An honest insight

I’ve been told, that I am strong, inspirational, amazing…all those lovely words people say to you when they learn about hunter syndrome. The truth is, I am none of those things. I am a mammy.
It’s very hard to explain this to other parents, especially when they say “I don’t think I could cope like you”, they could though. They really could. I’m not special, I was no different to them parents. I could have never put myself in my current shoes 6 years ago.
It is in the last 6 years only, that I can see that I am different to those parents. I don’t wonder why us, why my son- I did many times, I don’t anymore.
I find it hard listening to those parents who are worrying because their child broke their leg, arm…whatever. Don’t get me wrong, I understand the worry, but I can’t help but think, Jayous he’ll be grand, it’s only a broken leg,relax. I feel the same when I listen to how difficult potty training is going, how temper tantrums are ‘ruining’ their family outings. I may sound callous, I assure you, I am not. I just know what’s important in life and what’s just noise.
So your child is being naughty, there is only one way to deal with that, punishments, then know, know your child will outgrow a lot of these behaviours, they will grow and develop,they will understand consequences for their actions- eventually.
Appreciate that, please.
I know parenting is the hardest job- ever.
Now imagine one of your children are terminally ill, would you feel amazing, inspirational? Would you spend your time worrying over behaviours of that child or would you sit back and let him run free,(within reason,of course) for as long as he can ? Do you think you’d be worrying about what other parents think? Do you think you’d like to sit and listen to another parents worry over their six year old not being able to tie their shoe laces,while your ill child has no idea what laces on a shoes are ? Would a little bit of you not want to roar, feck off will ya!
Yes, we all worry, worry over everything regarding our children, take it from a mammy who worries over things you can’t even imagine….enjoy your healthy, imperfect children, be patient with them, they will learn, relax a little, stop running to the ‘how to’ books, ye don’t need them guys, ye really don’t….do you think there is a book out there for me to read,which will help me raise a dying child? I don’t think so, if there was, I wouldn’t touch it. I am mammy, that is enough. You guys are mammies and daddies, that is enough, you do know best.
We, parents are strong, sometimes we can be inspirational and often we are amazing…all of us, not just parents like me…I was just like you until I had no choice, my blue eyed boy,has taught me far more than any book, tv show or any educational system could have ever taught me.
You would be surprised how you would ‘cope’ with a child like Ethan, after you try to come to terms with it( which you never really do) you get up and you parent, you parent very differently but suddenly you can see, not always great things, you learn to ignore that part, but you get to see little miracles, daily, the best part is, you are aware, you know what’s worth worrying over and what just isn’t.
You are still ‘just’ a mammy or daddy doing your best, you don’t feel inspirational or amazing but, I guess, I do, sometimes, feel strong.
It’s a little uncomfortable, to be totally honest, when a person stands in almost awe of you,singing your praises, when you know, you know, they’d be exactly the same as you if they had an Ethan.
Not everyone is lucky enough to have an Ethan, I am!!! and I am so thankful for him, despite the heartbreak that his condition brings…I wouldn’t change my Ethan …God, would anyone change their kids? I am the same as you, only a little different.


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