“Where is her hand?”
That’s the first thing I asked my doctor after my daughter, Jordan, rapidly arrived into the world. The doctor and nurses were so surprised by her speedy delivery, they didn’t notice what I noticed.
There was my tiny daughter on my stomach. And she really didn’t have a hand.
The doctor looked up at me and let my husband and I know she was okay.
She was okay. She was just right.
I looked up to my husband and our eyes connected. We knew we would make sure she would be okay. The commitment we made during the first minutes of Jordan’s life has held strong.
Luckily, Jordan arrived in the world with a lot of opinions and a hard head. She may not be an easy kid to parent, but her opinions and energy have guided her through the years.
I never wanted to see that sparkle in her eyes fade.
But I didn’t know the first thing about raising a child with a limb difference. I craved to find community and learn from other parents of kids with limb differences. That’s why I launched my blog, Born Just Right, to share stories about raising Jordan and her brother, Cameron.
Writing about my experiences as a parent of a child with a physical disability has been a long journey. Not only do you need to release the initial vision you had of your child, but you start to develop an inner drive to support a new pathway forward for your child to thrive.
I didn’t know the first thing about raising a child with a limb difference.
Jordan and I grew into a team, traveling to make sure she had access to prosthetics that might help her prevent long-term damage to her shoulders. We held meet-ups and attended family camps to meet other kids and adults with “little” arms and legs.
Meeting and learning from so many others helped me learn to step back and let Jordan figure out solutions on her own. I learned to not shy away from using the word “disability” but to embrace it to remove the negative stigma that often gets attached to it. I also learned not to make assumptions when I meet someone with a disability. Instead, I listen and learn so I’ll know how best to support and empower them.
But even with all of that knowledge and support, we still encountered moments of frustration and misunderstanding.
Jordan is changing the dialogue around disability.
There were stares when we were out of the house, times when she stood out at school, and Jordan didn’t see herself reflected in the dolls and toys on the store shelves. That “othering” she experienced — while just going about daily life — was at times difficult to navigate. But we were determined to change the narrative.
For school, I created homemade picture books to help her classmates better understand her disability. Jordan would hand out her helper arms so kids could touch them and see how they worked. She would encourage others in public not to stare but instead to ask her about her limb difference and when she saw opportunities to speak up in support of the inclusion of the disability community, she did.
That drive to make a difference is something Jordan has grown into over the years. At 10, she launched a Change.org petition to encourage the inclusion of limb difference options for American Girl dolls. Her years of work led to a chance to consult with the Barbie design team on a new doll that wears a prosthetic leg.
Jordan also gained a lot of attention after she invented a 3D printed unicorn-shaped prosthetic arm that shoots glitter.
No, seriously. She attended a workshop where she invented a prosthetic that shoots glitter — her idea. And her success led us to turn our blog into a nonprofit, Born Just Right. We work together to raise money for our new program, BOOST, that brings together designers and engineers to help teach STEAM skills like design thinking and prototyping to provide kids with disabilities with the knowledge and training to bring their own ideas to life.
The book is the memoir Jordan wanted to write so she could share her disability experience with kids and adults around the world, and encourage open discussion on the topic.
Born Just Right just held its most recent event at the Cambridge Science Festival in Massachusetts, where our workshop attendees, ranging in age from 11 to 18, got to present their ideas to a live audience. How cool is that?
Jordan is changing the dialogue around disability. And she has looked for as many ways to make that possible. That’s why she and I spent the last two years working on a book that is about Jordan’s life from birth until right before middle school. Named after our non-profit, Born Just Right, the book is the memoir Jordan wanted to write so she could share her disability experience with kids and adults around the world, and encourage open discussion on the topic.
The commitment I made to Jordan the moment she was born has turned into a partnership. That sparkle in her eyes is focused on making sure disability is included in the conversations and activities everywhere we go. I’m proud to be there to support her along the way.
Born Just Right is out now from Aladdin.