Anyone who knows someone who has lost a child at any age knows it’s a pretty uncomfortable to approach. What do you say? How do you support them? Do I talk about them or don’t I? Everybody’s different in what they’re ok with, but one thing that seems to stay the same is being in that odd space as time goes on where everyone else’s kids keep getting older, but ours always stay the same age. Jonah will never have a first day of school or first play date with his cousins. We will never see him try to crawl or make words. For our whole lives, he will always be remembered as one day old. Things like this make it hard to have a conversation with someone about him because they don’t want to stir the pot, so to speak. I get it. Here’s the thing though – I want to talk about him. I want him to be acknowledged and cared about. I want to see his memory out in the world, knowing that his life didn’t only last those 37 weeks.
I was asked several weeks by someone I’ve only met online through our Trisomy journey a question that I wasn’t expecting. I talk about Jonah a lot in my writing because it’s the place I share with him now, but I never really get to talk about him in real terms – only hypotheticals and things I would have taught him. It took me a few minutes to collect myself after reading it, having no idea it was coming. I cried. I smiled first, but it shook me at my core.
“Will you tell me about your son?”
It was literally the first time – and still the only – that I’ve been asked directly him. The intent was more about what we had been through so this person could better prepare for their little one, but it was such a bold question in a time of my life where people tread gently that I didn’t know what to say for a minute. It’s still something that we try to work our way through because the answer to “do you have kids” isn’t easy anymore, but if I get the chance to initiate talking about him I tend to take it. I can’t speak for Cassy here because we handle things differently, but if you’re out there and want to ask something but are afraid of it hurting – ask it. I won’t answer if I can’t and I might take a minute before responding, but it means more to me that you’re thinking about him than that you don’t want to upset me. I’ll spend my entire life wishing he was with me in person so it only helps that he’s here in conversation. I answered in the context that this person was asking, but there’s more that I want to be able to talk about.
For one, he was a beautiful little boy. His hair was that newborn soft, light brown after it dried, and thin up top but fairly thick around the sides. His ears were low on his head and one of his eyes were offset both due to his extra thirteenth chromosome, but his face was so gentle. His cleft lip kind of smooshed his little nose a bit. Little boy cheeks like his papa and you could tell he’d have had the sweetest smile. He was heavier than they told us to expect – Trisomy babies tend to stay around 4lbs – at almost six and a half pounds and you could see it in his chubby little arms and legs. His little hands were absolutely perfect, tiny little fingers and all. One of his feet didn’t form correctly, so the heel was set back a bit and the ankle was shaped differently than I’ve seen before – another feature entirely unique to my son. I got to put on the only diaper he’ll ever wear – something I’m still thankful to have been able to do.
Maybe you feel like you know everything you need to from what I’ve said over these last six months or you’ve reached the point where you don’t want to go deeper into my world. Maybe you’re on the other side, wanting to ask but don’t know how or when. Know that I’m just fine with whatever you’re comfortable with, and I appreciate the support you have shown and continue to. But for the rest of my life there will be one question that will give me more pride than almost any other.
Tell me about Jonah. I might need a second, and my voice will definitely crack. But you know what?
I’d love to