Feels like Murphys Law!

Neither holiday was one any parent would like to go on or any sibling would really comprehend.

One was a Make-A-Wish trip for his bigger brother, Ethan and the other was a Share A Dream holiday, also for his brother.

These ‘holidays’ were magical and everything you could possibly imagine but they were emotional, more emotional than anyone could prepare for.

My middle son J, was 4 the first time he went on a plane and 6 the next time. Both holidays were about making lifetime memories for his older brother, Ethan,who has a terminal condition called Hunter Syndrome.

While we all did our best to ensure J enjoyed these holidays, it was very obvious even to a 6 year old that these trips were not like any other average ‘family’ holiday.

My husband returned to higher education at the age of 31 which was a daunting experience but after 5 years he is a qualified computer scientist and starts his career this August.

I am a stay at home mother, because I have to be. Ethan needs to be cared for 24/7. I am what is called in Ireland – a full time carer.

As a carer, I get something that is called a Respite Care Grant, once a year, since Ethan was diagnosed back in 2008. It is not a lot of money, but it is given to each family in order for them to enjoy some form of respite.

Respite is a break. For us, it is a break from the back breaking, heart wrenching , emotional toll that comes with raising a child who is terminally ill, which is no walk in the park… but we do know how lucky we are to have our gem Ethan here and with us.

We have never been in a position to actually use this grant for what it is supposed to be used for. We have always spent it on our boys but Ethan especially , as anything that has the tag ‘specially adapted’ or ‘special needs’ costs far more than a regular old bike, for example.

We recently have been given a placement for Ethan in a respite center, which means once every six weeks or so, Ethan has a night away, sometimes two! This is a God send to us and helps us spend much needed time with our two youngest son’s and each other.

Our world is always about what Ethan needs, what appointments Ethan has, what will benefit Ethan, how Ethan is doing …

When we’ve all those thoughts dealt with along come more; how does Ethan’s behaviours and medical needs affect our boys, their feelings, their needs…are we spending enough time with them..do they know they are just as special and loved as Ethan is…they are the endless stream of thoughts that run through our minds daily.

It is tiring and that is before we do any physical activity with any of the boys!

This year my husband surprised me.

I got a letter from Ethan’s centre informing me that Ethan had five days of respite in August.

My husband handed me another letter- he had us booked into a beautiful hotel in Costa Del Sol.

I cried when I saw that our middle guy, J was also coming.

“He will have us to himself for 5 days”  my husband kissed me.

“I used the respite money, we did back it a little bit, but not too much, and …did you see the dates?” He smiled pointing at the bold writing on the letter.

I nodded as my eyes began to water.

“Happy birthday !” He was delighted he had managed to surprise me, despite me asking him over and over again- what should we use the respite money for. He did have me convinced we were going to a B&B for a night and perhaps a swing for Ethan, the rest was going toward bills, as usual.

“One more thing, A and her son are coming too, so J has a pal, for when he gets bored!”  He rolled his eyes, just like our tween tends to do.

A has been my friend since I was 15. She is a single mother who works harder than most and still has a happy smiley face when I ask her for a million favours. She is excellent with Ethan and knows just as much as I do, when it comes to his needs. If anyone deserves a break away it is indeed, A and her son.

I was speechless and extremely excited. This was going to be the first time J had a holiday, all about him and all for him. My little J in the middle needed this, as this past year has been a hard year on him. He is beginning to realise that Ethan is losing skills and is aware of the boys who have lost their lives in recent months.

“The toddler will be minded by both families”  my husband answered before I asked.

“And the hotel has a kiddies club incase J does want to get away from us for a bit!”

“That is amazing, honestly. I cannot wait to see J’s face when we tell him!” I could feel the excitement building within me.

“Let’s leave it until the morning we go, the surprise will be great but if we tell him now…” we both laughed. J has ADHD and finds waiting very difficult, especially waiting for something as special as a holiday.

Scrolling through social media, yesterday, my heart skipped a beat.

“Who did we book with again?” I asked my husband as he swept the floor.

“Lowcostholidays , why?”

“Fu*k. Fu*k. They have gone bust! Look!”  I showed him my phone.

His face turned pale.

“Is this breaking now? On a Friday evening when there is no one in their offices?” He began to desperately search for his emails from Lowcostholidays.

We will visit our bank tomorrow morning with the hope that they can help; but the reality is we paid using a debit card not a credit card.

We paid for everything including insurance but alas the insurance doesn’t cover the dissolving of a company.

We may have our flights, if we could get hold of someone in Aer Lingus, given this happened on a Friday (late afternoon) it is, understandably hard to get hold of anyone until Monday.

So the best case scenario , we have flights possibly but no where to stay unless we pay for the hotel- again and transfers and insurance…something I am pretty sure many holidaymakers are not in a position to do, not just us.

Turns out it could have been worse, we could have already been on our holiday and then forced to pay our hotel all over again…or we could have literally just booked with lowcostholidays hours before they announced their demise. (I’ve read more than one comment from fellow would be holidaymakers that they literally just booked then the company announced that they were closing,also many are away and having to pay again for their accommodation)

Is this behaviour ethical? Did lowcostholidays really have no idea that there was a possibility of this happening? They were still offering discounts on their website as recently as Thursday evening. I find it very hard to believe lowcostholidays had no clue about its possible future, yet they still continued to take money and bookings.

We are obviously not the only family affected by this, but this is our story and what lowcostholidays have taken away from us; a simple holiday with our middle son- a break from all the hard days we do have at home and a few days just for him and us.

We cannot get a refund or even plan a mini getaway in Ireland; we simply cannot afford that, an all inclusive holiday was our way of cutting down the cost. I am also sure, we are not the only family who cannot simply pay twice for a holiday. So while all the helpful links are telling us to try and claim back or take our flight and pay for the hotel again many of us are not in that position, regardless of (maybe) getting some of the money back months later.

There is one thing I am grateful for and that is my middle guy had no clue about this holiday nor had A’s son, so at least we don’t have two disappointed boys to deal with on top of losing our holiday and giving away our money to lowcostholidays.

I am hopeful we may see the sun in Galway around the 14th to the 19th of August.

This was originally published on FamilyFriendlyHQ