Most of us are familiar with the game little children play when they pluck petals off of flowers. You know the one. Every petal alternates between two possibilities: He loves me. He loves me not. He loves me. He loves me not. The French have a similar game, but it involves five variants instead of two: He loves me a little, a lot, passionately, crazily, not at all.
I think the French might be on to something here. There are clearly more than two options open to us when it comes to love. In fact, there are probably as many kinds of love as there are people in the world. It might not be something we admit to everyone (or even to ourselves), but we often love each of our children in different ways. Sometimes we even cycle through several kinds of love for the same child. My own children are no exception.
My oldest daughter, RoRo, was born healthy and has remained so. She developed at the typical rate, doing everything exactly when she was supposed to. Do you know those sheets you are given at the pediatrician’s office, with the lists of mastered skills based on age? RoRo checked off every box, every time. She wasn’t a difficult baby or a particularly headstrong toddler and has grown into a cheerful, responsible, happy, helpful grade schooler. Everything she does is within reasonable, predictable limits. The things that make her cry, smile, or feel afraid, are often the very same things that made me cry, smile, or feel afraid when I was younger. I can almost always imagine what she is feeling, which makes it fairly simple for me to comfort, advise, scold, or praise her. She is infinitely relatable, which makes her easy to parent. And, yes, I’m going to say it: She is also easy to love.
I care for RoRo deeply. With every passing day, I care for her more. But I love her in a way I don’t often examine or question. I love her because she is sweet, because she tries hard, because she is a fun and interesting person, and because she is mine. What else is there to say? It’s the kind of parental love most of us can relate to because we’ve all seen it, in one form or another: uncomplicated, gentle, sweet, reciprocated love. My oldest daughter and I hug, kiss, and verbalize our love for one another multiple times a day, every day. I know our love will change over time, will become more complex and nuanced the older she gets, but I’m also fairly certain I will always have a frame of reference for it. My love for her will always remain within limits I can understand.
My youngest daughter, JJ, is another story entirely—a long, complicated one. If you have a special needs child, your own story likely has as many twists and turns as ours does. She began by developing typically, and I began by loving her in a typical way. I loved her very much, of course, but maternal love didn’t feel all that different the second time around. Then she stopped developing normally. She stopped doing much of anything, really. She didn’t walk. She didn’t talk. She didn’t pay attention to the people around her. And so my love for her became tinged with worry. There was a creeping darkness around its edges I didn’t want to examine.
As my daughter’s second birthday neared, two things happened: She was diagnosed with autism and she began biting herself. I would be lying if I said the diagnosis didn’t change the way I thought about her or the way I viewed our future together. Unexpected diagnoses will do that. I know we’re not supposed to think this way, but we are only human. They are still the same children after the diagnosis, but our role in their lives and our expectations for what might happen to them have changed. And, of course, there’s the worry. It’s impossible to take two people—one for whom we have no deep-seated, all-consuming fears and one who constantly worms their way into our nightmares—and love them in the same way. Parents are simply not built like that.
More alarming than my daughter’s autism diagnosis, though, was the way she began biting herself. I’d never seen aggression, violence, or anger of this magnitude before. My daughter became a person who screamed in my arms for hours every day. I held her hands away from her teeth for so long my muscles ached afterward. As I held her, I worried about what our future held, about how we could continue like this, about what witnessing this violence was doing to RoRo. No daycare or babysitter in the world could handle something like this, so I quit my job. We sent RoRo to live with relatives until we got things under better control. We enlisted professional help and prayed with all our might that it would work.
All the while, I continued to love JJ. But did I love her in the same way as when she was a smiling, chubby-cheeked baby? Of course, I didn’t. I loved her because she was my child, because she deserved to have someone love her, because I couldn’t not love her. But it’s a terrible feeling, loving someone you’re afraid of. It’s not something I’d ever had to do before, and it’s not something I ever want to do again.
Bit by bit, with time and intense therapy, my daughter emerged from her dark shadow world. She stopped biting and began to walk, smile, and say a few words. She awoke to the world around her, looked us in the eyes again, and finally seemed to care that we were there. I loved her fiercely in this moment—not because her behavior had improved, but because she had worked to get to a place where she could be herself again.
When you’re a parent, all you want is for your child to be happy all the time, even though we know how supremely unrealistic this is. A child who is different and who suffers—either because of their differences or because something in their body is causing them pain—doesn’t get as many happy moments as other children. But when they do experience those good times, there’s nothing like it. I felt every moment of JJ’s happiness as if it were my own. If she smiled, I smiled. If she laughed, it echoed deep within my chest. The love between us felt precious because it was hard-won. I was proud of her for working so much and of myself for sticking through the dark times with her.
I wish I could say the story ended here, but as parents, we know the story is never over. And as special needs parents, we know it’s almost never a quiet, predictable one. As fall became winter a new terrifying twist emerged. My daughter began crumpling over, shaking, and jerking on the floor multiple times a day. She also became unable to drink. Liquid would dribble out over her chin and onto her shirt any time she tried. Finally, we found out that she had a brain malformation, and that it had worsened. She needed surgery.
The love we feel when our child is in crisis or in danger is a fiercely protective one. It is also intricately bound up with fear. We’re afraid that we won’t be enough to stop the danger, that we’re dealing with something we don’t know how to fight, that we’ll lose the thing we love most in the world.
My daughter’s surgery went well, and she recovered nicely. Once again, we experienced the slow slide back into happiness. Her convulsive episodes didn’t go away, but they no longer scared her enough that she refused to stand or walk. She began moving freely again, wandering in circles around our living room and out in our sunny backyard. Winter became spring, and we let her spend as much time as she wanted outside, which was her favorite thing to do. Again, I had that feeling of something precious, of something lost that was regained.
Then there was another twist. Her steps began faltering. She wobbled and fell any time we let go of her. She stopped using her hands. A doctor called and delivered what he termed a “devastating diagnosis.” When we learned about Rett Syndrome, it all made sense. JJ was experiencing one of the many unpredictable regressions that come with the disease.
As I learned about the kind of future we might expect for my daughter and the other skills she was in danger of losing, I felt a new kind of love. I would look at her—my beautiful strong girl who was losing strength every day—and know my role had changed. I was now her protector. I was the person who would prop her up when she slumped over, who would guide or wheel her into rooms, who would speak for her when she could not for the rest of her life. She was vulnerable, and I had to be her shield from the rest of the world. So I settled into a new feeling—a love infused with bottomless grief.
Loving someone who is out of control, who is in crisis, who has worked hard to earn every moment of their happiness, who is vulnerable and needs protection—these are all vastly different things. I’ve learned a hard lesson over the last couple of years: The love we feel for our special needs child can change quickly and intensely. It is always evolving, always mutating, always surprising us.
Because special needs parenting comes with so many twists and turns, it comes with a wide spectrum of emotions. We feel everything for our children that others do—fear, grief, joy, and pride—but more deeply than we ever thought possible. It is parenting on steroids, parenting amplified by a thousand percent. The feelings that engulf us, both the good and the bad, are often so intense they are nearly unmanageable.
This is what I find difficult to convey to friends and family members and, most especially, to parents of healthy, typically developing children. We are riding a roller coaster with powerful highs and terrifying lows we will never be able to control. We didn’t choose to get on it, and we can never get off. We’re simply along for the ride, with no way of knowing how it will turn out.
But it’s not all bad. The intensity of this experience can bind us more closely to our child than to any other human being on the planet. And though it’s exhausting, that kind of emotional connection can also be exhilarating. Every sensation is heightened, every moment deeply felt. Everything we experience together is precious. Nothing is taken for granted.
What I feel for my daughter is that big, crazy, passionate love the French were talking about. But it’s not something that can be contained within a handful of petals or even a few flowers.
If I were to count it out, I’d need an entire field.
What kinds of love do you feel for your child or children? How has your love for them changed over time?
Leave a comment and tell me below.