Considering Sam

special needs, courage and big big love

Month: April, 2013

The “In Lieu of Flowers” Post

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.

Samuel Reed Ranney 12/18/02 – 4/27/13

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.

Short and Sweet

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.

Sam by the Sea


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.

When Sustenance Is Not the Goal

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?”


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


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.

Sleepy Sam

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.