He is not like other 16 year olds and for a long time that hurt me.
From time to time , it still does.
When I see my friends son, who is the same age, I can’t help but wonder what my son would be like without having Hunter syndrome. These days; that is a fleeting thought. Thankfully.
I live in a limbo sort of land . One foot is firmly placed in the present while the other darts back to the past , toying with the idea of placing a toe in the future. It is a hard balancing act.
I grieve for a child that is alive
I don’t grieve for what he cannot do , or what could have been – I used to, I used to do that so often that I became bitter, bitter about life and what life was doing to us; my family and my son and all those in our lives.
Bitterness is an ally to parents like me, that’s the ugly truth. We are not these perfect examples of human beings.
I grieve as I watch more and more of him fade away . I grieve as he forgets how to walk. I grieve as he mouths the words to “Spongebob” but can no longer make the sounds .I grieve that he can no longer enjoy his favourite foods. I grieve that he no longer speaks my name or anyone’s.
I grieve that sometimes I think it would have been ‘easier’ if my son was simply born this way ; instead I have watch him fade away – there is nothing I can do to stop it.
I have been doing so much grieving over these past two years especially, that I had to pull myself out of it. I didn’t like what it was doing to me, to my kids, to my family and to my health and well-being.
I decided his 16th birthday should be a celebration of him and for him. There would be no grieving , come hell or high water I was not going to cry or feel sad.
Of course that didn’t happen as the privilege of being Ethans mammy hit me hard on Sunday at the Connacht Hotel in Galway.
There were people there I hadn’t seen in years ; they took time form their day to stop by to wish Ethan a happy birthday – I thought about how hard that would have been for them , as the Ethan sitting beside me on Sunday would not have been the whirlwind Ethan they recalled. I quickly refocused my mind to just the here and now.
I spent my time sitting beside my boy or walking him around. I tried hard not to leave his side ; I didn’t want to miss a moment , especially if he was suddenly going to get very excited and chatty , I wanted the best seat in the house.
I had taken part in an eight week mindfulness course recently and I used absolutely everything I could to stay in the moment.
I let the worries of photographs and video recordings all drift through my mind while telling myself that we had not only a main photographer (Anita McGarry Photography) but three, Natalie (Boudoir Girls) and our family friend Richie. Each one of you , helped me stay in the moment. You may think you only took pictures but you took snippets of a day that will be a treasured memory for many many years to come. You showed me through your lens special moments frozen in time forever – thank you all . And to Chris who really was a dab hand with the camera , determined to get her some great shots, which she did beautifully .
Each person who walked through the door came up to Ethan and I , many brought balloons , cards and gifts …it was a privilege to see Ethan through your eyes. I was absolutely beaming with pride ; I told Ethan over and over that this was all for him. I could feel the tears building .
Then came the Emerald Garrison crew. The room went quiet. I laughed with excitement as I spotted the Storm Troopers enter the room slowly followed by none other than Chewbacca . That dude is huge! Ethan pointed and pointed. I once again felt emotional as I brought him over to meet Chewbacca and crew.
The Flash sprung out of somewhere and was busy being mauled by kiddies and adults alike . Supergirl and Green Arrow arrived just in time to save the Flash from all the kiddies ! Thank you so much to Speedster In The Tardis Cosplay and Team Emerald Cosplay for being there for Ethan and us ; you guys truly made it an event full of wonder and awe.
I sat and took it all in.
Even Buzz Lightyear and The Hulk made a smashing appearance . Ethan adores Toy Story , these guys brought a smile to our faces and I believe everyone else’s as they strolled around the venue dressed in costumes that they made ! Thank ya You both , Craig and Cormac ,so very much for your time, talent and the huge gift .
I watched my younger brother bring his inner ‘ Spider-Man’ out for all to see. He posed, he shot webs and he made every person in that room believe that he was Spider-Man – thank you little brother for being you , always.
I had managed to keep a lid on my emotions and had to push some negative thoughts out of my mind as I watched my boy squeal with delight when the big man in red entered the room . Ethan was trying hard to get out of his seat and I began to fumble with his table , in order to help him greet the one and only Santa.
I could feel all eyes on Ethan, Santa and I, as my heart began to pound. I sat back down and brought my mind to the moment which was unfolding in front of my eyes; and what a privilege it was , that I had the ringside seat. I cried.
To Eamon and all at Elf Town thank you a million times over for bringing the magic of Christmas to my son in May. Eamon , you Sir, are a gentleman .
Our entertainment for the party was the wonderful Brenardo The Magician who held all the children and some adults in the palm of his hand. You are one hell of a MC too; thank you so much .
Ethan watched with curiosity as the magician pulled flowers from a hat, made animals balloons and even had a laugh at his little brother who wanted to know all the secrets ‘Bernardo’ holds.
I watched in awe as Ethan took Santa by the hand and ‘worked the room’.
He brought Santa , daddy and I over the the magic mirror and posed for a few pictures . Ethan may change over time but his appreciation for his appearance has never left him!
Ethan spent a good bit of time admiring his cupcakes made by the very talented Hannah from Hannah Bees Home Bakery , he did lick a few and decided that he liked that bit the best, needless to say, his daddy and I ended up eating everything Ethan licked …for obvious reasons .
We did have to move Ethan along quickly when he spotted Sandra’s creation. Sandra has been making Ethans birthday cakes for a few years now and is fast becoming an Ethan expert. She just knows what the dude likes …she didn’t disappoint him this year either as he tried hard to grab ‘Homers’ head and eat it . We got to him on time , Sandra ! Thank you Sandra for another amazing cake from Caketoons .
To Rachel and my darling Aunty ; thank you for your beautiful cupcakes and buns , you ladies have a natural talent and I hear they went down a treat. I would like you all to know that Ethan did not manage to lick any of them ! I still managed to taste one of each ,I felt it was my duty.
Ethan got so many many heartfelt gifts from you all – he received amazing collages, clothes, a portrait of ‘Homer J. Simpson’ by the lovely Michelle and even a memory box kindly crafted by Alan from For Keeps Sake
You lot spoilt my boy and in doing so , you spoiled us, his family.
It was a humbling experience to witness your kindness, thoughtfulness and your love for a boy who may not say very much these days but is able to bring people together like no other.
It was truly lovely to see those of you whom I haven’t seen in years, thanks to Ethan.
At the end of the evening my usual crowd gathered and moved every single balloon that was brought for Ethan , home to our house . Thank you Anita, Tara, Thomas, Sandy, Ian , Richie and of course Jim and Flo.
Every decoration, which were out of this world ; was taken home to our house.
We now have ‘Homer’ eating a doughnut , a frog , a lion, a tiger, a monkey, a zebra , about 6 center pieces made with balloons and a frame made also with balloons; covering our sitting room and dining room and we absolutely love it.
Liz , there are no words for your talent and I don’t think there is an end to it too as we stared open mouthed at your sweet cart! Thank you PartyFx By LoopyLou I have no idea how you do it all lady, but I am sure thankful that you do .
As I brought Ethan to bed I couldn’t help but think that yes my son is not like other 16 year olds but he is alive, he is here and he is still teaching me life lessons.
There is no one quite like my Ethan.
Thank you all for showing me that living in the here and now is often all any of us can do.
Happy 16th birthday to my son Ethan who turns 16 officially tomorrow, May 18th.
*Thank you Louise and Anita for all that you both do for us all the time x
KEEP AN EYE ON IT’S ME & ETHAN FACEBOOK PAGE FOR MANY MORE PHOTOGRAPHS OF ETHANS PARTY – DONT FORGET TO TAG YOURSELF IN THEM !