"She doesn't have a hand," I whispered to my husband as our newborn made her first cries. I saw her for a moment, and then she was taken away to be measured and cleaned up.
My husband didn't help matters. Chaos ensued as he passed out and fell to the ground. Nurses rushed to attend to him. When he woke, dazed, they took him to the ER to make sure he was OK. "Sorry. I’m such a mess," he said, as he was wheeled away.
But none of that could distract me from what I'd seen before they'd taken my baby: She definitely didn't have a hand.
And you know what? The doctor didn't notice it. It was a routine pregnancy with nothing of note on the ultrasounds. Routine labor. Routine delivery. I said it again, this time to the whole room: "She doesn't have a hand."
April is Limb Loss and Limb Difference Awareness Month.
They went to the table and checked. Sure enough, she only had one hand. But they reassured me that everything else was OK. She was perfectly healthy, except for missing a hand. They returned her to me, and we cuddled.
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I was so happy to finally have my baby in my arms after a long pregnancy, but I still needed someone to hold and support me, since my husband was in the ER.
Thankfully, my parents lived just 10 minutes away and were waiting by the phone.
All I could say to my mom was: “I need you. She doesn’t have a hand.”
My mom's level-headed response was what I needed in that moment.
“OK," she said. "Everything will be OK. I’m coming.”
Could I be what she needed?
In the time I had alone with my new daughter, I felt all of the things: Excitement. Fear. Wonder. Struggle. But I also almost instantly worried for her. I know how mean kids can be about differences. I was worried about how difficult navigating the world would be for her. Did I have what it took to give this little human everything she needed to break through barriers, feel confident in herself, and thrive?
Weeks earlier I had seen a news clip about a girl born with one hand. She worked with a team to create a prosthetic tool that looked like a unicorn horn and shot out glitter. The news clip, about an adaptive technology exhibit, showed her standing on the steps of the Museum of Science and Industry in Chicago and blasting sparkles across the crowd below her.
Could I help my daughter feel comfortable enough in her body to show that kind of confidence to the world? And, wow. What an amazing world it is.
Making connections
There are 5.6 million Americans living with a limb loss or limb difference, ranging from someone with webbed fingers to those who lost limbs well into adulthood — and everything in between.
The community of people with disabilities and their families feel like they are built (or created) differently. I've connected with parents halfway across the world with whom I've shared as much with as my closest friends.
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Children photographed by Kari Treat at Camp No Limits in Lake Forest, Ill. in June 2023.
Everyone has their own story: Some families found out about the missing or different limb before birth, and had to cope and manage the stress of not knowing exactly what that meant until their little one's arrival. Others learned what a "Congenital Amputation" was when their baby was born (It’s me — Hi). Others have dealt with trauma from an accident or disease.
I always journey down the rabbit hole to find out everything I can about a subject I'm interested in. In this case, that has meant our family has connected with some amazing organizations, camps, apparel companies, prosthetic tools, and people. All are doing amazing things in the world of disability and have given us the knowledge and resources we need to help our daughter learn to navigate the world with one hand. You don’t think about even the simple things we take for granted, such as tying shoes and putting hair up in a ponytail, until you’re trying to teach your daughter with one hand how to do them.
'One hand and one nubby'
As a parent of a child with a disability, I just want to see kids have fun together. By increasingly exposing her to the world, I realized it would also push me to handle occasional awkward situations, and she would learn to navigate these experiences as well.
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Before she was old enough to communicate herself, there would be young kids who would stare, or simply say “hand?”
I’d get down to their level and ask, “Do you see something curious? This is Mackenzie. She has one hand and one nubby. She can do everything any other two-year-old can do, just a little differently.”
Then, their curiosity satisfied, they’d go back to playing, as kids tend to do.
I’ve made an effort to expose her to differences too. When we’ve seen people in wheelchairs we’ll talk about how cool it is for them to have a tool like that available. Those discussions paid off: When she’s seen people in wheelchairs out and about, she will compliment them on their “sweet wheels.”
The future is bright
Mackenzie, now 5, is a beacon of light with an incredible personality and outlook. We embrace her difference and get her into programs that push her to figure out her own way of doing things. Sure, she has some frustrations, but she always proves to herself and others that there’s nothing holding her back.
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We have read books, watched shows, and attended meet-ups and camps that include people with limb loss and limb differences, so she knows how normal being unique is.
I am a longtime swim coach, but before Mackenzie, I knew little about adaptive swimming opportunities for people with physical, visual, and intellectual impairments.
Now I’ve "dove" into that world and have become a part-time aquatics programmer and swim instructor for a local adaptive sports organization. I have also obtained a Paralympic coaching certification and am coaching athletes who will compete at this year’s Paraswimming World Series and, hopefully, the Paralympic Trials this summer.
It’s a good thing Mackenzie likes the water now because Mama’s got big goals for her, too!
It’s amazing how we figure out our new "why" when children come into our lives. Now, when I hear someone whisper, "She doesn’t have a hand!" I can’t wait to share the incredible things my daughter can do.
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Kari Treat is the publisher of Macaroni KID Schaumburg-Hoffman Estates, Ill.
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