Blow the Candle Out

Two Years Ago

David is discharged from the hospital on December 23rd. There was never an explanation of his severe abdominal pain; there often isn’t.

We have everyone at home for at least part of the holidays. Our good friend and blogger, Ellen Patton, does an extensive photo shoot. David looks healthy and strong, smiling through his bushy beard.

Christmas 2016

Our Christmas was gentle, quiet, and peaceful. Peter, Xiomara, and our grandchildren, Andrew, 3 ½, and Victoria, 1 1/3, drove a borrowed pickup truck up from NYC Friday night. Saturday, Xiomara and I made egg nog, Jim did some last minute Christmas shopping, and we enjoyed a lovely fire. Sunday morning we opened a few presents before sacrament meeting at church. In the afternoon we built another fire and roasted marshmallows over the coals.

For me the highlight of the holiday was Monday afternoon. As Victoria’s parents packed their things in the guest room, I entertained Andrew by re-lighting the dinner candles each time he blew them out. After many cycles, he wandered away and I stayed next to little Victoria in her pink fleece hoodie. As I placed a candle in front of her, she pursed her lips and blew the most delicate baby breath imaginable. With each tiny puff the flames bent away from her. For about fifteen minutes, I lit candles and she blew her little girl puffs of air at the flames.

When Xiomara and Peter were ready to go, I invited them into the dining room to see Victoria’s new skill. For the rest of her life, I’ll be the one who taught her to blow a candle out.

"In the Bleak Midwinter"

Two years ago

The week before Christmas is rough. On December 18th David’s white blood cell count had doubled in 3 days. Do the math: this could be fatal by December 27th. December 19th, at a routine visit, David tells the nurse he’s having abdominal pain: an 8 on a scale of 1-10. Of course, he hasn’t said a word to me.
While he is at Cox, I go forward with my plan to drive to my 1 p.m. therapy appointment in Waltham. From MGH, I take the Mass Pike, an unfamiliar route. Even though I have GPS, I get confused and miss the Newton exit. I then miss the Waltham/Route 128 exit, so I have to go to Framingham. And then the traffic slows to a crawl.
Feeling desperate and stressed, I call my therapist, saying I need to see him, if only for a short visit. He’s got free time, so he says to drive safely and he’ll be waiting.
As expected, David is admitted to Lunder 10. He probably has an intestinal infection. We know it isn’t colitis: he has no bowel. One small perk: he’s scored a 10th floor room with a stunning view of the Charles River.
December 20th, inpatient, David’s blood pressure dropped to 70 over something. His nurse, Meg, gave him a bolus of saline, then a unit of red blood cells. It’s a bit tense: both Meg and Judy Foster, the nurse practitioner, were in the room. Afterwards Meg said, “I knew we weren’t going to lose him.” I didn’t know that.

Just before Christmas 2016

I’m looking forward to the new year, when people will stop asking me the perfectly innocent question: who’s coming home? For four different reasons, Peter and his family are the only ones who will be with us. And, of course, we’ll miss David.
My good friend, Cami, comes over with her kids to help me decorate the house and tree. Cami’s a good sport about installing the tree lights. She just bought a pre-lit tree to avoid that task at home.
They’ve promised to come back after Epiphany to put the decorations away. I was struggling with the prospect of taking down the decorations, so much so that I couldn't put them up alone.

But, really, things are not all dreary; mostly life feels good. I walk to Cami’s for my weekly piano lesson: 5 ½ miles total. The Saturday snow (about 6 inches) has mostly melted, though there are patches of ice to be wary of. I get home after dusk, which falls at 4:15 p.m. Tomorrow is winter solstice.

Advent

Two years ago

Jim, David, and I drive to New Jersey for my dad’s funeral. I plan to stay on with my siblings to start emptying the house my parents lived in for 29 years. After Jim and David leave, I realize that all of my belongings are still in the trunk of the car: my laptop, my clothes, my wallet, even my psych meds. Lucky for me Maggie’s husband John is a doctor. We go to Walgreens and he writes me a prescription to tide me over till I get back home. I spend the week wearing my dad’s purple shirt, cargo pants, and a belt.
         The packing up is bittersweet. We fill box after box of Mom's books. When we think we've packed up the last of them I open a cupboard in the attic and call down, "More books!" Murder mysteries I'm sure she hadn't read for fifty years.

On December 10th, David’s WBC count is the lowest of the past two months: 3.84. The hydroxyurea, that old workhorse of a drug, brought the count down from 95 to under 4 in just 7 days.
        David wants us to have our traditional Advent suppers. Since 1998, we've invited old friends each of the four Sundays before Christmas. David becomes a little girl magnet. Two sweet five-year-olds snuggle close to him as we gather in the family room to read Christmas scriptures and sing carols.

Advent 2016

I struggle to prepare for Advent each week this year. My friend Cami comes over after she puts her one-year-old down for her afternoon nap and we set the tables together.
The Compassionate Friends, a support group for bereaved parents, grandparents, and siblings, holds its annual candle-lighting on Sunday, December 11th. I invite my family, far and near, to light a candle for an hour at 7 p.m. local time. In New York, our sweet little granddaughter immediately blows it out.

Maple Butter candle for David

Jim lights ours: a two-wick scented candle in a jar. I sit in a wooden chair next to the couch where David sat last year with those adoring little girls. I can’t sing the first few carols: my throat constricts. But I'm prepared: I have a dish towel to catch the tears.

(If you lit a candle for David, leave me a comment, please.)

Sticky Leukemia Cells

Two years ago

In my blog I report that David’s WBC count skyrockets during the week of his Chicago road trip, from 24 to 90. (Normal range is 4 to 11). I don’t mention the reason: David forgot to bring his hydroxyurea, the drug that kills blood cells and keeps the leukemia in check.

Tuesday, December 2nd, the WBC count has risen to 95. Dr. Gaby Hobbes, covering for Dr. Fathi, initiates a conversation she hopes is premature. At this high volume the “sticky” leukemic cells can clog capillaries in the organs, including the lungs and brain, causing serious complications and even death.

I ask to see a social worker about hospice. I am shocked to learn that hospice is 98% family-given care; evidently my picture of hospice being hospital-level care at home is a common misconception. I still want David to die at home; I hope I’ll be strong enough.

Thursday, December 4th, my 91-year-old father, Dr. George G. Hazen, dies of a heart attack. That week he’d swum his usual laps at the YMCA; his death is unexpected. I post a tribute on my blog.

Early December 2016

First snowfall: Monday, December 5

David's grave after first snow

The Compassionate Friends, a support group for bereaved parents, grandparents, and siblings, meets in Concord on the first Monday of each month. Jim and I attend a Boston Philharmonic Youth Orchestra at Symphony Hall on November 7th; for the month following I look forward to Monday, December 5th. A friend of mine describes going to a bereaved parent support group several years ago and deciding that she didn’t want to make the loss of her child her identity. For me, I find great comfort in being with parents who know what it’s like to lose a child.For now, it is a place to say David’s name aloud, to talk about my sorrow and face the grief. It’s a club no one wants to be a member of. It’s a club that brings me relief.

This Sunday, December 11, The Compassionate Friends is holding their annual worldwide candle-lighting. Please join me by lighting a candle at 7 p.m., local time, to honor all the sons and daughters, brothers and sisters, and grandchildren who left too soon. Imagine the candlelight circling the globe that night.

"Laughter Through Tears"

Two years ago

          Jim and I stay in Utah for Thanksgiving, since R'el and David are on a road trip: to Wisconsin to visit Annie in Madison, then to Chicago to help Matt move apartments and enjoy Thanksgiving with Meemaw Charlotte. The guy with leukemia keeps up a good pace as they walk all around Lincoln Park ZooLights.


Post-Thanksgiving 2016

Before sacrament meeting, my friend Elaine asks me how I am. I shake my head as tears well up. Jim is at another chapel (he was called as a counselor in the Cambridge Stake Presidency November 6), so Elaine offers to sit with me. I can’t speak without sobbing, so I scribble a note, “This is an unexpectedly harder holiday season than last year. I just am having a painful time. Not constantly, but intensely.”
Elaine says something that makes me laugh. I ask, “Please make me laugh.” She quotes Steel Magnolias, “Laughter through tears is my favorite emotion.” During the opening hymn, my throat constricts, tears well up, and I can't sing. Elaine puts her arm around my shoulders. I'm grateful.

I have a strange dream. I’m walking in a huge grassy cemetery, with markers flush to the ground. An Army sergeant is showing me a large area under development at the far end of the cemetery. It’s a massive excavation. The soil is slate-colored and textured like flaky clay; the sides are perfectly squared off. The excavation pit is about 20 feet deep and covers many acres. The sergeant explains that they dig the entire area out, then replace the soil in large blocks, about 4 feet by 6 feet. That way the graves are squared and uniform when they are dug.
Where does that dream come from? (I’m open to suggestions.) As I think of it in passing over the next several days, It seems related to the perfectly squared hole the cemetery workers dug for David’s gravestone. I took a picture of it, before the stone was installed, which occasionally appears on my computer screen. (My screen-saver is a random slideshow of all my photos.)

          Other photos that flash by: David in a helmet and blue jumpsuit, strapped to a smiling helmeted stranger with dark googles. David's cheeks look like rubber. It's the sky-diving jump he made, on June 12, 2010, back when he was living with us, before we know what acute myeloid leukemia was. David looks so alive, so happy. Another picture shows him about to enter the small plane, turning back to the camera with a smile and a thumbs up. It makes me smile.

Welcome Respite Then, Loss Now

Two years ago

Before Thanksgiving 2014

David’s medical condition is stable, if not sustainable. He's healthier than he's been for months, so Jim and I fly to Utah for the annual Johnston Pre-Thanksgiving Dinner. Sunday night we drive to Shelley, Idaho, and stay in Charlotte’s house on the Snake River. It’s a welcome respite: a quiet day, with no obligations. We have the spacious house to ourselves. Outside the sliding doors, we watch the shining whitewater flow under a wintry sky with pale white clouds. There’s snow in the grass.

After we return home, we attend an intimate concert of Brahms’ Ein Deutsches Requiem  (A German Requiem) scored for piano-four-hands and chorus. I love this piece: Brahms chose comforting scripture verses, in contrast to the traditional Latin text, with its "Day of Wrath", that Mozart and Verdi used. My favorite is a duet between the soprano and choir. The soprano sings:

                         Ihr habt nun Traurigkeit;
                         Aber ich will euch wiedersehen,
                        und euer Herz soll sich freuen,
                        Und eure Freude soll niemand von euch nehmen.

And ye now therefore have sorrow:
But I will see you again,
And your heart shall rejoice,
And your joy no man taketh from you.

And the choir continues with the words of Isaiah:

Ich will euch trӧsten,
Wie einen seine Mutter trӧstet.

                        As one whom his mother comforteth,
So will I comfort you.

Before Thanksgiving 2016

Next week is the program for our annual wreath-making party in our Relief Society (church women’s organization). A small chorus rehearses Sunday evening. In the middle of a Christmas song, suddenly and inexplicably, I feel a constriction in my throat and tears in my eyes. I mouth the words and resist the craving to double over and sob in grief. It passes, but reminds me that grief lurks, hidden, close to the surface.

Jim has been feeling more intense loss this week as well. Perhaps it’s the shorter days. Sunset is at 4:15 p.m. this week. It’s a season of loss, despite the Thanksgiving and Christmas holidays.

Veterans Day 2016

Two years ago

Except for a few family trips, David has not gone anywhere but his twice weekly appointment at Mass General. It’s been five months since the transplant, five months of avoiding public places. David still has a minimal immune system, that's not going to change, but I ask Dr. Fathi if he can at least go to church. David starts attending, wearing a face mask. One Sunday a visitor comes up to us. I expect him to say something sympathetic, but he looks at David suspiciously and obviously wonders if he has Ebola.

Veterans Day 2016

Jim and I walk to Lexington Center, arriving moments before the Veterans Day parade steps off. (We usually jog the last few blocks, since we never leave home early.) We shake hands with Bill Mix, a longtime Minuteman who started the William Diamond Jr. Fife and Drum Corps. (Annie and Sam joined at its inception in 2002.) On this glorious bright autumn day we walk alongside the high school band as they march down Mass Ave.
Mr. Jeffrey Leonard, long-time band director Coordinator of Performing Arts for the Lexington Public Schools, steps aside for a moment to tell us that the chorus risers are in. They were purchased in part with a donation from David’s insurance money.
The parade winds around the Lexington Battlegreen, then heads back down Mass. Ave to Cary Hall. The program starts at the eleventh hour of the eleventh day of the eleventh month: the 98th anniversary of the Armistice that ended World War I. The police color guard posts the colors; the veterans of each branch of the military stand as the high school band plays their respective service song. Two Vietnam vets speak as part of the 50th anniversary commemoration. They remind us that they did not come home to a hero’s welcome, but faced public anger and bitterness.

As another speaker, Gina Johnson, is introduced, I realize that she made a pencil drawing of David from a photo. We received the original drawing. For her volunteer mission, Operation Home Ties she draws a “memory portrait” of each fallen serviceman and woman with ties to Massachusetts; she posts a copy on her travelling tribute wall.

We hadn’t noticed it, but in the foyer is a large display, about 8 feet tall and 30 feet long, of penciled portraits. After the program, we view the wall and find a small copy of the same line drawing that  hangs on my office wall. We walk over to Gina and show her David’s picture. Through my tears I’m able to thank her for her thoughtful service to us.

Transformative Music

Two years ago

On October 23, 2014, David starts a ‘phase one clinical trial’ of cabozantinib. He takes a pill each morning and we go to MGH twice a week for bloodwork. For the first two weeks, David is allowed to take hydroxyurea, a standard workhorse of a drug (first synthesized in 1869). It doesn’t act on the bone marrow, where the leukemic cells are produced; it just keeps the white blood cell count low.
We drove to New York a few weeks ago, visiting Peter, Xiomara, and little one-year-old Andrew, R’el, and my dad. R’els Oratorio Society of New York performed Haydn’s The Creation. His depiction of the creation of light radiates splendor.

From my blog:

David was happy and talkative. Saturday morning, he carried Andrew from the apartment to the car a few blocks away. Sunday, he walked to church (8 blocks) and back (E. 95th St. to E. 87th St.). He just sounded like the old David, sparring with Peter, saying interesting, intelligent things. I savor it.


First week of November 2016

Sunday morning, November 6, radically changes Jim’s and my life. Jim is called to be a counselor in the Cambridge MA Stake. The Cambridge Stake consists of thirteen congregations. We don’t know all that his new role will entail, but it will include counseling with individual stake members and leaders as well as administrative duties. We do know it will be a spiritual stretch for us, and a great blessing in our lives.

Last night, Jim, four of our friends, and I shared an evening with 2600 others at a concert by the Boston Philharmonic Youth Orchestra at Boston Symphony Hall. According to Wikipedia, Symphony Hall is one of the top three concert halls in the world. The shoebox design creates an unparalleled acoustical experience.

The young players, all under 22 years old, play with fire, intense energy, and passion. Benjamin Zander is a force of nature; he inspires his musicians to musical heights I’ve never heard before. (Watch his 21-minute-long TED talk, "The Transformative Power of Classical Music".

The crowning jewel of the concert is the Sibelius Violin Concerto, played by Mo Yang, a young Korean violinist. For nearly 40 minutes, his every move holds us captive.

I love listening to classical music recordings, but I’m not sure I can ever listen to this concerto on a recording again. I don’t want the whole body experience of last night to be overlaid with anything else.

New Calculus

Two years ago

Early November 2014

On October 15th, Dr. Fathi states that once the conventional treatments stop working, David will probably die within two months. I live with a new calculus to my life: every week that the treatments keep the leukemia at bay pushes back that two month deadline.

Approaching my 60th birthday

I’ve successfully navigated writing about the toughest week of David’s illness, mid-October and the pronouncement, 'infinitesimal'. (When he died was tougher, but then his illness was over.) Now begins the remembrance of living week by week, blood test by blood test.

I haven’t had any gut-wrenching pulls into intense grief since that sunny day on an Arlington sidewalk two weeks ago. I do often wake up with a diffuse anxiety. I don’t even try to tease it out: does it matter whether the grief of David’s illness and death is 30% of my pain or 80%? I don't think so.

I had a wonderful evening last Tuesday. Twice a month I host a women’s writing group. Sometimes I’m the only one attending. The first few times that happened, I took it very personally: Nobody Likes Me, Everybody Hates Me. My Bryn Mawr friend, Stacie, taught me that song when I was feeling sorry for myself, forty years ago. (Yes, I just counted them on my fingers: exactly forty.). Now I’m at peace about it. When no one else comes, I sit down and write by myself. If one other person comes, we have a cozy tête-á-tête. Three of us changes the dynamic: not better or worse, just different. I show up every time; often another friend or two joins me.

          On Tuesday, Jennifer came for the first time, with her adorable six-month-old. She worked on the story of her daughter's birth; I worked on my blog. We wrote separately for a while, then read aloud to each other. Her insight improved my post. We promised to keep writing and meet again next month.

The Romance of Route 62

Two years ago

There’s no news this week. Dr. Fathi is researching clinical trials that David might qualify to join. We continue to drive along the Charles River on Storrow Drive to Mass General every Monday and Thursday. I know every manhole cover along the scenic parkway.
His white blood cell count says it all. On October 6, David’s WBC count is a very low 2.2: only 2.6% are leukemic blasts. By October 26, the WBC count is 15.5: 65% are blasts. Likelihood of a cure: infinitesimal.

Late October 2016

          The stressful month-long anticipation approaching the second anniversary of Dr. Fathi's pronouncement, "infinitesimal", melts away and Jim and I enjoy two autumnal outings this week.

Hartford Temple

Wednesday, we go to the open house of the Hartford Connecticut Temple (The Church of Jesus Christ of Latter-day Saints). The drive west on the Mass Pike and Interstate 84 is glorious; trees of flame-orange, yellow, and red, dazzling in the bright sunlight; a new vista over every hill. After our tour we stop for lunch at the Elbow Room--an American Joint restaurant in West Hartford. The day is fine and the rooftop dining is open. Fondly we remember the many visits to R'els during the four years of her psychiatry residency here.

Route 1 last month, what next?

On Friday we take a central Massachusetts foliage trip. Rain threatens, but we press on. I’ve planned our trip: Massachusetts Route 62 all the way to its western terminus at Barre, east of the Quabbin Reservoir, in central Massachusetts. I’ve great affection for Route 62. It intersects our street just 3 miles north of our house. In the road atlas it wends its way through small towns and countryside. The actual experience is enchanting. Each town has a white-steepled church along one side of a neatly-kept common.

October in Central Massachusetts

At Barre we walk into the folksy Colonel Isaac Barre Gift Shop. Wooden signs with whimsical sayings,

My favorite saying in the Barre gift shop

home decorating items, candles, knick-knacks, and old books. A wall-size historical map of Barre illustrates the mansions of prosperous, nineteenth-century Barre. We chat with the shopkeeper, who loves the small-town living. In the back of the store garments wrapped in plastic hang on a long rack. She explains: the shop used to be a dry cleaners. Now she accept clothes during the day and a van takes them to the next town every evening. Sometimes a customer comes in after the pick up, but before the driver has left town. The shopkeeper takes the clothes and puts them in the back of the van. There are apartments above the shop and sometimes someone will call her: the cell phone coverage is spotty and he needs to get a message to his wife at home. She runs upstairs with the message. Mayberry R.F.D. right here in New England.

Our last stop is Petersham. Another white church, another town green with granite war memorials.  We wander into the Memorial Library, another throwback to an earlier era. Behind the circulation desk is a huge marble slab honoring its citizen-soldiers of the Civil War. Across the green is a small monument, marking where Shays' Rebellion (1786-1787) ended.

Shays' Rebellion plaque in Petersham

I've only seen these signs in New England

          We wander north and drive back on Route 2, stopping at a roadside farm stand in Concord for a pumpkin and some local apples.

Total distance: 143.3 miles. Total driving time: 4 hours, 4 minutes.

That evening I see 'James Madison', in frock coat and wig, discuss the contentious political climate around 1800, not unlike today. Much as I love the Broadway musical Hamilton, I realize Lin-Manuel doesn’t do him justice. Madison, an articulate, genteel, and refined Virginian gently chides us for the rough, even rude character of the citizens of Massachusetts. But he graciously spends the evening enlightening our minds.

Ambushed by Grief

Two years ago

            Jim, David, and I sit in a small windowless room.Dr. Fathi says there is no known treatment likely to cure the leukemia: David’s chances of survival are “infinitesimal”. He speaks of keeping patients alive for a certain event: a child’s graduation or a wedding, for example.

A few days later David sends an email to our families:

            “You should probably sit down again. My doctor concludes that my chances of recovering from leukemia are extremely low. I probably have on the order of a few months left to live. I am unsure what to think of this. I definitely haven't been overwhelmed by negative thoughts at this news, which is good.
I love you all
David”

Mid-October 2016

Disclaimer: I want to emphasize that what I write here is not the majority of my experience. 95% of the time I function well. I laugh; I learn; I enjoy beauty. I go for walks; I brush my teeth. The grief attacks are short-lived, but brutal.

I walk down the sidewalk, away from my writing coach's apartment, enjoying the perfectly blue October sky, sunshine on my hair and face. In the sky to the north, I hear the faint beat of helicopter blades. In a quarter of a microsecond, several memories flood in. Last week, as I researched for my blog post, I had watched a YouTube video of a short section of Mr. Holland’s Opus. As Mr. Holland describes Beethoven’s experience as a deaf composer to his music appreciation class, the second movement of Beethoven's 7th Symphony  plays on the phonograph. Mr. Holland is silently processing the recent news that his own young son is deaf and will never be able to hear music.
          In the last few seconds of this YouTube selection, the sound of beating helicopter blades is heard. I know the movie well: the beats segue into scenes of the raging Vietnam war and then the military funeral of a former student. I hadn’t thought about this scene for years. Since then, I’ve been in a cemetery with a flag-draped coffin. Two cemeteries. Three coffins: my Navy veteran mom in 2013, my Navy veteran dad in 2014, and of course David in 2015. I’ve heard taps, played in a rain-soaked cemetery in December, wafting through a September fog; I’ve watched earnest young men in uniform fold the coffin-sized flag. I’ve been handed a flag for safekeeping by an earnest Army sergeant, so moved he couldn’t express himself.

So, here I am in Arlington, ambushed by grief. Again.

Well of Grief, Revisited

Two years ago

              I know it's very bad news when Faye, the office manager at Cox Clinic, calls to schedule an echocardiogram for David. The only reason they would need to know the health of his heart (which was damaged last March with the chemo drug, daunorubicin), would be if the latest treatment has failed. His low EJ (ejection fraction: a measurement of heart function) might disqualify him for a clinical trial. And you only go to a phase one clinical trial if the conventional treatments have failed.

              The bone marrow biopsy of October 6^th reveals that 16% of the white blood cells are leukemic. So, the maddening waiting of last week, when 'nothing' happened, is over. Jim, David, and I will meet with Dr. Fathi, the leukemia doctor on Wednesday, October 15.

Columbus Day Weekend 2016

              Saturday we hold a successful second annual blood drive in memory of David. Over fifty people come.

              I spend several hours on Friday, baking cupcakes and conference cookies for the donors. They are a big hit, especially among the bloodmobile staff. Out of the five dozen I baked, we return home with just two.

              Sunday morning I wake up with a headache and general achiness. Is it an illness? Is it a somatic reaction to grief, triggered by the blood drive? Does it matter?

              Am I grieving right? I know there’s no 'right' way, but I can’t even tell if I’m grieving. I guess by definition I am; I’m living through a loss, a loss that those who are experiencing it say you never get over.

              What does that mean, to get over? I’ll always be a mother who lost a son. The latest trigger, just this morning: Jim copies me on an email he sends to an old friend, who wasn’t able to make it to our August open house for Annie and Shawn and Sam and Savannah. He writes, “The open house went well. It came at the end of a week when all five children were with us…” The ‘all five’ stops me cold. I have resolved to continue to tell people I have six children (and then mix it up if they ask where they all are, so that it’s not obvious I’m only getting to five). Over the course of our August week together I am often reminded that five is the maximum number of children possibly present.

I revisit David Whyte’s poem, “The Well of Grief”:

Those who will not slip beneath

the still surface on the well of grief

turning downward through its black water

to the place we cannot breathe

will never know the source from which we drink,

the secret water, cold and clear,

not find in the darkness glimmering

the small round coins

thrown by those who wished for something else

              I was greatly touched by it when I first read it, exactly a year ago this month. When I search for it in my blog posts, I see that as I pondered it, I listened to Leonard Slatkin conducting Samuel Barber’s Adagio for Strings. Today I listen again, as I write, reaching for that sacred place where feelings are raw and real.

              I feel Whyte’s poem so much deeper than a year ago. Then, it spoke to my heart, without words, but I didn’t know how to turn downward through the water, more importantly, didn’t know if I wanted to deliberately swim down. Would I go so deep that I couldn’t get back up to the surface to breathe?

              And what are those coins he speaks of? I only guessed, a year ago. Now I feel like I understand better. I've come to the painful realization, over this past year, that I had never really understood people who were grieving. I'm pained by my lack of empathy. Now I've entered the club who throw small round coins down wells.

              This grief is a journey. And much like a drive on a rambling road through New England woods, I can only see a few yards beyond me. I can look at someone else’s map and imagine what lies ahead, but I can’t know until I am on the road, tomorrow, a month from now, five years from now.

              Jim and I watch a Doc Martin TV show. There’s a scene where Bert, usually flip and cocky, experiences great sorrow. He sits in his truck at the side of a country lane, weeping quietly. That’s how I feel.

              And now, YouTube has automatically started a a different, somber piece, Tomas Albinoni’s Adagio. Music opens the heart. When the Albinoni finishes, I search for Beethoven’s second movement of the Eroica Symphony, the Funeral March. And what about the Beethoven Mr. Holland plays to his music class while processing the deafness of his son? Second movement of Beethoven’s 7^th. The tears flow. I don’t need a map for today; I’m right here.

Happy Birthday, David

Two years ago

              My therapist, also a David, points out that my answer to his question, “What’s happening?” (“Nothing”) is great news after the roller coaster of the past six months. But the waiting is exhausting. The bone marrow biopsy after the high-dose cytarabine chemo shows persistent leukemic cells, but Dr. Chen is optimistic that Sam’s lymphocytes (white blood cells), harvested in August and infused on September 11th, will attack the leukemic cells. We wait and see.

              David celebrates his birthday by making a lemon meringue pie to share at the clinic. The nurses ask, “Oh, did you do something special for your birthday?” His answer is non-committal. Not much excitement in his present life.

Early October 2016

              I’m a day late with my blog. My project of simultaneously blogging our story from two years ago and the present day reality is harder than I anticipated. Looking back on our struggles to keep hope alive, looking back with the knowledge that nothing will stop the freight train that is David’s death; facing those memories is daunting.

              Instead of working on my blog yesterday, I spend over two hours briskly walking the Minuteman bike path to Davis Square, where I meet with my excellent psychiatric nurse practitioner. I've scheduled my semi-annual visits for April and October, giving me two easy opportunities for long walks. It's cold and threatens rain, but my body soon warms up and I'm glad I left my windbreaker at home. After the appointment, I eschew the convenient public transit T and walk home in a bright and sunny,  quintessential New England fall day. Five hours in total, 16 ½ miles. As for the blog, truthfully, I have had all week to work on it; yesterday was just the final day of a week of procrastination.

              Yesterday was either David’s 29^th birthday or the day to remember that he’ll never turn 29. Was it a 'good' day? What does that even mean? I don't cry much; I'm grateful for the thoughtful emails we receive. I meditate on my walk, then listen to podcasts. In the evening we have a video-conference call with our children for our monthly family book group. Afterwards Jim and I do some family accounting. Nothing special, just everyday life, tinged with sorrow.

Respite Then, Respite Now

Two years ago

On September 19, 2014, Jim and I drive to Perrysburg, Ohio, south of Toledo, in one day: a twelve-hour drive. Jim’s cousin, Bryan, marries his fiancée in her parents’ backyard. It’s a lovely wedding, and a chance to catch up with Jim’s aunt and uncle and some cousins. The trip provides a welcome respite from the routine at home of carefully preparing food, bleaching dishes, and driving into Boston for clinic visits at least twice a week. David stays home: several friends are on call to help him if needed. I walk to the historic downtown from our motel; it's a charming riverfront town which once was a ship-building center and a busy port, before Great Lakes ships became too large to navigate the Maumee River.
On the way home we stop in Northumberland, Pennsylvania, where I was born and spent my childhood until age nine. Across the Susquehanna River is Sunbury, where my older brothers and I attended St. Michael’s school. Jim and I stay overnight in the Edison Hotel in Sunbury. Back in 1883, Thomas Edison oversaw the building of a power plant there, and on the Fourth of July, he threw the switch to light up the entrance of the City Hotel (now named for Edison), while residents cheered and a brass band played.
The Edison Hotel hasn’t been updated much since 1883. In my overactive imagination I conjure up fantastic midnight disaster scenarios, so I carefully check the lock on the door and hope the other guests and desk clerk are trustworthy. The mattress is saggy, but I’m glad to say I’ve stayed at the Edison Hotel, after those childhood years of driving by the facade.

Early fall 2016

Jim and I spend six days fulfilling my longtime dream of driving all of US Route 1. In January we drove south to Key West and slept on a sailboat in the harbor. This week we travel northward, from Boston to Fort Kent, Maine. (I’ll fill in more travel details later this week.) July, August, and September were intensely painful, anticipating and then living through the first anniversaries, especially of David’s death (August 12) and burial (September 12). Although we had planned the northern road trip months ago, before these emotionally trying months reared their heads, the timing is perfect. I take off my grieving mother mantel and thoroughly enjoy driving through New Hampshire and Maine, with two short jaunts into New Brunswick, Canada.

Northbound on US Route 1

Last winter Jim accompanied me to fulfill the first part of a long-time dream: driving the length of US Route 1, which goes from Fort Kent, Maine, on the northern border with Canada, to Key West, Florida, the southernmost town in the Continental United States, 90 miles from Cuba.
See Route 1, Day Eight: Key West!

Tonight we’re in Wells, Maine. We left home at 1:20 p.m., drove down Storrow Drive to the Mass Pike, got on Route 1/I-93 and headed north. We stopped in Portsmouth, New Hampshire, for dinner: Jim got some restaurant suggestions from a friend who lives there. From the restaurant deck we could see The Strategic Harmony, a freighter from Singapore. After dinner we walked down the street for a closer look. Two huge cranes were unloading…sand from Chile. Unexpected.

Before we got to the restaurant we found a coffee shop/used book store, browsed for a while and bought about seven books. We’re incorrigible book buyers.

As dusk fell we bought gas in York, Maine and Jim worked his internet magic. First night’s stay: Coast Village Inn, a modest motel with a good deal on Expedia.

Some Dates Are Forever Changed

Two Years Ago

August 25, 2014. David is admitted to the MGH leukemia unit, for high-dose cytarabine. He receives 2 grams of the chemo drug every 12 hours for 6 days. At that high a dose, there is a risk of cerebellum damage: loss of fine motor movement, balance, and the ability to walk and control posture. I’m torn between the hope of a cure and the terror of the dangers. My son might never be able to walk again. For four days he is very sick, unable to eat, and just lies in a fetal position on the bed.

September 3, 2014. David insists on leaving the hospital. The nurse practitioner urges him to stay. With his extremely low immunity, she wants him in the hospital with immediate access to IV antibiotics. She is confident he’ll be back, stating that cleanliness won’t abate the greatest threat: bacteria in his own gut.
I beam with pride as I follow David; he strides out of the unit, determined to live his own life and go home.

I write in my blog that day:

            For my part, I thoroughly cleaned the house. It may not matter much, but it is the one thing I have control of. Annie told me of a very difficult time on her Taiwan mission. Everything was hard. So, she stood by her air conditioning thermostat and switched it on and off. On and off. She could control that: on and off. For me it’s cleaning and food safety. I can do that.

Two Years Later

We have observed David’s death anniversary, August 12, visiting his gravesite and then peacefully working on our computers in Jim’s air conditioned office, with an amusing distraction from a skunk trying to take up residence under our kitchen porch.

Now, in early September, I find myself occasionally doubled over in emotional pain when I’m alone. Every time I listen to “It’s Quiet Uptown”, a song of intense grief in the musical Hamilton,  I have to sit down and sob. Once I start to cry just hearing the opening bars of the musical.
It’s not all dreariness. To an observer I’m sure I look normal; I’m high functioning; I laugh; I enjoy things. But my identity as a grieving mother lurks just below the surface, even a year later. It always will.

All through September the anniversary of David’s burial, a year ago on September 12, looms large for me. We had expected the UMass Medical School to keep David’s body for many months, up to two years, and were stunned and unprepared when we received a phone call on August 31, saying that they had finished the research and were ready to return his body. Arranging a burial date and choosing a coffin was very hard.


This year, on Monday, September 12, I spend the day alone, puttering around the house, dusting and sweeping, photographing Peter and Xiomara’s car for their eBay sale, practicing the piano for the first time in nearly two months, and writing. As with the death anniversary, the actual day is less painful than the anticipation, but plenty painful nonetheless.

Tender Memories and a Twofer Open House

Two Years Ago: Mid-August 2014

Still reeling from the August 12th news of the failure of David’s stem cell transplant, on which all our hopes had been pinned, we travel to a rental house on the Long Island Sound in Clinton, Connecticut for our annual “Summer Retreat” week with our children. Although David is neutropenic, with practically no immune system, it is safe for him to ride in the car and stay inside at the rental house.

In midweek Jim, David, and I drive back to MGH in Boston for a medical appointment. Sam tags along to visit with his longtime friend, Kyle. He comes in with us briefly to use the MGH internet network: the internet at our rental house is unreliable. Dr. Chen, the transplant doctor, sticks his head in. He’s surprised to see Sam, who lives in Utah, and says that there is a possible treatment, “donor lymphocyte infusion”. Similar to the original stem cell transplant, part of Sam’s blood will be harvested, but to collect white blood cells (lymphocytes) this time, not stem cells. Three units are harvested and frozen. After the proposed cytarabine chemo, when David’s own white cell count (including the leukemic ones) is at its lowest point, Sam’s lymphocytes will be infused into David, with the hope that they will identify the leukemic cells as foreign and kill them.

2016
My laptop’s screensaver is a slide show: when the computer is idle for one minute, the display shows all my photos, in random order. I enjoy watching them pass before my eyes. In fact, it’s tempting to stop working right now, long enough to start up the show.

One of my favorite photos is of David sitting on the floor at our Connecticut rental house. Andrew is in front of him and David is playing the doting uncle, though a little skeptical of Andrew’s sincerity. David is so present, so in the moment with his one-year-old nephew.
And David looks good. His beard is full, his frame no longer skeletal, his wry smile, well, wry. He’s gained 30 pounds from his low, though he’s still light at 6’1” and 170 lbs. Jim’s in the background, working on his laptop.

I’ve avoided working on this blog post for the past three weeks. August 2014 was an incredibly painful time after five months of intense stress. Dr. Fathi put David’s situation in dire terms. “If you were an older man, we’d be done now,” he says after David’s stem cell transplant failed. “But since you’re young, we can try some things”: toxic, maximum-strength, conventional chemotherapy and possibly clinical trials, if his heart damage doesn’t disqualify him.

And now, two years later, the painful realization that August 12, which was burned into my memory then, as an important date in the ongoing narrative, will now also be the yearly observance of the end of his mortal story.

I had anticipated with a mixture of joy and dread our 'Summer Retreat' this year. It would fall so soon after his first death anniversary, and awaken bittersweet memories of his last reunion. Then he had a minimal immune system and was quarantined. But he was alive and there was hope.

At the end of our Summer Retreat 2016 we hold a double open house. Sam and Savannah (Savam) were married last year, June 2, in the Bountiful Temple in Utah, when David was sick, unable to travel, and not expected to survive. I worried that David would die on their wedding day. Of course we didn’t plan an open house at our house that August. Instead of an open house, we held visiting hours at our home on August 16, just before David’s funeral at our church. There was no viewing; his body was at the U-Mass Medical School about to become a subject in a research project.

Annie and Shawn (Annli Shawston) were married June 10 of this year. With our leukemic son no longer alive,  we plan a summer party for both couples, a twofer.

It's a wonderful evening. For the first time, the ultra-thrifty (cheap, penny-pinching?) Johnstons hire a caterer. Xiomara arranges summery bouquets; R’el takes pictures. The weather invites us to spill out onto the deck to enjoy the perfect New England evening. The caterers turn the ‘fruit and cheese platter’ into a multi-level fruit and cheese creation, complete with cascading Concord grapes. A bright spot in a month of tender memories, a chance to share the joy of our newly married children with old friends.

Jellystone Park

The Hazen-Johnstons are having their annual Summer Retreat this week. We’ve just spent four days at Jellystone Park Camping Resort and will spend the remainder of the week at home with our children, spouses, and grandchildren.

Check back next week.

Ejection Fraction

Two Years Ago

Friday, August 15th, David has an echocardiogram (an ultrasound of the heart). His ejection fraction (EF), the percentage of blood that is ejected from the heart chamber at each heartbeat, is 43%. That’s an improvement from the end of May, but not the 58% expected in a 26-year-old Army medic. Daunorubicin, one of the very toxic chemo drugs David was given at Walter Reed, probably caused the heart damage. David’s been on heart medicine since his first echocardiogram at the end of May, when the EF was 36%. All spring he walked stooped over, like an 85-year-old heart patient.

            Dr. Amir Fathi, the 'leukemia doctor', spends a long time discussing David’s situation with the three of us. It’s very serious that the leukemia has returned. Because of David’s young age, Dr. Fathi will consider aggressive treatments and investigate clinical trials and see if David qualifies for any of them. The heart damage may disqualify him.

            Many months ago, before the leukemia, we rented a vacation house on the Long Island Sound, in Clinton, Connecticut, for our week-long Summer Retreat with our children (and grandchild!). We’ll drive there tomorrow. David can’t be out in public, but he can ride in a car and be with family in the house and yard.

August 12, 2016

For David’s first death anniversary Jim and I get up early and visit his grave. The grass has grown in and matches the color of the lawn; there's a freshly-dug grave nearby.

With temperatures forecast for the 90s, we close up our house against the heat, retreat into Jim’s office coachhouse, and turn the air conditioning on. During the day, five different friends bring flowers. In the afternoon my friend, Cami, helps me move David’s bed into the girls’ old room and reattach it as the top of a bunkbed. I set up a double bed in David’s room in preparation for our Summer Retreat next week. Although we’ve moved David’s bed, I will always call it ‘David’s room’. I’ve hung a photo of him on the wall: the portrait of him looking ‘extremely presentable’ at Peter’s and Xiomara’s wedding in 2011. Matt had it printed on glass as a gift to us; Annie held it for our family wedding pictures in June.

Oh, and just to make the day memorable, we discover a skunk sleeping under our kitchen porch. I leave the gate open and do internet research on skunks. According to the CDC (Centers for Disease Control and Prevention) they are one of the five "wild reservoirs of rabies", but this critter doesn't seem rabid. They rarely spray unless very frightened and cornered. Somewhat comforting, but what if this skunk didn't get the memo?
By nightfall the skunk has left. I move the extra recycling bins, the ones the skunk was napping behind, into the basement and hope the area doesn't become its den.

And thus begins our second year.

Blasts Are Back

Two Years Ago

               On Thursday, August 7, 2014, I post in my blog: it's Day 51 of the 100-day quarantine. That Sunday, Day 54, someone at church, (I'm grateful I don't remember who it was, so I harbor no ill will towards anyone specifically), tells me to cheer up: we're more than halfway through.

               On Tuesday, August 12th, the blood work looks good: the white blood cell count has risen from 2 to 3.7. But that evening the transplant doctor, Dr. Chen, phones after hours (always a bad sign). 30% of the cells are leukemic blasts. (Spoiler alert: exactly one year later, to the day, David will be dead.)

August 9, 2016

Dreary, slow morning. Mourning. I’m not conscious of thinking about David as I wake up. Even when I think, “oh, this is grief”, it’s diffuse. It seems like the flu, like a physical illness that has no emotional cause; it just is.
       Yesterday I added David’s obituary to FamilySearch, the online family history website, as well as his May 6, 2011 photo, taken at Peter’s and Xiomara’s NYC wedding, where he pronounced himself “extremely presentable”. When I get on my computer this morning, there’s his face, smiling directly at me. I have to close the file; he looks too alive.

Last evening someone asked me, “How are you doing?” I sense that she doesn’t really want an emotional weather report; she has major concerns of her own. But I decide to give voice to my feelings, or at least my situation. “Well, David’s death anniversary is this Friday.” She says she’s sorry, and I’m sure she is, but I feel awkward, revealing my wounds.

August 1st, I go to a Compassionate Friends support group. In July, just before David’s 11th monthiversary, I google grief support groups. When I see that they meet only once a month, I’m relieved: they won’t expect me to be ‘over it’ after the first year.

The small group is intimate and comforting. There’s a range of experience. (I won’t give specifics, since all that is said in the meeting is confidential, but suffice to say, there are parents who aren’t ‘over it’ years after the death and feel no shame in that. Really, how do you get over a life cut short?)
        I had read, in the grief literature the Good Shepherd Hospice has sent over the months, that there is a desire to speak the loved one’s name, tell his story. I haven’t felt the urge around other people, but it feels good to tell some of our story as a man across the wide table pushes the box of tissues across to me.

Today I take the T to Harvard Square and have lunch at Uno with my good friend, Anna. It’s only 90 degrees (it’s been a hot summer), so I walk home. Not a half marathon, but 9 miles. The bike path is primarily leafy and pleasant and I remember to bring a kitchen towel to wipe my face from time to time. Good honest sweat.

            Humorous postscript: I email my family to be sure and quote David accurately. Yes, he pronounced himself extremely presentable back in 2011. Matt writes: "While we're on the subject of funny things Dvu said, I believe he described the marrow biopsy as "the worst pain in America."  You had a blog entry last month  with it as "the worst pain in the world," which it may well have been, but David was not one to talk up his pain, yes? [ed. note: July 13, Eleven Months In]

            Point taken, Matt. Edit made.

Rollercoasters

Two Years Ago

We flew back home on July 30, 2014, from our Montana-Idaho trip.

From my blog:
It’s been a good trip and we are grateful David is doing well enough to be on his own. Thank you to our friends in Massachusetts for visiting him, taking the sacrament on Sundays, and driving him to doctors’ appointments.
And thank you to all our Western family who have expressed their love and support, and have kept us in their prayers.

Last of July, First of August, 2016

On July 22 I drive to the Good Shepherd Hospice in Newton, about 20 minutes away. Jaye, the grief counselor there, listens with empathy and gives wise counsel. Nine years ago her mother died,in her 50s. Jaye knows about grief first hand.
I pour out my heart to her and she listens. Then she gives me an analogy: the first year of grief is like a roller coaster ride in the dark. It can be scary, terrifying at times, but once you are on it there’s no getting off in the middle. You can’t see far ahead of you, you just have to endure it as it comes. During the second year, you’re on the same ride, but parts have a familiarity to them. From time to time the bottom may still drop out, but you’ve survived this ride before, so it’s easier the second time around. As the years pass, the roller coaster never goes completely away, but you may choose to get off for a while. A jarring experience or memory may unexpectedly pull you back onto it, as intense as ever, but later you can get off again.


Day-to-day I’m calm and I certainly manage. I’m certainly feeling an anticipatory dread as the days rise towards August 12th. Will it be as bad as I fear, the next drop? I’ll let you know in ten days.

Chimerism

Two Years Ago

After our Hazen reunion in Fort Benton, Montana, we head down to Yellowstone, then on to Island Park, Idaho, for a Johnston reunion of Jim’s siblings and families. We spend Sunday in Shelley, Idaho, where Jim’s mom summers and several aunts, uncles, and cousins live. We’re in Charlotte’s living room when we speak with David on Jim’s cell phone. He reports the latest chimerism testing of his blood shows that 80% of the blood cells are Sam’s and only 20% David’s. We’re relieved and thrilled.

Late July 2016

We have multiple days of 90 plus weather, and a brief hailstorm on Saturday. The storm cools things off for the night. Each night I open all the windows and close them in the morning against the heat of the day.

I’m still thinking about the upcoming twelfth of August. I’m not sure what to name it: ‘David’s Anniversary’ sounds so wrong. That word conjures up happiness: a remembered wedding, first romantic date, first day of sobriety, day we bought the house. He’ll never have those happy events to commemorate. And saying ‘David’s Death Anniversary’ is such a downer. In this American culture of positive thinking, the mention of death feels morbid. I don’t want to be the conversation killer.

Sunday evening we have our Weekly Gathering: twenty people around the two supper tables, including a beloved missionary whose parents have come from Arizona to tour New England before taking him home. It was a shock to me when, several months ago, he immediately knew what acute myeloid leukemia was. He developed it when he was 15 years old and had a successful stem cell transplant from his younger brother. Now he’s completed a successful two-year mission in New England. His parents come to supper and afterwards I talk with his mom. We share the experience of a loved son going through cancer. The helplessness of learning that just one mutant cell can multiply uncontrollably and cause such havoc. The sorrow of watching a son go through both the illness and the treatments. Their journey isn't over: the transplant has caused graft versus host disease. It's never easy. It’s comforting to talk.

It’s been a good week.

Memories of Montana

Two Years Ago

On Day 27 of David’s stem cell transplant, Jim and I fly west to attend a Hazen reunion in Fort Benton, Montana. It’s the 80th birthday of both my Uncle Herb and his wife, Judy, as well as their 60th wedding anniversary. My 91-year-old dad, my brother Timothy, sister Maggie, and her husband John stay in the charming Grand Union Hotel, while Jim and I rent a two bedroom apartment and host Peter, Xiomara, 15-month-old Andrew, and Sam. I’m thrilled to share the experience, meeting Montana relatives and visiting the places where my dad and uncle grew up, so different from Metro Boston.
We drive out to the abandoned ranch house where my dad was raised, and trudge up a prickly-stubble pickup-truck trail through the wheat field that surrounds the old homestead.

                                                        The ranch's abandoned outhouse

We crawl through a window and gingerly walk the old, creaky floors. I find three composition books: travel journals of Grampa’s. Inside there is no text, just lists of highway numbers he drove on in each state. For many years he roamed the country during the farmer's quiet season of winter.

July 2016

I finish Rare Bird, a memoir by Anna Whiston-Donaldson, describing her experience of losing her 12-year-old son in a freak drowning accident, and also read Letter to My Husband, a grief book written by Jill Truman in the year following her husband's death.

        While repairing a cracked plastic cake carrier, I get superglue all over my fingertips, making accurate typing on my laptop impossible for the evening. Next day I teach a Sunday School class and make our famous mac & cheese for our Weekly Gathering.

Eleven Months In

Two Years Ago

Tuesday, 9 July 2014
Day 22 of the stem cell transplant

David’s white blood cell count is down to 1.9 (reference range is 4.5 to 11), but the nurse practitioner isn’t concerned; fluctuations are to be expected. She does another bone marrow biopsy: David’s fifth. It goes better than the fourth, which David described to R’el as “the worst pain in America”.
And so we wait. Seventy-eight days of quarantine to go.

Tuesday, 12 July 2016
11 months since David's death

I take the T into Kendall Square and have a basil limeade with a new friend. I plan to take the T back, but decide to walk to the Harvard Square T station instead. Before I get there I decide to walk farther, to Porter. Before I get there, Alewife Station becomes my new goal. At the firehouse on Garden St, I bear left. Wrong! Instead of Alewife I end up near the Fresh Pond rotary. Cutting through the mall parking lot I take a steep dusty slope to cross over some railroad tracks. The extra sweat drips right into my eyes. They sting intensely for several minutes and it is an effort to keep them open. I pass by the station, having now walked four and a half miles, and resolve to continue to Arlington Center. Once there I eschew one bus stop after another and continue on to Lexington. I stay on the bike path for a mile past our house in order to complete a half marathon: 13.1 miles.
A half marathon on the eleventh monthiversary of David’s death.  A tribute to his life.

Sunday, 3 July 2016

My friend, Deb, sits next to me in Relief Society and says she finds her body needs 9 hours of sleep to heal. (She had hip surgery 7 ½ months ago.) She expresses mild frustration at that, but says it is what it is.
So, am I taking my body’s cue on healing as I sleep without an alarm or am I being lazy and self-indulgent? For today I’m going to go with the healing theory.
I return home from my three week vacation on Wednesday, June 30. Next day I’m ambitious, but by the end of the day frantic to tears with what I haven’t accomplished. Friday, my therapist guides me to realize that I have put my grief on hold for the three weeks and now yet another day with my overly-ambitious reentry plan.

I want to mourn. I’m scared to mourn. I’m in a more relaxed, calm place than eleven months ago; I fear going back into that very sad, helpless, painful place. The tears spring up while reading my current grief book: Rare Bird, by Anna Whiston-Donaldson. I feel relief in the tears.

My experience with Rare Bird is similar to my experience with An Unquiet Mind by Kay Redfield Jamison (a bipolar memoir: I collect them). Neither woman’s biography is anything like mine, but there is a fundamental resonance.
At eleven months into this, reading Anna’s description of the early days after the loss of her son helps me process mine.

Thursday, 7 July 2016

I’ve decided to take July and August off. What does that mean? I’m not even sure; I’ll discover that day-by-day. What I’m looking for is the expansiveness in my life that I’ve felt in the last four days. The luxury of reading and writing, of being comfortable spending time, hours of it, nurturing my creativity. I want to take a break and really experience the grief in this last month before David’s first death anniversary. I want to give myself permission to grieve, to feel, to move more slowly and live more deliberately.

Friday, 8 July 2016

What does healthy grief feel like? In Rare Bird, Anna Whitston-Donaldson suggests leaning towards grief rather than away from it.

Saturday, 9 July 2016

As I cook for our weekly Sunday supper (we usually have about twenty people here), I listen, for about the twentieth time, to the second act of the new Broadway musical Hamilton. When the Hamiltons’ son, Phillip, dies and the company sings “Going Through the Unimaginable”, I cry every time. Grief at losing our son. Grief at losing a young adult son, cutting off what could have been a long and bright future.
I listen to the CD twice more. The third time, I move from the kitchen and sit in the family room, letting my body shake with sobs.

Is it wrong for me to play that song over and over? In a month we’ll experience the difficult first anniversary of his death. I want those feelings out in the open, to face them, embrace them. It’s an internal battle for me. I’m the one who is still expecting me to be ‘over it’ and ‘stop wallowing’ by the first year mark. Lean toward it, Mary.

Dish Towels

Two Years Ago

On Day 15 of David’s stem cell transplant we see Dr. Chen. It is all good news: David’s white blood cell counts are 9.9, well within the reference range of 4.5 to 11. His red cell counts remain a bit low, but are holding steady. Next Tuesday David will see Jess Driscoll, the nurse practitioner, a sign that he is doing well and doesn’t require Dr. Chen’s constant attention
David moves slowly and gets tired easily, but he is able to move around the house, make himself a sandwich, go for short walks, and be home alone.

July 5, 2016

Folding clothes on my first laundry day since returning from the Northwest six days ago. The last day of my vacation I did laundry at Michelle’s and David’s house, thus avoiding the discouraging ritual of spending the first day back home doing laundry. Unpacking and resuming household duties is emotionally draining enough.

I reach to fold the ‘new’ dish towels and realize they are two years old. I bought a large package of them, and a package of dish cloths, in May, 2014, to minimize the use of paper towels in my super-clean kitchen by using a fresh cloth towel every day.

Handling the dish towels doesn’t make me cry. Reading On Loss and Living Onward does. I didn’t take it with me on my three week western jaunt. It’s on my Kindle, so that’s no excuse. I consciously didn’t read any grief books; I wanted to take a breather. Now I’m back.

Grief is a geat leveler. There is no highroad out.
Courage is a first step, but simply to bear the blow bravely is not enough. Stoicism is courageous, but it is only a halfway house on the long road. It is a shield, permissible for a short time only. In the end, one has to discard shields and remain open and vulnerable. Otherwise, scar tissue will seal off the wound and no growth will follow. To grow, to be reborn, one must remain vulnerable—open to love but also hideously open to the possibility of more suffering.

                             Anne Morrow Lindbergh, Hour of Gold, Hour of Lead

Blithely Passing Gas Stations

Two years ago, day thirteen

Our sister-in-law, Michelle and her two youngest: Brigham and Charlie, visit June 29th. David lived with them, in Wayne, PA, a suburb of Philly, when he volunteered for City Year, before his mission. We really appreciate them coming for one last visit before the big move to Washington State. We sit on our deck, soaking in the perfect New England evening.

2016
We spend the Johnston family reunion with Jim’s family, including Michelle, Brig, and Charlie. I stay the next week to visit two nieces, a Hazen cousin, and a cousin of my dad, (my first cousin, once removed, if you’re genealogically-minded).

Sunday, June 26th, after church and lunch, I head for Moscow, Idaho, to stay with Jenn’s sister Michelle, her husband, Will, and little 20-month-old Chloe (a.k.a. Clover.) It’s an inspiring drive over the evergreen Cascade Mountains and then 100 miles of desert: sage brush and the occasional stand of sage-colored trees. Taking Washington State Route 26 eastbound, I pass, in blissful ignorance, a gas station at mile 2 and spend mile 50 through 102 wondering if AAA works in the wilds of central Washington. There's a sign for gasoline around mile 50, but it states the hours: Monday through Saturday. I imagine pulling in and sleeping in the car till Monday morning. Around mile 102, I spot a white minivan with a young mother tending her infant at a primitive rest stop (No water, just two outhouses). “Do you live around here?” “Well, in Pullman.” “Is there a gas station open anywhere near?” “Yes, in Colfax, if you have a credit or debit card." When I pull into it, I’ve still got a quarter tankful of gas, but I’m relieved to fill it up. Colfax, Washington is just 25 miles from Moscow, Idaho, but I'm taking no more chances.

Reminds me of our 1995 cross-country trip. (15,900 miles, 48 states, 1 Mexican state, and 3 Canadian provinces). In South Dakota I blithely pass a gas station; I still have several gallons of gas in the car. We drive through miles of sparsely populated reservation and I, silently stressing, try not to convey my ever-increasing anxiety to my six children (ages 4-14). Am I going to strand us all in the wilderness? I finally give up, turn the minivan and tent trailer around, backtrack, and roll into that same gas station, practically on fumes. East Coast assumptions can get you in trouble in the West.

Boring Days Then, Evergreen State Now

Two Years Ago

Starting June 17, the day after David’s stem cell transplant, I drive him to Cox, the outpatient leukemia clinic, twice a week. Each time, they draw blood, count his white and red blood cells, and his platelets (which have clotting agents to stop bleeding), and measure his blood level of tacrolimus, an immunosuppressive drug given to prevent David’s residual immune system from attacking Sam’s stem cells. At home, David injects himself with neupogen to boost those stem cells’ production.

2016
I spend a lovely two days with Kathleen in Ballard, Washington, which was originally an independent town (much like Hyde Park, south of Chicago). Now it’s northwestern Seattle. It has a charming downtown and we lunch at an excellent Mexican restaurant. I buy bandaids for my chin.

Thursday, June 16th, I pick up Peter, Xiomara, Andrew, and little Victoria, at the SEA-TAC airport and head for the rental vacation house on Lake Sawyer in Black Diamond. Friday we visit the Museum of Glass in Tacoma and tour the Seattle Underground on Saturday. There are some cloudy days, but that’s what we expect in the Northwest, right? We take turns cooking for 26: I ambitiously plan to make a Cook's Illustrated chicken parmesan recipe; it goes well. Since I cut my chin in Sacramento, I don’t swim in the lake.

After the reunion, Jim goes back to work in Lexington while I stay in Sammamish to visit relatives. I head back to Tacoma to see my niece, Jenn, where we visit a playground, for her two boys, and then a sandwich shop for lunch. Nine-year-old Paxton blows me away with his knowledge of the Revolutionary War. He even knows about the Fortification of Dorchester Heights, when Henry Knox dragged 60 tons of cannons and other guns from Ticonderoga over 200 miles to Dorchester Heights, overlooking the Boston Harbor and the occupying British army and navy.

        Friday, June 24th, after walking David's and Michelle's dog, Bo, I head for the eastern shore of Lake Sammamish and walk 13.82 miles in 4 hours and 8 minutes. My half-marathon (13.1 miles) time was 3:55.