I’ve been meaning to have Brett share a dad’s take on raising a child with special needs for a while now and finally sat down with him to write down his responses to some questions. As much as I probably could have told you his answers to all of these questions, what I didn’t expect was how important it would feel to sit down together and make space for this. We put the kids to bed, I lit candles and dimmed the lights because that’s what I do, and we sat across from each other on two couches and talked about this thing in our lives that we don’t think about a lot because it just melts into the rhythm of our family on its own. I loved hearing his answers–pretty short because he is a man of few words, after all. But tapping it out on the laptop and looking at it all put together, I realized how much our own unique ways of dealing with special needs complement each other and how this extraordinary experience glues our family together and grants us a unique perspective of the world that allows us to feel and see a little more beauty and love.
K: So I’ve shared a little about your reaction when Nella was born, and I’ve definitely shared extensively about mine, so let’s go back there to start. You’re standing there in the room with me, I’m holding our new baby, and the doctor comes in and tells us that she thinks she has Down syndrome. Tell me what you were thinking.
B: So, I didn’t know anything about Down syndrome. I mean nothing. And really there’s only one thing I cared about, and you know I asked this. “We’ll be able to take her home, right?” That’s all that mattered.
K: What was the first thing you remember learning about it?
B: It was from you. You told me there could be higher risks for certain things like heart issues. That scared me more than anything.
K: And you know most of those end up being okay and able to be fixed as well, right? But yes–I’m so grateful we didn’t have to experience that. What about cognitive differences? Did you think about that or know what that would look like? I remember telling you a little bit about what to expect, but it’s hard to explain.
B: My only concerns were health ones. I knew everything else we could adjust to. And when she was at the baby stage, none of that really mattered, you know what I mean? I just wanted to enjoy her. And her babyhood looked pretty much like the other kids’, right? Maybe slightly slower development, but that’s it. As for the future–I don’t know–I just feel really confident that she’s going to be okay.
K: Here’s a reader question-How did you prepare yourself to raise a child with special needs?
B: I’m just winging it (laughs). Honestly? Nothing. It’s one day at a time, and I think we’re doing a pretty good job.
K: Did you feel like you needed to independently educate yourself about Down syndrome or have you relied on me sharing with you?
B: Totally you.
K: Nice. That’s two words. Care to elaborate?
B: I would say that I rely on you because you’re the rock in that position. My philosophy is that anything I read doesn’t affect me as much as real life experience. Watching Nella grow and letting her show me who she is is more significant than anything I’ve ever read about Down syndrome. And so much of it is just a big variable anyway.
K: Can you remember a time up to this point where Down syndrome felt especially sad or hard? Or is there something in the future that you worry will be hard?
B: I don’t know that we’ve necessarily reached this level. I think the hardest thing for me will be if she realizes that she’s different–like will she look at Lainey and feel like she can’t have the same life that Lainey has? Sometimes I watch her and wonder if that’s something she feels, and it kills me. Will there be sadness in her heart?
K: I think that’s where we come in. We will empower her to be proud of who she is, Brett. We will infuse it into everything we do and say in this house, and our whole family will be part of it. We celebrate it in a way that leaves no room for anything else but loving who she is.
B: Nicely put, Babe. I like that. And in the meantime, if I ever think she’s feeling those feelings, I just scoop her up and give her love. I overcompensate with love.
K: Thus far, what’s been the hardest thing about Down syndrome for you?
B: I guess I’d say it’s the depth of conversation that I can have with her. I can’t dig into conversation with her like I can with the other ones. Sometimes I wish I could just talk to her about everything.
K: That creates an opportunity for creativity though, right? We get creative with all the ways we can communicate with her. We make up our own language through everything we do. Are my silver linings getting annoying?
B: (laughs) No. You’re right. And the flip side to the hard stuff is that she’s just absolute love. She aims to be positive. She brings happiness when anyone’s sad. She’s hardly dramatic. She’s just so easy to be with.
K: Here’s another one from a reader. Do you feel like you need men friends who have kids with special needs like women do?
B: I don’t think so. I just don’t feel the need. I don’t feel drawn to that. I have you who has so many friends and brings them into our lives, and I get to benefit. I have a pretty laid back personality though, so I can roll with whatever. This is what it is, and we make the best of it. But I do love hearing you talk about your friends and what they have to say about their kids. And the dads I’ve met through your friends are great too.
K: Someone else asked if you attend Nella’s IEP meetings?
B: I have before, but generally if I’m working and you don’t need me, I trust you.
K: Okay, here’s a good one. As a dad to 5 kids, do you treat Nella differently?
B: You’re so much better at not treating her differently. I know I do. It’s just she has me wrapped around her pinky. I’m so sensitive to her situation. I think a lot about what she might be feeling or thinking and I just don’t ever want her to feel sad or different. I think I’m softer with her–I can’t help it.
K: I think I keep you in check here. And I get there being a different softness because you can’t deny the fact that there are differences. I just think it’s so important that we expect a lot out of her and that we never create a softness to the level that it will limit her from reaching her potential. I mean, the world isn’t that soft. And I don’t ever want our other kids to think she gets away with things they don’t, you know? So I’m going to add to that question–how do you make sure our other kids never feel overshadowed by special needs?
B: I think we do an appropriate job. And we’re also teaching our other kids that there’s a different level of compassion and understanding we give to certain needs. They’ll understand this as they grow up, but we love our kids really good, and they all have unique things we celebrate. Lainey probably went through a stage where she thought Nella got special treatment, but we’ve talked all the way through this, and I know she gets it.
K: How would you say having a child with special needs affects our marriage?
B: I know this might not be the case for every couple, and we’ve been so lucky that we haven’t had added health stresses, but wouldn’t you say it’s been beneficial for us? Like it’s brought us a special happiness that enriches our overall family relationship?
K: I totally agree. Like we have a secret language no one else has. And I feel like that secret language gives us a different perspective. I mean, not that we don’t have stuff in our marriage, but I’d say it never has to do with Down syndrome. Would you say that we both tackle different jobs with Down syndrome?
B: I’d say that you’re everything with her. You do most of the work to make her life better, and my job is to be the stability. Make her feel loved. Hold everybody up.
K: Well, thank you. It’s nice to have that work recognized. Okay one last question: What’s the most important lesson about parenting you’ve gotten from having a child with Down syndrome?
B: It’s just a special treasure. That’s all I can say. She brings this family extreme joy. She makes my soul happy. Her joy is contagious. You can’t help but feel what she’s feeling when you’re with her. I wouldn’t trade this for anything. It’s extreme happiness…extreme.