Ethan turned 15

Through the storms, we must learn to dance, we must learn to find that sunshine …
This wasn’t the first time we have had to learn to dance in the eye of a storm.

We’ve mastered many dances ; each dance more complex than the one previous.
The dance isn’t the hardest part .
The hardest part is finding that sunshine.

That’s hard.

Mostly the sunshine is found in the obvious places ; our kids , our Ethan and in knowing that every day occurrences can provide the simplest forms of this golden sunshine.

Yes , we do find the sunshine …but sometimes it takes so much effort.

There are many days when it hides; it alludes our ever searching eyes …our hearts fall when we cannot find a beam of that sunshine…but the finding of that sunshine is akin to the dance and so we search on, for we cannot give up. Giving up searching for sunshine or deciding not to learn the newer dance isn’t an option, it’s never an option.

Then there are times when the skies are blue …no clouds…only sunshine .. beautiful strong clear bright sunshine …

This sunshine radiates from other people.

People we don’t know at all.
People who we have met once .
People we’ve known for months .
People we’ve known for years .
People we’ve known all our lives .


Sunday we were once again reminded that this kind of sunshine exists.

Sunday we held a celebration in honour of Ethan’s upcoming 15th birthday.

As the rain hit the windows, I couldn’t help but be thankful for the beams of sunshine which radiated all around us.

Through my writing, a website I regularly write for insisted on doing something special for Ethan. They felt Ethan was just as much a part of their site as I was. They prepaid the food I had ordered, taking that cost from us.

Thank you Family Friendly HQ, for such a generous gift.

Through Ethan’s page a very talented baker contacted me and insisted she bake another cake for our family; this was not this lady’s first cake for one of our boys.

She insisted I tell her what cake Ethan would ‘blove’.

The answer was simple; Homer Simpson.

This was her first Homer Cake and oh my …she hit it right out of the park! Everyone wanted to know who made the cake , I was beginning to think I should have asked Sandra for some of her business cards .

Thank you Sandra from Caketoons, you’ve a talent like no other and your cakes are devilishly delicious.

Another guest brought her five children with her . This took planning, a lot of planning for her as it is close to impossible for her whole family to attend a gathering like Ethan’s party.

But she took two different cars, separated her kiddies out and brought a helper with her and her husband so the three of them could manage the kiddies she has.

I don’t know how she did it.

I don’t know how she had even the energy to do it, but boy, am I grateful that she thought enough of our little family to make that trip– thank you M.

I was sneaking out of the venue for a breather when I ran into Emma.

Emma was the first mother I ever met who had a son with Hunter Syndrome.

Holding her hand was Matthew.

Matthew is 12 now and he is struggling , there isn’t a nicer way to word it.

I cried when I saw her. I couldn’t figure out how she got here from Dublin. Currently Emma is trying to raise funds to get a suitable car which will transport both her sons; it means she won’t have to leave Matthews wheelchair behind for any reason. I hope she gets her car soon.

“I left the bleedin’ chair at home sure. I figured you’d have seats here” she laughed.
“I couldn’t not come” she hugged me tightly.

We didn’t say it, but we both knew why she took the trip without Matthews chair. We both understood the importance of 15, in this, our hunter syndrome journey.

It was a two hour party.

It latest exactly that, two hours.

Everyone from Ethan’s nurse to his teacher showed up to celebrate him.

Our usual friends were there; they have always been there.

And of course our family, our big funny family who spent a lot of time trying to get ‘Spongebob’ back down from the ceiling of the indoor astro pitch…in the end Grandad J was the one who came up with a ‘MacGyver’ like stunt to get that balloon back into Ethan’s hands!

Yes, as the rain pounded against the window , I looked around at all these wonderful people and knew that out of something so shitty such as hunter Syndrome comes the most beautiful sunshine in other people ; we get to see the kindness and love in other people so clearly, we get to feel it.

A lot of people feel this when they are standing at a graveside, we are lucky, we feel this regularly from those who care to visit, check in and call by and show up for our parties in the most random of places!

So thank you.

Thank you for bringing sunshine with you by just being yourselves.
This was originally published on FamilyFriendlyHQ

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