Interviewing Diala was an honor because her “hiccup” is so much more than a hiccup, and I was transformed to hear her story. Maybe you will be too.
She embodies a ball of contradictions. Soft spoken yet assertive, sweet but ballsy. We meet and she sports a kitten-gray top, glasses on head, deep purple nail polish. She’s chilled, fun, a citizen of the world, yet something in her exudes, “This is what I’m doing so out of my way… please.”
We get so engrossed that we order nothing. No tea, no green juice, not a mouse-sized crumb in our mouths.
“It took me 7 years to get pregnant.” Little did she know that she would face what all mothers of a child with a disability face – judgment, fear of the unknown, and lack of empathy or willingness to learn more. Diala’s daughter Sara has spina bifida – a birth defect where the backbone and/or membranes surrounding the spinal cord aren’t closed properly. The condition can affect walking, the bladder, and carries a slew of health consequences.
Sara, who is now three, is a “puzzle in a region where any disability, visible or not, is far from well received.” We are still living in a time and culture where disability is so taboo that people are encouraged to keep theirs hidden, at home. Sara uses a rollator to get around pre-school and explains to schoolmates: “I use ‘Baby Rory’ because I have special legs.”
I already love her Sara. We share the same name! She is an old soul with the kind of spirit to convince her substitute teacher that today’s her birthday so the whole class scores a bag of candy to celebrate. Often kids with disabilities don’t see themselves as inferior. And they shouldn’t, ever.
As I listen to what Diala faces on a daily basis, I keep thinking life is unfair but she quiets that weak voice in my head. “Unfair” never passes her lips. Self-pity doesn’t dare knock on her door, let alone get a backstage pass.
Sara had full leg serial casts for a year and a half. She underwent surgery at 8 months to untether the spinal cord and to excise the lipoma. “I quickly learned how to read scans, ask the right medical questions and silence my self-blame.”
As a mom you ask questions. You google, check with friends, call your mom and have a full-fledged conversation with your gut. Diala smiles, “Multiply that by a hundred and you’ll get a fraction of what I go through.” It’s a fact. With Sara it’s always a question mark, why the UTI or sore throat or random rash. I can’t even imagine how exhausting that is. The weight and worry of that.
I love how Diala’s raising Sara to be independent: “I’m trying to teach her risk assessment and that you can do it, but consider the risk. I don’t tell her, ‘You will fall down.’ I tell her, ‘It’s a bit risky.’” They’ve done stairs. They’ve made physiotherapy equipment.
Diala quotes ‘well-educated people,’ who “Tell me I’m so lucky – it’s so easy to travel because I don’t have to run after a spirited toddler.” No, these individuals do not help her find the silver lining to her challenges.
Diala’s currency is her resilient thinking.
“I have lots of ideas to make special needs more accessible.” The world doesn’t think to include place for a rollator or wheelchair in a playground. Or access to the sea on a beach. Imagine pushing a wheelchair through sand to reach the water.
“We’re missing playgrounds for ALL kids to be together in, those with physical challenges, autism, Down Syndrome, and other needs. Playing all together to get used to those who are different on all levels. We need a project to build that.”
Faced with prejudice in the form of: “That’s not fit for Sara…” her reply is, “It’s not WHAT?” She’s realized something it takes people a lifetime to get: that life is choices. If there’s a location or event or activity deemed “not suitable for Sara”… Diala looks me square in the eyes: “Sara goes. Even if I have to carry her on my head, she’s going.”
“I’m human too and, of course, when my back hurts, I don’t show her… I don’t give in. I say I can so she can.” As we talk, tears may well up but they never spill over.
What does she want out of this interview? No sad looks, just willingness to understand others better – to raise awareness and share resources on how parents can empower their kids to have an independent life. Diala is connecting with as many people as she can to make this playground a reality. And with her charming streak of unwavering perseverance, I have no doubt it will be.