freedom envy


This morning I laid awake in Calvin's bed with my arms around him after he’d had a seizure. He shivered and shook for a good part of an hour, half asleep, half awake. As the seizure was waning I’d given him several drops of cannabis oil with the hope of preventing a second one.

As I rested with my eyes closed, I thought about an encounter I’d had on Monday while bicycling across campus to the grocery store. The sun had been out, the air smelled fresh, and it felt good to be untethered from Calvin with the wind in my hair. At a crosswalk I met three moms toting their kids. I hugged my friends and shook hands with the third mother whom I didn’t know. One by one I greeted their children, sweet smiles beaming from each of them when I did. My friends, who were glowing, albeit perhaps a bit weary, proclaimed that they were done having babies. When the third woman asked if I had any children I told her that I have a ten-year-old son. “Are you done?” she asked, and I took it as somewhat of a compliment since I am fifty. “I’ll never really be done,” I said half chuckling, then I went on to explain how much Calvin is still—and will always be—much like a baby, in that he can’t talk, still wears diapers and can’t walk all by himself. “He also has epilepsy,” I added.

Since I was child-free at that moment, one mother mentioned how she was jealous of my freedom, saying that sometimes, when she drives by my house, she sees me sitting at my computer writing. She expressed great longing for that kind of time to be hers. I replied by saying how grateful I am that Calvin is in school most of the day. Then, in a manner which appeared to soften the comment about freedom envy, my other friend looked into my eyes and said something like, "The grass can sometimes look a little greener from either side."

With a busy day ahead of me I said my goodbyes and took off for the store. As I rode I reflected on our conversation. I wondered what kind of freedom some people think I have. I wondered, too, if they ever drive past when I am struggling with my stubborn boy, when he is yanking my hair and dragging his teeth across my face, when I am walking endless, monotonous circles around the house and yard holding his harness, or listening to him scream bloody murder, or thwarting his eye poking, ear poking, finger snapping and sun staring. I wonder if they hear me when I am screaming at the top of my lungs, when I'm trying to change his messy diaper while he thrashes and shrieks and shit gets everywhere. Do they see me when I am tending to him during a seizure, when I am logging every detail about his drugs and his poops and his appetite and his behavior and his temperature and his balance and his countenance, when I am waking up to check on him three, four, five times a night—like a new mother—which I’ve done most nights over the past ten-plus years? I wonder if they go past when I'm trying to determine the source of his hurting, when I lift all fifty pounds of him from jumper to highchair to changing table to bed and back again, when I bathe him and dress him and undress him and dice his food and brush his teeth and cut his pills and spoon feed him and worry—constantly—about his safety and well-being, about the drug side effects, about him choking, about his kidneys, his teeth, his bowels, his bones, his skin, his eyes, about his drug withdrawal, his increasing seizures, his mortality, his tenuous future, about what would happen to him if I die before he does.

Later, I shared the episode with Michael. “Freedom? When was the last time we took a family vacation?” he asked, perturbed, and I considered how we rarely even go out to breakfast or lunch as a family and have never taken Calvin out to dinner. We don’t go to school pizza parties or bowling nights or dances; they all occur around the time that Calvin gets his nighttime meds and is off to bed. And even if we could go, he’d be impossible and we’d spend the entire time redirecting him from the exits, making sure he didn’t bite filthy surfaces, metal or glass, keeping him from dropping to the ground, preventing him from tripping and running into things, calming him when he’s manic, watching for a seizure. We don’t go to the playground, I don’t watch him in school concerts or pageants, we don’t go for bike rides or hikes or to the beach to play in the sand. We don’t take him to the movies or watch them together at home. We don’t go to birthday parties or buy him ice cream cones or hamburgers and fries. He doesn’t have sleepovers, nor does he have any true friends to speak of. He can’t do sports or play in a band or enjoy rides at a carnival or play catch or draw pictures at home or read a book quietly in his bedroom much less sit still to have one read to him.

Freedom? I think. Michael adds incredulously, “What? Jealous of one of the worst losses that can happen to a human being?” Then I thought of how our relative lack of freedom is a First World problem, and I realized what a whiner I was being. I thought of all of the families who have lost children or who have children worse off than Calvin, of the families that barely get by, or don't have fresh drinking water or shoes or a decent education or a safe neighborhood or proper medical care or sufficient shelter, or are suffering from famine or disease or war, and I realized how lucky we are.

Then, revisiting the mom encounter and the freedom envy remark, I thought perhaps it might have simply been an attempt to do what so many others have tried to do, which is to level the playing field for my benefit. With a disabled child, though, there is no leveling. It’s not a place where, “Welcome to motherhood” applies or can assuage any of the hurt or the hardship. It’s like what I told the three moms before I rode off on my bike, about mothering our different children: "We all have our challenges ... you really can’t compare."


  1. No offense, but I practically spit up a mouthful of the ice-cream sundae I was eating when I read your friend's statement about your freedom. It would have been very difficult for me to not say, "what the fuck are you talking about?" --

    As I type this, free and alone in my room, I heard a strange banging and realize that it's Sophie, hitting her head over and over on the slim bit of wood not padded between her door and closet.

  2. Your friend sounds terribly shockingly insensitive.

  3. We all seem to envy others. I used to envy my friend who lived next door; her three perfect girls, loving husband, perfect house and now she has cancer.

    And people who don't have disabled children have no idea what it's like to care for such a child, the never ending of it. Until you've done it, you can't imagine how hard it is or that you can do it.

  4. this is me. and jack. it is sickening yet comforting how similar our boys, lives and experiences are. hugs, cause i need one too

  5. Well said, Christy Shake. A wise woman once said to me, "Remember your qualifications."
    Clearly, you remember yours.