Considering Sam

special needs, courage and big big love

Month: February, 2013


Jackson and Clara take lunch to school every day so I try to have healthy and convenient items on hand for them to pack. I make granola bars, smoothies and muffins in batches to store in the freezer. I don’t enjoy making this stuff but I derive enough pleasure knowing my kids are getting nutritious foods without all that wasteful packaging that the task is worth it. The other day, after I finished baking a few dozen muffins I felt so satisfied as I thought, “This batch could take me well into April.”

It was a fleeting moment of happiness knowing that the freezer was stocked, that I wouldn’t be faced with muffin baking again for a few months. Because my next thought was this: I wonder if Sam will still be here in April. Which of these pumpkin muffins cooling on the rack might outlast my boy? It didn’t seem right that a baked good should be around after Sam was gone. I hated those muffins for their good fortune.

This is the new reality I guess. The highs and lows. The happiness and grief. All living side-by-side, taking turns in the spotlight.

Compartmentalization. That’s the term a Unitarian Universalist minister used when he described how he was able to leave the bedside of a man dying of cancer in the hospital and walk out to the parking lot only to be horrified to discover that he had spilled coffee on his khaki pants. How could he possibly be concerned with something so trivial when there was someone dealing with much bigger issues inside? But to live with the grief constantly would be impossible. If we had to hold all the horrors of the world with us on a conscious level at all times we’d go mad. We can inhabit only a small fraction of the realities that exist at any given time.

We’ve talked to Jackson and Clara about this, explaining that even when their brother starts getting sicker there will be times they feel like laughing with their friends. And that it’s okay.

I have to remind myself of this too.

Sometimes living between the two extremes gets uncomfortable. Like when I write a new blog post here and inhabit that moment of sadness and tears, until I publish it. Then I get in my car to go to the store. Maybe I listen to an episode of “This American Life” that helps me shift into a better mood. Then you and I run into each other at the store and you’ve just read my post. When you see me you’re reminded of it and you go into that space in your head. But I’m in the space of should I buy of six-pack of Sierra Nevada or just go for the full case because, who am I trying to fool, David and I will drink all twelve eventually. And you mention my recent post, and I’m glad because it makes me feel less alone in this whole thing, but now I feel a bit guilty for feeling happy that the beer was on sale. How can I be happy when my son is going to die soon? And when you eye the case of beer in my hands I worry it looks like I’m going to drown my sorrows in alcohol. That’s what I would be thinking if I was in your place. Not judging. No, definitely not judging.


Yesterday David and I got a call from Sam’s nephrologist. The most recent labs indicate his kidney function is still rapidly declining, enough that she has ordered restrictions on his fluid intake. We had hope that after the last set of labs things would have slowed down. But no.

David was in the middle of work and I was dealing with my own hectic day. So after we hung up with the doctor I drew a square in the air with my hands. “I’m putting it all in there right now. Because I need to be able to function out here.”

And that’s my sad compartment for Sam. I open it when I’m writing or when talking with David or when Clara asks if we can bury Sam in our backyard so he’ll always be close. I don’t think she has a compartment. Or if she does it’s always open. Jackson’s, on the other hand, is like one of those wooden puzzle boxes. Only a specific set of movements in a particular order can unlock it. So very tricky.


The bass booms from the living room stereo and Sam’s leg thumps along. His long, thin body is stretched tummy down across the foam pad we keep on the floor. His white-socked foot hangs off over the hardwood. The drum beats. Sam’s foot taps. I could never pick out a rhythm until Sam came along.

His head, topped with fuzzy, dark blonde hair, is turned to the side and he chews on his knuckles. Pink and slobbery and calloused from the gnawing they endure day in and day out. The rest of his skin is alabaster and baby soft having not been subjected to the kind of rough and tumble of a typical 10-year-old’s play.

Blue eyed and dark-lashed, he stares at nothing because nothing is what he sees. Instead he listens intently. It’s the kind of focus that stops his breathing momentarily. A harmless quirk.

I sit down next to him and tap out the beat gently on his back. His foot stops.

“Boom, ba-boom. Boom, ba-boom.” I say in unison with the music.

He lets out a string of vowels. Nothing that’s discernible but the tone is happy. Delighted. It’s a favorite game.

He pushes up onto his knees, a frog-legs splay, elbows on the pad and slaps his hand against his mouth while yelling with glee. Spit flies onto my arm.

“Ewww!” I say drawing the word out long and loud.

His eyes disappear into lines as a smile takes over his face – teeth, gums and drool. He laughs a laugh that shakes his whole body, drops him from his knees, flat on the pad. He throws his hand out to the side searching for mine. I take it – wet, soft, callused and Sam.



This is what we did the other night. All of us on Sam’s memory foam pad on the floor just channeling love to Sam. Sweet isn’t it? Would it still be as sweet if I told you that Jackson only agreed to join us after I offered him extra computer time? And that right after this photo Clara decided Sam was too “drooly” for her liking and left? But Jackson did stay for a long time with his arm around Sam talking sweetly to him. And Clara was very enthusiastic and loving for the first several minutes. Funny how something so grave can be going on with their brother, yet they can switch gears so quickly from honoring the moment to being just typical kids. I think I appreciate this.

Before the After

How do you tell your kids that their brother is going to die?

First you choose a day: Tuesday when they’re both home from school with a mild stomach bug
A time: after lunch
A location: this one chooses itself since the weather is giving you a 72 degree break after days of snow and freezing rain: back porch

Your husband and daughter lounge on the outdoor couch, you sit
across from them on a chaise and your son sits nearby at the table.

You engage in some light conversation and witty banter because you can’t help it; the day is so beautiful and you’ve been so cold that you want to cherish a little bit of this gift. Your son wants to know when you’re going to buy him the new Wii U. “Probably never,” you tell him. “Fine,” he smiles, “I have enough money from Christmas so I’ll buy it myself. And when I do I won’t let you play with it.” “Ok, good luck playing it without the TV that your father and I bought… or the electricity we pay for,” you say looking at him out of the corner of your eye to catch his attempt to suppress a chuckle. His sense of humor is superb and you love being able to make him laugh.

You glance at your husband and with a raise of your eyebrows you silently ask, “Now? Are we really going to do this now?”

You look at your beautiful children so unburdened, so carefree. Before, you think. As soon as you tell them this will all be before. The bright sun, the dog lying in the patch of light on the floor, the warmth on your winter white skin. And you think about the after. You picture the sun disappearing behind grey clouds, the dark taking over and the chill setting in. You don’t want to leave the now, the before.

Your daughter sighs and out of the blue says she wishes the brother, who is at school, was there because it’s so beautiful and he would enjoy being out on the porch. You feel something sharp in your chest and you wonder how you will ever get through this.

“I can’t” you mouth to your husband. And so he does. He starts by telling them that their brother is very sick, that his kidneys have stopped working and before you can get any words out, the words you’d rehearsed in your head, your daughter asks, “So what’s going to happen to him?”

You told yourself you weren’t going to lie. You want to be clear, keep it simple, stay away from euphemisms that may confuse your young daughter. But you’re not ready to say the words yet. You need more time with simply speaking about the subject out loud to your children, making sure your voice can hold the weight of what you’re about to say.

There is so much expectation in her eyes. She still thinks you can make it all better.

“He’s going to die, Sweet Pea.”

And that’s when the tears start. Yours, hers, your husband’s. But not your son’s. He sits in silence. The one you worried most about – who spent 10 years as the protective older sibling, explained matter-of-factly all of his brother’s many quirks to his inquisitive friends, watched the countless resuscitations, endured the hospitalizations and benign neglect, delighted in some of the normal sibling interactions like play wrestling, and never, not once said a single bad thing about his brother – doesn’t say a word. Doesn’t shed a tear.

But your daughter, who is now in your lap because, really what were you thinking breaking this news with your children sitting so far away, she is sobbing and pinching her leg, saying in a whisper you can barely hear, “Please let this be a dream.” Over and over again she says this while the sun still shines and the warm air still rests on your skin. You realize that the dark you feared has settled only over your son, who still sits alone staring off at nothing, because, at nearly 13, he doesn’t do hugs. You motion to your husband to go sit near him while you comfort your daughter who has pinched an angry red spot onto her leg and repeats, “Please let this be a dream.”

You place your hand over her tiny one and gently remove it from her leg, “It’s not a dream baby girl.” And your son pushes the patio chair away from the table with a loud scrape and disappears into the house.

And it’s after the before.