In recognition of Spina Bifida Awareness Month, Whitney Stohr penned an open letter encouraging inclusion. She asks people to join her in celebrating our unique differences and to see her son for the extraordinary child he is.
Whitney and her husband, Jason, found out their son Malachi would be born with spina bifida when she was 19 weeks pregnant. Whitney said the moment they walked through the doors of the hospital they knew they were in the best place possible to give Malachi the best care possible. Whitney and Jason call Seattle Children’s a second home. The Stohr family moved from Yakima to Lynnwood to be closer to the expert care Malachi needs at a moment’s notice, offering them much-needed peace of mind at a time when there’s so much uncertainty.
In total, their family spent more than 380 days at Seattle Children’s, helping Malachi overcome tremendous hurdles. Today, in the midst of a pandemic, Malachi’s healthcare needs remain complex and require seamless coordination amongst his many providers at Seattle Children’s, the only nationally ranked standalone pediatric hospital in the Pacific Northwest.
Malachi’s incredible, ongoing medical journey is only part of their story. Whitney says she hopes people see the bright future Malachi has ahead of him.
An open letter for inclusion
As the mother of a child with a disability, my goal for Malachi is that he will be seen — truly seen — and valued as an amazing, unique human being. When you see Malachi, I don’t want you to “look past” or “see beyond” his disability. When we talk about Malachi, I don’t want people to use euphemisms like “special needs” with the intent of somehow “softening” what some may perceive to be a negative aspect of my son. I want you to see Malachi, all of him. My son is disabled. He has a disability, and that is — in no way — a sad or unfortunate truth. Malachi’s disability is just one aspect of who he is. He is awesome because of his disability, not in spite of it.
As a family, we celebrate our differences, and we want you to celebrate them too. We believe our son has boundless potential and a bright future. He has the most amazing, unique, extraordinary spirit. While there is no hiding that he is different than other kids, those differences make him beautiful. The things that make us different are what make us all beautiful!
In his lifetime, Malachi will face more challenges and barriers than others, but those barriers aren’t due to his medical condition; society places those barriers on him. His life will be different than most, but we are doing everything we can to set him up for success. I am teaching him to use his voice so one day he can share his story with others and change the world for the better. I am raising a revolutionary. It is my fear that others may try to define him by his disability — or, worse, view his life with a sense of pity, or treat him as somehow ‘broken,’ ‘dependent,’ or with ‘less value’ than non-disabled people. I want him to be proud of who he is. I want him to take pride in his disability because, in Malachi, I see nothing but light.
Malachi has given me a strength I didn’t know I had, and he’s also given me a voice. Before he was born, I would have let things go. I would have shrugged them off – not now. Now, I have the strength and confidence to advocate and call out wrong where I see it, and I won’t stop until I’ve knocked on every door and broken down every barrier.
Today, I want to help other people find their voices. Together, we can be loud. Together, we can create a world that is inclusive and accepting for all our kids – starting in our own communities.
Wherever decisions are being made, at every level, I ask that we include the voices of people and families of all abilities and that we take steps to ensure that everyone’s input counts. Whether it’s in healthcare, education, or community planning, programs and public policies are better when they are shaped and influenced by the communities they touch. A good community includes everyone.
My ask of you is this: join me!
Be a voice for inclusion. Be an advocate for change. Be a breaker of barriers.
Come and walk and roll with us on our journey! Be a part of our community.
With your generous support, Seattle Children’s can help more children like Malachi live their most fulfilling lives possible. For medically complex children like Malachi, their ability to thrive relies on specialty pediatric care. At Seattle Children’s, nearly every medical specialty area Malachi receives lifesaving care from is funded in part by people like you..