heartache, hardship and joy

Ethan bounces a basketball in the driveway. Inside, Ben holds Abby on a couch the same color as her coat. She licks his face. As dusk begins to fade, mosquitoes hover while Maddie and Zack are out on the boat with Michael. The faint hum of the motor skips across the bay. I sit on a padded chrome chair in the middle of the dock with my sister-in-law, Betsy, who straddles a dry-docked kayak. Her husband Sean takes the other chair while Rudy noisily paces around dragging his paws across the corrugated aluminum deck. It is a perfect moment. The nip in the air and the chill of white wine in glasses as big as our smiles gives me shivers. Dinner is done and Calvin is behind doors fast asleep in the vacation rental, which sits on a bluff just feet above Quahog Bay. Gma and Gpa pull up chairs on the upper deck to spy the red light off the butt of the boat as it drifts into the dock. David and Lisa join just as an osprey flies overhead.

We had taken our young nephews out on the boat earlier, Calvin too. It was my first ride of the season and two summers since I’d last had Calvin on my lap in the boat. He squirmed and screamed with some sort of excitement, perhaps irritability, perhaps indigestion. As he did so, I held him tightly so that neither of us got hurt. Ethan took a hesitant try at steering the boat while Michael shot a few pics of us from the bow.

“This is the best family reunion ever,” Ethan had told his grandmother, and continued, “No offense, Grandma, but this is better than the one in Amelia,” and he went on to explain—with a no-offense lead-in each time—that he preferred that the reunion was an airplane ride away from home and was near Calvin’s house. No offense was taken.

“Calvin is my most favorite nine-year-old,” Ben chirped a few times, “I can’t believe he’s going to be ten next year,” and I recalled how Ben was ten the last time he visited us with his Dad, and in my mind I compared the two: the boy with Autism versus the boy with epilepsy who is missing part of his brain. His mother Lisa, my other sister-in-law, showed me the handful of pills she was about to give each of her sons and said lovingly, “See, you’re not alone.” I began to say how glad I was not to be alone, but then retracted that gladness replacing it with regret that either of us—anyone—must endure the hardship and heartache of children like ours, children that bring us so much despair yet so much joy.

photo by Michael Kolster

understanding

I went to sleep with a smile on my face listening to the sound of faint laughter seeping through the crack I’d left in the bedroom window. Outside the trees were dripping, as if rain, in a soupy fog that had moistened the skin on my face and set blades of grass aglow in the twilight. I had left the boys, Michael, Charlie and Roger, under the light of lanterns, to head upstairs to bed. The three friends remained for a time in the refuge of the screen porch sipping from beers and bourbon between quips and guffaws, safe from the bite of bugs and the swoop of an occasional bat. After three goodnight hugs I stepped out onto the dewy lawn as Charlie joked, “Sleep well and good luck living with him.” We all laughed at Michael’s expense and he understood our love.

I had spent part of the day gardening under a dark sky in the dampness of a constant mist. Perfect gardening weather, I’d thought, as I dug up and relocated hostas, clipped spent peony buds and transplanted phlox. I take great care while pruning to achieve the ideal form of a plant or tree in relation to its neighbors, to its available space. By pruning I exert control over my garden. It’s my therapy, I tell people, a way to perfectly influence something since I cannot control my son’s condition, his seizures, and therefore cannot really control our lives to a great degree.

I think Charlie and Roger understand, at least to the extent that they can, not having disabled children of their own. It’s because they listen, they watch, they read. These friends of ours thankfully never give advice, never try to fix things, never try to tell us that Calvin is a gift or an angel or that things will get better. They just spend time with us when they can and in doing so bring great levity to a home riddled with anticonvulsant drugs and seizures and shrieks and falls and back-breaking lifts and sleep deprivation and endless dirty diapers and an often irritable, hyper kid who cannot tell us what is ailing him.

And so I closed my eyes and imagined the garden teaming with birds and buds and tender inches of impossibly green new growth that seemed to appear overnight. I closed my eyes to the warm light radiating from a porch nestled in the midst of a black Eden. I closed my eyes to the happy sounds of friends who love us dearly. And I closed my eyes to the rustle of Calvin sleeping peacefully in the next room, perhaps dreaming, though I know not of what.

photo by Michael Kolster

love and burden

Freud posits that any declaration of love masks some degree of odium, any hatred at least a trace of adoration. All that children can properly require of their parents is that they tolerate their own muddled spectrum—that they neither insist on the lie of perfect happiness nor lapse into the slipshod brutality of giving up. One mother who lost a child with a serious disability worried in a letter to me that if she felt relieved, her grief was not real. There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted—even in imagining another life.

—Andrew Solomon from Far From the Tree

photo by Michael Kolster

art

Art washes away from the soul the dust of everyday life.

—Pablo Picasso

photo by Michael Kolster

friday faves - notes from friends and strangers

From last June

I wanted to tell you that I dreamt of Calvin last night. It was one of those extraordinary dreams, in which strange things happen and you awaken wondering just what could have provoked that particular train of thought. He was happy and gave me floppy hugs and then looked in my face and said "glasses." I don't know what it means, and I don't think you probably believe that it means anything, except perhaps that I read your posts and think of you and Calvin often. I hope this finds you and Michael well, and Calvin seizure free today.
 

Hugs.

—Amanda

im sorry, i know u dont know me, but ... i just wanted to say i loved the birthday story about ur son ... im pretty sure me and u come from different backgrounds, but im here to tell you that your story made me cry with joy, even though i may be different from you ... my reason is because people take things for granted, and forget about being happy and the fact that we are all the same (JUST HUMAN BEINGS) under the same sun ... but i wanna say again thanx for that inspiration and ill take that with me on journey thru life GOD BLESS.

—Josh

i just want to say how humble i feel right now. when my gorgeous 19 year old was about a year and a half, i told his doctor, "he's into everything!" my doctor was a wise man who said, "trust me. you wouldn't want it any other way." sending you xoxxox and thanking you for the work you do and sharing with us. blessings to you and calvin and you family.

—kate

I was thrilled to see Calvin at the Botanical Gardens! He did seem tired, but I must tell you of a few moments of his happiness. Sadie (who ADORES Calvin) sat with him to take some photos and say hello. He was snuggling up with her, chewing on her hair, smelling her neck, and clearly enjoying it! She did too. As we walked away, she said, "I love the way you can always tell when Calvin is happy. He's the goofiest guy in my class, that's why he's the only boy I like." Im so sorry his happy day ended with a seizure, sucky.

—Elsa, Sadie's mom

Hope not to offend you if I tell you that from your blog I can feel all your suffering but there's also a kind of smooth beauty. I think it's the unending, unconditional, everlasting love for your son. Ciao.

—Federica

Oh Christy, I watched your video of one of of Calvin's seizures. It was beyond powerful—to watch your beautiful child endure this pain and confusion and then enter into a place of unfathomable quiet. I know I understand nothing in the grand scheme of things, but this was a window into some tiny understanding of some small piece of your life and Calvin's. Thank you for sharing it.

—Mary

I’ve got to quit reading these at work people are wondering why I’m tearing up.

—Greg

I often times try to imagine if I could live a life similar to yours ... and just that thought alone will travel with me throughout my day, my week, etc. The thought is constantly with me ... when I read about Calvin I feel like I know him and understand him ... honestly, I wish that you lived closer so I could come and play with Calvin and get to know him.

—Briana

I'm listening. Sometimes I cry when I read. I have nothing else to offer.

—Julia

ecosphere of kindness

And I don't accept subtractive models of love, only additive ones. And I believe that in the same way that we need species diversity to ensure that the planet can go on, so we need this diversity of affection and diversity of family in order to strengthen the ecosphere of kindness.

—Andrew Solomon, author of Far From the Tree

I was reminded of this quote yesterday when I heard of—and celebrated—the defeat of the Defense of Marriage Act. I thought of all the families raising disabled children, thought of single parent families, biracial families, of committed lesbian and gay couples who have had children of their own and who have adopted children and have given them a safe and loving home and an optimistic future.

It wasn't that long ago that people with epilepsy could not legally marry, that white people couldn't marry black people. As a result, these couples did not enjoy the same benefits that married folk did—something that the people of a free and just society should never be proud of. So I, too, celebrate this additive model of love. No doubt it's what helps make the world go round.

photo by Michael Kolster

out-laws

My out-laws are in town. They’ve wined us and dined us, chopped salad, skinned salmon, set up, cleaned up, watched me amp up, cool off and melt down. They’ve walked the dog and bought me flowers and ice cream and a haddock sandwich with fries. They've hugged us, kissed us, made us crazy while we made them crazy, humored my skepticism, perfectionism and political passions and painfully witnessed Calvin have a very long, shitty seizure.

Though the two of them are quite different from the two of us—like apples and avocados—we do have some common ground and I feel very fortunate to have them in my life. When my dad died, not long after my Pa stepped in. As my beloved mother fades away by degrees my Ma stands in. They love Calvin for who he is and they support us in all we do, even if they might not always agree or understand.

Here’s to you, Ma and Pa. I love you to the ends of the earth. And don't forget, Pa, it's all relative.

My out-laws with Calvin a few days before his epilepsy diagnosis, 2006