This Posthumous Child

In the aftermath of September 11, 2001 I watched the news in horror with most of the world but I was paying attention to the pregnant women. I was saddened to know what these children and parents were going to go through. I was curious to see how the children who were born after would be as they grew up. After 10 years the research started to come out and that is now where I turn for a lot of my information. But soon after 9/11, thinking about all these children and what resources their parents would have I started my search for information. I started with who are we? What is our label? What are we called – children born after the death of a parent? I was shocked by how long it took me to find the answer. There were no books. No magazine articles. I found the term, “posthumous child” in legal documents.

I am a posthumous child.

Finding those words was life changing. When I saw how little there was out there about this club I belong to I decided to change it. That is when I knew I had to write a book and get the conversation going. Let people know that we are here and we have a very unique perspective on the world. And to be sure that a child looking for answers will be able to find out what they are called the book will be called, “This Posthumous Child.” It may change slightly or be added to but that is the base.

In the course of writing my book I need to do interviews, lots of interviews. I have been quite nervous to approach people about doing the interviews. Okay, scared. I admit it. I have fought with the notion that the story of my family is not mine to tell. That people will think I’m crazy or negative for bringing up the past. The thing is, for me it isn’t the past. It hasn’t happened yet because I don’t have all the pieces. I’m fully aware that other people don’t need all the pieces. Most of the time I wish I could be one of those people. But I’m not. I need the pieces. I’m looking into why I have the need for the pieces. I haven’t got it all figured out yet but how it appears at this time is connected to the fact that I was in the womb during a massive trauma.

My Mom had PTSD and I have the markers of PTSD. The weird part is that the parts of me associated with PTSD feel like a layer on top of my own personality. I don’t feel entwined in it. It doesn’t own me most of the time. Most days I can separate myself from the triggers and the feelings. I can see it coming like a cloud and sometimes I can avoid the worst of it. As I have acknowledged its existence and begun to accept it I have been able to work with and learn to take control of it. I do know that there were aspects of my childhood that added to the PTSD symptoms, including lack of infant bonding and care, but based on my reactions and triggers I can identify that its origin is from the womb. It is all very overwhelming and even doing the research is difficult some days.

I am continually looking into how trauma affects the unborn child and if anyone has information on that subject or knows of a research project I can get involved in please let me know. What I do know at this point is that not only is it food and nourishment and emotions that goes through the umbilical cord it is also possible to pass PTSD through DNA by epigenetic mechanisms. Being born after the murder of my Dad did more damage than if I had been born even a day before. The fact that my Mom didn’t breastfeed me probably prevented more damage being done. The reason she didn’t breastfeed was because of the medication she was being given at the time.

I have always struggled with this part of my identity and have wanted no part of it. Denial has been my friend in this area of my life. I have always had problems around the anniversary of his death and associated it with my Mom. After she passed away I really hoped that it would go away. It didn’t. That is when I knew that I had to acknowledge the struggle as my own and investigate further and figure out why and how I could be so deeply impacted by events that happened before I was born. We’ve known for years that Mom’s emotions are passed on to a certain extent but to acknowledge that PTSD can be passed through DNA, especially in the 3rd trimester is somewhat new research.

What this means for me, as far as I know now, is that I was left with an imprint of what she went through. I didn’t live through it in the physical sense. I lived it through the emotions and hormones of my Mom. For 13 days I felt what she felt. I was left with these feelings and emotions that have no physical memory. I have no idea where or how to place them. There is no sequence or explanation. My mind is constantly searching for the source of the emotions. Some days it is quite difficult to concentrate or focus if my mind has been triggered by something. What made it worse is that I wasn’t given an explanation when I was a child so the emotions continued to not have a place or path to follow so they could be resolved. This plays out in other areas of my life. Being detail oriented, searching for and finding patterns, always needing to know all of the steps of whatever I am reading, watching or working on, loving mysteries, whether reading or watching them and using every kind of puzzle or mystery as a way to make sense of things.

As I continue in my search and discovery I am finding myself less ashamed and more intrigued by my uniqueness.

Afraid of the dark

As a child, night seemed to be when the fears and emotion came out for me. Nightmares, fear of being attacked and killed were a nightly occurrence for as long as I can remember. There were many nights that I was convinced someone was in the house or my room. I would kick my bedroom door open to be sure that no one was standing behind it, then systematically look under my furniture and open the closet door ready to run just in case. If my curtains were open I had to close my eyes while I closed them in fear that I would see someone looking back at me in the darkness. I always slept with my back against the wall to be sure that I couldn’t be snuck up on. Now I sleep with my back to Pasith – he is now my wall of protection. The bizarre thing is that aside from what happened before I was born I had no experience with anything frightening. I can’t tell you where the fear came from it was just always there. There was no obvious reason for me to have these thoughts and fears and I was the baby who was supposed to grow up without wounds because I wasn’t born when my Dad was killed. So no one knew, or wanted to admit, how deeply I was affected.

Several times a week I would wake in the night from a nightmare or convinced someone was standing over me and I would either need to go to the bathroom or I would have wet the bed and I would get changed, go to the bathroom and then go to my Mom’s room and sleep the rest of the night with her. All while shaking from fear that someone was just out of my sight. The farmhouse on the hill was the only place that I don’t remember ever having nightmares or feeling fear. It was the only place I ever felt completely safe.

One very clear memory I have is when I was 3 or 4 we were visiting family and I had been put to bed for the night. I could hear the adults talking around the table down the hall. I was scared and needed my Mom. I walked down the hall and stood there for a while hoping that my Mom would just come to me, willing her to just know that I needed her. I didn’t want to have to call for her because then everyone would hear me. I knew that they wouldn’t understand, I didn’t want to see their looks of disapproval. I just wanted my Mom. Finally, I couldn’t stand it anymore and I called for my Mom just out of everyone’s sight. There was silence. I called for her again. Then I heard her ask, “Should I go to her?” And someone (I won’t name who) said, “No. You can’t keep going to her. She will go back to bed when she realizes that you’re not going to run to her.”

My Mom didn’t come. I was heartbroken. The adults won and I did go back to bed eventually. That experience is as clear to me as if it had happened yesterday. It taught and shaped me. I learned that I was alone in my fear and that I was not worth getting up for. Rejection was reinforced. No one cared that I was scared and there was no point in telling anyone. I learned from this experience and others to shut down and not show emotion. I learned not to cry or show vulnerability. It didn’t do any good anyway. No one was coming to help me. After that I still went to my Mom’s room when I was scared and thankfully she didn’t turn me away, but I closed down. I learned that my emotions weren’t wanted. So instead my fear came out as anger, because we should all know by now, no matter how hard you try the emotions come out one way or another.

This one experience wasn’t the only thing that caused me to shut down, there were multiple contributors, but it is the one that stands out the strongest in my mind. I am not saying that if you don’t run to your child every time they want you that you are dooming them to a feeling of rejection and fear. What I am saying is that if a child doesn’t feel safe and confident that they are loved, the smallest feelings of rejection can be compounded to the point of affecting present and future relationships and the ability to show emotion without fear of rejection and repercussion. This is a long journey that I have just begun.

In Remembrance

About a week ago I went to my home town, Moosomin Saskatchewan, with a friend.  I went to ask some questions, have some quiet and a break from reality.  Moosomin is and always has been my go-to place for rest and recharging.  I gave my friend a tour of the town and introduced her to some of my family.  I was reminded that my Great Uncle had been moved back to the nursing home in town.  My Dad’s Uncle and Aunt, among other siblings and friends, were there for my Mom and family when my Dad was killed.  They took my sister home with them the day it happened.  They helped with the farming, babysitting and paperwork and later with moving.

I remember going to their house often as a kid.  I loved it there.  They were so kind and open to us.  I remember my Great Uncle sitting in the living room watching TV while we sat chatting in the kitchen.  I would sneak in behind his recliner but was too nervous to sit with him.  I was very afraid of almost all men, even when I knew them.  I noticed his tattoos on his arms and I was fascinated by them – I didn’t know anyone else with tattoos.  At one point I asked my Mom why he had drawings on his arms and she told me they were from WWII.  He was a soldier and been in France.  He got tattoos with the other soldiers.  I had never really heard about the war, much less known someone who had been there.  As I grew up I wanted to ask him questions but I didn’t know if it was too painful for him to talk about it.  In the nineties he and my Aunt went back to France to where he fought but I was still too shy to ask him about it.

As he got older he really enjoyed going to the school for the Remembrance Day assembly to help keep the memory alive and ensure the next generation didn’t forget.  He loved to see the kids participating.

Now in his 90’s, my Great Uncle is losing his eye sight and some of his memory from a fall he had a few years ago.  I hadn’t seen him in a few years and I wasn’t sure of his memory – or if he would even know me.  But I went and I’m glad I did.  He got me confused with my sister who visited him last spring and he asked me a few questions several times but over all he knew who I was.  I was the “little one”.  He asked me to sit and rolled over in his wheelchair so he could see me better.  He noticed my poppy and told me about the wreath that the legion had dropped off earlier.  And I could see his mind went back in time for a few minutes and all he said was, ”Oh that was a time.” And shook his head a little as if to shake away the memories.  He held my hands and asked about my husband, children and my life.  He spoke about his wife who passed away just before my Mom 4 years ago.  He couldn’t remember how many children I had moment to moment but he remembered that it would be his wife’s birthday in a few days and then Remembrance Day and what they would have done during that week. 60 years later the war is still very prevalent in his mind.  His hope is that we won’t forget.  I promised him that I would remember and make sure that my children remember.

I am so thankful for my Great Uncle and all whom have served to protect our freedom.  I am also thankful that Canada started peacekeeping in the 1950’s.  Above all I believe in working for peace and I’m thankful for those that are there when our peace is needing to be defended.

The Quilt

There is a long line of seamstresses and quilters on my Mom’s side of the family.  Only a generation ago it was a very important part of the culture and everyday life.  Women created beautiful works of art that would be used on a daily basis and stood the test of time.  The intricate fabric pieces measured, cut and sewn together.  The completed top was then added to the middle and back layers and stretched out on a large wooden frame to be sewn together by hand.  Daughters were taught at a young age to carry on the tradition.

Most of the quilts today are finished on machines and this doesn’t diminish their beauty but there is something about creating the designs by hand.  I learned to quilt, along with my sister, at my Grandma’s when I was about 7 or 8 years old.  Three generations sitting around the frame in my Grandma’s front room.  I didn’t fully understand the history that came before me at the time but I did know that it was something special and I did enjoy the experience.

My Mom inherited a lot of my Grandma’s projects and fabric when she passed away in 2003.  They were packed away and over the years my Mom would go in and find something to start or finish.  About 5 years ago she found a box with quilt pieces in it.  A lot of pieces.  More than enough for a Queen size quilt.  She asked me the next time I was there if I would like the quilt.  She would get the top ready – most of the pieces and blocks had to be sewn together.  After that we would find a space to set up the family quilt frame that was made by my great grandfather for my great grandmother.  We would all finish it together, three generations.  The granddaughters were the perfect age to learn and she wanted to continue the tradition.  I hadn’t quilted since I was a child and it isn’t something that I would have ever thought to do again but I was excited to help, as was my daughter.  Shortly after that, in June of 2009, she was diagnosed with cancer.  Even with the diagnosis and everything that went with it she worked very hard and showed it off to whomever visited and the homecare workers.  I believe this quilt helped to keep her going some days.  She finished the top in the beginning of 2010 right before we nearly lost her several times and she spent 5 months off and on in the hospital.  We moved her to a new apartment that May and made sure that the quilt was carefully packed and available for her, along with a few other projects.  Sewing became so important to her at that time because her mobility was limited for most things and she wanted to pass on the skill to her granddaughters.  She helped my daughter, who was 10 at the time, start a small baby blanket as well.

During the summer and fall of 2010 I took her for wheelchair rides as often as possible around the town of Steinbach where she lived.  On a few of those rides we went to the fabric store and one of them we picked up the batting and the flannel backing for the quilt.  We were able to find the perfect match 40+ years after my Grandma had picked out the fabric for the top of the quilt.  We must have been quite a sight going down the sidewalk that day.  We folded up the backing and put it in the container with the rest of the quilt waiting for the perfect day to do the quilting.  Mom decided that we should have a quilting party in the first few days of October.  Her sister would be there along with my sister and her two daughters.  On that Saturday morning I was getting ready to leave for my Mom’s and the phone rang.  It was Mom and she sounded upset.  She hesitated and finally said, “I hate to tell you this but I don’t think we can quilt today.  I have to go back into the hospital.  I have been trying to phone you for the last hour but I just didn’t want to disappoint you.  I was really looking forward to this and I know you were too.”  I was disappointed but the worst part was that I knew we were missing our last chance.  I knew it was over.

She only stayed in the hospital 4 or 5 days that time but when she came home she had lost more mobility.  About a week after she was home she said, “I think you can put the quilt away.  You will have to finish it another time without me.”  My heart broke because I knew that “putting away the quilt” was a symbol of so much more.  She was acknowledging her fate.  The quilt was put in the closet with reassurances that we would get it out for her if she wanted it.  Soon after that we moved her hospital bed into the living room and began the 6 week vigil that came to a close on December 17th, 2010.

I took the quilt home and didn’t know what to do with it.  I didn’t have a quilt frame or the space to set it up.  I really didn’t know where to begin.  A few years ago I found out that a friend of ours knew how to quilt.  I hesitated asking for her help because it all just seemed too daunting and too much of an imposition.  I finally asked Elle in the spring of 2013 if she would help me over the summer.  She was kind enough to ask her Mom for a frame and offered her basement for a few months to do the most crucial parts on the big frame.  We spent an entire Saturday in July of 2013 setting it up in her basement.  Elle gave me a few lessons and pointers and helped me get started.  I drove the hour to her place nearly every weekend last summer and early fall to get the long lines done to hold it all together.  If Elle was home she helped me out as much as she could and on the final weekend spent hours with me getting it ready for me to take home.  Those days in her basement were very special.  My daughter came with me a few times and helped out. We had lots of time for visiting.  There were also times where I was quilting alone and had time to reflect on good and bad times.  It was therapeutic.  I connected with my Mom and Grandma through the stitches and the fabric.  I was carrying on the tradition and completing a 3 generation quilt.

I have been working on the 48 blocks for the last year on a lap frame.  When I finish these last 2 blocks my friend, Elle, will finish the sides just in time for us to use this winter.  I am not a natural quilter.  I am not a seamstress.  I have done this as a labor of love and tradition.  I have struggled through it at times and just waited to be done.  But now that I am so close I know I am going to miss it.  I don’t want this chapter to end.  But today is the day.  This evening I will put the original pattern, block and pieces into a large poster frame to be displayed and preserved.

I have been asked many times if I will do another one.  This is my first and last quilt.  My Grandma and Mom did all the work.  I’m just finishing what they started doing the simplest part.  I wouldn’t have a clue how to start another one. I don’t have the tools, nor the inclination to learn.  For me this quilt is the finishing of something, not the start of a new hobby.  As my husband will tell you, I have enough hobbies without starting any new ones. I am so grateful to Elle for providing me with the space, frame and lessons to get it going and my husband for understanding and respecting why I was and am doing this, even when I had to spend so much time away last summer.  I am also grateful for the women who came before me.  We take so much for granted that wouldn’t be possible without them.

 

June 12th

38 years ago today my Dad, Allan Pearce, was murdered during a home invasion at my Grandparent’s house on the family farm outside Moosomin, Saskatchewan.  He was 2 weeks from his 33rd birthday.  I was born 13 days after he was killed.  One day after his birthday.  The day of his funeral was my due date.  I am a posthumous child.

Why am I still talking about it after all these years?  Why am I writing about it?  There are so many reasons.

A lot of time was taken from my Dad.  He would be turning 71 on June 24th this year.  What does one accomplish between 33 and 71?  By remembering him and talking about him I make sure that what he gave up for us isn’t forgotten and that he isn’t forgotten.  He was an amazing man and I am so proud to say he was my Dad.  I’ve heard some incredible stories of his generosity.  And what I find ironic is that if the guys who killed him would have just asked him for help he would have done anything for them.  But instead, Randy acted on his feelings of needing to feel in control and his extreme anger.  Richard had the chance to stop it but didn’t take it until it was too late.  His words begging Randy to stop were too little too late.  My Dad was surprised.  The struggle was fought.  The gun was fired.  The bullet went through his heart.  My Dad lay on the kitchen floor while they ran out the back door.

A few days before my Dad was killed he said in front of a number of people that he would give his life for his family if God asked.  My Grandma was terrorized and raped during the home invasion.  My Grandpa suffered from dementia and so was unable to defend his home, his son or his wife.  He never really understood what had happened that day.  My Mom was at home having breakfast with my 20 month old sister just behind a row of trees at the back of the yard.  Thankfully Randy never got the chance to find that house.  We will never know the extent of what my Dad stopped that day.  I’m thankful for that.  But I do know that Randy had told Richard he had wanted to kill everyone.  The guys were caught at a bus station a couple hours later in a neighboring town.  The trial was quick and decisive.

My Dad was a singing preacher – that’s my favorite description of him.  He loved to sing at the nursing home and travelling to different country churches.  Singing on local radio stations.  He was quiet and deep thinking but could have a conversation with anyone.  The conversations I have missed is one of the most painful parts of not knowing him.  What I would give to sit at the kitchen table with him and a cup of coffee.

When I was growing up June was never a very happy time.  It was the end of school and the beginning of summer but it also brought a cloud over the house.  I didn’t fully understand the cloud but I knew it was there.  My Mom became a different person for about 6 weeks.  From Mother’s Day till the end of June.  Including my birthday.  Later we understood it as untreated depression and PTSD.  My Mom never really recovered from the trauma.  Even outside of June there was neglect.  There was an enormous amount of anger and resentment toward me.  We never bonded as Mother and daughter.  I lived in a mass of confusion for years and then became enemy #1 as a teenager when she realized I was growing up.  I was very angry for years.  Angry that my Dad had died, angry that I never met him, angry that I then had to live in a house where I was rejected.   I slowly began to realize what my Mom had been through especially when I became a wife and Mom.  I began to see the pain she had endured and how she had tried to survive.  I began to realize that I had to choose to continue the negative cycle with my family or choose to find the positive.  How do you find positive in murder?  It wasn’t easy.  And it’s a long story.  I started to see that even through the negativity my Mom had tried so hard to do what she felt was right by not having hatred for the men who had done this.   Some of her methods were flawed but she tried.  She made the effort and I saw just enough.  I decided to take what I had learned from my Mom and other family members and choose forgiveness over hate.  I felt the overwhelming need to understand.  I had been kept in the dark for so long.  I went on a mission to find out as much as I could.   To make contact with lost family.  To break the cycle.

Jumping ahead I no longer feel the anger.  I have made peace with my Mom, with Randy and Richard, and ultimately with murder.  I know this won’t make sense to most people.  I just knew that I couldn’t allow it to eat me alive.  I watched that happen to my Mom and as she was taken over by auto-immune diseases, depression and ultimately cancer I knew I wanted something else.  And I strive for it every day.

I have struggled with June my whole life.  It feels like an imprint on my soul. I avoided celebrating my birthday for years seeing it as a dark day based on what I had seen as a child.  Some years I tried ignoring the anniversary, some years I allowed myself to sink into it barely able to get out.  Other years I was just a mess trying to figure out “the right thing” to do.  After my Mom passed away 3 1/2 years ago I thought the pain would ease up when I no longer had to look after her during this time.  But it hasn’t.  I no longer feel the anger but I am left with sadness, respect and reverence for what was experienced that day and the days after.  My Dad, my Mom, my sister and I, my Grandparents, my Aunts, Uncles and cousins,  family friends and neighbors, the town of Moosomin and the men who killed him.  The ripples are still spreading.  My Dad now has grandchildren that have missed out.  But I have also realized that I can direct the ripples and that is what excites me.  I am no longer a victim of the ripples I am the catalyst.

I have made a new determination this year.  I will allow myself to feel the sadness, respect and reverence for what happened.  I will continue to observe June 12th in my own way. I will do my best to make it healthy and healing but it will never leave me.  June 12th is part of me so I am going to stop fighting with June and embrace it.  My Dad is my hero and needs to be remembered.

The World is Upside Down

Nothing feels right. Everything is wrong.
I am in complete disbelief that my cousin Mike is gone. I know all the platitudes and the reasoning.  Reason and reality are for later. Grief and disbelief are here now.

I know that Mike is in a better place and I am truly happy for him. It’s the people left behind that I’m worried about. They are in a far worse place right now. And I want to be in that place with them.

I couldn’t stop shaking for about 12 hours. And when I allowed myself to think about it I started again for another few hours. I think that stage has passed, at least for now.

Food doesn’t taste right, my breathing is different. I have a hard time getting into a deep sleep. The world is moving too fast – or I’m too slow – not sure which one. Decisions feel like walls.  Hours disappear…

I try to keep myself busy but then suddenly hit a wall; fight the dizziness, the nausea, the exhaustion and work to find my footing again.

I don’t know which way is up. I feel like I have fallen into deep water and I’m fighting my way to the surface but I’m not sure where it is.

I believe we are all connected and one of my connections is gone. We have to learn how to live with a new reality; a new normal. Nothing will ever be the same again.

I am no stranger to feelings of grief. I know the stages, I know my pattern. I know that I will find the surface again.

None of this compares to the unimaginable grief that some of my family members are feeling right now.  There is no positive spin at the end of this blog.  There is just space for grief.

 

 

Change

I know… it’s been a long time.  I have wanted to blog many times over the last year but I had to stop for personal reasons.   I am writing again.  I can’t promise how often, but I’m here.

A large part of my writing was devoted to my Mother’s illness and how I dealt with it.  I will be moving away from that for the time being out of respect for some family members and what they are experiencing.  The topics that I will be writing about I really wanted to write about last year but it got too complicated and some were just too painful.  I’m hoping that I can navigate them this year.  And if nothing else maybe I’ll start writing in prose or poetry to access the therapeutic part of my writing without revealing the details.  This will be an experiment.

Mom’s Misadventure

Mom wanted out of the hospital very bad. We couldn’t blame her. She was very frustrated, depressed, and angry and determined that if she went home everything would be okay. She decided she had had enough one day and wanted out. They couldn’t keep her there because she was an adult and could check herself out. Technically she had recovered from what she had gone in for. The problem was her weakness. She wasn’t able walk very far, walk up and down stairs, which her apartment had 3 of, among most other basic needs to live on her own, even with home care.

I got a call at work that she wanted to leave and I yelled and begged my sister for her to be kept in the hospital. Mom could hear me yelling through the phone and I just didn’t care. It was not something that I would have ever done in another circumstance but I just couldn’t help it. I knew that if she left it would be a disaster. I was afraid she would fall down the stairs, break a limb, among so many other things that were going through my mind. She was so fragile. Home care wasn’t set up, nothing was ready. But the doctor couldn’t hold her so they put her in the wheel chair and sent her down to the car. My sister drove the half a block to my Mom’s apartment and went up the driveway. My sister helped my Mom out of the car, which took a few tries and Mom stood up took 1 or 2 steps and fell to the ground. My sister tried to help her up but Mom couldn’t hold any of her own weight. After a few tries, the lady that lived below Mom drove up. She had helped pick Mom up off the floor before when she had fainted and was trained for this type of situation. So between them they got Mom off the driveway and back into the car. My sister drove her back to the hospital. They hadn’t even touched her room yet. The nurse at the Emergency desk seemed to know to expect her back and notified the nurses on the second floor that Carole was back.

Mom never walked on her own again. She had either a walker or was in a wheelchair. It was incredibly sad to see and broke my heart. Leaving for those 10 or 15 minutes set her back farther than she could have known. But she was still determined to get out. And so we talked to her about the options and what had to be done for her to go home. She wasn’t happy about any of it. She made things very difficult for the nurses and the doctor. And I would like to say right now that it was incredibly hard to deal with at the time but there is no room for judgment. None of us were in her position. None of us were facing what she was facing. None of us knew, or know now, how we would behave if we were in her shoes. But these are the facts.

Finally there was a meeting at the hospital. My sister and I went and sat in a family room at the hospital with the people on Mom’s “team”. The doctor, head of the nurses, occupational therapy, physical therapy, social worker, home care were all there to figure out what would need to be done to get Mom out. Each member of the team said what they would need. And we would have to provide proof that the list was taken care of before she could be released. More home care, a new apartment, wheelchair, lift recliner, commode, hospital bed, walker and tub seat were the main ones. Mom was angry and she wasn’t shy about it, in the meeting and after. She said she didn’t need any of the things they had requested, except the new apartment. So we sat with her while she vented and then I told her to just go along with them. So what if they wanted to put that stuff in her apartment. If she didn’t need it then it would just sit there. She didn’t have to use it just because it was there. I told her to just say yes to whatever got her out of the hospital. I made it sound like we were getting the best of them; like she was outwitting the “team”. We made jokes about the hospital bed and the commode. I said maybe Auntie A would like the adjustable bed to sleep in. She might enjoy it. And with the commode it would be like she had her own bathroom. Meanwhile in my head I was just hoping this would work. I was saying anything to get her on our side; anything that would get her to agree to the conditions. We were desperate.
So she finally agreed and we set out to make it happen.

Truth and Misdirection

March 17th, 2010 Mom had her next dose of chemo scheduled. Auntie A had gone home for a few days after Mom got home from the hospital but she was back again before the next chemo a week later. We were all nervous about how this one would affect her. Mom was determined to go ahead no matter what and the doctors kept the orders in her file. Auntie A took Mom to the appointment and took her home to rest. Mom insisted on going out the next morning for breakfast and keeping as normal a routine as possible. Home care kept a very close watch on her with a nurse coming in every day to check her vitals. Everyone knew what to watch for and knew they had to get her to a hospital in a hurry if she exhibited any of the same symptoms as the last time.

Within a few days those symptoms had returned. Her intestines had stopped working again, her white count was dropping and her body was shutting down. But my Aunt was able to get her to the hospital without an ambulance. And we started again. The weekend doctors said there would be a CT Scan done to find the blockages and figure out what to do next. The CT Scan didn’t happen and we weren’t getting any answers. Her doctor was gone for a few days so we had his colleagues. By Tuesday I was frustrated by the in-action. I had requested that if there was something they didn’t want to discuss with my Mom directly they should contact me. But they didn’t so on Tuesday I took a half day off from work and I called Winnipeg Oncology and asked for some advice on how to handle the situation. Winnipeg said to request the CT Scan and let the doctors know that if they have any questions in regards to my Mom’s care they should contact her directly. So I went back over to the hospital and had a meeting with the doctors in Mom’s room.

I went through the issues and asked what we were to expect? Would this cycle continue? Was there something that could be done to prevent the cycle? When was the CT going to happen? And the questions went from there. She had a CT later that day and we had another meeting with her doctor when he came back. I requested to talk to him with my sister. I asked him what we were really looking at. Do we bother looking for a new apartment without stairs? Will she come out of the hospital? Do we look at long term care? Being completely honest, what did his gut say about how long she had? His answers: Best case scenario a year, more likely 6 months. Yes, get her an apartment. Sign a year lease but be prepared. The cycle will continue with her intestines. Discuss the future of chemo with her oncologist.
After that conversation I knew that we were on the down side and we were sliding. We began grabbing on to whatever we could to slow down the decline. And we didn’t tell Mom anything that the doctor had said. Number one rule for me was no matter what happened outside her room I put on a smile when I stepped inside. The most important thing was keeping her spirits up and it got tougher by the day. That stretch in the hospital was the longest in the 18 months. And she wasn’t happy about it.

She had an oncology appointment in the city in mid April. Even after a month in the hospital we weren’t sure if she would be able to go. She was just too weak. But she was determined and wanted to go even if it was on a stretcher. And so that’s what we did. The ambulance took her and she lay on a stretcher throughout the appointment.

The original agenda for the appointment had been to discuss further chemo and the possibility of surgery for the breast tumor they hadn’t even touched yet. As well as options for helping to keep her intestines from closing, but it was pretty evident that it was due to tumor growth and the options were there to make my Mom feel better. They weren’t realistic. When the doctor saw my Mom the appointment changed drastically. The agenda was suddenly about whether to continue chemo at all and putting everything on the back burner. The oncologists were amazing and very good at deflecting and redirection. Basically, she told Mom that she had a rough go as of late and maybe it would be nice for Mom to have the summer off from treatments. We could revisit everything in the fall. She wanted Mom to enjoy the summer and asked what plans we had and encouraged the family visits. Mom thought it was great. I don’t know if she had any clue that the doctor didn’t expect to see her in the fall. This was the doctor’s way of letting her down easy. Quality of life over quantity was the buzz phrase of the day. Mom seemed relieved. They gave us instructions on how to handle things if Mom’s intestines weren’t working when she went home. And gave us the after hours number just in case we needed anything.

I went home thankful for the chemo being stopped and hanging on to our plans for summer. But first we had to get through the next month of Mom being in the hospital. That wasn’t going to be easy.

The Passing of Bpoo

The days surrounding the passing of Pasith’s Dad, affectionately known as Bpoo, were surreal and difficult. Juggling an 8 year old, a 1 year old, two full time jobs and the stress of a dying parent wasn’t easy. It never is no matter what you have going on in your life. We had piano, daycare and both our jobs, among other things, on high alert that we may have to make other arrangements in a hurry. We had a friend ready to help us in case we suddenly couldn’t pick up the kids from somewhere. We were as prepared as we could be.

There were tough decisions to be made in those last few weeks. How much do you bring the kids to see their dying Grandpa and for how long? Bpoo was asking to see them, how do you refuse him? And yet you don’t want to expose them too much. Our daughter was 8 at the time so we asked her and trusted that she would be honest. The last memory that I have of her with him was on the Sunday before he passed. We went to see him at home and he was so tiny and frail. He had been about 5’3″ and a medium build before he was sick. As the cancer attacked his organs it also ate up his body. His bone structure was smaller than our daughter’s and she was small for her age. So as they sat beside each other on the couch my breath was taken away. I could hardly comprehend what I was seeing. It seemed impossible that he could be up and moving around, that his body would still hold him. But he was determined to sit with her. He was teaching her how to write in Laos. He was so excited. She looked over at me with such sad eyes and she wasn’t sure what to do. When I got the chance to talk to her she said she couldn’t understand everything he was telling her (he didn’t speak much English) and she wasn’t sure what to do. I asked if she was okay or if it was too much to sit with him but she insisted that she was okay. So I told her to just sit, listen and nod even if she wasn’t sure. This was the best gift she could give him. He was passing on his language and culture, something he treasured, to his granddaughter. This was his legacy. My son was 20 months so Bpoo was just happy to watch him run around and climb on things. As difficult and exhausting as it was to take them I’m glad we did for his sake and theirs.

Pasith, along with other family and friends, was with his Dad as much as possible for the last week. Bpoo was taken to the hospital by ambulance a few days before he passed. Pasith went to work but would go to the hospital in between and sometimes just stay for the day and evening. He, along with his brothers, tried to help out his Mom in any way they could. Bpoo’s friends were starting to plan the traditional Buddhist funeral that his Dad had requested. And the rest of us waited. Finally on Friday Pasith came home for supper, which he hadn’t done in a few days and he was very quiet, which is nothing new but this was a heavy quiet. Where you know there is something behind it. He said that his Dad was close but he wasn’t sure how much longer it would be. It’s amazing how your vocabulary and thought process changes during those times. We sat talking about his Dad’s death as a welcome event. Waiting for relief and disappointed when it didn’t come. He had just finished eating and was ready to head back over to the hospital when his phone rang.

We both jumped, as we had for months, it was his brother. It was over. His Dad had passed away while he was at home. Tingles take over your body going from head to toe, out through your finger tips. You feel relief and sorrow at the exact same time. I gave him a huge hug and then we had to move fast to get to the hospital 20 minutes away. I called my friend and packed up Alex. It was as if time stood still while we moved in it. We dropped the kids off and raced through the rain to the hospital. I asked Pasith if he regretted coming home. He said that it happened as it should. He was where he belonged. We went up to the Palliative wing on the 8th floor and Pasith went off to find his brothers while I sat in the plush deep blue waiting room designed to comfort the grieving. We all went to his parents house after and the friends were already there. It was somewhat a party of relief. We, as the younger generation, went into the kitchen and looked at photo albums, shared memories and laughed. When we came out to the living room about an hour later the furniture was gone. It had been moved out or to another room to make room for the week of mourning before the funeral. His Mom was exhausted but going on adrenaline. She hadn’t slept for months.

The week before the funeral was so busy we hardly had time to grieve. We tried to catch up on things that had been set aside for a few weeks and Pasith was putting together a slide show for the funeral. So we spent the week going through stacks of photo albums. It was very difficult to look at all the healthy pictures of his Dad. It’s easy to forget what they looked like before they were sick. And then to have the reminder after he was gone was painful. But we did it. Pasith scanned pictures late into the night every night trying to find the right ones. He didn’t feel like he could or wanted to speak at the funeral so he was happy to make this his contribution.

Those times were tough on everyone involved, none more so than my Mother-in-law who had to restart and redefine her life. And after 4 years we still have some tough days but it does get better. It really does.