Do You Believe?

What is a miracle?

If you grew up in a Catholic household like I did, you may attribute the word to God himself (and quietly doubt that God told your aunt to take her washing in just before the rain came down on the driest day of the year; we’d call that Irish weather and a bit of luck).

Or you may think of coincidence, luck, or even serendipity.

Do you believe in miracles?

I am not talking about the I-was-unable-to-walk-but-suddenly-I-am-now-able-to-run-wild-and-free kind of miracle – I am talking about the smaller, quieter kind of miracles that some people don’t even recognize.

A few weeks ago, I was told my eldest son was having a very severe decline. My son, Ethan, has a rare genetic condition, which is progressive and promises to limit his life to his teenage years. Ethan is fourteen. Ethan has Hunter Syndrome.

The doctors were right: Ethan was having a rapid decline in his abilities and there was and is nothing we can do to stop it. He has ongoing treatment once a week, which we hope can still continue to slow down the progression of his syndrome but the reality is this decline came out of nowhere so we have no idea if he is stabilizing now or not; sadly time is the only thing that will tell us that, and as you can imagine, time isn’t really our favorite thing to waste with worry, anxiety, or stress over Ethan’s syndrome and its plan.

Don’t get me wrong, we have spent all of Ethan’s post-diagnosis years worrying, advocating, educating, stressing about Hunter Syndrome mixed with a big dose of anxiety, fear and love but we would never let our any of our three boys see this side of us, their parents . . .their safe place . . .their childhood memories.

We brought Ethan home after a week of specialists and scans and tests and medication changes and we knew our life was going to change again.

When you’ve a child with a progressive, life-limiting condition, you get used to finding your new normal as your child’s syndrome progresses. We adapt. We look for something good to focus on . . . something, absolutely anything that the syndrome hasn’t taken from our son yet. We find it. We make sure we find it.

Ethan is home from the hospital now and while we still don’t know if his latest decline has slowed down again, we have found him to be improving daily.

He has gone from eating nothing for three whole weeks to eating nonstop. Yes, we may need to get some calorie boosters; yes, he may need to be spoon-fed very slowly; yes, he may need his food to be blended and mashed and he will need to be peg fed eventually but heck; our boy is asking for food again and demanding we give it. (Due to his syndrome, Ethan’s ability to swallow foods safely is declining; so in the near future it may be safest for him to be peg feed- this means he can still enjoy some foods through his mouth, but all the calories and nutrients he needs will be given through the peg.)

Ethan has found his voice again. We were trying to prepare our family and friends for the difference in Ethan’s abilities when he began talking again (this slight improvement has made that conversation with our nearest and dearest that bit easier to manage).

He is even using words he hasn’t used in years – this morning he called me mammy, he has not called me that in over a year. He is back using random words and three word sentences; this isn’t as constant as it was pre-hospital visit but he is still using his voice. He is even singing (I leave out a word here and there and Ethan fills it in) his favorite song Santa Claus is coming to town.

I have taken all these little bits of Ethan as a hopeful sign that he is stabilizing but I also know what Hunter Syndrome plans to do to my son and our family, so I have been busy these last few weeks recording him, photographing him, and trying to get as many family moments as I can, all on camera.

We love, laugh, and in between the heartbreak, we live.

Sometimes, I don’t even know how we do it.

Miracles? I do believe they occur.

Why or how? I don’t know. Whatever it is that makes these things happen, it’s bigger than me or you so there’s no way I can explain them.

I would never have imagined that we as a family could go through so much heartbreak and still find the ‘buts’ … and that in itself is a little miracle to me.

Happy Christmas from our home to yours.


 

I’m Ger, mother to three wonderful boys and wife to D. We live in Galway, Ireland. I have always loved to write recently however I have began to write about our journey as a family of 5. In 2008 my eldest son Ethan was diagnosed with a rare genetic terminal condition called Hunter Syndrome, we have been learning to live, love and laugh since then. I have been writing publicly for almost a year now on my blog, It’s Me Ethan. Find me on Facebook and Twitter.

 


 

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