Before he came into the world, I used to have glimpses of myself with him as a baby at the beach, the two of us plopped on a blue and yellow sunflower blanket, his blond curls caught by the wind. Imagining him older, I'd see us walking silently through a pine forest, looking up through the trees, watching for woodpeckers, hearing the creak and squawk of rubbing branches in the canopy. At some point I thought perhaps we'd fly with him to New York, to France, to Italy.

Now I walk alone with my dog Nellie across a vast field, tears trickling down my cheeks. I call her and she runs to me. Half-heartedly, I play hide-and-seek. She understands and can do so much more than her human brother. I get glimpses, but mostly I feel so little semblance of what I think parenthood must be. My fitful grief gets all balled-up with loss of hope, expectation, ambition, dreams.

It was hard enough knowing much of his brain's white matter was missing. Worry. Then my planned cesarean turned into an emergency. Fear. Then he needed help breathing and eating. Anxiety. Then he failed to thrive and barely develop. Guilt. Then we learned he could hardly see. Despair. It took him years to crawl and walk, and he has spoken just a single word—Mama—once. Misery.

Then he started to seize.

We keep him alive. Keep him fed, keep him warm, dry and clean. Try to control his seizures. Like any parent, we love him immeasurably, but beyond occasional smiles and giggles, there are very few glimpses of normalcy or happiness in our infant-toddler-teen.

In my lowest moments I think of good, productive and exciting lives wasted on years of soiled bibs, dirty diapers, sopping garments, sleepless nights, hopeless futures, monotony. Had our son been born healthy, I consider the freedom we'd be moving into with a child old enough to be alone. I juxtapose that glimpse of liberty with a heavy one of wondering how long my body and spirit can withstand the burden—my child's weight, his restlessness, his seizures, his behaviors, his need. I glimpse that burden in the mirror. I feel his trouble settling inside of me.


  1. You are the strongest
    person I know.

  2. Oh dear Christy...Bless your heart!

  3. I love this. I feel this with every inch of my now middle age body. Fifteen years robbed. What might have been.

  4. This is an incredible piece of writing. You are beautiful, Christy, with a rich inner life that is both inseparable/entwined with your son’s and utterly your own.

  5. It's so painful losing our dream child. It's death that others don't understand because we still have a child, but not the one we thought we would. There are no good answers. Sending hugs.

  6. I just came across your blog. Your words beautifully describe how hard this care giving gig is. My son is now 14 and is total care. I have been grieving even more lately - seeing how easy it is for my friends of healthy kids. The heartbreak of not knowing my son in the way I should have. No precious talks or doing the things we should. This is the time in my life that I should be back to being more about me as my children slowly leave the nest. But instead I am more and more confined to my home as my son grows larger and harder to care for. I love him with all of my being but I too wonder how I am going to continue as I age. Hugs..

  7. Sending you much love and light, Christy. Thank you for sharing your journey with the world. I do not know you, but I think of you and your family often. I have learned SO MUCH by reading your blog and for that I want to leave a big, heartfelt Thank You!