I love Easter the same way other people love Christmas. Easter is all about hope and joy and light and so often the outside world reflects that as we turn our back on the long, dark months of winter. Both the plants and our souls are revitalized. This year, Easter was especially tender. Lately, we’ve become more aware of our own mortality and our absolute need for our Savior. As we celebrated Easter our hearts swelled with gratitude for the resurrection that Christ made possible and hope that we will see our loved ones beyond the grave.
This year, we did a little holy week book with the kids. We would read the scriptures or watch the associated Bible videos and the kids would color a picture. The kids looked forward to it every night. It really helped set the tone for Easter. We did our egg hunt on Saturday again this year. After finding all the eggs we went to the park to play with an Easter gift they’d received from my parents: a baking soda and vinegar powered rocket.
Sunday, we went to church. We listened to uplifting lessons about our risen Savior. The kids sang songs in the program. Ellen gave her first talk and talked about how because of Jesus she will see Grandma Glenna again. The rest of the day was spent listening to Easter hymns and eating delicious food. It was a good Easter and just the re-centering we needed.
Our last day in Zion, I added up our hiking mileage for the day and realized that the kids had hiked 6.6 miles. This realization of the kids’ capabilities and a new mantra to savor life (losing someone will do that to you) got our wheels turning. It was time for us to finally backpack Coyote Gulch. We’d read a blog post a few years ago about a family that took their 4 and 7-year-old and had felt inspired, but at the time our kids weren’t quite ready. Now that they could hike 6.6 miles in a day and not act like they were dying, they were ready. We planned the trip for over our Spring Break and set about being as practical as we could when you’re undertaking something so crazy. As our trip approached, the forecast was giving us a little bit of a scare and we decided to move our trip up by a day to hopefully avoid death by flash flood or paying to tow our car out of a mud pit. We were still a little nervous, but we just kept praying that if this was monumentally stupid idea we’d realize it. The trip started out with a drive through a blizzard (gotta love spring break). What should have been a 45 minute part of our drive ended up being a teeth clenching 90 minutes. We spent the night in Grand Junction and since we weren’t getting any horrible premonitions, woke up early the next morning and drove five hours to the Escalante Interagency Visitor’s Center to get our permit and poop bags (yes, poop bags). After that, we drove 36 miles on Hole in the Rock Road (a dirt road, this will be important later) to our starting spot: Chimney Rock.
Now, I should mention that the blog post that initially inspired us, also introduced to a “shortcut” that would shave off a few miles. The shortcut involved starting from Chimney Rock, navigating to Hurricane Wash, “dropping” into it, and arriving at the confluence. This would involve orienteering (reading topo maps and using a compass), but Noel is a former Scout Master so that wasn’t a worry. It all sounded easy enough. Well, lets just say it wasn’t as direct as we’d hoped. We spent a lot of time zig-zagging around hoodoos to get to our waypoints and when we arrived at the ravine that was supposed to “drop” us into the wash we had to reroute several times to avoid giant pot holes or perilously steep descents. Miraculously, everyone made it down without incident and after a few more miles, we arrived at a lovely alcove that we made our home for the next two days. According to my GPS watch, we did just over 5 miles. It probably would have been easier to hike a few extra miles, but it was an adventure.
The next day we left our heavy packs at camp to explore the gulch. We saw waterfalls, a natural bridge, and two natural arches. There was something new and beautiful around each corner. We ran into a couple of other groups, but for the most part were on our own. It was completely gorgeous and the kids had a lot of fun climbing and playing in the water. We spent one last night at our beautiful campsite – a sandy oasis where you could walk around barefoot. (Soapbox side note: Grand Staircase Escalante’s monument status is currently on the chopping block. Utah’s state legislature and congressional delegation are working hard to convince the Trump administration to have its area reduced by 70-80% to open up space for coal mining. If you live in Utah and don’t think places like this should be a strip mine, please contact your representatives to tell them not to be so short sighted. #standwithgrandstaircase)
It got really windy that night and both Noel and I kept having nightmares that the wind was actually pouring rain and that we were going to be trapped in the canyon for a few days. When we woke up, we were relived to find it actually hadn’t rained, but the clouds were looking ominous. We ate and packed quickly and then headed on our way. It began to rain lightly as we hiked and we urged the kids along, practically dragging them at some points. There was some crying that happened, but we figured a little crying was better than being stranded somewhere (or worse . . .) We’d thought climbing out of the ravine would be easier than getting into it, but it was just as convoluted and we had to be extra careful since everything was wet. They call it slick rock for a reason. Everyone was so relieved when we made it to the car.
The 36 mile drive out was both a little scary (for me) and a little fun (for Noel) as portions of the dirt road had turned into a mud bog. We were really glad we had the Subaru. (We were also really glad that the non-four-wheel-drive car that was full of single people trying to “float” across the muddy sections by driving across them at top speed did not rear-end us.) That night we camped in Escalante Petrified Forest State Park where we took showers and ate food that wasn’t freeze dried.
That night it snowed. All night. BUT, we were warm, snug, and dry in our tent. We all slept like the dead. In the morning we had a warm breakfast at the comfort of our covered picnic table and at around 9am it stopped snowing making it possible to pack everything up without getting drenched. We were staying in Grand Junction that night, but made stops at the Sunglow Motel in Bicknell (for unusual pies) and Capitol Reef (for a final red rock fix).
During the trip, we kept laughing about how if you just listed the facts of our trip it would probably sound like a really miserable time, but the truth was we were having a blast. Even though we were nervous about the weather, there was a part of us that didn’t want to leave Coyote Gulch. We just wanted to stay there forever exploring its beauty and being out of range of cell service. There’s a Scandinavian saying, “There’s no such thing as bad weather, only bad clothing.” I think it’s a great saying, perfect with just two additions: There’s no such thing as bad weather, only bad clothing, bad gear, and bad attitudes.
I have always loved the desert. One sits down on a desert sand dune, sees nothing, hears nothing. Yet through the silence something throbs, and gleams…”
– Antoine de Saint-Exupery, The Little Prince
Noel got three days of bereavement leave when his mom passed and we knew that we needed to use some of that time to decompress before heading back to regular life. Fortunately, Glenna’s funeral services were in close proximity to one of our favorite healing balms: red rock canyons. The day after her funeral, we crashed my brother’s singles ward (that will make you feel old) and then explored Kolob Canyon with my family. (You can see the edge of it from the Kanarraville cemetery where Glenna is buried.) The kids had a blast running around with their cousin, grandparents, and aunts and uncles. We climbed rocks, jumped over streams, and played in the sand. After our hike, we said goodbye to all of them and headed back to our hotel. That night it got really windy and icy. We were glad to be snug and warm at the Marriott.
The next day, after the roads had thawed a bit, we headed into Zion. It’s hard to explain, but there’s something about red sandstone that warms my soul. (I touch on it in the beginning of this post, but it’s only a toe-dip into my feelings on the subject.) As we hiked all over the park (Emerald Pools, Weeping Rock, and The Narrows), I felt myself recharging and coming back to life. (Side note: It’s been 9 1/2 years since our amazing and memorable trip through the Narrows. So much reminiscing. ♥). We finished the trip with delicious BBQ with Spencer (my brother) who is going to school at SUU in Cedar City and his fiancé Sarah. The next day we packed up our car (it was also Ellen’s birthday) and headed home. It was a short trip, but between the closure found at the funeral and the soul revitalization offered by wandering in the desert, we felt ready to face life again.
“I’ve come to understand that there’s a good deal of value in the ritual accompanying death. It’s hard to say good- bye and almost impossible to accomplish this alone and ritual is the railing we hold to, all of us together, that keeps us upright and connected until the worst is past.”
– William Kent Krueger, Ordinary Grace
I’ll admit my attitudes on the celebrations surrounding death used to be a bit callous. When I talked about my wishes for my own funeral, I’d tell Noel to just cremate me and sprinkle my ashes someplace people might actually want to visit. I absolutely did not want a viewing and any memorial services were to be kept to a minimum so as to not take up too much of anyone’s time. Over the years as Noel and I have lost grandparents and now a parent, my attitude has softened and I’ve developed a deep respect for the place of funerals in the grief process. I’ve participated in funerals before, but Glenna’s was the first funeral where I was intimately involved in the planning.
Glenna and Mike were a bit nomadic (Noel moved about 17 times as a kid) so it was a little difficult to determine where her final resting place should be. Most of her family is buried in Nevada (Alamo, Las Vegas, and Overton), but she was very opposed to being buried in any of those cemeteries because she felt they were too desolate. She’d lived in Alaska for the last eight years (a record only her childhood could beat), but if she were buried there it would be difficult and expensive to arrange, plus rare that anyone would visit. As we pondered locations that would be close enough for family (especially her sisters) to visit, but appeal to her desire to be buried in a beautiful, peaceful location Noel thought of New Harmony, Utah. New Harmony is a small town outside of Cedar City, UT. Noel was in grade school when he lived there, but he has fond memories of that time. When he suggested it to his mom, she liked the idea as well – it was a place she had been happy and was close enough to her sisters that they could visit now and again. Before she passed, she said she’d be fine with any of the cemeteries in the area. We ultimately decided on the cemetery in Kanarraville because we had a family connection there that was able to help with acquiring burial plots and reserving a church building for services.
We’d talked about doing a self-transport of Glenna’s body to save on costs, but also because we thought she would have gotten a kick out of us taking her on one last road trip. (One of her favorite movies was Elizabethtown where the main character goes on a soul searching road trip transporting his father’s ashes.) After we found out that transporting her body was cheaper than we expected and that a casket wouldn’t fit in Chris and Joy’s Subaru, we decided to just let the mortuaries handle it. (Although we did briefly reconsider when there was a bit of doubt about whether they could get Glenna’s body on a flight that would get her to Utah before the funeral.)
My brother, Spencer, is going to school in Cedar City and all of my family came down for the funeral. They watched the kids while Noel and I took care of funeral logistics and arrangements. We were able to help dress Glenna in her temple clothing which was a very touching and spiritual experience. Previously, I’d always thought it strange when people at viewings would remark about how good the body looked, but having seen Glenna before and right after her death I understood. I saw her a few hours after she passed and while her body had looked relaxed, it was very apparent that her body had only been a vessel and now that her spirit was gone she very much looked, for lack of a better word, hollow. It wasn’t necessarily upsetting, but there was something peaceful about seeing her after the mortician had done his work. She looked much more like a person at rest.
We tried to be as open with the kids as possible through the whole thing. They got to say their goodbyes to grandma a few days before she passed while she was still fairly coherent so she was able to tell them of her love. When she passed I told them it was okay to feel sad and Ellen said, “I’m not sad, I’m happy.” When I asked why she said, “Because she’s with Jesus and she’s going to be alive again.” I wanted Cooper and Ellen to be involved in the funeral, so they each shared a favorite memory. (Cooper’s was petting the cat with grandma and Ellen’s was giving her hugs.) The funeral director also involved the kids. He talked to them about how their grandma is going to be one of their Guardian Angels and gave them pins with angels on them. One to keep and a few to give to people that looked sad. (They’d each given away all of their extras by the end of the services.) He asked them to help “tuck grandma in” before they closed the lid of the coffin. I don’t think there was a dry eye in the room.
While there were a few hiccups before the funeral happened, the whole thing was as close to perfect as we could have asked for. The weather in March can sometimes be unpredictable, but the skies were clear for everyone’s travels. (Glenna was always a nervous wreck when people traveled, we think she pulled a few strings in heaven.) Everyone and everything came together to create a memorial that I think Glenna would have loved. Her bishop and his wife (one of her best friends) came down from Alaska to officiate and attend the funeral. My parents made “Be so Careful” pins (Glenna’s catchphrase) for people to wear and Joy put together a display that paid a lovely tribute to her mom. All of the children and grandchildren shared a few words and Noel played a beautiful rendition of “If You Could Hie to Kolob.” Glenna’s sisters and nieces said prayers and offered short remembrances. Danielle had arranged for a casket spray that looked like Alaskan wildflowers and we had picked out a casket that was reminiscent of a log cabin. At the cemetery, Noel’s cousin-in-law played bagpipes and we all caught glimpses of the beautiful Kolob canyon. Afterward, we had a lovely luncheon (largely orchestrated by Melody, a family friend, and members of the local LDS ward – people who had never even met us, but poured out their love anyway) at the church where we reminisced and repeatedly traded hugs. It was a tender time.
It’s been just over a month since her funeral and while it’s odd to say you have fond memories of such a sad event, I really do. It was so touching to be surrounded and strengthened by each other’s love. It was an honor to celebrate such a great lady. Overall, it was a beautiful day full of an overwhelming peace. It reminded me how valuable funerals and memorials are for the living.
Note on the gallery: all of the pictures, except for two, were taken by my talented mother.
It’s Autism awareness month and yesterday was world Autism awareness day. Usually I’d be lighting it up blue and doing my annual post on how the past year has gone raising a kid on the spectrum (See my posts from 2014, 2015, 2016), but lately I just haven’t been feeling super passionate about much of anything. Still, autism is near and dear to my heart.
And in case you wanted an update on Cooper, he’s doing awesome. We’ve phased out his private therapies and are seeing how he does with just the therapy he gets at school. Academically he’s mostly at grade level and even above in math. He’s universally adored by everyone that teaches or works with him. There are of course still things that are challenging (riding a bike, attending assemblies, catching sarcasm, etc), but his future is bright.
“Be kind because everyone you meet is fighting a hard battle.” – Ian MacLaren
In the days leading up to Glenna’s transfer to inpatient hospice our kitchen sink backed up. The threads on the clean out in the basement were stripped making it impossible to open it and clear the pipe. This of course meant a trip to the home improvement store to acquire fun things like a reciprocating saw blade that can cut through cast iron. (For the record, I suggested to Noel that we call someone just this one time, but with so many intractable things happening in our life I think Noel needed to tackle something fixable.) Noel went to the store and was greeted by one of the workers asking how he was. His mom was dying and he was responsible for making all the hard decisions, his house was full of relatives, and his kitchen sink was closed for business and overflowing with dirty dishes. Without even thinking, Noel honestly responded, “Terrible, and you?” and the worker enthusiastically replied, “Great! Thank you!” Noel then went to the plumbing section where he stared at pipes till he no longer felt like crying.
Small talk was one of the hardest things to navigate during the four months Glenna lived with us. Those questions I usually answered reflexively suddenly stopped me in my tracks. When you’ve spent the early morning hours trouble shooting an oxygen concentrator because your mother-in-law can’t breathe, you are not fine. Not even close. But do you burden other people with that, people that probably just wanted to exchange pleasantries and be on their way? I knew the “socially appropriate” thing to do was automatically respond, “Fine and you?” without a second thought, but it feels like lying and I’ve never been a very good liar. I decided to be honest, but avoid baring my soul and when someone asked “How are you” I’d reply with something simple like, “It’s been a rough morning.” It was a good way to test the waters. If someone really wanted to know how you were, they’d pause and give a response that let you know they were really listening, but if they were just performing a social ritual they’d reply, “Mondays, right?!?” and move right along their way. I will always be incredibly grateful for those people that listened. It didn’t have to be a long heart emptying conversation, that would be totally inappropriate with say, the dad with the mustache whose name I don’t know or the Lowe’s employee, just a simple, “I’m sorry” was enough to acknowledge the fact that we were real, hurting people. In an article by the head of the Islamic Studies Center at Duke, it says that in many Muslim cultures the equivalent of our “how are you” is “How is your heart doing at this very moment, at this breath?” I love the genuine sentiment of that question so much more than our trite small talk. As the author pointed out, asking, answering, and listening in that manner “help[s us] remember that [we] too [are] full and complete human being[s].”
There’s a tendency, I think, to want everyone to feel sad when we are sad. We want the whole world to stand still and cry with us when things aren’t going right. If we can’t be happy we don’t want anyone else to be. I’ve certainly felt that way, but I’m also learning that I don’t actually want that. There were times during Glenna’s stay with us that I just couldn’t hear any more bad news. When my pregnant sister had a scare where they thought there were genetic abnormalities with her baby I thought my heart might break. I just wanted something to go right for someone. The same day the sink was backed up, my brother got engaged. My heart was hurting so much because of everything that was happening in my life, but I was also so happy for him. It was almost unfathomable that those two emotions – joy and sadness – could coexist in my heart, but there they were. I was glad that things were going well for my brother and his fiancé. I was glad that not everything in the world was terrible. In Romans 12:15 we read that we should “weep with them that weep” but we are also supposed to “rejoice with them that do rejoice.” I’ve typically thought of those two scenarios as being distinctly separate, but life is complicated and sometimes we get to do both simultaneously.
Years ago, I read an essay where a woman wrote about having a stillborn baby. Describing the period of time when she was told her baby most likely passed, she said, “He had died the day before on November 10, 2012, sometime on Saturday morning. I was reading People magazine in bed. My cousin turned 29. I had pumpkin pie for breakfast. I often think like that now. I may be having a cup of coffee or taking a shower, but somewhere; it’s the worst moment in someone’s life.” Those lines have stuck with me and I’ve thought about them often over the years. At first I always thought of them with a certain amount of guilt, wondering who was suffering while I was having an effortless day. Worrying, even, that it was happening right under my nose. As I’ve collected hardships and joys, large and small, in my three decades on earth I’ve marveled about how life is such a crazy mix of emotions – the ups and downs of our lives individually and collectively all tangled up together. So as terrible as it is to know that someone is having one of the worst moments in their life as I type this, I try to remember that at the same time someone else is having the best moment of theirs. It reminds me that life isn’t just sorrow and gives me hope that those in their worst moments will get a turn at the best moments a little later.
I mentioned in the backstory that I had the feeling at the beginning of this that we would never be the same. I really hope that we won’t. As we’re trying to find our way back into “normal” I’m realizing how easy it is to slip back into old habits and comfortable routines. Some of which are fine, but some too easily create self-absorbed static in my life that makes it hard to hear what other people’s hearts are whispering. I don’t want to be the old me, I want to be a new me that embraces celebration and graciously consoles sorrow. I want to acknowledge others as complete human beings and I want to be one too.
“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End
Being a caretaker was a lot like being a first time mom. On the outset, I kind of thought caretaking would come naturally and I had rosy expectations of how wonderful this would be. It would be a special time of growth for our family. Sure there would be hard times, but it would be so meaningful that we wouldn’t hardly notice the inconveniences. In reality, it wasn’t as idealistic as I had imagined. I wasn’t as patient or good natured as I’d imagined. Much of the time I was tired, overwhelmed, and didn’t know what I was doing. Our life revolved around Glenna’s care – we even slept with a baby monitor for the times she needed help in the middle of the night. All of our energy was being funneled into surviving. Half the time the kids homework didn’t get done and we were constantly bailing on any plans we made. Just like life with a newborn, keeping everyone alive for another day was considered a success. There was one glaring exception though where it wasn’t like having a baby at all. When you have a baby the future is filled with the hope of milestones and the promise that things will get better, but when you’re caring for someone with a terminal illness the future is harder to look forward to. However distant or imminent, the decline will come and things will get harder.
In retrospect I feel a little guilty about how difficult it was for me. Glenna was truly a gem to care for. She was rarely grumpy or demanding. For the most part, she was extremely upbeat and did everything she could to not be a burden. But still, it was hard.
Because her cancer, at least in her lungs, was shrinking, but her overall health was declining it was sometimes hard to know what to hope for. When Noel or I would take her to appointments, we would always return extremely frustrated. At the onset, the oncologist team was extremely encouraging. They told us her lungs were improving and the rest of her health would follow. We just needed to wait and she would turn the proverbial corner. So we waited. As the appointments went on, Glenna would be buoyed by the news that her lungs were looking better and we would be frustrated because it didn’t feel like we were rounding that corner. Noel and I would stay up hours later than we should have, debating whether we were just having bad attitudes or whether we were the only people who really saw what was happening. It was frustrating to watch her suffer and we often felt helpless. Many days it felt like she was in limbo, neither making strides to improve nor decline. There was no clear direction on whether we should we be pouring optimism into the hope for a cure or preparing ourselves for the worst. The emotional flip-flopping was exhausting and with no end in sight we worried about our ability to continue indefinitely as her caretakers.
Because of the conflicting evidences, it took Glenna a long time to decide whether or not to continue the Tarceva. She hated taking it. Every day when 4 o’clock rolled around I felt like a heartless jerk when I would give her the pill. But Noel and I agreed that she needed to be the one to make the decision to stop, not us, and we tried our hardest not to influence that decision. On February 1st, she made the decision to stop taking the Tarceva and not pursue other treatments, but even having made that decision, it took her 10 more days to decide that she wanted to start hospice. Glenna often said she hated it when people would talk about “fighting cancer” because by that vernacular if you died you were a failure who was either not strong enough or didn’t fight hard enough. When she started with The Denver Hospice, they gave us a family guidebook. These words rang true to me, “Understandably, most people are uncomfortable with the idea of stopping all efforts to cure their disease. It is courageous to fight terminal illness, and it is equally courageous to know when to discontinue treatment that is no longer helpful.”
Hospice was a hard pill to swallow for many family members, but it was a godsend for Noel and I. They came to us and were available for consult 24/7. They brought in better equipment and sent medications directly to our house. Noel and I had both read Atul Gawande’s book Being Mortaland had positive views about hospice. We knew the stats that people that start hospice earlier often live longer and have better end of life quality. Again, we were hopeful. The hope was short lived though. Days after starting hospice, Glenna began to decline mentally. She’d been having hallucinations for months, but with a few exceptions she always knew they were hallucinations. At first, Glenna was sure it was the changes her hospice nurse had made in her drugs. They’d switched her short acting morphine pill to a liquid since it worked faster (which is desirable when one of your main problems is breathing), but because she was so paranoid about it, her nurse told us it was okay to just let her keep taking the medicine in pill form, especially since swallowing was not a current issue. Glenna was relieved to go off the liquid, but she was still loopy. She kept pulling her oxygen cannula off and would become disoriented about where she was. We were constantly calling the hospice nurse line and when the nurse came out to check on her only a few days later she told us that from her experience Glenna was nearing the end. (This was also the first of many times it would be suggested that the cancer might be going to her brain. Scans are no longer done in a hospice situation since the goal is no longer fighting the illness, but based on the number of nurses that suggested this and the experience of a friend whose mom died of lung cancer that spread to her brain, I think it probably did.)
Family changed their lives around to arrive within the next few days and soon our house was filled with her sisters and daughters. Glenna’s paranoia kept mounting. She was afraid of falling asleep and was sure that we were involved in some sort of a shady business scheme. Hospice had us try a couple of different anxiety meds to try and calm her down, but they all seemed to have a paradoxical effect where they actually made her more paranoid and anxious. The final night she spent at our house they tried the last anxiety med in their arsenal. It’s hard to say whether she had a worse reaction to this drug or whether the sleep deprivation had built up to an unbearable point, but her paranoia that been mounting in the preceding days reached its pinnacle that night. We decided to split the night up into shifts. Danielle would take the first shift, I would take the middle of the night shift, and Noel would take the early morning shift. I can’t hardly find the words to explain that night, but Glenna was out of her mind with fear and paranoia. She acted like we were holding her hostage and kept trying to escape. Towards morning, when the anxiety med should have worn off, she refused to take her medicines from us and wouldn’t hardly let us come near her. Her strength had diminished in the previous weeks, but in her bewildered state she was stronger. It was the worst night of my life to date. Worse than any of the nights Cooper had night terrors. When Noel woke up for his shift, he called the nurse hotline and they sent a nurse over immediately. Based on our inability to stay on top of her pain meds and the fact that she had no idea where she was (when asked, she said she was in Provo on the BYU campus – a school she never attended), the nurse told us she strongly recommended a transfer to their inpatient facility.
In my heart, I knew if Glenna left our house she would never come back. The last time she’d been hospitalized there had been a moment as we were waiting for the ambulance. She’d turned to me and asked, “I can come back, right?” Her face had this vulnerable, pleading look and my heart almost broke. I kept picturing her face in that moment and felt like I would be betraying her if I let them take her away. I felt like a child and wanted someone to tell me what was right. In tears, I called called her sister, Marsha. Marsha said they would be right over, but that this needed to be our decision. Fortunately, Danielle and Noel were much calmer and more objective and realized that we really didn’t have a choice.
I pulled myself together and arranged for a friend to pick up the kids and take them to church while we figured things out. The transport ambulance came to pickup Glenna. Noel and I followed in our car. The family gave us a head start to take care of paperwork and get her settled, kindly cleaning up our house while we were away. The whole ride over I still felt torn up inside about what was happening, but the second I arrived at hospice I felt my anxiety fall away. There was a special spirit there. When we walked into Glenna’s room she was dressed in a white nightgown and sleeping peacefully for the first time in days, maybe even weeks. When we asked what they’d given her, they said all they’d done was give her a dose of pain medicine through an IV and she’d relaxed. I may never know for sure, but part of me wonders if in all of her trying not to be burden, she just couldn’t allow herself to pass away in our home.
After filling out all the paperwork and talking with the hospice doctor, Noel and I had some time to sit in Glenna’s room while we waited for family to arrive. Noel too said he’d felt a peace when we entered the building. It was peace that neither of us had felt in months. It would still be six more days before Glenna passed away, but from that point on, we both just knew that everything was going to be okay.
We’ve been thinking about our 10th anniversary since our 9th. We wanted to do something big and had narrowed it down to either a trip to Costa Rica or river guide school. When Glenna got diagnosed and came to live with us, planning became infinitely more difficult. (Maybe we should have known Costa Rica was bad luck, that was also the plan for our 5th anniversary and that didn’t turn out either.) Even if we’d logistically worked something out with family so we could go somewhere, there was always the fear that we’d be out of contact partying it up while she was dying. We decided it was probably best that we not make any big travel plans. We kind of moped around about it though. You know, Poor us, our life is so hard and our anniversary is going to be the worst ever. Boo, hoo, hoo. Super mature. At some point in January, I got a burst of optimism in the midst of the general malaise I was feeling and decided that we weren’t just going to sit around and feel sorry for ourselves, we were going to do something for our anniversary and it was going to be fun. I looked at all the local events that would be happening on our anniversary and bought tickets to the play An American in Paris. I bought Noel a new suit and me a new dress (all amazing clearance finds of course). We would at least getaway for a few hours in style.
I’m glad I made those plans months ago, because by the time our anniversary rolled around, we were too spent to make any plans. To put it in context, here was the calendar surrounding our anniversary:
Saturday, February 25th – Glenna passed
Thursday, March 2nd – We began traveling for the funeral
Saturday, March 4th – Glenna’s funeral
Tuesday, March 7th – Ellen’s birthday/traveling back from the funeral
Friday, March 10th – Our anniversary
Saturday, March 11th – Ellen’s birthday party with friends
And those were just the big things. Not included: planning the funeral, kids swim lessons, grieving, and typical life maintenance functions. Like I said, I’m glad we already had plans because otherwise we probably would have just gotten takeout and watched Netflix in our pjs. Instead, we had a pretty good day.
Both of the kids are in school at the same time for three hours, four days a week. Sometimes Noel and I take advantage of this and workout together. Running has been one of the things we’ve enjoyed doing together from the very beginning, so we decided we needed to go on a run. There had been a fire the day before on the nearby mesa, a place where we frequently run. We headed out to run there, not thinking anything about it because we’d heard the fire was out, but hadn’t realized a second fire had started. When we got to the trailhead we were met by Park and Rec officials putting up signs that the mesa was closed. We could see people on the mesa though (there are multiple trails that go up the mesa, we were just at the main one), and in an act of subversion left the main trailhead and made our way to the top via another route. (I’d like it noted that the mesa is big and the fire was on the side farthest from where we were so technically we weren’t actually in any real danger . . . )
That night we dressed up for our second, and much fancier date. We picked up our babysitter and hit the town.
While the kids ate mac n’ cheese, we ate dinner at Parisi’s, one of our favorite restaurants for special occasions. (We’d looked at going somewhere super fancy, but neither of us could get over the sticker shock and Parisi’s always delivers.) In case the pictures don’t speak for themselves, dinner was amazing.
After dinner, we headed downtown to the Denver Center for Performing Arts. The play was a lot of fun – lots of ballet and singing – and Noel even got into it after he overcame his acrophobia. (We had seats on the front row of the balcony and it was freaking him out a little. ♥) We headed back home and after taking the babysitter to hers, pulled some salted caramel cheesecake out of the freezer. (I seriously need to share the recipe on the food blog so you too can have this magic in your life.) We stayed up till midnight, which if you know me is late, and I didn’t even complain! It was a different kind of celebration than we’d thought we would have for our 10th anniversary, but it was still a blast. We’re planning on having many more anniversaries anyway so we have time for those other crazy adventures.
“And whether you believe in miracles or not, I can guarantee that you will experience one. It may not be the miracle you’ve prayed for. God probably won’t undo what’s been done. The miracle is this: that you will rise in the morning and be able to see again the startling beauty of the day.”
― William Kent Krueger, Ordinary Grace
The lung center clinic Glenna went to is world-renown. Her oncologist is involved in cutting edge research on lung cancer. He has had great success in significantly extending the life of many of his patients and was very optimistic about the chances of extending Glenna’s life. She began taking a “miracle drug” called Tarceva. (If you’ve read Paul Kalanithi’s book When Breath Becomes Air, it’s the same drug that he took.) It’s a drug that is tailored to certain genetic markers and has had an 80% success rate in those that took it. She was on a full dose of the drug for two months. Every time she went in for an appointment the doctors were pleased to see that the tumors in her lungs were shrinking, but we were disheartened because in spite of that, her overall health was declining. She was hospitalized two more times – once right before Thanksgiving and once right after Christmas. She was plagued by stomach troubles, sores on her skin and in her mouth, and bladder infections that were barely touched by antibiotics. She went from being able to go on short excursions with a walker to only being able to make the short trip to the bathroom. In January, they reduced the dose of the drug in hopes that she might still benefit from the tumor reduction, but maybe have less side effects. It didn’t seem to make a difference and on the first of February, she made the decision to stop taking the drug altogether.
There was a lot of wrestling with faith that happened during the four months she lived with us. Glenna is an incredibly optimistic person who believes strongly in the power of visualization. In a text to the family she said, “I am just pouring out my faith and using my sheer determination to get through one set back after another by focusing on the NEXT positive step available to me.” If miracles were granted simply on the basis of belief, there was no one more deserving. I don’t think any of us were hoping for a cure, but we hoped for more quality time. The whole family poured out our hearts to God in the ways we knew how – on our knees, in Rosary, within the walls of the temple – but Glenna just couldn’t catch a break. It was disheartening.
The week before Noel went to Alaska, we spoke in church. We talked about temples. About their healing power, how they help us catch a glimpse of “the big picture,” bring peace to our lives, and most importantly make it possible for families to be together forever. At that time, I felt completely zen about everything. I just knew everything was going to be okay. But, as we actually stepped into the role of caretakers for Glenna, that peace sometimes became elusive in my daily life. I kept searching for it though and every once in awhile the whisperings of a scripture would come to me. At times it would be words from our church’s Doctrine & Covenants, “Did I not speak peace to your mind concerning the matter?” (6:23) and I would try to remember the initial peace I had felt. Other times the words would come from Galatians, “Let us not be weary in well doing” (6:9). My heart was still heavy, but I was able to keep moving forward and hoping for an eventual peace.
There is a more mature lady who goes to our church. She frequently likes to tell the story of how she had cancer (I can never remember what kind) and was told she had 6 months to live. She was given a Priesthood Blessing and was miraculously healed. She has now lived years past that diagnosis. She has outlived two husbands and is now on her third. Noel gave his mom a priesthood blessing before they flew down from Alaska. He was very upset afterwards because he didn’t feel like he could say the words that would indicate a promise of healing. It just wasn’t God’s will. God’s will is hard to understand. Why does one person get to outlive multiple husbands and another not get to see their grandkids grow up? Robert D. Hales said, “I have come to understand how useless it is to dwell on the whys, what ifs, and if onlys for which there likely will be given no answers in mortality . . . We need to spend our time and energy building our faith by turning to the Lord and asking for strength to overcome the pains and trials of this world and to endure to the end for greater understanding.”
Glenna and I spent a lot of time together and sometimes she would open up to me about her fears. Once or twice she mentioned her fear that a miracle wasn’t coming because she lacked faith or was in some way undeserving. I don’t think she thought these things because she actually lacked faith, but because sometimes it’s easier to know a truth when it’s happening to another person than when it’s happening to you. We talked extensively about miracles and I did my best to remind her, with my limited knowledge, that just because you don’t get the miracle you want doesn’t mean there aren’t miracles. Sometimes the miracle is peace in our hearts or the blessing of our family members being okay without us. And of course there is the ultimate miracle of our Savior’s sacrifice that offers the gift of Grace to each of us. These talks were tender and often led to one or both of us crying.
Even though we didn’t get the large miracle of healing that was desperately wanted, those four months were sprinkled with many small miracles. Glenna was able to bear her testimony to us a final time. She was able to spend time with the children. They read books, showed her their art, and watched countless episodes of Magic School Bus together. She was miraculously able to attend the children’s primary program. She had a final Thanksgiving with all of her children, which she said made all of it worth it. Both of her sisters and all of her nieces were able to come visit, some of them more than once. Even though we were certain it was going to kill her, she miraculously survived norovirus. (Which would have been such a miserable way to die.) We personally were blessed to have friends and neighbors show up at our door with food. We were fortunate to have multiple friends that were willing to watch our kids on short notice and for long durations. We may not have gotten the big miracle we wanted, but we got a plethora of small ones that carried us through.
I can’t say that I understand why Glenna left this life seemingly out of turn or why her final months were riddled with so much pain and struggle. Instead, I’m trusting that God knows best. I’m trying to to let my heart be filled with the peace that only God can offer and focus on the things I do know with surety: That her suffering is over, that she is with her parents and other people she dearly loved, and that someday we will be with her again. I’m glad I know those things and maybe that’s the biggest miracle of all.
Bonus: Here are a few talks from LDS sources that spoke to me on the subject of miracles not happening in the way you want or expect. I’m including them in case some reader out there is looking for deeper reading.
Miss Ellen turned five this last week. I was really worried that in the midst of all our preparation and travels for the funeral she would feel overlooked, but instead she basically got to celebrate her birthday for an entire week.
She had a party in Cedar City, UT with my family a few days before her birthday. We all rented a condo together through VRBO and had a party after Glenna’s funeral. She also got several gifts from Noel’s side of the family, but none of them were staying in Cedar so they missed the party.
On her actual birthday, we woke up in a hotel, also in Cedar City, and then spent most of the day driving home. We still tried to keep it special though. The night before, Noel acquired THE LAST Frozen ballon in Cedar City. She’d requested two things for her birthday and that was one of them. We stopped in Grand Junction, CO where we picked up a 1/2 dozen cupcakes we’d ordered. (They were overpriced, but I was feeling guilty about the whole spending 9 hours in the car on your birthday thing.) We got lunch at Spoons Bistro where she got her requested chicken nuggets. (Side note: if you’re ever driving through Grand Junction and need a place to eat I sincerely recommend Spoons Bistro. The food is better and healthier than you would get at fast food. PLUS, eating there helps support HopeWest, a hospice/palliative care/grief support center there – all organizations that have a tender place in my heart.) We arrived home around dinner time and ended the day with pizza and the last of the cupcakes.
She took treats to school the next day and then on Saturday she had a big party with friends. I had wanted to invite a small number of friends, but every time I asked her who she wanted to invite she would name different people. We ended up inviting her entire preschool class as well as a few friends from church. I was secretly relieved every time someone would RVSP no, but we still had 10 kids show up. The party was only an hour and half, but still exhausting for me and fabulous for Ellen.
At five, Ellen is as spunky as ever. She is always loved by her teachers/instructors, but they often tack on a little note that she could be a better listener. From experience, I know what they really mean is she could look like a better listener. She’s not very good at holding still, but she’s listening and generally does well on the skills being tested. She’s also extremely inquisitive. She asks LOTS of questions and I find myself constantly explaining things ranging from science to the rules of society. She has her own unique sense of style and will not take notes on her outfits. I’ve learned it’s easier to just let her wear whatever crazy thing she wants. She’s currently interested in gymnastics, but adds a little bit of an American Ninja Warrior flair to her attempts. She’s my little sidekick when she’s not at school. If she had her way we would just cuddle and read books or watch Dancing with the Stars. I love watching her at the park with her preschool friends. She loves running around and playing, but she’s also not afraid to go off by herself and play in the weeds or zoom around on her scooter at top speeds. (There’s a picture in “Olivia Saves the Circus“of the main character riding a scooter – you can actually see it in the sneak peak on the Amazon link – that I often think of when Ellen is riding her scooter.) I love that she’s not embarrassed to just be Ellen. She’s a crazy mix of girly (dresses and endless accessorizing) and unkempt (her hair and general approach to life). She’s definitely both the sugar and spice in our lives.