(long post unrelated to adoption - just something I wrote so that I won't forget)
Beansie…
I distinctly remember trudging up the hill on our street to the neighborhood
pool one day during July 2011. As I pushed probably 90 pounds of boys in
a stroller up the hill, I commented to Justin, “Why is it that I am 25 years
younger than Mama, but have about 1/3 of her energy?” My mama, who
we called Beansie, has been described as the “Energizer Bunny.” She ran,
she walked, she played tennis almost every day, she biked, she swam, she mowed
grass, she built yard ponds, she pulled grandchildren in wagon races around the
backyard. She won races for her age group. She toured
tirelessly on vacations. I don’t think I ever heard her say that she was
tired. I also remember thinking, during the summer of 2011, about how
lucky and blessed I was. I specifically recall thinking how grateful I
was that nothing terrible had ever happened to my family. Then came the horrible diagnosis …
An
MRI on August 15, 2012 showed a butterfly-shaped tumor deep in her
brain. A biopsy on August 22, 2011 revealed the worst possible
diagnosis: Glioblastoma Multiforme Stage 4. The neurosurgeon
came through the doors and bluntly said, “It’s not curable” and then left us floundering in the middle of
the crowded Day Surgery waiting room. We met with the same doctor and his
staff the following week and they explained that the “standard of care” for
this incurable form of brain cancer was targeted radiation and chemo and that
they could provide for us this “standard of care," but their faces and demeanor told us that they had written us off. I barely remember
putting one foot ahead of the other as we left that office that day. We
never returned.
The
“fixer” in me went into full “fixer” mode. Despite dire internet postings
and scary medical information, I scoured the internet in search of some
possible hope. I looked for information on GBM, for potential clinical
trials, for the best treatment centers, for any stories of survivors (sadly,
there are not many). I called the Preston Robert Tisch Brain Tumor Center
at Duke and asked whether they would review my mom’s records. They agreed
with the prior doctor that surgery was not an option, but they said they could
provide some different treatment options and they shared their view that while
everything you read tells you that GBM is a death sentence, that they refuse to
look at it that way and that they are working toward a goal of finding better
treatment options and, ultimately, a cure – during our lifetime. Armed
with that tiny shred of hope, we went to Duke in September 2011 and put into
place a plan of treatment. We followed up at Duke in December 2011 and
then in January, March, May, July and October 2012.
I
remember well the feelings of overwhelming nervousness and dread every time I
flew to Duke. We would sit in the lobby of the Cancer Center and make
small talk, but my thoughts were constantly on how I would react and how I
could somehow work to make things alright if the appointment yielded terrible
news. As it happened, the day and the news I feared most never came
during a trip to Duke. The tumor had shrunk following radiation
therapy and every subsequent visit to Duke showed no new growth. Good
news – except for the “deficits” caused by the tumor and the impact the disease
had on quality of life. Post-diagnosis, Mama seemingly aged 20 years overnight. She never drove again, never
played tennis again, never ran again, and never even walked without stooping or faltering. She never went anywhere
alone. She had trouble finding words and remembering what she had just
been told. The person we had, in prior years, jokingly called “motor
mouth,” turned into a person who mostly only responded to questions vs.
initiating conversation. She would often cry, asking us “what happened to
make me so pathetic?” She never remembered her diagnosis or why she
was constantly visiting doctors’ offices. She talked the most
around her grandchildren, but even that was totally different than "before." She could remember some of the words to old Disney
songs or nursery rhymes on CDs in the “team bus” in which she and Daddy picked
Jackson and Graham up from school every day. And she always wanted
from them “many kisses.” She watched Jackson and Graham play, she
came to visit my nice Celia, and she held my nephew Sam. Jackson and Graham and I would
wave from the carport steps every day as she and Daddy pulled away in the car
and we would yell – until their car was out of sight – “we love and we
love!!” I remember trying to imprint into my mind the image of them
sitting in the car and driving away and waving. A far better image
than that from the early days post-diagnosis when she would dissolve into tears
as they drove away - likely wondering why her life had so greatly changed, but
not remembering the reason.
Our
last trip to Duke was October 9, 2012 and the PET scan done that day was
“cold”- meaning no tumor activity in the brain. The old tumor was
still there, but still dormant. Not even six weeks later, our
ever-present fears were realized when Mama had several seizures and was
admitted for what turned into a two-week stay at the hospital. MRIs
showed new tumor activity in a nearby part of her brain and the word from Duke
was that we could try one more form of chemo that they thought “might have a
tiny chance of slowing down the tumor” or we could stop treatment
altogether. The prognosis with the chemo (known to have severe and
debilitating side effects) was 3-6 months. The prognosis without
treatment was also 3-6 months. An easy decision. All treatment
stopped.
Mama
never wanted to go back to the hospital and Daddy made a promise to her that he
would work to prevent that at all costs. After the hospital stay, she
could not walk far on her own and spoke only a few words. I searched stores and stores and Laurie and I
bought a chair for her to sit in to spend most of her days. By Christmas,
she could not feed herself. In January, we hired a day-time caregiver to
help Daddy. He worked tirelessly to make even those days as “normal” as
possible. He got her up every day, dressed her, and took her to the
kitchen for breakfast. They still went out to breakfast on Saturday
mornings. They still picked the kids up from school. He made
coffee for her every day and fed it to her with a spoon “because she likes to
have coffee.” (his words). He loved and cared for her in ways that were
at the same time admirable and heartbreaking. By the end of January, Mama
could no longer walk. I came over in early February and moved all of the
furniture to accommodate a wheelchair. By mid-February, her speech turned
to nothing but a sporadic “yes” or “no”. I can’t remember hearing her
speak again after that month. On March 2nd, we all went to breakfast
at a place that was our Saturday-morning tradition. That morning, Jackson
looked into her eyes and smiled at her. To our shock and surprise,
she looked at him and smiled and put her hand (which she had not moved in
several weeks) on his arm. We took a picture of that moment, but even
without the picture, I’ll never forget it. She never smiled at any
of us or looked into our eyes again. I told Jackson that it shows how
very special he was to his “Beansie” – that she used some of her last remaining
strength and coordination to smile at and to try to hug him.
March
marked an even greater decline. We spent every Saturday morning –
December through March – watching movies and coloring pictures around her
chair. The TV was on, but she no longer focused on anything. We
talked and laughed and tried to make the time special. And, despite the
overwhelming sadness of the whole situation, those mornings were special.
Laurie and Jackson and Graham and I (and sometimes Celia and Sam) sat at
Mama’s feet to watch our family’s old standbys: “The Sound of Music,”
“Heidi,” “Father of the Bride,” “The Parent Trap,” and “The Three Lives of
Thomasina.” Although Laurie and I had seen these movies with Mama
hundreds of times, this was Jackson’s and Graham’s first exposure to these
movies. We sat on stools at Mama’s feet and tried to engage
her. We held her hands. We talked with her caregiver Winsome and
learned from her invaluable lessons about love and caring for others. The
children covered the wall near Beansie’s chair with notes of love and pictures
of and for their Beansie. She lost the ability to move her body, to hold
up her head, and, eventually, to swallow. She was literally a tiny,
helpless shadow of her former self. Despite all this, until two
weeks before the end, Daddy lifted her into their car (“team bus”) every
afternoon and let her ride with him to pick up Jackson and Graham. She
could no longer speak, but I hope she knew that they were in the car with her.
The last day Mama and Daddy came together to pick up Jackson and Graham, I
rushed home from work to try to see them before they drove away (with Uncle
Terry staying to help the kids out of the car and into the house and to keep
them until we arrived). Mama had her eyes closed and I gently opened her
car door so as not to startle her. I said, “Thank you for picking up my
geese (what Laurie and I call our children) from school today.” She
opened her eyes for a minute. We backed away from the car and yelled
“we love and we love” as they drove out of our driveway for the last time.
Easter
Sunday was a rainy, cool, dark day. Justin and the boys went to church
and I went over to Mama and Daddy’s house. I brought a poetry book that
Mama used to love and I read to her. She had not been awake in about a
week and had, days before, been relegated only to the bed. She slept
beside me as I read the poems she so loved and as I described the illustrations
to her. I taped a picture to the headboard of the bed that read,
“Happy Easter Beansie. I love you! Love Jackson.” That was
one of the saddest days. I thought of Easter celebrations and egg hunts
going on in other homes and in other yards, as the sun came out.
Meanwhile, behind closed doors, there we sat in a dark room with soft music
playing - Daddy and I fighting back tears and our hearts immeasurably
sad. I looked at the Easter drawing from Jackson and I knew the hope that
was represented with each strike of his crayons. He had been told that
his Beansie was getting ready to go to heaven, but he didn’t want to believe
it. He wanted her to see his Easter wish. That Easter day in the
back bedroom was a poignant reminder to me that you never know what may be
going on in the lives and homes of others. Where there is joy in
one life, there is sadness in another. Where one life is beginning,
another one is ending. I guess that’s what life is about, but it doesn’t
lessen the feelings of the people on either end of the spectrum. It was a
good reminder to me that I should be kind to others – always – since I have not
walked a mile in their shoes.
Monday
morning brought a visit from the hospice nurse and a comment that we were “near
the end,” but nothing definitive as far as a time frame. Winsome thought
it was very close. I hoped it would happen while she was there with
Daddy. She was such a steady presence there and her calm nature and
loving ways brought a lot of comfort to him. I bought some medical
supplies that hospice didn’t have and stayed for a while sitting on the bed and
then, later, watching a TV show with Winsome. That afternoon, I picked
Graham up from school and decided to go back over to Mama and Daddy’s house
before driving him home. I thought that seeing Graham would possibly bring
a little brightness to Daddy’s day. Graham went first in to see
Beansie. He asked me why she never opened her eyes. He sang a song
to her about little ducks and then, as the song ended, he asked if we could
pray for her. This is not a typical request of his, but his class had
been praying for a classmate who was out having surgery and I think the idea of
praying for others rubbed off on Graham. I fought back tears as he softly
prayed this prayer: "Thank you God for making Beansie. Help her to
find the tennis courts. Help her legs to work so that she can walk and
run on her own again. Please God, don't take her to heaven.
Amen." As he scrambled off of the bed to go find Daddy,
I looked at Mama and said, “He loves you so much and doesn’t want you to go to
heaven. But, I told him that sometimes people have to go there to get
well.” She didn’t show any sign of having heard us. I pressed
her hot hand between mine and listened to her rapid breathing, somehow knowing
that this was the last time I would see her alive. I laid there for
a while and then said, “We love you Beansie. We love and we love.”
After that, Graham and I went home. I laid awake most of the
night, praying that God would take her to heaven so that she would not have to
suffer any more.
The
phone rang at 8 a.m. Daddy had been lying next to her and had put Mama’s
hand out and was moving her hand to pet Jo’s fur. As he did that, she stopped breathing. It was over. Jackson later asked me if Daddy saw Jesus
at that moment when Beansie stopped breathing. I thought about that for a
while before answering.
We
still don’t understand why this happened to someone so very healthy and full of
life – someone who was rarely ever sick and who had the physical strength of
people twice her size - someone whose own parents lived close to and into their
90’s. I don’t think we will ever understand. As Daddy says –
our only choice is to carry on and to try to do the best we can. We
have so many memories of her and there are so many things that she made for us
and did for us and built for us and planted for us. We see her sweet
gestures and good deeds everywhere: in little framed sayings on kitchen
shelves, in homemade refrigerator magnets, in crafts and framed verses our walls,
in the letters she lovingly painted for our children’s rooms, in wreaths on our
front doors, in ponds in our yards, in morning glories coming back every summer
along our decks and fence lines, in the flying birds “flying” beside our
driveways, at the little tables and chairs she made for her grandchildren, in
the little stools and wall shelves she built in her “workshop,” in the stepping
stones she poured and decorated for our yards, in the flowers planted all
around, and in the clover patches that come through the grass in the springtime
and out of which only she could ever find four-leafed ones. We’ll think
of her whenever we see TV trivia games shows or talk shows, whenever we visit
New York City, whenever we go to the beach, whenever we see vacationers riding
along on old-style bikes, whenever we see a bag of MnMs or a spiral notebook
filled with writing, whenever we have a bad day and get out the ingredients for
cookie dough. She lived a happy, unassuming life, bringing joy and smiles
to the faces of almost everyone she met. As I said at her memorial
service, she lived out the words of Mother Teresa: Not all of us can do
great things. But we can do small things with great love.
A
very dear friend of mine, who can relate to our feelings of loss, wrote this
to me the other day: “My continuous prayer is that each day the grief you feel
is outweighed a little more by a happy memory.”
I’ll
hold onto that prayer for all of us.
