Man to Man

Words of Wisdom From a Caregiver Dad

Steve Carlin lives in North Carolina with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome. Despite living with Dravet, she’s happy and according to Steve, has a “crazy sense of humor”—a trait Dawn says she gets from her Dad.

In some ways, I’m what you would consider a traditional dad. I’m more of the authority figure in our household. I want to protect my family. I want to provide for them. But being a Dravet dad has brought a powerlessness that I’d never thought was possible. As I’ve become a stay-at-home dad and my daughter’s primary caregiver by day, it’s changed my perception of what a father is and can be—and I’m here to tell the other dads out there that you can make it through.

I have two girls, Eva and Zora. Eva is 15 years old and in 9th grade. She just got her driving permit, which has interestingly coincided with the appearance of several of my gray hairs. She’s been a gymnast since she was 5 years old. Eva’s a straight A student. She’s doing well—with the exception of what my wife, Dawn, and I like to call the “teenage eye roll twitch.” We are extremely proud of her. Our younger daughter, Zora, is 9 years old and she has Dravet syndrome. She is a bundle of light. She loves people. She loves music and playing my drum set. Zora’s just a lot of fun and always very outgoing.

Like most fathers out there, fatherhood changed me. You stop doing some of the crazy things you used to do. Your role becomes more important. It’s bigger than you—it’s not just about you anymore. And like any other parent, I’d always hoped that my kids would grow up to be healthy, go on to college, and do whatever it is that brings them happiness. 

When Zora was diagnosed with Dravet, I felt like my hopes and life were spiraling out of control. I was a mess, and there was nothing I could do to change it. I remember a time when we were in the hospital, and Zora had a seizure that lasted 5-6 hours. The doctors had given her pretty much every drug they could. They couldn’t give her anything else. We were thinking if she does make it through, what will be left of her? I felt completely hopeless. There was nothing I could do but pray. As a father, I’m supposed to take care of the house, provide for my family, and above all protect my kids. It was a kick in the gut as a man.

“As a father, I’m supposed to take care of the house, provide for my family, and above all protect my kids. It was a kick in the gut as a man.” 

Since Zora had that seizure, I’ve learned a lot as a father and a caregiver around how to deal with the uncertainty and challenges Dravet can bring.

The Top Ten List

1. Don’t sweat the small stuff

Every parent, with or without a special needs child, worries about so many things. If you’ve been late on the bills before, you’ll be late again. Don’t worry. Being late on a bill compared to watching your child get intubated puts things in perspective. 

2. Take things one day at a time

Mayhem will show up at your door unexpectedly, and you can’t always get rid of it right away. It’s really about enjoying the here and now.

3. Don’t give up

Your child may learn her ABCs and then a seizure will erase them from her memory. Learn to expect obstacles and start over. 

4. Have fun

Look for the things you can enjoy in all this mess and do something fun with your kids every day. 

5. Adapt

Like many kids with Dravet, Zora can be challenging behaviorally at times. We’ve taken her to restaurants and she’s thrown her silverware across the room. We’ve learned to take our kids to places where the expectation isn’t so high—somewhere where they can climb into the mac and cheese, and as the chaos unfolds, you know it’ll be OK. 

6. Bring your kid along

I’ve had to explain to other fathers without special needs kids why I can’t go play golf or do something with them. They say, “You don’t have money for one round of golf?” Or they wonder, “Why can’t your wife watch Zora?” It can be hard sometimes. But I try whenever possible to bring her with me so that I don’t feel like I’m missing out on other things that are important to me.

7. Support your spouse

Not all caregivers have a wife or husband they can rely on. The ones that do really need to work extra hard on your relationship in order to maintain it. When you’re always focused on your child with special needs, your spouse oftentimes gets overlooked. So put time aside and plan a date night, even if the date is a picnic in the backyard (with wine, of course). Communicate. Work through things. And when the going gets tough, you need to be tougher. 

8. Be persistent

Whether you’re making sure your child gets the best care possible or you’re trying to get financial support or coverage, if you don’t like the first answer you get, it’s OK to question, push for more, and expect more. 

9. Seek out support groups

There is typically a support group for every rare disease out there, and they’ve been a lot of help for my family.

10. Don’t underestimate your kid

Your kid can do more than most people assume. They’re smarter than some people will give them credit for. And stronger.

“I realized I just need to do my best. Every day I give my family 110% of what I can give them. What happens is going to happen. I just do my best to live in the moment and live for today.”

Despite everything that I’ve learned, that feeling of being out of control never truly goes away. Life is good right now, but the reality is in 30 minutes, that could all change. Nothing will ever be what you expect or plan. Every day you run out the door realizing you have one slipper and one sneaker on. That’s why I came to a point where I realized I just need to do my best. Every day I give my family 110% of what I can give them. What happens is going to happen. I just do my best to live in the moment and live for today. 

The views and opinions expressed in articles on this site are those of their respective authors and do not necessarily reflect the views of Greenwich Biosciences or any of its affiliates. The authors of these articles have experience in the topics they are writing about. Although the advice, tips, ideas, approaches, or resources mentioned in these articles worked for their respective authors, they may not be appropriate for you. Talk to your/your child’s doctor before making changes to any treatment plan.