Regrets , anyone ?
We don’t talk about them much, but I think most people have regrets – Mr. Sinatra was very lucky that he had too few to mention, eh?
I have regrets.
I have personal regrets, which I am not going to bore you with, instead I am going to talk about a regret which sometimes catches me off guard.
In 2008, Ethan was diagnosed with Hunter Syndrome.
In 2009, Ethan was granted a wish by the wonderful Make-A-Wish. (MAW)
He was nominated by our local Tesco.
We struggled with, firstly the thought that our little boy met the criteria for MAW.
That’s a huge reality to try to accept; despite doctors and specialists telling us what Hunter Syndrome had planned, we, at the time, couldn’t see it becoming our reality.
We had a little boy who played, joked around, spoke, ran and was very much a typical seven year old with a few behavioral issues and a hearing impairment .
It was, back then, very hard to acknowledge what Hunter Syndrome would do to our whirlwind son.
We struggled secondly, with what to do with a once in a lifetime wish.
Ethan told us he wanted to see Mickey Mouse and all his friends from Disney.
We showed him pictures of Disneyland.
‘There. Disneyland whoo- hoo’ he ran around the house as the ‘fairy’ from MAW laughed and handed us forms.
‘Disneyland it is. Florida, yes?’ She presumed.
This is where the regret comes in.
Ethan’s behaviour was always difficult. His sensory issues were always hard to manage and his excitement over things often lead to extreme behaviour; he was reckless, a ball of energy, no regard for his safety and he never sat still.
He was hard work.
Hard to manage.
Hard to keep calm.
Hard to anticipate his reactions.
Hard to keep focused.
We exchanged looks.
Could we manage Ethan on a plane from Ireland to America?
Could Ethan handle it?
We decided there and then France was more suitable.
And that’s what we, his parents, both regret.
We focused on the wrong things.
We focused on how hard it would have been to fly with Ethan for that length of time. We focused on the busyness of the airport. We focused on possible flight delays. We focused on Ethan’s behaviour.
What we didn’t focus on was; that this could have been one of the last times Ethan could fly anywhere without medications, wheelchair, extra supports and papers from doctors telling the airline what to do in an emergency.
We didn’t realise; despite being told, that Ethan’s syndrome could only ever deteriorate.
We went to Euro Disneyland and had one hell of a trip.
It was indeed a dream come true not only for Ethan, but for us too.
Hindsight is always a great thing.
If we knew, that as the years went by, Ethan would slowly forget his love for Disney we would have gone to America despite the potential stress of getting there and back may have caused to Ethan and us.
It was hard back then to comprehend that our child, who could name every single Disney character would eventually forget them; he would, in time forget the love he had for them too.
And yes, we regret that we didn’t bite the bullet and go the whole way to America.
What I’ve learned since?
Ethan’s behaviour no longer dictates where we go or where we don’t.
What now dictates it for us now, is accessibility.
We go on day trips, often.
We encourage ‘wildness’ and ‘mischief ‘in Ethan when he gets overly excited these days.
We are going to a Halloween parade for the first time ever, in our local city of Galway.
We no longer worry about the behaviours of Ethan in public.
We only worry about his sensory needs, accessibility and accessible toilets (Space to change to see what I mean by accessible)
And you know what? That’s enough to worry about.
I’m tired of worrying about Ethan’s behaviour and how others react to him.
I regret that we didn’t think like this back in 2009.
To those of you who are anxious about traveling via a plane with your kiddies with extra needs; take it from me, it can be done, just research and contact the airline to get the assistance you require.
Don’t let behaviours or more importantly, other people’s perception of you and your kids, stop you from getting on a plane.
Regrets, we all have a few.
This was originally published on Firefly Community
Great piece Ger , and food for thought as we are hoping to get on a plane next year .. x
Do it Sinead. The airline can be very helpful if you ring and arrange in advance x
Oh Geraldine, I can’t imagine. I want to say I understand by talking about something that happened to us, but I can’t. I can’t imagine. Even though I am a massive cynic and I’m quick to doubt a lot of things, I’ve also come to realise you really have to look at the bright side of things if you want to survive. I hate saying ‘at least’, but is it any consolation at least that you got to go away and have a fantastic time? I know that’s no help … But what wonderful memories you made!
Ethan looks like quite the mischief maker – even now! There’s still that cheeky twinkle in his eye. He gets that from you, no doubt.
We did have a blast and I am forever grateful that we got the opportunity to go. Just if I had know then what I know now, I would have gone to the big one !!! Ah well , thanks sweetie xxx
I’m glad that you don’t worry about how his behaviour will affects others any more as you and your family are the most important thing x
Yes it took me awhile to learn that one and to master my ‘I don’t give two fiddlers what you all think’ look!!! Thanks for reading x
Ah, lovely words of wisdom. You are so right – hindsight is a wonderful thing, but it also brings self-doubt and a little self-flagellation. Don’t beat yourself up – Ethan had a fantastic time and who is to say that it would have been any better in US? Love your attitude though – stuff other people, it’s Ethan that matters and nobody else!
Very very valid point Tracy ! You’re right, we did have a blast . And yep stuff em all, Ethan can be Ethan even in the quietest of places !!!! X
Regrets are hard, aren’t they? You did what you thought was best at the time, It sounds like he had a wonderful trip and it didn’t matter to him that it wasn’t America. Try not to beat yourself up xx
Thanks Heidi ; he sure did have a blast and so did we, I suppose that is the bottom line. Thanks so much for reading x
Your conclusion about no worrying about what people think is so true. It is easy to judge but they are not in your shoes so they don’t know what it is like! And looking at your pics, he looks so happy! It must have truly been magical for him!
It was ! We were very lucky to have had the opportunity really. Thanks so much for reading x
Very thought provoking. It is better to regret things we have done than things we didn’t do.
That’s for sure. Thanks for reading x
It is all to easy to worry about what other’s think about the behaviours of your child though. Society has taught us that a child must conform regardless.
I have difficulties with Macsen and spend so long feeling like I need to explain his behaviour. However, in reality, he’s actually being a 3 year old with a communication barrier. I know it isn’t the same but the feeling it generates is similar.
I’m glad you got to go to Disney… I’m glad that you all got to make some beautiful memories. Florida would have been one hell of an experience BUT you did what you thought was the best decision. Had you been stressed out you would not have enjoyed it so much! Everything happens for a reason, even if we don’t know what that is! Don’t regret a thing!
Ah thanks Beth that’s very true. You’re absolutely spot on too about society , we as a society I think need to be aware that kids will be loud and noisy even if they are three or thirteen , every child is different . Thanks for reading x
Hindsight is indeed a interesting thing! I think we all have regrets and I reckon it would be pretty much impossible to live without them. I think it looks like you and Ethan had a lovely trip and a magical time. I think it’s best to use regrets as things to learn from – as you can’t go back and change anything. Cherise the memories as it looked fab!
Absolutely Rachel , thank you for reading x
Hindsight is indeed a interesting thing! I think we all have regrets and I reckon it would be pretty much impossible to live without them. I think it looks like you and Ethan had a lovely trip and a magical time. I think it’s best to use regrets as things to learn from – as you can’t go back and change anything. Cherise the memories as it looked fab! 🙂
A great blog post. Our little man has severe autism, sensory processing disorder & ADHD and we’ve thought about going to Disney but always said we don’t think we’d all be able to manage that long trip but now you’ve got me thinking we should give it a go and not regret never trying xx
Exactly. Do it! Just make the phone calls so the airline expecting you can help you and Disney can help too, there is a little quiet room there for when it gets too much for kiddies who have sensory issues. Ring them to find out more . Xx
It’s a shame you have regrets about not going to Florida, but it’s great to see how much of a good time you all had at Disneyland Paris anyway. We never really know what’s around the corner, even when doctors think they do, so a great lesson from you to make the most of every opportunity.