I have had plenty of friends and strangers tell me that they don't know what to say when I tell them about Ethan.
It isn't easy for me to say it; my heart beats a little faster each and every time I'm asked. I take a second to think: Is there a better way to say it?
I take a deep breath. I see that you're waiting for my answer. My palms begin to sweat. I really don't know how to say it without stunning you; the person who has asked me about my other children.
And I know what it is like to hear something you're not expecting.
I remember talking to a mother outside a children's ward, we were having a nice chat about the weather, the inconvenience of parking in the hospital and then I asked, "How many children do you have at home?"
The mother's voice wobbled as she told me she had three, two at home and one had passed away.
I was not expecting her to say that.
What could I have said? I knew I couldn't make it any better. We all know the death of a child is a parent's worst nightmare. I felt such deep empathy for her. I said the same thing 99 percent of the population would say, "I am so, so sorry."
She nodded as silence fell heavy between us.
I stood watching porters, nurses and doctors rushing in and out of the ward. My mind was panicking, what do I say now? Have I upset her?
"I am sorry," I repeated as our eyes locked again. "What is your child's name?" I felt my head automatically tilt to one side.
We stood talking about her wonderful, funny, bright daughter, Sarah. She told me of Sarah's sense of humor, her love of animals and how great she was with her younger siblings.
I smiled as this heartbroken mother became full of life talking about her Sarah.
I tried to hide my shock, sympathy and pity from her. I couldn't understand how this mother was smiling and full of conversation about her daughter who had lost her life to cancer.
We spoke for about half an hour. She asked me about my children and back then, I was only at the hospital because my eldest son needed grommets. I felt bad, guilty even ... telling her my two boys were otherwise healthy. She smiled and told me her youngest was in getting his appendix out.
"Thank you," she rubbed my arm as she got ready to go back into her son.
"Thank you for telling me all about your Sarah." I felt a lump in my throat but pushed it down.
"Thank you so much for asking about Sarah and not the cancer." She walked back into the hospital and I never saw her again.
That day and that conversation has stayed with me for many years. The strength that mother had was incredible.
I didn't know it then, but I would soon have to find her strength.
I didn't know how that "head tilt," that "pity" and that "I'm sorry" would be things many strangers would do in my presence.
Shortly after that hospital visit, my eldest son, Ethan, was diagnosed with a terminal rare disease called Hunter syndrome -- a progressive syndrome which would in time leave him unable to walk, talk, eat and communicate. If he saw adulthood, he would need the same level of care as a baby would.
How do I say all that when I am asked about my children?
Like every parent, I want to talk about my greatest joy -- my boys. My three wonderful boys.
I don't want to upset, educate and lecture other parents who have simply asked an every day question.
I take my time when asked about my children. I still get a bit nervous that I am going to stun and shock.
I have three boys, Ethan, who is almost 14, J who is 11 and a dictating toddler D, who is 2 and a half (that half is very important to him).
We laugh when I say that, then comes the usual and fair observation "Wow, you've a houseful. I bet the older two are a great help to you, especially the 14-year-old, he must be a great sitter."
Like all parents, I am not going to lie or mislead about my children, but if this is said to me as a parent is leaving I normally just smile and nod, but if the parent is sitting beside me and watching both our toddlers play/argue, I feel compelled to correct that assumption.
I take a deep breath and respond "Not so much, no. My almost 14-year-old has disabilities and my 11-year-old has ADHD, so no, not babysitters at all." I tend to make eye contact with the person asking me the question at this point. I don't know what I am looking for in that moment: acceptance, understanding, an interest, questions...
"Oh right, what disability does your son have?"
"He has Hunter syndrome." I know they will have never heard of it, but I wait all the same for them to state that and ask, as I prepare myself for telling them what it is.
It isn't easy for me to say it; my heart beats a little faster each and every time I'm asked. I take a second to think if there is a better way to say it.
"Oh, can't say I've heard of it. ADHD I've heard of. What's Hunter syndrome, is it like Down syndrome or something like it?"
And so I explain that it is a terminal condition which has currently no cure. I explain that I've to watch my son regress through his life rather than progress. I explain that Down syndrome and Hunter syndrome have one thing and only one thing in common: they are both syndromes, meaning you can see the syndrome in comparison to the likes of ADHD, which you cannot see.
An awkward silence hangs in the air, one which I've become accustomed to.
"Jesus, I am so, so sorry." I am not surprised by this response at all, it's very common and very understandable.
Of course you're sorry, you're human, you're thankful it isn't your child, but you are genuinely sorry that it is another mother's child. I am sure that, that sorry is a mixture of empathy and pity.
I don't feel any anger for you saying that you are sorry.
I'm sorry, I'm sorry that my son is ill, I'm sorry that my son has to live with such a cruel syndrome and I'm sorry my little family will be broken beyond repair.
"Me too," is how I respond.
Here's the tip: you're sorry. You've already told me that, and I've responded. Please don't stay silent. Please.
Ask me about my son.
Ask me his name.
Ask me what he enjoys.
Ask me what he is like.
Always, always put the person before the disability or illness.
Ask about Ethan first. The syndrome second. I know you're curious about a syndrome you've never heard of, but always, always put the person before the disability or illness.
As for the 'I'm sorry' sentence; in my personal circumstances, it doesn't bother me, simply because I am sorry, too.
What does bother me is that head tilt; one I was so used to doing before Ethan diagnosis. It screams pity ... I don't want pity, I don't write about my life and Ethan's life for pity.
The confusing thing is empathy can often look like pity and I am all too aware of that ... when I get that head tilt along with the "I'm so sorry," I often find myself remembering my encounter with that mother outside the children's ward. My intentions were honest and full of empathy, but now I know what it is like to be the parent who wasn't expecting such a devastating answer to a very average question.
I write to hopefully raise awareness of Hunter syndrome and rare conditions, I write to record all the wonderful things Ethan has done, has taught us and is still doing.
Ethan is almost 14; he still laughs, walks for short distances, talks with some words, cuddles us, kisses us, understands basic language and he still eats. He still tells me "I lobe you."In a world where no one is promised a tomorrow, I think we are doing quite well.
Ethan is the happiest child you could meet.
So don't feel too "sorry" for us. We are very lucky to have a child like him and to be shown a secret world which has changed our perspectives on so many things. Yes, it is "sad" but Ethan doesn't need "sadness," he needs love, laughter and to live his life to the best of his abilities.
Yes, I'd be lying if I said it's an easy life, but I am trying my hardest to give Ethan and his brothers happy memories. I cry, I scream, I am heartbroken -- I didn't know such heartbreak existed -- but my boys don't need to witness that, so I lock that away and talk about it to those who I know will understand.
Don't most parents do the same thing with their worries? I am just like you, but different.
I want Ethan's life on record because he is a gem and who better to record it than me, his mammy?
This was originally published on Parent.co