224. Sloan’s Laugh

Kari’s daughter, Sloan, was born deaf, blind and has physical disabilities. While that kind of parenting carries a lot of challenges, today we hear about the ways Sloan brings sunshine into her mom’s world. 

Kari told more of her story on our sister show, Terrible, Thanks For Asking. You can listen to part 1 and part 2 of Kari’s story on the TTFA Patreon. 

Transcripts may not appear in their final version and are subject to change.

I’m Nora McInerny and It’s Going to Be Okay.

A few years ago on our sister show, Terrible Thanks for Asking, we did a two part episode with a woman named Kari. The episodes focus on how she met her husband, and how they started to build their family, including the birth of their daughter Sloane. Sloane was born blind, deaf and with other physical disabilities and health issues- so learning to care for her was a challenge. Then….Kari’s mom and husband died unexpectedly, leaving Kari to raise this baby without the support system she planned on.

There’s been a lot of loss for Kari, but there’s also been beautiful moments of joy and love…and today, she shares them with us. 

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Kari:  I will never forget the first it’s going to be okay moment after Sloane’s birth and when we were grieving not, not just the diagnosis at this point, but also just all the messages we were receiving about Sloane’s diagnosis in a pretty like ableist, harsh world. Um, her first early interventionist, Margaret, walked through the doors and saw that Erin and I were Disney adults. And about halfway through the appointment where Margaret was, like, assessing Sloane’s vision and looking, you know, just looking at, like, what we could do to help Sloane at her newborn phase. She looked at Aaron and I and she was like, you know this is going to be really fun, right? Like, you two can go to Disneyland.

You can take Sloane to Disneyland and she’ll know Mickey. We’ll figure out a way for her to know Mickey. the rest of that appointment, was Aaron and I sobbing, as she sat with us and we talked about how all we had been told was that it was all going to be dark and hard and scary. And she was the first person to use, genuinely use the word fun around us, and it felt like in that moment, maybe it would kind of be okay.

Um, and then, uh, what would have been nine months after, what is it, after my mom’s death? I guess? Nine months after my mom’s death? It was a little over a year after Sloane’s birth,  my husband Aaron died by suicide  and then nothing was going to be okay again. That, that, the few it’s going to be okay moments we had, nothing was okay again.

So we’re back to square one.  Um, but then I will never forget  when  I was alone in the two bedroom apartment. My sister Cassie and I were sharing and it was probably a few months after Aaron died, and everything had just felt, I mean,  the pits, the abyss, the words that can’t explain, like, how, the heaviness of grief, um, the depths of grief. 

I was alone in my room, and I was putting some overalls on Sloane.  And I pulled them over her head, and I had never heard her laugh over her trach, so when you have a trach, it blocks your vocal cords, and many times… People learn how to make noises around their trach. Um, but Sloane being deaf as well, you know, it’s kind of like a couple barriers there.

She can’t hear herself, so, you know, it’s not really like motivating to make noise. Um, but I pulled these overalls over her head and I was getting her dressed and just going through like, just survival mode. And I’ll never forget as I pulled the overalls over her head and kind of yanked them down on her shoulders, it created like this vibration that made her laugh hysterically and she giggled so hard that the laughter went up and around her trach and I just stood there in awe staring at her  and I just immediately started laughing with her And I don’t even know if I had laughed for like a year genuinely  And I pulled on her, her overalls again, and she laughed again. And again, such belly laughter that it went up and around the trach, and it was just like this vocalization of just pure joy. Um, and I kept doing it over and over, and by the end, I mean, I had just had like, tears of joy, belly laughter myself, and that was the first moment that I can remember after my mom had died, Aaron had died. And, you know, we were navigating our new life that I had a glimpse of it’s going to be okay.  Um, since then, like,  there’s so much, you know, I live with,  it’s like every day is hard. There’s always hard things, and you live with that all the time. But you, I think the, the thing that I found that resonates with me the most is creating space around the hard. 

Because then, like, we have had so many okay, good moments. And it has eventually, it’s taken time, and work, and space, but it’s been, there’ve been times it’s been okay, there’ve been days, now, where it’s been okay, it’s all been okay, and good, and happy sometimes. I feel a little sketch using the word happy because I don’t want people to think I’m all chill and everything’s good now, but it is, it, it was going to be okay.

I wish I could’ve told myself three years ago it was gonna be okay, because I wouldn’t, I didn’t believe a single soul other than myself three years down the road. I couldn’t believe anyone.  Um,  and since the cry, like, laughing day where I pulled, you know, Sloane’s overalls over her shoulders and she laughed, she laughs hysterically all the time over her trach. Um, she blows bubbles around, she plugs her trach and blows bubbles all the time, and it’s the most hilarious thing, and also, like, doesn’t go over well when you’re in the library. Um, we have done so many wonderful, cool things this year, and it has been… Uh, and we haven’t, it’s not in a way that like we have been exhausted or we’ve just run ourselves into the ground, they’ve actually, it’s been enjoyable and fun and when we’re tired we come home and we watch Vanderpump Rules  and guess what?

That’s okay too. I love that too. And we have the best time doing that. Um, and then this year we’ve been to Disney World. Sloane’s been on her first plane ride. Um, and of course the entire time I think of mom, I think of Aaron and I love them so much and miss them so much. But it’s also okay. It was going to be okay.

Um, this summer is like the least hard summer I’ve had in a long time.  Again, I miss mom and Aaron so much and all these happy times. And I also see that like right now, you know, what I can do is wake up and take Sloane in her full belly laughter, bubble blowing self. And we go to the splash pads and we go to the, uh, water parks and we go on runs and bike rides and, um, live a life that, You know, our dead fam is proud of and that Sloane and I are also proud of because, um, you know, like we’re still here, uh, we are still kickin  and we might as well find those it’s going to be okay moments and really relish in them when we can because,  you know, that’s what life is about too.

It’s, it’s,  life is about the meaning and the connection and sitting with each other in the hard stuff and it’s also okay to sit with each other in the good stuff. And to have a moment of levity and fun, and I tell you what, Sloan and I have that a lot now. 

Um, I know that Aaron and Mom would be so proud of all the hard stuff we’ve been through, but I also know they’d be so proud when we sit down to watch Vanderpump Rules. I know they’d be so proud when we go and sit in a golf cart floaty on a lake that has friends around the top and we sip our Diet Cokes. Me. Sloan doesn’t drink Diet Coke. Don’t worry. Um, and so I just show up every day with that in mind.  Continuing to do the work, continuing, you know, to,  like, try  it, make sure that mentally I’m okay, and if I’m not, I do what I need to, to take care of myself,  but  there are so many moments now,  with all of that said,  that like, I wish I could have shown myself so badly, three years ago, when I didn’t believe a single soul, and I knew I was gonna be dead,  I wish I could have shown myself, hey, guess what, it’s gonna be okay.

And three years ago,  if you would’ve told me that, I thought I would’ve just probably punched you.  So,  just know, if you’re listening to this and you don’t think it’s gonna be okay, coming from somebody who was in the exact same boat, it’s gonna be okay, it is gonna be okay, whether it’s receiving a new diagnosis in your life, whether it’s losing a family member. Just keep going. It’s worth it. Back in those early diagnosis days,  when it felt like everything was so hard  and I wasn’t going to make it and we weren’t going to make it and everything was so dark and the diagnosis was so hard and it was like, what is life? What is quality of life? What are all these things?  You know who has helped me see that it’s going to be okay now? It’s Sloan.  And she’s the one that has gotten me out of bed.  Oh, am I gonna cry? I can’t tell. Am I gonna cry?  I’m not supposed to cry on It’s Gonna Be Okay. Actually, yeah, sometimes, you know what, that’s the whole point. You are supposed to cry. You’re supposed to cry in the great moments and the hard moments because that’s just, we just welcome the tears no matter what. And so I just want to say thank you Sloan for helping me know way back three years ago and everything that’s happened since that it was going to be okay and helping me see now the years down the road that we have ahead of us that it’s going to be okay.