Spreading awareness, by my personal definition, does not revolve solely on educating you on what it is, how it happens, how it’s managed. It’s not just about the medical knowledge, the equipment, the therapies. Awareness is spread when you make a personal connection with spina bifida. When you feel what I feel, if even for a fleeting moment. When you can relate, when you can imagine, when you can almost tangibly feel the value of our experiences and feel a twitch, a pull to do something – anything – then awareness has been spread.
That is my goal. I tell you about me, about my family, our story in hopes that you will make a personal connection with spina bifida. It’s similar to my philosophy on education. It’s more than just memorization and learning the facts. Feel it, experience it, connect with it – then you’ll remember it and may even do something with it.
He is a child that feels deeply, feels quickly. His love is profound, his anger is passionate, his tears are heavy and complex. He is a child that looks you in the eye and will feel what you feel – crying with you, laughing with you, sitting silently with you. His emotions are chaotic, but they are his and they are genuine.
His journey and experiences with spina bifida have been exponentially different than mine, than yours, than hers. While we’re aware and have the ability to comprehend the medically-stained words and realities, all he knows is that he has a sister. And that he loves her.
To have his perspective of her, to see her as he does, would be a treat. To slip into his thoughts and experience her without the attachment of the diagnosis, the worries of a mother – it would be amazing.
The boy who loves her.
He is different than most almost-4 year olds and that is because of her. It started young. He didn’t know she was his until she was nearly 20 days old and came home from the place that kept his mother such long hours. He didn’t know how much he loved her until then, the moment when he realized she was there to stay. An intricate transition for someone who at the time had only been earth-side for about 17 months.
He instantaneously (and unknowingly) soothed his mother’s worried heart by freely showing how he deeply he cared for his sister. The unprompted hugs, kisses, affectionate body slams. They slowly peeled away the hard layers of anxiety that had built up around his mother’s chest during pregnancy, when she wasn’t sure how her sweet, curly-haired husband clone would cope with no longer being the only one.
His love was deep. Is deep.
He is creative. A dancer, a builder, a lover of imaginative play and elaborate stories with thick plots and meaningful characters. He has is own set of needs that are as significant and important as his sister’s. His aversion to crowded spaces, his adverse reactions to invasions of personal space, his strong emotional response to over stimulation, loud noises, fast talking. He’ll cry, scream, react with his body – but never at her.
She could get in his face and pull on his hair, cry at him, scream at him, and he would just say “silly Rora”. He’ll try to make her laugh, give her something to play with, find her snack.
The boy who loves her.
Once, out of curiosity, I asked him a series of questions. Is Eliora different? Is she sick? Is something wrong with her? He said “no” the first time, then a sassier “no” the second time, and then laughed out a “no” the third time. I’m sure he thought it strange that I was asking such absurd questions. His Rora is none of those things.
He’s the boy who doesn’t see the wheelchairs, the arm crutches, the braces. He sees beyond that, sees the person.
He’s the boy who won’t notice the physical differences, the scars, structure of your face. And if he wonders or wants to know, he’ll ask without using words like “weird”.
If your verbal skills are different than his, if you have your own way of being mobile, if you don’t look him in the eyes – that’s okay. He’d love to play with you anyway.
And that’s because he loves her and doesn’t remember a time without her.
He shows his love for her in ways that extend beyond words. If she’s upset, he’ll try to make her “silly” – his way of saying he’ll make her laugh. If she falls over, he’ll pick her up. If she can’t get to something, if she can’t reach, he’ll help her out. If she’s genuinely sad or hurt, he will cry with her. If someone is upset with her, he’ll tell them to speak to her nicely.
But he’s starting to notice things.
Having learned to go to the potty, he wonders if she will. Having learned to ride a bike, he wonders if she will. He wonders if the baby that is coming will be able to crawl and walk. He asks why we have to go to the doctor again. Genuine, reasonable questions that we answer openly and honestly.
It’s not that answers matter to him, that they will determine his feelings toward anything. They are sincere questions full of wonder, and he accepts the answers with a nonchalant attitude, simply satisfied to know the answer.
This sweet boy, my first child. Asher is the boy who loves her. And she loves him.