I used to believe the only important form of communication was indeed words, how many of us have ever actually thought about communication without words?
Most people in their lives will never have to worry about finding ‘other’ ways to communicate.
I was ‘most’ people before Ethan was diagnosed with Hunter Syndrome.
Even though specialists, therapists and doctors all told us the plans Hunter Syndrome had for Ethan; I was never really prepared for seeing it happen. I just simply locked that away and lived for today, for my today’s son- the one who was chatting, singing, dancing and cheeky as all hell.
And for years, that has worked. Ethan has been ‘stable’ pretty much since he started his weekly infusions (ERT- a manmade version of the enzyme Ethan is missing is infused into his body over 2.5 hours, it is a way to slow down the progression of the syndrome, it is not a cure) Sure, he has ‘lost’ words, but he always replaced them this made it that bit easier to lock ‘reality’ away from time to time.
He is now almost 14 and I know that’s a hard age for any child but for Ethan it is that bit more difficult.
He cannot tell me he is pis*ed off, cranky, tired or sore. I find myself second guessing everything , suddenly I remember ‘he used to’ , my tears come fast and hard but I must be quick and silent as I weep for what ‘used’ to be.
I have to live with my today son.
My today son is able to speak in random words which mean little or nothing to him. He can repeat me when pushed to. He is quick to temper due to pain, frustration, sensory issues and hormones (a new thing..yippee!).
My today son cannot talk to me, he cannot communicate to me in words…he used to but I must be mammy for my today son, not my yesterday’s son. I learn as we go–what worked a few months ago in terms of communication (and so much more) will probably not work today.
My today son however does communicate.
I had forgotten how much we can communicate without saying a single word.
We had to try a new mattress for Ethan, I knew almost instantly it would not be right for Ethan but my ever hopeful husband D, insisted “let’s try it and sure if he doesn’t like it we will know!”
“Will we?” I felt a pain in my heart as over the Easter break, Ethan was struggling…struggling with lack of routine, hormones and a change in medication piled with the usual things he struggles daily with..walking, talking, expressing himself, feeding, drinking …
“Ger, Ethan will let us know if this mattress is not a go-er, I promise you” D hugged me as I sighed heavily, knowing we were facing yet another decline in Ethans abilities.
We placed the mattress on top of Ethans bed, said goodnight and closed the door. Silence.
We had reached the bottom of the stairs when we heard the first bang…the second was much louder…we both ran back up to Ethans room.
Slowly we opened the door, as Ethan has a habit of kicking the door but standing right behind it too, so when we open the door we must do it very very slowly. (The handle on Ethans bedroom door is too high for him to reach- this is for safety reasons)
He stood back, eyes wide open and his head shaking from side to side.
“What’s wrong buddy?” I bent down and pulled him close to me. He had taken his blankets, teddies and pillows all off the bed. Quickly he pointed at his bed, shook his head again, pulled away from me and sat down on his pillows throwing his teddies at his daddy and I.
D laughed “And you were worried we wouldn’t know!”
“Daddy getting rid of it now buddy” and with that D removed the mattress.
We quickly made his bed up again. He stood pointing at each teddy he wished to be placed into his bed before joining them. We each got a kiss and a hug before closing his bedroom door.
“The smile on your face let’s me know that you need me, there’s a truth in your eyes saying you’ll never leave, the touch of your hand says you’ll catch me wherever I fall, you say it best when you say nothing at all”
Keith Whitley- Ronan Keating later ‘covered’ this …I promise I am not a ‘Boyzone’ nor ‘Ro’ fan… despite these two examples of lyrics…
This was originally published on FamilyfriendlyHQ