When my son's disease struck, it felt like my heart got broken. Not in the bad way, but in the good way--cracked open like a nut and suddenly open to every breeze, every breath, every moment. Being a parent melds us with the experiences of the child we love. If our child is impaired in some way, we speak for them when they cannot. We fiercely, repeatedly, and easily choose to love these beautiful humans, some in wheelchairs, some with differently shaped limbs, some without the ability to speak, some in ongoing emotional distress, some with medically fragile conditions, some angry that their bodies won’t do what they want them to do, some shouting triumphantly when completing a task. They curl up at night sleeping in trust of us. We soak up the love they offer. We nurture their beauty. All good parents, I think, aspire to this.
I will never be the same as before my son changed me. I will never be as small. I will never be as sheltered, though I know, I know, I know I am sheltered in other ways still. But my heart got peeled open and here I am, seeing every vulnerable body on this planet and wanting to take them in my arms and protect them from people who just don't understand. Part of me will always, always be in that hospital room, hearing about the rest of our lives and not yet understanding, not yet knowing anything but that I had been cracked open.
I will never again understand what it's like to be watching from afar, unaware of the beauty and struggle intertwined in every single daily act, when love is blown up like the moon because your child is able to do some simple thing that is life-affirming, what it means to have your own sense of wonder exploded because someone took a step, or ate a thing, or slept a night, or found a way to laugh. The wheelchair doesn’t stop the squeal of delight—it might inspire it. The artificial limb allows the child to walk. The parent who is sleepless stays up to soothe the blasted heart and comforts anyway, anyhow, always.
The sunrise was gorgeous this morning. My three-year old showed me through the window, the pinks and blues and oranges hinting at a new day being born. Last night, my older son had a spring in his step because he spent time with friends. They enjoy his company and they see something of what I see in him. It is glorious to see that slight uptick in his mouth, the lightness in his walk. I imagine there are ones who would take such things for granted. I imagine there are ones who can't see the joy in this. I imagine there are ones who would not, could not, see it at all.
And they--the unseeing ones--don't know that they are smudges on my morning window. They may sometimes upset my sense of balance, but they cannot ever take from me the love I feel for my son, for all children like mine, on the margins. And they can't erase the love I feel for the other ones who share this sidelong space with us, who are sidelined for reasons of skin color or sexual preference or gender identity, or lack of money, or religious identity, or history, or injury, or different mobility, or whatever cold justifications are used to scoot some of us out.
I love them all. I want to see them better. My curiosity is fired and I feel like I have some small sense of why they might be hurting. But instead of stopping there, my broken open heart wants to know more. Tell me, I want to say, why you are hurting. We can protect each other from the storm. I don't know your pain, but I do know pain, so let me listen and hold.
The other ones, the squinting ones, don't know what it's like to walk around raw-hearted as we do. They don't know how that makes you soak in the sun more, how love is so much bigger, so much brighter. I am so much better at loving everyone because of my son. I’m better because of knowing other families like mine, because of my willingness to feel things that others ignore. I'm a blister. I'm a seed that cracks open again and again.
I think the urge to teach these other ones lies in the wish that they too could grow, that they are stunted by something, and they may try to shrink the rest of us because they think, mistakenly, that they don't have the time or energy to understand the lives of others. What they are really saying, though, is that they don't have the time or energy to learn how to love. It's all love, at the root. That's what the policy-makers who would ignore us don’t understand, and what the frightened ones throwing up their hands don't understand, and what the anxious ones refusing to look squarely at us don't understand. It’s what the ones who judge us, who make fun of us, who dismiss us, do not understand. Love is a process, love is a question, love is an invitation. You've been invited to a bigger heart, I want to say, and you've declined. Meanwhile, the sun comes up and we make breakfast. We slip on shoes and socks. We hold palms and we kiss them.
And this is why those who lob judgments at parents of disabled children are so misguided. They will never be able to pack back up, by ignorance or mean-spiritedness, the bursting heart that has been opened. They might bring tears from touching sore spots, but the idea that they could ever make us look sideways at our beautiful children, to make us stop wanting to lift them up--the thought that they might ever make us small again, make it impossible for us to see kinship with those other hurting, soft, big, open, singing, calling-out hearts--well, that can't happen. We fight against arrested insight from a place of love, not fear. We fight to protect that which is most valuable, which they haven't yet the capacity to see. It's all about love.