They say it gets better. It doesn’t.

They say God doesn’t give you more than you can handle. They’re wrong.

They say everything happens for a reason. Things don’t.

These are the thoughts that pinged around in my skull when, the day after a three-to-five-minute grand mal seizure followed by twelve straight hours of partial seizures—at least one every hour—Calvin tripped on his sippy cup, which he’d tossed onto the hardwood floor, and hurt his leg. He cried and cried cradled in my arms while I told him I was sorry that I hadn’t caught him, hadn’t steered him away from the cup he hadn’t seen but that I had.

Eventually, he stopped crying, but it was soon clear that he’d hurt himself badly enough that he avoided putting weight on his left leg, turning red-faced and reaching out for me after only a few steps.

“Fuck!” I cried, hot tears burning my eyes, knowing I could have helped to avoid the injury and wondering how in the hell he’d be able to get around if he needed a cast or a special boot. He has enough trouble walking on his own as it is, I thought.

Calvin’s Superdoc squeezed him in between patients, examined his leg, noting the same slight puffiness to his foot that I had seen, then sent him to get x-rays. The radiologist saw no breaks, though it’s possible a hairline fracture, which might not reveal itself until the healing process begins, is the culprit.

Racked with guilt and dreading a bad outcome, I was restless worrying about my child, if he was hurting, how he’d get around, if we’d injure ourselves carrying his fifty-plus pounds of slack weight up and down the stairs. Michael assuaged my angst with soothing words of optimism and a shot and a half of bourbon on the rocks. He expressed his awe, at the same time reminding me, that Calvin, who is eleven and legally blind times five, has cerebral palsy, is missing a significant amount of the white matter in his brain, is non-verbal, still in diapers, has low muscle tone, recurrent seizures, was on a special diet that can cause osteoporosis and is on medications that can affect bone density as well as cause dizziness, lethargy and poor coordination—just for starters—has in the past tumbled down the stairs, fallen flat on his face, his elbows, his knees, his hips and square on the back of his head on a hard floor but has never broken a bone or hurt himself very badly.

Still, I was aching for my child and wallowing in self-pity. Then I read this short Facebook post from my friend Lidia:

really good things are going to happen to you. really hard things are going to happen to you. feel both all the way through, because they will each change you radically. then remember there is a deeper wellspring you need to replenish, the you in between life events, the you born of water.

I felt as if she’d written it for me, right then and there—perhaps she had—and reading it gave me great solace knowing she is right, thankful she isn't one to fling thoughtless platitudes.

Even so, this morning, I woke up in the grips of despair again only to view this harrowing short Op-Doc from the New York Times about the Nubanese ethnic cleansing in Sudan. Watching it smacked me back into the the reality that, even with a kid like Calvin, we are fortunate and should be so incredibly grateful for what we do have and for the horrors we don’t have to deal with first hand. There are so many wrongs in the world which, with my small voice, I can try to right, rather than whining about my life’s little incidents which, in the scheme of things, don’t amount to much. Then, I recalled the platitudes I was considering after Calvin tripped, and thought:

these innocent people of sudan, it doesn’t really get any worse. tell me god hasn’t given them more than they can handle, getting bombed out in a cobra-infested cave or a dirt hole, seeing their children riddled with shrapnel or set on fire, seeing their children's flesh burned off, hearing them screaming for help, seeing them burn to death or die later from tetanus, from maggots burrowing into their charred bodies. try to tell me there is some grand design in that. just try.

Platitudes. Though perhaps well intended, like salt in a wound, they can burn, because sometimes, life does give you more than you can handle and often, things don't get better and for no good reason at all.

A young Sudanese refugee cries for his mother. Photo by Stephen Morrison/EPA/Corbis


  1. I think my comment disappeared, but I found this a beautiful albeit heartbreaking post. I wanted to tell you that your experiences with Calvin probably more deeply inform your perspective on suffering in general and that feeling pain and heartache in your own life perhaps gives you a deeper sense of compassion toward all those who suffer. I also wanted to tell you that I utterly understand the despair you feel when Calvin has an accident or hurts himself physically -- despite witnessing all the seizures and the side effects for so many years, it's bbeen when Sophie really hurts herself in falls, when she broke her tibia, etc. that I felt truly broken. Calvin, like Sophie is incredibly strong and adaptive.

  2. I think the suffering of others is far more vivid, present and humbling for me than might have been the case if I didn't live with the daily stresses and sorrows related to mothering a severely handicapped daughter. There is somehow a direct continuum of felt experience to which one stays open.

  3. Lidia is wise beyond measure.

  4. This post really touched me. I'm falling in love with your boy - he is so cute and sweet. I feel for the hardships you endure and wish it was easier for you. I send good wishes and peace your way.