(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 2^nd, 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.