eat, I didn’t want to turn the corner, I knew it was far too late to eat in the pub so I was happy to grab another pre-made sandwich from ‘Spar’ but D had, had his fill of pre-made everything. I sighed as the wind howled , I glanced at my phone. “The volume is up, you will hear it” D rubbed my back as we quickly walked around the corner. “I am pretty sure that cafe is a bar too, so it might do bar food after ten” D was far too optimistic for my current pessimistic state.
We walked for less than a minute. The sign said ‘food until 10’.
“It’s after 10 though” I sighed. “Come on, let’s just see if they will serve us” D pushed the door open.
A smiling face greeted us.
“Are we too late for food?” D asked as I glanced around. The place was busy. The posters on the wall caught my attention; idols from my favourite era of all times hung all over the walls. I smiled. The music floated above us as the girl replied “Not at all, table for two, yes?” We nodded. “Follow me” she sat us down towards the back, in between a hen party and a group of French rugby supporters all enjoying a beer or several.
I sighed, I admired the whole place but I did not need this level of noise. I couldn’t help but feel, if I were in a better place emotionally , this would have been the perfect bar for me.
The girl appeared. “Sorry about the hens, they have had that booked for months” I smiled at her, feeling like a horrible miserable person who must look like a right old boring fart with a scowl on her face. I was hoping I hadn’t a scowl , but I can’t honestly say if I did or not.
“Not at all, they are having a blast” D laughed as we placed our orders.
They were. They were having a blast. They ate, drank and danced. They were full of life.
I found myself singing along as the mother of the groom (thanks to the sashes!) entertained the whole cafe bar with her unique dance moves (I’ll say no more, ladies!)
The staff all danced and sang with the hen party all while keeping up with all their tables too. It was impressive.
I laughed when the French men came down towards the Hens to take some pictures and ended up bringing D out for a dance.
I was laughing so much tears came to my eyes.
I needed that laugh.
It was lovely to be around it. I, for a split second felt like I was on a night out too. I don’t know how the managed to make me forget I was staying at the hospital for the past few nights and had a few more nights ahead of me yet; but they managed to and i’d like to thank them for that- so thank you Hens and French rugby supporters!
Our meal was beautiful and so reasonably priced ,that we decided if we got Ethan settled early enough, we would come back.
The following night we were too late leaving the hospital but on this night, our fifth night we were just in time to make last orders ( for food!)
I began this piece sitting at the table of the cafe enjoying homemade soup, a glass of coke and a chat with the owner Johnny.
D, Johnny and I , sat for over an hour having a chat while we ate.
We were the last costumes of his night, but I got the feeling Johnny was this friendly to everyone. It showed in the way his staff had spoken to us the previous visits, I say visits because we got a takeaway coffee the day before, and the girl insisted we take some biscuits – it was a lovely touch, a simple touch, something you don’t see in many cafe bars, it felt very personal to me, like they wanted us to feel at home with the plate of biscuits laid before us as soon as we ordered a coffee.
I felt at home there. I felt at ease as Johnny poured the coffee and got the biscuits out as we finished our meals.
We left the cafe knowing that if we were to stay another night, we would definitely be coming back to Bleecker Street Cafe Bar ( which by the way is on upper Dorset Street).
We never knew Bleecker Street Cafe Bar existed , we have no idea how many parents like us know of their existence, but I assure you, it is a fantastic place for a cuppa especially when you just need to get out of the hospital , and go to a place where, I believe if I lived there, everyone would know your name! I am disappointed we hadn’t discovered this gem years ago!
To Johnny and your staff; thank you . Thank you for giving us a bit of ‘normality’ over our latest stay in Temple Street. We enjoyed the hens, the French rugby guys, the banter with the staff and the ‘ol biscuits…you guys have a little charming place there with an absolute wonderful welcoming atmosphere – keep up the great work guys.
We went home late the following evening.
We began our new part of our journey by panicking over Ethan’s peg, as we thought it had come out. Luckily, our friend and Ethan’s ERT nurse was on hand to tape it up and reassure us that it was ok.
We are home almost a week, we are trying to get used to Ethan with the peg.
It hasn’t been easy, but I imagine nothing worthwhile in this life is.
The bottom line is he needs it.
It can only get easier ; isn’t that what they say?!
This was originally published on FamilyFriendlyHQ