Reality check

Ethan on his 13th birthday
Ethan on his 13th birthday

I have been asked many times from strangers to social workers–“How do you guys deal with Ethan getting older ?”

Here is a very honest answer.

Ethan had a birthday this past week. A milestone birthday. A birthday that marks so much in any child’s life; the beginning of teenage years, adolescences, girlfriends/boyfriends, secondary school …growing up.
Ethan’s’ birthday was celebrated. Celebrated with family and close friends. We ate cake, poised for pictures, took video clips, showered him with gifts and treats. It was a good day. A day to be celebrated. Yes.
Celebrate, I had that word shoving it’s way to the fore front of my mind in the weeks prior to Ethans birthday and all during his party—Celebrate.
The truth is, I didn’t want to celebrate. I didn’t feel like celebrating. I had to dig deep that day and shove a smile on my face and celebrate. Celebrate that my son who has a life limiting condition is getting older. How do you celebrate that?
I can celebrate my Ethan, any day of the week, I just find it very hard to celebrate Ethan getting older. I don’t see much to celebrate as he ages.
Every birthday is difficult, every birthday I’m reminded as I look around at the ‘Mickey Mouse’ gifts, balloons, clothes, cakes … that my Ethan isn’t ageing. He isn’t ageing at all. He will be forever my toddler, my baby, my two to three year old in a body that doesn’t grow, a body which weakens as he ages.
Ethan had too much sugar at his party; we made sure of that! Everything we bought, we bought for Ethan. There was nothing he could potentially choke on; so we gave him free rein of the table full of treats. And boy, did he indulge! By 5pm he was an over excited jumping Jack flash, screaming from the top of his lungs running from one end of the room to the other, knocking everything and anyone in his path. Baby D wasn’t far behind him, when D decided to remove the potentially lethal sugars from the table!
“Wow he sure is excited!” our family laughed. D picked him up in his arms, to a chorus of “Ahh bless’s sure”and carried him out into our car. Ethan finds the car calming. When he gets over excited and over stimulated,a nice quiet place can work wonders.
Ethan re entered his party a little calmer but still high on sugar!
Ethan enjoyed his day, which is the most important thing for us. Ethan was able to be himself 100%… in his house on his birthday.
I don’t know how we get through these days, these moments…I don’t have any answers. We do have a good cry for ourselves when no one is looking. We have a ‘pity us’ party of our own…then, then we lock it away again and face the next day, the next moment and so on and so on…
It is always bittersweet when Ethan ages; time is a bitch. Then, then we remember what we were told when Ethan was diagnosed—“By the age of 12 he will most likely be immobile, unlikely to eat, unlikely to talk”—we laugh at that sentence now, as we watch Ethan run, scream, stuff his face and tell us all to ‘fug off’ whenever he feels the need to!
And just like that it’s gone, the sadness of his 13th birthday is gone…we laugh and raise a glass to our very own super boy…
Happy 13th birthday Ethan…and up yours Hunter Syndrome”

And that is how we celebrate our son, who has a life limiting condition, getting older.



Meredith Pinchak
May 23, 2015 at 11:54 pm

I love your stories! I wish Ray could tell people to “fug off” . I can just hear that voice.

Mom of Ray MPS 2

    July 9, 2015 at 1:02 pm

    thank you so much. when Ethan tells people to fug off I’ll smile and think of how happy you would be to hear Ray say it. I do think if you feel the need to say it…say it on behalf of Ray!
    much blove xx

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