Darlene and Nick Abrams Use Fashion to Empower Special Needs Families Like Theirs

We Love This Fresh Perspective on Trach and Tubie Life

what it is like raising a child with a gastronomy feeding tube

By PJ Feinstein

Born premature at 24 weeks, Owen spent five months in the NICU, needing surgery and treatment for his underdeveloped lungs. His parents, Darlene and Nick Abrams, were thrilled to finally bring him home to Encinitas, California. But a couple months later, Owen was back in intensive care with a cold he just couldn’t kick. This time, he stayed for 784 days. 

It was during Owen’s second stint at the hospital that he had a gastronomy feeding tube (g-tube) placed in his stomach to provide nutritional support. Six months later, shortly after turning one year old, Owen received a tracheostomy, a surgically-made hole in his windpipe, and a trach tube so that a ventilator could help him breathe. 

Darlene first heard the term “special needs” in connection with her son after his tracheostomy. “I was a bit in disbelief,” she remembers. “Even though Owen had already spent over a year in the hospital at that point and was developmentally way behind kids his age due to the hospitalization, I did not see him as a special needs kids.” 

Darlene and Nick began looking for ways to empower themselves and Owen as they adjusted to their new life. They launched an apparel company called StomaStoma, a nod to Owen’s two openings, featuring t-shirts and baby onesies with clever illustrations and empowering quotes designed by Nick related to trachs and g-tubes. For example, there’s a dinosaur with breathing tube and oxygen tank (a “Tracheosaurus”) and a drawing of favorite Thanksgiving Day foods getting tossed into an open blender.

StomaStoma uses art as a way to normalize “this abnormal life,” says Darlene. “Our goal for the company is mainly to create a place of community and belonging for [parents] with kids who have g-tubes and trachs,” she says. Right now, StomaStoma’s target audience is niche, but Darlene and Nick hope to start expanding into the greater special needs community. 

A self-described “wearer of many hats,” Darlene, 38, talked to us about the sacrifices -- and the joy -- that come with being a special needs parent. 

What's the most difficult thing about raising a child with special needs? 

Oh, that’s a hard question. The first thing that bubbles to the surface is what I sacrifice. I hate that word, because truly on most days it doesn’t feel like a sacrifice. But it's those rare days when I feel like I've been robbed, like I’m missing out, like I have to say no to so many opportunities I would otherwise have said yes, I feel that sacrifice. 

It’s also a sacrifice to stay mentally in the game. Pushing to advocate constantly for my son, staying on top of all the therapies outside of his therapy sessions, doctors appointments, and medical supplies. It’s exhausting and necessary, and so very worth it, but at times hard. 

And this life is a sacrifice for our marriage. We don’t get a weekly or even monthly date night. There are no weekend getaways for us. Our dates consist of ordering in and transforming our living room into a date worthy spot . . . be it to watch a movie, play cards, puzzle, or just talk. It’s so fun getting so much time together at night, but the thrill of trying a new restaurant, or adventuring on a camping trip are not in our wheelhouse these days like they once were. And we are ok with that, 99% of the time. We know this is a season, and it too will pass. It won't always be this difficult. So we try our hardest to find joy and thankfulness in the everyday. 

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What's one thing you wish people knew about Owen? 

I wish people could just experience Owen. He’s got so much personality, and even though he is nonverbal, the expressions he exudes make life so joyous, funny, and easy. He brings so much life to those who have had the opportunity to spend time with him. And dang, he makes me laugh so much!

What are your favorite apps? 

Reminders (for ALL the things!). My brain is pretty much mush, all the time. Reminders keep me straight.

iCal. My husband and I share our calendar so we know what’s going on in the day to day with each other, work, and Owen.

Marco Polo. Since for a good portion of Owen’s life I was either in the hospital or isolated from many close friends and family, Marco Polo has allowed me to still feel super connected. Friends and family can see our life, and I can see theirs. Praise be those that made this video app!

Where is your family's happy place?

Anywhere outside . . . watching the cars go by, the sun setting, the waves crashing.

Our living room floor . . . just being, wrestling around, laughing, playing.

What self-care rituals help keep you sane? 

Massage, acupuncture, and a morning away from the house, whether it is surfing, reading, or just walking the beach. Being outside does something that grounds and rejuvenates me.

Who is your favorite moms to follow on Instagram? 

Iz Harris (@iz.harris). She’s real with her life and work, funny, and freaking insanely creative.

What TV show or book are you currently obsessed with?

“The Good Place” is absolutely hilarious and easy to just chill out.

“Present Over Perfect” by Shauna Niequist has changed me deeply and wholly. I would quote the whole book if I could. Shauna is a brilliant writer.

What 5 words best describe you?

Joyful, a gatherer, stubborn, compassionate . . . man, this is hard!

What advice would you give a new special needs mom?

Take time for yourself, for reals . . . do it.

Let yourself feel ALL the feelings. Don’t repress. Move through them with the focus to get to the other side (whatever that means for you). But let yourself feel. You’ll thank yourself in the long run.

See a counselor. Even if you feel fine. They are angels to help guide us through the past trauma and current. 

Let people help. I KNOW it’s hard. But this is a win win for everyone. People want to love you. Let them. They will feel more connected to you for it. And when they help you...you get to be more focused on wherever it is your attention needs to be. Eventually, one day, you’ll be able to return the love when they need it...but for now, be ok receiving.