"When I think of all the worry that people seem to find, and how they're in a hurry to complicate their minds by chasing after money and dreams that can't come true, I'm glad that we are different, we've better things to do. Let others plan their futures, I'm busy loving you." ~ Live for Today by The Grass Roots
I've spent the past couple of weeks wrapped in a blanket of
loneliness I didn't know how to shrug off.
One of the things that nobody tells you about having a terminally
ill spouse is that the loneliness you expect to come much later comes as
quickly as the disease advances.
Trevor has always been my anchor. In my occasional inner tumult and chaos his love and
patience and kindness and acceptance are the constant--even at times when I
refuse in my own stubbornness to see them.
Trevor has always been my balance. When my yin swings far one way his yang
is there to draw me back. When I float to one pole he floats to the other and
somehow the scales always tip to a healthy equilibrium in our family.
Trevor has always been my best friend, the one person on this planet of 6
billion people who really sees and knows me. He can walk into any restaurant
and order something he intrinsically knows I'll like. He'll scribble notes
throughout the pages of the novel I'm reading just so he can see me smile
across the bed when I discover a love note jotted in at the end of a chapter as
I'm reading before bed. He keeps my secrets, soothes my insecurities and makes
me want to be a better person everyday.
Trevor has always been my sounding board. This past December his little sister
Hillary joined us on a road trip to California. She told us it was an inspiring
car ride because she loved just listening to the two of us talk about our
future, about our goals and about the steps we would take to reach them--topics
ranged from making friends with a couple we'd just met, to how we'd finish the
library in the house to finances. Trevor and I could talk for hours about the
way to approach any challenge or opportunity. We have always fed off of one
another's energies and ambitions.
Trevor has always been my sense of security. An accounting guru with a
financial-savvy brain I completely trusted our family finances to him. He
balanced all the bills, padded the accounts that needed padding and I didn't
keep track or care about any of it much because I always knew with a complete
firmness that the decisions he made were in the best interest of our family.
Then this January, in the space of a head-spinning week, all of
this went away. From the Monday when Trevor began to fall to the following
Sunday when he could no longer move even his arms or his fingers his
deterioration was so rapid that we were still trying to react to one
development even as advanced symptoms #3 and #4 and #8 and #15 began to hit us
like rapid fire.
Trevor's energies went into fighting to stay alive. This meant
that he was generally spent by the end of the day after doctors and tests. The
few words we exchanged each day consisted of "I love you." and those
syllables were all he could offer. At night when we'd lie beside one another
I'd try to ask him questions about bills or tell him a story about the kids.
Most of it was met with silence. He'd fall into that sick/tired/detached sort
of sleep that comes with illness before I could finish the sentences.
I've never felt so alone.
Ivie feeding her Daddy a yogurt
But I didn't have the option to feel alone.
I needed to hold things together for our kids who are
hurting as they desperately try to make sense of how our world is changing. I
needed to coordinate with family and friends who could be with Trevor to help
lift him and move him and take him to appointments since I was slated to start
a new job in the coming week. I needed to make sure he was okay with those that
would be there to help with the most intimate of needs.
A visit from a dear friend
And then there were the things that Trevor has always done--
I needed to go to work. I needed to get the oil changed in both
overdue cars. I needed to pay bills. I needed to check credit and bank
statements. I needed to go to the bank and try to add my name to all the
accounts that we'd never bothered to add it to. I needed to figure out where we
were at with our mortgage. I needed to try and figure out/change the passwords
to all the different online statements and bill pay systems that Trevor's brain
was too tired and too sick to remember.
And I couldn't do it.
My baby held my neck and screamed "Mommy! Mommy! Mommy!"
when I left for work each morning. At night when I put Ivie in bed she'd tell
me "I hate your job. It's not fair. I don't want you to leave." Words
and feelings that shatter a part of my mothering soul. Collectors began to call
about medical bills. Between the costs of childcare and regular bills and
medical bills I kept trying to make my new salary add up to it all and no
matter how many times I ran the numbers my projections were still red.
So I cut. I cancelled cable and gym memberships. I trimmed grocery
budgets. I canceled my hair appointment and handed a pair of scissors to my
little sister. I threatened everyone in my house to make sure they were turning
off lights and unplugging electronics.
But with medical bills climbing towards triple digit totals I knew
it wasn’t enough.
The amazing Hong Family bringing us a little bit of Hawaii
Worse than that, I knew it was all on me to somehow make it
Worse than that, I knew I couldn’t do it.
Worse than that was the feeling that without Trevor I could never
be enough again to care for our little family—for the two beautiful, precious,
small souls we have been entrusted with, for the life we have worked so hard to
Then little things began to happen.
Dear family friends sent us a substantial check as a “birthday
present” for Trevor.
In St. George two of my sweet friends launched a YouCaring page to
rally online donations for our medical bills. I watched amounts big and little pour in
from people I knew, people who chose to remain anonymous and people who said
things like “I don’t know you, but your story touched my heart” or “I’m the
friend of a friend…” or “as a fellow hiker, dad and friend of cancer patients,
I want to help you…”
The executive team from Vivint Solar—Trevor’s employer—stopped by
to tell us they wanted to run a fundraiser for our family. They created this
beautiful video designed to speak to Trevor’s colleagues, their vendors and
professional network. They have launched a LinderLove fundraising campaign, and
I see comments on the YouTube video that say things like “The Jersey shore is
pulling for you.” People I do not even know, that we may never meet are pulling
A kind and beautiful teller at Zion’s bank helped me open a
donation account, working with her regional managers to establish the kind of
account that would be secure and provide easy access to as I began to respond
to the medical bill collection departments that were calling and calling.
The bishop from our local congregation began to stop by with
anonymous white envelopes from other ward members, dollar bills and checks to
Others from far away sent cards with checks tucked inside of them.
I’ve always come from a pull-yourself-up-by-your-bootstraps
family.So has Trevor. We have been
overwhelmed by this outpouring of financial support.
I honestly don’t have words to explain what this incredible
outpouring of generosity that we never would have asked for, but so very
desperately need means to me.
It takes a lot for me to admit that right now, in this
circumstance, I cannot take care of my family.
I am not enough.
And it is so humbling to realize that even though I am not enough,
You, and the incredible financial, emotional and faith-filled
support you have offered and continue to offer my family make us enough.
I’ve been thinking about the difference between an individual and
a community over the past few days as you have all replaced the blanket of
loneliness I’d wrapped around myself with one of love.
Grief and fear in their own way become an additional illness.
But even swapping out the “i” in that word for a “we” changes
You have restored a sense of wellness to our souls. You have
brought love and hope and kindness.
And with your support we
will be able to do this hard thing.
Trevor likes old movies, loves the classics. If it's shot in black and white cinematography and boasts Jimmy Stewart in the cast you can bet that he has seen it.
His favorite is It's A Wonderful Life. We watch it every Christmas Eve without fail, and it is also, without fail, the one time each year I watch my generally very unemotional man cry.
The same scene always gets him. It's at the end of the film when George Bailey is in a financial crisis, facing prison time for fraud he didn't commit, and he finally stumbles home in complete and utter despair. And, of course, he opens the front door to salvation. The entire town has turned out to spot him the money his nemesis stole, saving him from ruin and the damning report of the bank auditor. George is overwhelmed and cries as everyone sings together in the final closing moments of the movie.
A few weeks ago before the increased seizures, before the steroids, before the wheelchair that now is a staple anytime Trevor needs to move, we were out running errands together. On our way home we decided to swing through the drive-in at one of our favorite local drink places. Trevor loves gourmet soda combinations. I love water. So, unsure of what to order I said, "just don't order me anything with coconut in it."
"Don't like coconut, what are you, brainless?" comes his reply.
"You always quote that movie," I roll my eyes at him, "Seriously, you must have every line memorized."
"I love that movie." he responds, "I think that movie captures everything about life. Everything I want to be."
"What do you mean?"
"I want to be the kind of friend George Bailey was."
I put my hand on his leg and say, "Oh sweetie, you are the kind of friend George Bailey was."
"No." he answers thoughtfully, "at the end of the movie his entire house was full of people whose lives he mattered in. The whole town was there. I still have more work to do to impact that many people in a positive way."
Then the drinks are ordered, the conversation turns, we drive home and the details of the day fade into the days that come after. But I remember this conversation.
"Trevor doesn't really want to have a party." I explain to my stepmother on the other end of the phone line, "He's getting more and more weak. We don't know what is happening with this mobility. He says he doesn't want to be the center of attention, but maybe we could do something with family."
"I think people are going to come either way. You should do something. Maybe an openhouse..."
Ten days before his birthday the messages began to trickle in from friends, "Let's all go to dinner...," "Is Trevor up to catch a movie..." The momentum built and the trickle became an all out flood. "Can we fly in that weekend for Trevor's birthday?" "Let's all go grab Thai food..." "We can't make it out but we want to send a package..." I sat down with Trevor and with my mother-in-law and said, I think it is important that we do something. I know it will be a busy day, but people love you. People need to see you.
I couldn't fathom the details on my own. My focus feels fractured and split in a million different directions these days, and so I did something I seldom ever do with a party (and if you know me at all you know how much I love the details of parties) I delegated. My mother and Josh's mother and my grandparents took over the food arrangements, my dad, stepmother and siblings decorated. My sister-in-law put together a stunning and delightful range of rotating "Trevor pictures" that rolled across the screens in the house all day. My sister threw together a lovely digital invitation. My in-laws and friends cleaned and vacuumed and organized. There are probably a thousand other things I don't know about, little and big efforts that made the entire thing come together on such short notice. Whatever people did, it was perfect and we were ready for people to come.
And come they did. It's difficult to find the words to describe the love that began to fill our home promptly at noon and stretched on through the night. Uncles and aunts and cousins made hours-long drives from far parts of Idaho, friends we haven't seen in years flew in from Seattle to surprise us. Others made billion-hour drives from Seattle. Neighbors came from up and down the street. A fleet of friends from our Southern Utah circle made the long drive to the northern half of the state, many returning on the very same drive that night. Friends Trevor hadn't seen since high school appeared on our doorstep like magic. Trevor's old boss from Overactdev and his current colleagues from Vivint Solar came. Grandparents and more cousins came...my darling Uncle Kevin brought the sweet woman he has begun dating and introduced her to much of the family for the first time. Little girls wandered in and out of Ivie's room in princess dresses. A once-stranger, now amazing, dear friend, videographer interviewed all the attendees in the privacy of a back room, compiling a documentary of sorts about the amazing man we had all gathered to celebrate. I still cannot entirely comprehend the light and love that flowed around our home that day.
And always there was our amazing family, my angel mother scurrying around managing food and helping people find their way to chairs or bathrooms or kleenex boxes. My darling grandmother with a gorgeous made-from-scratch-the-way-only-grandmas-can German chocolate cake. My dad and step-mother and siblings running point on my two littles making sure their tummies were full and their mischievous selves contained. Trevor's family visiting, crying, cleaning.
I'd requested that guests bring written or printed memories about Trevor in lieu of gifts, and their gorgeous words filled an entire binder. A dear friend sent one more letter to include in the compilation on Sunday, and she so perfectly summed up the day: Dear Trevor, On Sunday after your party, I asked you who came that surprised you. You listed a few names and teared up a little and then you started to list everyone before you were too overcome to speak. I also noticed that you teared up when we walked in the door Saturday. And I have to say that I was a little surprised by your reaction. There are these little things people have and they are called 'hidden talents". And I have decided that your talent is hidden from even you. Why did we drive several hours to your birthday party? Well because you and Chelsi are our best friend. Why did Michelle come all the way from St George? Because you and Chelsi are her best friend. Why did Jerry drive all that way? Because you are his best friend. Why did Jeremy and Chelsea fly here? Because your their best friend.Why did people come from Seattle? Because you are their best friend. Why did Justin come? Sure he's your brother but he also is your best friend. Why is Hillary living with you and helping out every way she can? Because you are her best friend. Why does Stacie hang around and have a hard time leaving? Well that would be because you are her best friend and a brother too. Why are your parents here? Sure, they are your parents, but you are much much more, your their best friend. Why are there some really sad people out there, who couldn't come to your party because of previous commitments? Because you are their best friend.
It took me a while to realize that we really weren't your ONLY best friends, but I came to realize that you and Chelsi love like God loves, like a parent loves. There are no favorites, there is enough love to treat everyone in your life like they are your best friend. You my dear friend have turned friendship in to something more than just friendship. . . you my friend have turned friendship into an art form. And that is your hidden talent (apparently hidden from even you) that you have turned friendship into an art form and have made everyone around you feel as if you are their best friend. It is an inspiring talent. We really do love you (and I we really do believe that you guys are our best friends!!!) Sarah and Casey Shurtliff
Not many people in this life get to see their "George Bailey" moment.
Even more people, perhaps, do not understand the impact they have on friends, on family, on a community that stretches down the street and around the globe.
But for those that do have the opportunity to see it--even if that opportunity comes through tears--it is an incredible, humbling, confirming, sustaining, reverberating thing that cannot be contained in pictures or in words--only in hearts.
It is my hope that is where January 31, 2015 will always be for the many who filled our home that day...for those who skyped into the party from far away or those stopped by in the days immediately after.
I know it is where it is for Trevor and for me, it is a part of our narrative that beats with love within our chests and flows with light through every fiber of our beings.