As parents we never really know what questions lurk in our children’s minds; eventually though, they do tend to tell us. I had a conversation recently with my eleven year old son who blindsided me with his questions and left me realising there was one part of Ethan’s syndrome I overlooked – his syndrome through his brothers eyes.
This conversation was hard for me; I can’t imagine how hard it was for my little J in the middle.
You sat across from me, your elbows on the table.
You pushed your dinner away from you.
I glanced at you and continued to feed your older brother.
I rolled my heavy eyes; I knew you wanted to talk to me but all I could focus on was how many spoons of potatoes your brother had eaten thus far while trying to remember who I still had to ring back before 5pm; while praying for more than 30 minutes sleep over the coming night.
I took a deep breath and reminded myself that you need me too.
“You ok buddy?” I glanced over at your downturned eyes. “One more spoon baby” I coaxed another spoon into Ethan’s mouth.
“Is he going to die, is this the end?” Bluntly you asked.
I dropped the spoon. My mind raced.
How do I answer this? What do I say? What’s the right answer? Jesus don’t cry..I felt my heartbeat quicken.
I cleared my throat.
“What made you ask that J?” I looked at your sad face, there is no other word to describe your little face; it was just sad.
You shrugged your shoulders.
I gave you a minute.
“Well, well, you’re spoon feeding him…he doesn’t stay still and …and he’s not…he’s not the same…he won’t even watch The Simpsons “
“Oh J darling. I know he is different. I know” I stretched my hand over yours.
“So, is this what happens?” Your lower lip wobbled. I’m pretty sure mine did too.
“I don’t know. No one knows. But, but that can be a good thing too. No doctor can tell us what will or will not happen and so far he is eating again, sleeping a little more and he is talking. He will sit again and watch TV, I just know it” I rubbed your hand.
“So, so if he keeps eating he might get better?” Your eyes met mine, flickers of hope flashed across your whole face.
My heart broke.
Don’t lie but don’t be too honest either …remember he is 11
I took a deep breath.
“He may improve , yes. But …”
I held your hand …tight…
“But…but he isn’t going to get better. What we’ve to try to do now is keep him happy and keep talking and playing with him. Hunter syndrome doesn’t get better like a flu…and it can’t be fixed, you remember when …”
“I know.” You cut me off. “I know mam. But I mean will he ..will he be like he was a few weeks ago again or will he be…”
I could see you were searching for the right words. ”Will he be like more like he is now or will he be back to the old Ethie?”
The truth was I didn’t know. He’s different everyday but I needed to give this kid something positive to hold onto.
“Well, I don’t really know, but I promise I won’t let him get as bad as he did a few weeks ago. I now know who I’ve to ring buddy and I now know too what to expect ; so I will do better next time” I heard the wobble in my own voice.
“Aww mammy, it wasn’t your fault. I just want him to be ok, that’s all” you took your fork in your hand.
I began to mash Ethan’s potatoes some more. I felt my eyes dampen. I didn’t know if I had helped my eleven year old or if I gave him more to worry about.
There is no book, no way to know what to say especially when you don’t expect such questions from a child – A child! That’s all he is. He shouldn’t have to know these things or even to think about things like this.
My heart began to race again. The guilt sat on my shoulders as I stared off into our overgrown back garden.
“Thanks for the dinner, it was lovely” your voice sounded cheerful as you leaned over me and kissed my cheek. “And thanks mam for the chat, I was just worried, but I think you’re right, we just have to talk , play and help him a bit more, and if the doctors don’t even know…”
I nodded. “Yes buddy, that is it ! And we can only take it a day at a time” I called after you.
You left the room.
I sat feeding Ethan , quickly I grabbed my phone and made another reminder -get a good counsellor for J- I felt better and hoped J would soon too.
It is one of the most difficult parts of Ethan’s regression and one I didn’t really give much thought to; I guess I must have thought I could shield J from it …
To all my amazing MPS families who have walked this path before me and those who walk it parallel with me ; thank you all for your help, advice and support over these past few weeks.