Beyond The Gates


It was a cold winter’s day with the promise of a white Christmas on the horizon. We drove through the gates in silence.

It was bigger than we thought. The grounds were sprawled with buildings , shrubs and a few Zebras which did makes us smile.

We took him out of the car as the cold air hit his face “No “ he roared. He was hungry, it had been a long drive and we had hoped food was first thing on the menu for our very first visit. “I’ll leave the bags and get them later” D broke the silence as he handed me Ethans backpack. I nodded.

Slowly we made our way towards the automatic doors. We pressed the buzzer.

“Hi guys! You must be Ethan” she smiled down at a pissed off Ethan. She introduced herself as the receptionist and shook our hands already familiar with both our names.

“You are very welcome here guys, we have a load of people excited to meet you, especially you Ethan” she once more smiled at Ethan , who by now was thinking about nothing other than food as he yelled “Go way”.

We followed her as she lead us down a colourful corridor and around a corner to a much wider corridor with bedrooms bordering a circular desk where two ladies were sitting typing at computers while Disney music played.

“Hi Ethan” they said in unison as they got up from their desks and followed us.

We entered the room. It had a double door which lead out to a garden area, it had a proper equipped disabled toilet and another door leading to an adjoining bedroom which was where D and I would be sleeping for the next two nights.

“Ok, let me get you tea, biscuits and Ethan would like what ” She smiled. “Some toast if that’s possible?” I sat down as D started up the Smart TV which hung over Ethans bed.

“For Ethan, anything is possible” she smiled and left.

The other two ladies gave us a quick rundown of what to expect in the coming days.

Soon we had a lot of visitors; not the visitors that come baring gifts, flowers or grapes, we had the visitors that want to know all about Ethan and us.

Ethans food arrived within minutes and so we began our day of getting used to our surreal surroundings. It was surreal.

We had a nurse who shadowed us daily; she was eager to learn how to manage Ethan, how to play with Ethan and how to engage with Ethan. Twice a day our nurse changed over until Ethan had been shadowed by at least five different nurses, each of them as helpful and as wonderful as the one before.

They didn’t look like nurses. They didn’t talk like nurses. They had the time to help unlike nurses on a children’s ward, who are ran off their feet, these nurses were assigned to Ethan and us .

We were sent off to the canteen for food.

Any family like ours knows how expensive a hospital stay can be; and we were treating this like a hospital stay. We had planned out how much this stay would cost us and even threw in a bit extra for a magazine here and there as we all know how bad WiFi can be too in a hospital.

Canteen isn’t the correct word for the place we found ourselves standing in. It was more like a restaurant . The food was amazing. The choices varied and the servers beyond friendly.

As we stood looking into the selection of food, a man approached and recommend a dish to us. He introduced himself then asked if we were having anything to drink as we had nothing on our trays. “Don’t forget dessert!” He laughed as he walked off.

D informed the cashier of our purchases, when she smiled and said “Families don’t pay, sit down and enjoy”.

This shocked us.

It might not sound like much to you guys reading this but eating breakfast, lunch and dinner plus endless cups of coffee in a hospital can cost you a small fortune, to hear we didn’t pay for food stumped us.

“I guess that’s a huge difference “ D whispered as we sat. “Between that and the layout of the place, not to mention the WiFi signal, I really think it is very different, don’t you?” He asked.

We had spoken earlier about how we were worried Ethan would think he was in a hospital. Ethan does not like hospitals, neither do we for that matter, but we were very worried about Ethans reaction.

“Yep, that’s definitely different from a hospital” I agreed.

“Take a walk around, have a look at the gardens and after we have a movie in the living room” Ethans nurse smiled as she took her break.

It hit me then. We were not in a hospital.

I saw the bench, the fairy gardens, the butterflies, the sculptures, the playground, the inclusive playground, the sensory garden and reflection seat…

Yes, we were in a children’s hospice. We were in the only children’s hospice in Ireland. We were standing in LauraLynn.
The very same place I’d happily donate too but didn’t really want to hear about the reality of it. No one wants to hear about sick kiddies.

I’d only ever seen it on TV and even then I’d switch it over because it was sad.

I was wrong. My assumptions about LauraLynn were totally wrong and founded completely around that one word; the word no one likes to say or hear : hospice.

LauraLynn isn’t sad.

 

It’s a place full of warmth, laughter, fun, memory making and craic with some great great kiddies mixed into it all.

Yes there is a place for all that sadness, but you won’t find it walking around LauraLynn. Any support you need is given and the time to talk is offered over and over again.

I had the privilege of meeting a good few kiddies who faced more in their lives than many many adults and each one of them, every one of them, were smiling.

The staff are not staff.

From the cleaners to the doctors they are all welcoming, happy, friendly and chatty, very chatty.

Yes; it’s a surreal place to be in .

Yes; I didn’t ever want to be there in person.

Yes; it’s a reality no parent wants for their kiddies but it is magical.

There is something about LauraLynn that is sacred ; it’s a haven, a break from it all and yet quality time spent with your seriously ill child with help on hand.

Ethan took a sensory bath; I wanted one too!

I have never seen anything so wonderful in my life. He played in the sensory room and even had a different bed delivered into him as we were afraid he wouldn’t settle. He slept both nights and we are now hoping to get the same bed for home, thanks to the wonderful OT in LauraLynn. Ethan began to get comfortable with all the nurses, doctors and kiddies. He laughed , joked and walking the length and breadth of the place.

They all got a laugh out of him not coming out of the lift as it is mirrored and with Ethan being vain, let’s just say it took coaxing to get him to stop admiring himself long enough to leave the lift.

D, Ethan and I sat watching a movie in the living room area while darkness fell all around outside. We each took Ethans hand and for the first time in a long time, we were present in that moment, fully present. We weren’t thinking about his meds, cleaning his peg, or body or getting his food ready; the nurses were ready to do all that; all we had to do was be mammy and daddy.

Let me tell you right here; that is priceless. That is a gift that no one has ever given to us until now.

Thank you LauraLynn.

And that is what LauraLynn is all about , giving back some normality to families to be just that; families .

Our other boys will be coming on our next visit to what we now call “Ethan’s hotel”.

This was originally published on FamilyFriendlyHQ

 

 

8 comments

  1. How amazing that you were able to be fully in the moment and not think about his condition or meds – you are right, that is absolutely priceless.

  2. Indeed such priceless moments. I am not yet a mom but I can already feel the love you have for your little one. No amount of another time nor money can replace this quality time.

  3. Oh I’m so glad it wasn’t how you imagined. We spent a lot of time in a hospice with my Nan &, despite the associations with the word, it was actually a fabulous place in terms of care and facilities. Sending love x

  4. I just love this post – very inspiring. It’s a great reminder for us to enjoy the moment which is indeed a priceless gift no one can ever take from us. I am glad to hear you were all treated well.

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