Considering Sam

special needs, courage and big big love

Hospice

Wednesday morning hospice came out to get everything started up for us. It was their first visit. By that afternoon we had a Hoyer lift, a feeding pump and IV pole. By Friday we had the rest of the supplies we needed and a visit from two CNAs to bathe Sam. All of Sam’s meds have been ordered. One in particular, Prevacid for reflux, we’ve been having a difficult time with since it’s a dissolvable tablet and frequently gets stuck in his g-tube. I mentioned this to the nurse and by the following afternoon she had tracked down a compounding pharmacy near us that could change the medication into a liquid form. And it was ready an hour later.

From my experience with healthcare agencies, medical supply companies and pharmacies the speed with which this has all come together is a freaking Christmas miracle. Anything we’ve asked for they’ve provided. There was one piece of equipment, a Tumble Forms feeder seat, they were having a hard time tracking down but instead of giving up they called Sam’s old school and asked to borrow one. Done. Wish granted. I’m pretty sure if we asked them for a pony we’d quickly regret it.

Now if only I’d had this kind of competent service when Sam was born then Jackson wouldn’t have learned all those cuss words.

Sam’s Day

This is how our day went today according to Sam:

samasleep

We’ll be starting up hospice tomorrow so hopefully things will be a bit more exciting. Again, thanks to all of you who helped out with that!

Rough Waters

There’s a parable (which I’m totally going to mangle because Google has failed me) about a seasoned fisherman, thirty years on the job let’s say, who everyday goes out on his boat bringing along motion sickness medication. One day someone asks how come he continues to work on the ocean if he’s prone to seasickness. “Oh no,” he replies, “I’ve never been sick on the boat a day in my life.” To which the other asks, “Then why do you always travel with the medicine?” And the sailor’s response? “Every sailor has his sea. I want to be prepared when I meet mine.”

The other day my job was to start up services with a hospice provider in our area. Sam’s nephrologist called with his newest lab results. She asked if I had contacted hospice yet. I wanted to laugh and say, “No. Of course not. Would you begin the process for the end? Or would you rather scrub the burnt egg pan? Or do two weeks worth of laundry? Or lose yourself in the carefully constructed happiness of your Facebook friends? Or anything other than start up an end-of-life service for your son?!” But I like Sam’s doctor. She’s very compassionate. So I held it all inside and told her I would contact hospice this week because she thinks it’s time. David and I know it is.

One of the symptoms of kidney failure is increased sleepiness. We talked about pulling Sam out of school once he could no longer enjoy all the experiences they offer him there. We’ve noticed that Sam has been sleeping more at home. He’s also been sleeping more at school. This, combined with test results indicating nearly intolerable levels of waste products in his bloodstream, has impelled us to want Sam home full time. Unfortunately he requires more than one person to take care of him. If his size and squirmy unwieldiness were not challenging enough to handle alone, then his precise feeding schedule, positioning needs and the variety of medicines he requires – one of which is an injection – can consume a person’s entire day. Thank goodness for home hospice.

Or so I thought.

I called a provider with pediatric services to ask if they came out to our town; they told me we’d have to bring our child to them for grief counseling. I explained that, no, I was not calling for a child experiencing the death of a loved one – not yet at least – but that I was calling for my son who was in kidney failure. Oh in that case, they informed me, our town was outside their geographical range. They gave me the number of a closer provider. I made the second hospice call and was put on hold for a few minutes. The director finally came on and apologized for keeping me, explaining she had a volunteer who was lost and needed to get to a client but couldn’t and it took time to look up the proper address and directions. “Pardon me,” I imagined myself interrupting, “but I don’t quite give a fuck.” I can appreciate that they were having problems. On any other day I would insist that the weight of each struggle is relative. But at that moment? At that moment my dying son trumped their lost volunteer.

Unfortunately, they too, were unable to travel to us. But they recommended another provider, which happened to be the first one I called. So I hung up. Then I cried. And I gave up. Because the thought of exhausting the list of agencies was too much. The possibility that we would be unable to have Sam spend his last days at home, unbearable. There’s no hope that Sam will get better; but there’s still hope that our family can spend his last days together peacefully. Losing that hope with more futile phone calls? Insufferable.

And it was this realization, as I sat there in front of my laptop with phone in hand, that it wasn’t the hot tears blurring my vision that prevented me from performing an internet search for yet another hospice agency; it was the hopelessness of the entire situation. Sam wasn’t going to get better. We weren’t going to be able to fight for something – a new doctor, medication, adaptive equipment – that would improve his quality of life. It’s no longer about holding on and riding out the storm of insurance rejections, bad advice and red tape; it’s about letting go.

I’ve never been good at letting things go. Challenges motivate me to act. And in the past there’s always been a certain high I feel when taking on a difficult situation and seeing it through to the end. But of all the difficult projects I’ve embarked upon for Sam, this is the first one that has me clobbered – gripping the rail and heaving. It’s time for help. So if you know of an agency that provides pediatric home hospice to Hillsborough I’d love to hear from you. And if such a place doesn’t exist, we’ll be looking to round up our own volunteers to come help us out. I’m heading out prepared this time.

Spaces

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.

Essence

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.

Love-in

IMG_1343

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.

The News

“And she tried to fancy what the flame of a candle looks like after the candle is blown out, for she could not remember ever having seen such a thing.”

Lewis Carroll Alice’s Adventures in Wonderland

 

I process things through writing and when Sam was born I also found that writing a blog allowed me to share all the news and developments about Sam with multiple friends and family members at once. Sam’s birth and early years were hard. What I’m about to share with you is harder. And it’s not something I always know how to talk about. But I know how to write about it.  So this is a new blog about Sam and the current situation we’re facing. With any luck I’ll update weekly.

Please understand that we will be sharing information with Jackson and Clara in a way that’s appropriate for their ages and ask that you refrain from discussing anything with them (or their friends) that you read on this blog.

 * * *

A little over three years ago we learned that Sam has a condition that causes cysts to form in his kidneys leading, eventually, to complete kidney failure and death. There’s no treatment. There’s nothing to do but just monitor and wait. Which we did with no clear idea of when his kidneys would become so compromised we’d be forced to think about dialysis (a very temporary fix) or transplant. That’s all you can do – artificially replace lost kidney function through a frequent and lengthy procedure or surgically implant a new kidney. There’s nothing as simple as popping a pill. Just two very involved options that can impact quality of life.

Oh, wait.

There’s one more option: do nothing at all. Let the disease run its course and let our little boy go.

David and I have struggled with this decision. And by struggle I mean lived in denial and created clever emotional escape techniques. Because neither one of us had any idea how to go about making such a decision. Because no parent should ever be faced with such a situation. Because it’s just not fucking fair.

A few months ago we got some lab results that showed Sam’s kidney function had deteriorated faster than expected. The pressure was on to make a decision. So we spent several evenings holed up in our bedroom, while the kids watched America’s Funniest Home Videos downstairs, discussing Sam’s future. We’d go round and round for hours, turning it into one big snot and tears fest. Some nights we’d set a time limit on our conversations – like speed dating but this was speed life decision making. It may not sound effective but it was much more manageable in small bits.

We came out of one of those conversations with the resolve to get Sam a new kidney. We knew it would be a difficult journey, especially with all of Sam’s other issues, but difficult is what David and I know how to do. We’ve stared difficult in the eye many times, spit in its face and kicked its ass to the curb. Brain surgery on baby Sam? No problem. Severe feeding issues? Handled it. Daily breath-holding spells that required resuscitation? Complete mastery. Self-injury so severe even the doctors were helpless? Got through that one. So a kidney transplant? Piece of cake.

Manageable for us perhaps, but what about for Sam? His life would get a little bit harder. He’d be more prone to dehydration which would mean more hospitalizations. There’d be more doctor visits and more blood draws. He’d also be required to be on medications for life that would suppress his immune system. And donated kidneys don’t last forever. We’d simply be delaying the inevitable.

We’ve always fought battles for Sam, against insurance companies, doctors and government agencies. Sam has fought hard along side us exceeding people’s expectations. One particular surgery he had required him to be on a ventilator and with all of Sam’s breathing problems resulting from neurological issues this was a scary thing. After the surgery the doctors were worried that he hadn’t made any attempt to breathe on his own. “Turn down the sedation,” I suggested, “and turn down the oxygen or up the CO2 or whatever it is you do. You need to give him something to fight for. But he will fight.” And he did within minutes.

Maybe Sam’s done fighting now. Ten years is a long time to endure all that he has. We’re not completely convinced that we’re done fighting but at the moment it seems the right course is acceptance. So this is where we stand, at the precipice of complete heartbreak, but full of courage and big big love.