Considering Sam

When I first met him, I knew in a moment I would have to spend the next few days re-arranging my mind so there’d be room for him to stay.

This quote is from a Story People print that I bought years ago to put in Sam’s room. I found one for Clara and Jackson too. Each unique. Each an expression of my relationship with and feelings about that child. Sam’s spoke to me because the day he was born I knew there was something different, something unexpected about him. And as the mystery of his disorder unfolded I had to find a new way to relate to mothering a child who was unlike any other I’d ever met.

Today I saw this print as I entered Sam’s room to finally sort through his stuff, untouched since his death. I picked it up, read it and cried. Of course I cried. It’s touching and emotional and Sam is gone. I knew there’d be tears before I started the job. And this print with the lovely quote was absolutely the right thing to cry over. I placed the colorful picture on his bed near where the box of his ashes still sat. Oh god. His ashes. Ashes we opened to separate into a smaller container to take with us to California and scatter in the Pacific. Which we didn’t do. Because as I poured the fine gray sand, hours before we left for the airport, I discovered the larger bits of hard white.

Bone. My baby’s bones. And I balked. I didn’t know it would feel so wrong to separate Sam. And the idea of tossing his ashes into the ocean went against my desire to hold on to him. To have him stay. So of course seeing his ashes reminded me of all this and made me cry more. It was to be expected.

But then I moved on to something benign. His box of old medications sat beside his bed and, with trash bag in hand, I picked them up one by one to throw away. The vials of epo for his red blood cell count, the anti-nausea meds, prevacid for reflux. And by the time I got to the drops for his nosebleeds the tears were rolling down my cheeks again. It wasn’t just tears though. It was all out uncontrollable sobbing. Over medication.

This continued on. Each item I touched, picked up or even just looked at brought on a new set of tears. His room had become an emotional minefield. Months of pushing down memories and emotions had not weakened their power. When I walked out to get a glass of water or put something away, I could pull myself together. And I’d think the crying was over. But as soon as I’d step back into his room I’d spot something and start right back up again. I tested it a few times, the magical doorway. On the outside all was okay. Step through… emotional wet mess.

So many reminders of the loss: the stuffed monkey that sings “Dynamite” when you press its paw and always got a smile from Sam; his eyeglasses that perhaps never helped but looked so adorable on; the blanket he was lying on when he died; his diapers; the lip balm we applied to his lips when they began to crack and bleed in the final days; his shirts hanging in the closet, the ones he looked so handsome in; the pants on the top shelf – hand-me-downs from Jackson waiting for Sam to grow into them; and the bed. The hulking, mechanized, $7000 bed I fought the insurance company so hard for. The bed Sam died in. We have no use for it anymore. And I have to let it go. It’s a bulky reminder of the sadness and the hard-fought battles. It’s not Sam.

So this is my update and I hope it offers some explanation why this blog and Sam’s memorial website have been completely quiet. When everything is a trigger it’s easiest just to stay away, push thoughts and memories from my mind. But today I spent time in Sam’s room sorting, touching, remembering, discarding and crying. I re-arranged things, not to clear him out, but to make room for him to stay.

I want to write a bit about Sam’s last night and morning with us. I don’t want to forget the details of those moments. I need to put down in words how difficult things were, how death is not always pretty. There’s trembling and raspy breath and blood and shit and vomit. And constant care and attention to try, however futilely, to provide some comfort. I want to make sure to tell of the relief I felt when Sam seemed to relax and fall into a deep sleep. The struggle and the peace. It was after midnight but I didn’t know we were facing the last twelve hours we’d have with him. I just knew that I could finally turn off his light and lay my head down on the pillow in the bed next to his. His rhythmic breathing comforted me. The same feeling you get when the colicky infant in your arms finally settles. Peace and well-being at last. And just like with an infant I wanted to hold Sam, move him to my bed, cradle him against me. The ache for his little body was so strong. But I knew moving him might start up his vomiting again. So I just listened, until I began drifting off. The house was so quiet. The room so dark. His breath sounds so salient. And I need to remember the feeling of panic when I realized his breathing had stopped. Caught between holding on and letting go. But it was only his typical apnea he’s had his entire life, something that shouldn’t have startled me awake. But I can’t forget this, how tuned in I was to any sign of a problem. This is important because the next day, when Clara and Jackson were awake and life was busy again, I had to step away from Sam for moments. So it is critical to my memory that I did spend time so connected with my baby boy the night before he died.

There’s another moment I must describe and that was only hours before his death when I stood next to his bed stroking his hair and talking to him. He looked so handsome. He was on his back, asleep, with his head turned toward me. We had given him a sponge bath after he’d vomited repeatedly that morning. His hair, parted, lay neatly down to either side. His skin was smooth and porcelain. Beautiful boy. As I stood with him I described to him what I could see out his window. The new spring grass, the green leaves swaying in the breeze, the glimpse of blue sky through the trees. His window was open so we could both enjoy the bird songs. It was a gorgeous morning. “Just like the day you were born Sam Sam,” I said to him. And then I leaned down, pressed my lips to his forehead – warm and smelling of baby shampoo – and told him this:

“I love you I love you I love you I love you…. It’s okay for you to go… I love you.”

These things need to be remembered because when Sam chose his moment to leave us I had gone upstairs to get dressed and David had stepped away for mere minutes to help the other kids get lunch. And Sam was alone. But those moments before matter. And all the moments that make up Sam’s life matter. He left this world filled up with so much love. And that’s what matters.

For those of you wishing to send flowers or other gifts to express your condolences we ask instead that you consider making a donation to Horizons Residential Care Center, a place that provided enriching activities and endless love to Sam. It was Sam’s home away from home for the past three and a half years.

There’s also some research on brain malformations and Joubert Syndrome going on at the University of Washington We’ve been keeping up to date on some of the projects and have worked with them in the past.

And thank you to all who have written with kind words, love and support.

This is one time I am without words. We love you Sam Sam, completely and forever.

Changes. That’s how the hospice nurse yesterday referred to Sam’s steep decline. He’s vomiting more. His tremors lasted throughout an entire day. He’s running a fever. There’s blood in his urine. His lungs sound junky. He hasn’t been awake in over thirty-six hours. His heart rate has increased. His breathing is shallow. He doesn’t even have the strength to hold my hand anymore.

Changes is not a devastating enough word.

Sam had a pretty good day today. Yesterday was not a good day. I wish I knew what caused the difference so I could make all of his days good ones. We had music on for him all day today and when a favorite song came on he sat up and slapped his hand to the beat.

But all that activity tuckered him out.

I’m really going to miss this boy.

I was going to write a lighthearted post about burping because Sam has had a lot of air in his belly lately and I’m not sure why but he’s always hated burping. Like seriously hated it. He’d be eating, swallowing tons of air in the process, and the bubbles could be heard sloshing around in his stomach. They’d rise up and he would tense and resist letting them go. Then he would either refuse to eat any more or continue but puke. And the daughter of a friend of mine, one day at a playgroup years ago, saw Sam struggling and decided she needed to invent a burping machine called the Burpinator, which she did out of sticks and rocks. But it wasn’t real of course. This was before he had his g-tube which, we were delighted to find out, doubles as a burping machine. So every hour when I vent all the air in Sam’s belly through his tube I think of my friend’s daughter and the Burpinator.

But that’s not what this post is about. Had it been I would have drawn it out longer and made it more entertaining. I don’t know why. A blog about a child dying doesn’t have to be entertaining. Sometimes I guess I just get tired of the heaviness.

Like today.

Sam’s having a rough day. I don’t actually know for sure because he can’t tell me. Something’s different though. He’s not just sleeping peacefully or lying quietly enjoying the music or the sounds of the house. His sleep today is fitful and he calls out a lot. And he shakes. It’s a kind of shaking, a trembling, that impels me to lay my arms over him to what? Calm him? Comfort him? Myself? Try to suppress this outward sign of progressing illness?

I remember when Sam was little and we’d take him to a new doctor who would point out all the various ways Sam’s body was not functioning properly. These things didn’t need to be pointed out; we were aware of all the ways Sam was different than a typical child. But the doctor had to make the assessment and ensure we were all on the same page. None of the information was new but I’d walk out of those appointments feeling so down, like “wow, my kid is really messed up.” A new yet familiar gloom hanging over the future.

But nothing had changed. We had accepted and learned to live with all of Sam’s dysfunctions or, as I prefer, quirks. So why the renewed sense of despair?

Because we adapt. Even to difficult realities we can adapt. We accept the new situation eventually and can move on with our daily life. The heaviness is still there but we get used to carrying it, like an emotional muscle that gets stronger the more we take on and it’s easy to forget it’s there until somebody points it out.

And what I’ve noticed today is that I’m becoming accustomed to Sam’s nausea and increased sleepiness. They don’t sink me so far down as when they first appeared. But something else was added today, the agitation and increased trembling. And this is how it’s going to be as Sam gets sicker: there will be new symptoms showing up, forcing us daily to confront the inevitable.

We went to the beach the other day. The whole family. We packed up Sam, his feeding pump, formula, medications, diapers, extra clothes, absorbent pads just in case he vomited and a bathing suit on the off chance that he’d be awake to enjoy the water. But he wasn’t. He slept the entire time we were there. We weren’t really sure how we were going to get him into the water anyway because he’s so heavy and unwieldy. We did bring a life vest just in case. That’s a lesson we learned when we took him to Hawaii when he was two. He loved the waves. Just laughed and laughed. But one particular wave, an especially big one, almost swept him right from David’s arms. Since then we’ve been more cautious.

He slept so peacefully in the jog stroller, underneath the umbrella with the sound of the breaking waves. Still, I wanted him to experience the beach. Really experience it – toes in the sand, wind in his hair, cool water crashing against his legs. Weird to think it was probably his last time.

With Sam asleep everyone else was able to enjoy the outing. He wasn’t yelling so loudly, or thrashing about, or hitting himself like he used to do so often. So in some ways it’s gotten easier to be out with him now that he sleeps so much. But emotionally it’s so much harder.

One side effect of kidney failure that Sam is experiencing is vomiting. There are medications to control this but it took us several days to figure out the right ones. This is where hospice rocks. Really. All I had to do was send an email to the hospice nurse telling her Sam just threw up his entire lunch even after we gave him an anti-nausea med and within hours she had contacted his doctor and called in a new medication. So now we have Sam on a twice a day anti-nausea medicine with another on hand to give as needed. This has helped significantly.

In those few days when Sam’s nausea was not under control there was a conversation. The conversation happened between me and the hospice nurse and included bits from a conversation she’d had with Sam’s nephrologist. It happened in the family room. Jackson and Clara occupied themselves upstairs. David worked in his office. My mom sat on the couch nearby. And the nurse, in her pink scrubs, stood opposite me near Sam in his wheelchair.

“I spoke with the doctor and she said if we can’t get the nausea under control with medication then it would be okay to reduce the amount of formula he gets,” said the nurse who is as sweet and gentle as they come.

“That makes sense,” I said. But because the amount of formula and water Sam receives daily has been carefully calculated to minimize the stress on his kidneys while still making sure he stays hydrated and nourished, I was compelled to ask “but is there a specific number of ounces we can cut out before running into problems?”

Silence.

“Well, no,” the nurse finally said, “you can just play with the amount until you see what works.”

Oh.

The logical part of me knew where this talk was going. But we were standing in my family room with the dog lying in her bed nearby, music on the stereo and photos all around of my three children, as babies and toddlers, lining the mantel and hanging on the wall. There was the black and white one of Sam as an infant when life with him was still scary and new. Next to it a close-up of chubby faced, smiling Sam. I could see Clara and Jackson’s artwork on display in frames or taped haphazardly to the bookshelf. And on the floor a toy chick Sam got for Easter; it chirped when it sat in his hand. This was a home where children are nurtured and loved and fed. And so I stubbornly refused to give in too soon to the logic. But she went on.

“As the body’s organs start to….” she paused, hesitated.

“…shut down,” my mom finished from the couch.

“Yes, shut down. Sometimes a person just doesn’t get as hungry. And you may find that Sam doesn’t need to eat at all.”

Even as she spoke the words, words I hated, I felt so much compassion for her. It was hard for her to say. It was no secret Sam was dying but to speak out loud about it in this way, a way that prescribed speeding up the process, felt disloyal. Faithless.

I didn’t respond. Or maybe I did. If so then I said, “There is no way I can stop feeding him.” Because that’s what I was thinking. Maybe it’s more appropriate to say I was feeling those words. So deeply.

Much of Sam’s life we have struggled to feed him.

When he was a newborn the goal was weight gain. The doctors’ solution was to insert a feeding tube through his nose, or into his stomach. We resisted and instead I’d spend hours hooked up to a breast pump and David hours feeding Sam milk through a bottle, both of us lying to the hospital staff about the length of time it took Sam to finish. In their estimation if he took too long he would expend too many calories and not gain weight fast enough. We just wanted to cradle him in our arms and give him the pleasure of suckling and tasting.

Despite our subversion he gained weight and we continued this struggle at home until at 7 months old we thought Sam was ready to try pureed food. He never learned to chew so for years we ground up the same foods we served his brother and spoon fed him. Peanut butter and jelly sandwiches, lentil soup, cake and ice cream. Mint chip was his favorite.

At 2, Sam learned to hold his own bottle and we celebrated even when he delighted in chucking the empty bottle across the room.

And when he went through a two-week period where he chewed up his lips and tongue so badly he couldn’t drink from a bottle, David and I fed him around the clock with a medicine dropper, like a baby bird.

Sam has a g-tube now, a permanent port that goes directly into his stomach. It got to a point where nobody but David and I could feed Sam, and with him in school full-time, he began losing weight.

Feeding Sam has been a battle. A worthwhile battle we have ardently fought. Parents feed their children. We don’t stop. But Sam gets nauseated easily. He sleeps more so he requires fewer calories. And his kidneys are shutting down. I understand this logic. And the reasoning resonates even more when, mid-feed, Sam starts gagging and I have to turn off the pump that delivers the formula to his belly. It’s the right thing to do.

But it feels like giving up.

We managed to get the entire family to the zoo on Saturday. It was a beautiful day and Sam slept the whole time. Sleeping is something he does a lot more of lately; it’s one of the effects of his kidneys shutting down. On the one hand he’s much easier to manage when he’s asleep. On the other hand, well, he’s not always awake when we want to spend time with him or take him to the zoo.

David’s kidneys are fine, by the way.