Many, many times I have thought about certain milestone birthdays. I have long stopped recalling my own milestone birthdays and trying to find a similarity between his and mine.
There are none.
Every birthday Ethan reaches is sadly a milestone.
I hate that fact.
Ethan turns 16 years old in May.
Back in 2008 , the diagnosing doctor had told us that Ethan reaching his 16th birthday would be something huge, something unusual for a child living with Hunter Syndrome. Something almost unheard of.
Here we are ; on the brink of 16, the almost impossible birthday. The milestone each one of us and our children reach with excitement , with one foot toying with the possibility of adulthood while the other foot is firmly stuck in our childhood.
There are things I know Ethan will never do or get to experience.
But here’s the other side to that sadness.
Ethan has brought us, his family, on a journey thus far , like no other (almost) 16 year old can.
Ethan has shown us through crystal clear eyes that people are kind.
Ethan has shown us that kindness and hopefulness are powerful traits to have.
Ethan has shown us what it is like to really live. I mean really live not just go through days.
Yes, we all go through the motions of the daily grind but within my daily grind , Ethan has personally shown me how to enjoy it. How to laugh at absolutely nothing and everything ; Ethans laugh is a mixture of pure joy and innocence, it is truly beautiful.
Ethan has shown us despite everything he goes through that there is a community around us ; all we ever have to do is ask , but honestly, we don’t even have to ask…the community just takes over.
This past week we decided we would search for some Cosplayers within our area who may be willing to dress up as which ever superhero they wish to and pop into Ethans birthday party.
We had no idea how to find these folks , so I asked on my personal facebook page.
And what happened next has humbled us , as a family, beyond belief.
Back in 2008, my husband ran a fundraiser to raise funds for research into Hunter Syndrome, that was his way of dealing with Ethans diagnosis .
Our community, the wonderful people of The City Of The Tribes , threw themselves into this event and raised a whopping 11,500 euro.
And here we are, ten years later and once again our Tribesman and further , much further afield, have rallied around Ethan and us, showing us that Ethan is just as much part of our community as anybody else. He is valued.
I have felt humbled beside a grieving mother, I have felt humbled beside a very sick child, I have felt humbled hearing parents speak of the pain they feel when their children are ignored, isolated by not only communities but also by our government …
But ,after my post was shared and messages came flooding in encouraging me to put a request over on ‘It’s Me & Ethan’ so that the wider community could help find some Cosplayers ; to say I was humbled by the response is probably similar to the level of humbleness I have felt while watching the likes of Vera Twomey fight for her beautiful Ava…and win . Pure joy mixed with the reality as to why Vera fought so hard …left me humbled.
We really, really want as many of you , who can attend Ethans party to do your best to come along .
Bring your kiddies, friends , neighbours…
There are many of you who read my writings who I haven’t seen in years ; come, if you can.
There are many of you who used to be such a huge part of our lives; come, if you can.
There are many of you that I don’t know who read my page regularly ; come ,if you can.
There are so many of you who have had a connection with Ethan at some point throughout his life ; come, if you can.
You are invited, you are ALL welcome.
This is a celebration of Ethan, with Ethan in the foreground.
You, my community of Galway and so many other places all over our island and further , helped us create this party- You guys did this.
Let me tell you what’s happening on Sunday May 13th 2018.
We are celebrating Ethan and all the things Ethan ‘bloves’ !
With the wonderful kindness shown to us by Mark, Rebecca and Kieran, we are hosting Ethans birthday in The Connacht Hotel – between 4 -6 pm.
With the absolute amazing birthday cake being created by – Sandra from Caketoons
Not forgetting some very tasty cupcakes made by – Rachel O Meara
With a few more cupcakes kindly being made by – Hannah from Hannah Bee’s Homebakery
And there shall be some Hereos and Entertainment…
We have the excellent Cosplayers Emily & Carrie from – Team Emerald Cosplay
We may have some folks from – Emerald Garrison attending .
Along with some more amazing folks from – Heroes Unite Ireland
We may even have a whole family of heroes attend ,thanks to Eileen from- 2Nerdsandababy
And no, I am not telling you who they are coming as or how many of them are coming it is one of the many surprises for Ethan and his guests on the day!
We have Eileen and Bernardo The Magician coming to show us a trick or two !
We have the decorating being done by the amazing Liz from – Partyfx by Loopy Lou
We also have a very special guest by the name of Eamon whom some of you may know from Elf Town (shhhh)
And we have some very thoughtful artistic people who are currently creating special works of art for Ethan.
Michelle Courtney – Artist
Alan Burke – For Keeps Sake
And recording it all through a lens is the very talented Anita from – Anita McGarry Photography
There are a few more bits and pieces falling into place as I type.
All these wonderful people have donated their time and talent for Ethan.
They deserve the acknowledgement although not one of them asked for it.
We hope to see you all there and for you guys to help us celebrate a little boy who has brought us on a journey no parent ever would want to go on, but has also shown us what it is like to be part of something bigger than us; his journey through his life.
Ethan hopes you will all come along and take part in some games, fun and plenty of laughter , there may even be a keepsake for you all thanks to the generosity of the wonderful Connacht Hotel .
And you folks, I would like to acknowledge your help , your generosity , your support for Ethan. It is always appreciated and my small way of thanking you all , is this invite, so if you can please come.
Becky from Cuddle Fairy , I am eternally grateful for your Twittering madness, thank you.
D’s friend Cli and our local Roscam Spar , Thank you all for the interest , help and the offers .
Thank you too, to our close friends and family for willing to dress up if we couldn’t find Cosplayers and thank you all in advance ,for all the things I am going to ask you to do from here until May xx
*And please, if you want to bring Ethie a little something on the day, he adores , adores Balloons with any and all characters on them, in all different shapes, colours and sizes …there is absolutely no need to come “with your elbows knocking” as my daddy likes to say!
You folks being there is more than enough x
See as many of you as possible on Sunday May 13th x