Tag Archives: multiple myeloma

Sep 28 2016

Grief at Five

“We feel mad and sad,” these were the words my five year old daughter articulated to my mom’s neighbor when Mom couldn’t respond to his question the day after my dad passed.  Parker’s wisdom in the moment demonstrated some maturity and emotional understanding of what we were all experiencing.

And just as everyone in the family has shown moments of strength, we have all succumb to the weight of his loss in different moments too.  For my daughter, she began grieving the changes to her Papa long before he had been diagnosed with cancer.

Parker and Papa shared rituals.  She would get the stick and flashlight for Papa and they would get down on their hands and knees to get kitty toys out from under the stove.  She would bring him the DVD case and together they would put in a movie and she would snuggle on his lap to watch.  Parker would sit with him after dinner to have dessert and he would allow her spoonfuls from his bowl of ice cream even when she had her own.

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Papa would let Parker interrupt his work in his home office to let her sit in his chair and play on the computer or make copies of her hand on his printer.  She would get excited when Papa would fill up the teapot and assist by getting out the honey and a spoon then patiently waited for her helping of honey.  Parker started calling him “Poppy,” a term of endearment he adored.  And a favorite ritual before we left their home was for Papa to pick her up for a giant sandwich hug with Poppy and Nana.

When my dad injured his back we made modifications to the sandwich hug.  Instead of getting down to play on the floor, she found joy in getting to play in his remote lift chair.  She naturally became more gentle with him and found on some days when he was more comfortable, she could still snuggle in to watch a movie with him.  Parker asked a lot of questions and mourned why Papa couldn’t pick her up anymore.  I tried to reaffirm it would only be a matter of time, he would heal and things would be back to normal.

poppyparker

30 July 2015 – One month before diagnosis.

This time last year, her worry became even more evident, she questioned daily when Poppy’s back would be better.  He was diagnosed with Multiple Myeloma about a month shy of Parker’s fifth birthday and it seemed too complex to try to explain what was happening to her Papa.  “The doctors are helping Papa because he is sick,” seemed the only rational thing to say to a five year old.  Then we would talk about praying for him to heal and for his back to be all better again soon.

Repeating this conversation seemed to temporarily satisfy her and my dad improved through the autumn of 2015.  He was showing signs of healing and getting around easier.  Parker understood his limitations and adjusted to how their adoration for each other was changing.  A huge setback came just before the new year when a lesion on his femur broke with only the weight of his body standing.  With the exception of medical appointments, Papa lived in his own personal medical suite upstairs.  As the months passed in late winter and early spring, Parker went upstairs less and less.  I could see how nervous she felt in his presence and witnessing him suffer.  I made attempts to encourage their interactions with playing games or showing him a dance she was practicing in class.  Right or wrong, I tried to explain what was happening to his bones in five year old terms.  For months straight she would pick out the same bedtime story “Magic School Bus: The Human Body,” and often stopped on specific pages displaying a graphic of a skeleton to talk about Papa’s bones.  It was her own way of coping and trying to understand.

Dad never rebounded from the surgery, medications and treatment.  He passed at home in his sleep days after Easter.  Since it was early in the morning when I got the call, I left before Parker woke.  My husband and I agreed not to tell her, instead sending her to school so we could have a day to sort out arrangements.  The following morning, I dreaded telling Parker what happened to her beloved Poppy.  I worried she wouldn’t understand what death meant as she had no memory of losing someone.  We sat down with her in the kitchen and I did my best to conceal my tears and calm my voice.  Her tears were immediate as though she completely understood the gravity of him being gone.  We embraced and tried to turn our sadness to appreciation for him to no longer be in pain.  When we told her we would be going to Nana and Papa’s house for the day Parker begged to go to school, a place where she could be happy and forget.  She didn’t want to go to the house where Papa is supposed to be and him not be there.

As always, the opportunity to see her cousins and trumped the fear of the empty house.  She played with her cousins while the adults seemed to float around the house without intention, numb from the turbulence of the last year.  After her cousins had been gone a while in the late afternoon, Parker came running from upstairs sobbing.  Mom and my dad’s sister and I all felt the ripple of emotion and broke down with her.  I believe she had been upstairs to play in his lift chair, a game that was no longer fun with him gone.

In the days and weeks following we cried together frequently.  We expressed gratitude he was free from pain and we talked about how he would always be with us.  I encouraged Parker to know he could be with her whenever she felt she needed him.  On the way to school she would say she was going to bring him with her and talked to him on our way there.  She joked “He’s going the wrong way, no Poppy that’s not the right turn…”  And when we talked about him being with his mom, she would sometimes bring Grame along to school too.

It seemed the tearful sadness of losing Papa was lessened during the early summer.  She could talk about him without the heavy emotion and I was relieved she was coping so well.  Then there were times I wondered if I was doing everything right to help a five year old with grief.  On a few occasions she got stuck looking at pictures and would break down unable to catch her breath.  I validated her feelings by recalling stories of him and the funny things we would remember him by to help in the moment.

I had been concerned maybe my daughter was reflecting my emotions, maybe she was feeling the grief I was immersed in and so I have been careful to not initiate her thoughts or feelthelightfeelings.  I know her moments of grief are her own because many times I am blindsided by her eruption of sadness.  Like a peaceful ride in the car interrupted by a quivering voice in the backseat “I miss Papa.”  Parker recently began associating one song to Papa, a song she has loved for a long time but now can’t manage to hear without thinking of how much she misses him.There are even joyful celebrations where she turns to despair because Papa is not there to share in it.

The variety of ways Parker has expressed her heartache demonstrate how much she deeply loved her Poppy and also resemble the complicated way our whole family is coping with his loss.  In the last six months there have been times when talking about him was easy and then there are days when even the sight of a bird soaring can cause hysteria.  We know we each have individual triggers which can cause deep sorrow; a song, a date, a place or any synchronistic event.  And then there are other waves of grief which don’t seem to have a pairing, the misery builds to a peak and subsides.

The helplessness I felt with my dad in the last year of his life has transitioned to feeling helpless to support my mom and my daughter.  I want to always have the perfect words to make them hurt less.  And just as there were days I couldn’t do anything but stare at my dad, there are moments I am paralyzed in the faces of my mother and my child.  I am managing as best I can and accepting the unpredictable nature of grief and how it is impacting us in unique ways.  I understand it will get easier over time, though the waves may be less intense or less frequent we will ride these waves of grief indefinitely.

My hope is the waves Parker experiences will calm much sooner and easier than my own.  I want her to be able to remember the love he had for her without the deep sorrow of missing him.  I worry her memory of their rituals will fade, though I know she will never forget how much she loved Poppy.  And I know the pride he had in her will live on forever.

 

 

 

 

 

 

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Sep 9 2015

Teddy Bear and the Nightmares

babyWhile both of my parents are significant influences in my life, I have to give the majority of the child rearing credit to my mom.  Mom fed us, dressed us, bathed us, got us to school, chauffeured to activities, read bedtime stories, fixed boo boos, and knew all the details of her three children’s lives growing up.

There are some memories I have of my dad during my childhood which stand out, like the time I ran screaming from him when he asked to do my hair during a summer trip to Colorado.  It was in fact the first and only time I can recall him showing any interest in doing my hair and it was my mom’s job…  Or so I thought, until she pointed out how upset he looked at my response.  Remorsefully I agreed to let him try to which he responded, “Nevermind.”

My dad may not have been successful at styling his daughters’ hair, though, he did have a knack at resolving my childhood nightmares.  I had a reoccurring nightmare which likely stemmed from cartoon watching and stranger danger lessons in early elementary school.  To a six year old, the Care Bears being kidnapped was a wickidly frightening dream and one I would wake up from crying.  Whether from brilliant parenting insight or just an effort to keep me from trying to sleep in my parents bed, my dad reassured me in a way I found strength and confidence.  My dad told me to fall asleep holding my teddy bear up to my head and it would scare the bad dreams away.

It was a simple piece of advice from my dad and helped me sleep soundly through my childhood.  A few weeks ago I was fondly remembering how this memory made an impression on me when the realization hit me, my dad lied to me.  The teddy bear didn’t scare anything away, it was a false sense of security which tricked me into sleeping.  Now some people might say “so what, you got to sleep.”  Except my parents raised us with the belief and my dad maintains it is important to never lie to children.  He stands by the necessity of being truthful, not misleading with fairytales or disception.  Granted, this does not mean full disclosure to kids, there are times to limit topics into adult conversation.  For my parents it was important to set the example for always being honest.

In a quiet moment with my parents I broke the silence by asking my dad if he remembered this childhood advice.  I told him how I affectionately remembered the influence it had on me and my nightmares, he closed his eyes and smiled.  “It was a lie,” I pointed out, “The bear didn’t scare anything away, you lied.”  I felt so cleaver to finally uncover the one example in my lifetime where my dad was intentionally dishonest with me and hung to the thought for only a moment.

“It wasn’t a lie,” he said softly, “I helped you to change your perception so you weren’t afraid.”

As soon as he said it I understood what he meant, since a fear of a dream is unique from real danger.  The power I was given by the teddy bear wasn’t false at all, I was able to envision the protection it served me and it did provide me safety from my Care Bear nightmare.  The change in my perception gave me the confidence to control how I felt and what I didn’t need to fear.

Our conversation was broken up by a lab technician coming into the hospital room to take more blood samples from my dad.  He laid weak under the florescent lighting on an emergency stretcher, medical machines beeping with IV fluid being flushed through his body.  Dad’s skeletal frame had been deteriorating over the past six month, starting as a back ache escalating to full blown crisis.  Knowing what we know now, I wrestled with the guilt of thinking he just wasn’t trying hard enough to get well.

Dad was admitted to the ICU and the following few days were met with a whirlwind of doctors, blood tests, CT scans, X-rays, medicines and finally a bone biopsy.  For a man who had escaped injury and illness throughout his life, it was a nightmare come to life to watch him dependent on help from others.  My mom, siblings and our significant others rallied to support Dad during his hospitalization.  After an emotionally taxing weekend, we surrounded my dad when a doctor confirmed the diagnosis of multiple myeloma.

Six days after entering through the emergency room, Dad was sent home and began preparation for cancer treatment.  Taking advice from my sister-in-law to heart, I have not looked into the statistics of the disease and only focused my attention on gaining knowledge of treatment.  I am not naïve about his frail condition or the long road ahead, instead I am making a choice not to dwell in what we cannot change.  Dad’s advice of the teddy bear and nightmares seems to be relevant even more today.  By changing our perception we can develop strength and avoid fear, keep our minds open for opportunities and be confident about handling what the future brings.

My dad continues to reinforce life lessons and bring a positive influence into my life, as does my mom.  Through all of this, my mom has stayed the consistent caregiver.  She makes meals, helps dress, chauffeurs to doctor’s appointments, and maintains all the details of dad’s needs.  Mom even helps him with his hair.

For family and friends who are interested in knowing more about his diagnosis and treatment, Dad and I are keeping a journal to document the road to recovery on Caringbridge.  You can find him by searching his full name.