Raising a child with microcephaly: Outsiders ‘cannot know our experience’

Christine Grounds and Jonathan Mir shared their experience raising a son with microcephaly in a STAT video posted last week. Their candor — including an acknowledgement that she would have terminated the pregnancy had she known about Nicholas’s birth defect — has drawn strong reaction from viewers.

Grounds said it’s been hard to hear condemnation from strangers who only know her family through a video and have no way of understanding the totality of their life with Nicholas, which encompasses love and pain, pride and regret, cherished bedtime snuggles, and horrible moments when he bites and hits, unable to control his temper.

“Unless people live our life, they cannot know what our experience is,” she said.

STAT’s original interview with Grounds and Mir was nearly an hour and a half long. Here are some additional excerpts. The conversation has been edited for clarity.

As parents, how have you had to recalibrate expectations of Nicholas’s future?

Christine: Every milestone, it was a question: Is he going to sit up, is he going to walk, is he going to talk? Every milestone, we were holding our breath waiting. And as he’s met these milestones — albeit all late, all very delayed — if I’m honest, I still hope that he’ll catch up. And he’ll be normal, whatever that is, and that’s never going to happen. He’ll never be able to converse the way that we’re conversing. I don’t know that he’ll ever be able to have a job — and that’s still really, really hard to say out loud.

Are you bracing for puberty?

Jon: I haven’t even thought about that.

Christine: I’ve definitely thought about that. I have no idea, no idea what’s going to happen.

Jon: At least for me, when you have a child like this, there’s, in some ways, limited value for thinking about things three years ahead, or five years ahead, or eight years ahead. It’s not now. What’s now is what matters. And you tend to just make yourself a little bit crazy when you start to figure out what you’re going to do in three or four years.

Do you ever forget that he has special needs?

Christine: Probably around bedtime, going through that routine of reading books and listening to him ask questions or comment on the books, and we’re snuggling and talking — those are moments where I do forget that he’s different and has special needs.

There’s something in Nicholas’s eyes. This is going to sound a little outlandish, but there’s a way that he looks at you when you’re speaking to him and there’s a level of engagement. He may not be able to verbalize what he’s thinking, or feeling, but you can tell that he’s with you, and he gets it. I just feel it viscerally. And in those moments, it’s both heartening and incredibly sad at the same time.

Jon: You always have this sense that there’s a lot going on that will be almost impossible for him to express. You can just see it in his eyes.

Alexander, your younger son, does not have microcephaly. How are you raising two boys with very different needs?

Jon: You can’t do things the way other families would do things together. At some point, it just requires an acknowledgement that there are going to be situations where you’re not setting Nicholas up to be happy or successful.

For example, bringing Nicholas to a Passover Seder — he might not last longer than an hour or 45 minutes because he gets tired and grumpy. It’s not a failure to send him home after that and stay longer with Alexander. That’s the kind of thing that would feel really different if you had two typical kids, but for us it’s actually the right way to handle the situation, even if it’s a reminder of how different Nicholas is.

What have you taught Alexander about his brother’s condition?

Jon: We explained, “Look, Alexander, sometimes Nicholas acts really differently, or he gets upset about things, and that’s because his brain works differently than yours.” As Alexander gets older, we’ll provide more and more nuance about Nicholas, but we want to be very clear with him about what’s going on.

Is there pressure on Alexander?

Christine: Something that we’ve been very mindful of, and will have to constantly evaluate for the rest of our lives, is allowing Alexander to be Alexander, and not imposing pressure on him to be perfect or to never act out.

Jon: It actually is really comforting to me when I see him act out and be a pain in the butt because that tells me that he hasn’t internalized some weird pressure to be the perfect kid.

We want them to have a brotherly relationship that works for them. They love each other, but that’s not mutually exclusive of occasionally trying to kill each other. I’d be worried if Alexander was treating Nicholas with kid gloves or felt like he couldn’t get mad at Nicholas and have fights like brothers do.

How have you protected your marriage over the years?

Jon: I think you’re always conscious that you share something together that most people don’t really understand. … Yeah, it’s very difficult, but there’s a certain amount of pride that you can actually do it.

Christine: And throughout the nine years that Nicholas has been around, we have periodically gone back to couples therapists.

For example, around his birthday, in August, is a really, really difficult time for both of us, and is often filled with a lot of flashbacks to his birth and depression. It dawned on me, albeit nine years later, that prophylactically we should plan in anticipation of his birthday, one or two months before, to go talk to a couples therapist and have someone help us process … the grief because it’s too much without someone … to help contain it, to hold it for you.

Jon:  You can’t just wing it on your own.