He turns 18 on the 18th of May.
It was April 2008 when they told us our little boy would be lucky to see his 12th birthday.
Now, approaching his 18th birthday, I can’t help but think of the things the doctors were afraid to tell us to hope for.
Doctors, you see, can really only deal with facts for fear that if they give you too much hope you could, I suppose, blame them in some way or other for hoping things would be different.
Our diagnosing doctor gave us hope but with a big side of reality. He reminded us to spoil our son while we could and to hope that one day a cure could come his way. He reminded us (regularly) that our son was doing well considering all the other complications other boys had at this stage of the disease.
So, we have lived these past 12 years since diagnosis, always looking for the ray of sunshine in our son’s life and ours.
We read less and less about ‘cures’ and treatments as our son’s condition has now progressed to the stage where the basic treatment no longer works – but that can be kind of freeing – it means less needles, less hospital visits, less appointments, less assessments, less studies…less everything really. It also means our son no longer screams when the hospital building comes into view. It also means we no longer have to insist a doctor take off their lab coat due to our son’s reaction.
Our world changes in accordance with our son’s condition. What do I mean?
Well, our son was a typical child up until he wasn’t. I can remember the exact moment in time when I knew something was very different about our son, he was just 18 months old. He woke up one morning and seemed to forget how to play with his favourite toy, one he had played with the night before without issue.
I knew then that our world was going to change, I just didn’t think it would be ever changing.
I’ve been the mammy to the wild child, one that knows no safety and likes to touch absolutely everything and everyone in sight.
I’ve been the mammy to the ‘bold’ child, the one with the ‘made-up’ diagnoses of ADHD.
I’ve been the mammy to the child who is Autistic.
I’ve been the mammy to the child who has Sensory Processing Disorder.
I’ve been the mammy to the child who is ‘too big to be a buggy’.
I’ve been the mammy to the child struggling in mainstream school trying hard to fit into the round peg, when he is more of a rectangle, square, triangle peg!
I’ve been the mammy who’s had dirty looks, tuts and been given advice on how I should parent better.
I’ve been the mammy of the child no one wants to play with.
I’ve been the mammy to a child who wore pull-ups for far longer than expected.
I’ve been the mammy of the child who uses bad language and then runs off.
I’ve been the mammy to the child who is kicking and screaming in the isle of Tesco because he can’t understand that he’s to wait in a line.
I’ve been the mammy denied help and support because my child didn’t fit into certain boxes.
I’ve been the mammy who’s child ‘looks’ fine.
I’ve been the mammy who has had to apologise when my child hits your child.
I’ve been the mammy who gets no sleep.
I am the mammy who learns to adapt as a condition takes hold of the same child who once told a priest to ‘hurry up with mass’ who now, can no longer speak.
My world is forever changing.
I am now the mammy to a nonverbal child.
I am now the mammy to a child who uses a wheelchair.
I am now the mammy to a child who can no longer be left alone for any amount of time.
I am now the mammy who gets some sleep but does weeks without it.
I am now the mammy to a child who needs two people to help dress, wash and change him.
I am now the mammy to a child who uses a peg to eat when he’s unwell.
I am now the mammy to a child with complex care needs and physically disabilities.
Yes, my world and my views on situations have changed through the progression of my sons’ condition.
But, what has never changed is that little smile, the twinkle, the little leg thrown out to trip his brothers up; that mischief, that beautiful laugh of his and the way he hugs me when he’s in the mood to.
My son is very much still here.
My son has adapted so much in his 18 years that I don’t think parents like me could ever do without them leading us.
So on this 18th birthday of his, I wanted to share how strong my son is and how strong he makes me, his daddy, his brothers and his extended family.
We are all so proud of him and with this pandemic going on, he has prepared us well for adapting to another new ‘normal’.
We won’t be having a big birthday bash (like we had hoped and planned for) but we are hoping to have a few balloons and maybe even a cake – We hope parents on the start of their journeys know that while doctors must tell you the harsh reality of your child’s condition, they can’t stop you from hoping and finding the ray of sunshine because it is there, it is always there. Try and stay in the here and now, as best you can.
*This May 15th is International MPS Awareness Day. What is MPS? Please click on the link to find out more.
Ethan has MPS type 2 – Hunter Syndrome.