The weekend before her EKG appointment I decided to go and pick her up and bring her to our place for the night.  She’d only been to our new house once and that was when we moving in a few months earlier so I wanted her to come see it unpacked.  I hadn’t seen her in a few weeks but we talked on the phone at least once a week.

My Mom lived on the upper floor of a four-plex. There was an outside door with a small entry and then 3 steps up to her apartment door.  I opened the door to the entry and Mom was at the top of the stairs putting on her shoes.  Her breathing was different.  I had never heard her like this before.  She had never had asthma or any breathing issues that I knew of.  I asked her if she was okay.  She said yes but she could hardly get the word out.  I said, “I don’t think you’re okay.  Is there something I can do?  Do you need to go to the ER?”  She insisted that she was fine.  That this had started happening when she bent down to pick something up or put on her shoes.  Meanwhile I was looking across the street at the hospital and back at her in a panic.  Wondering what I should do.  Do I take her to my house or to the hospital?   Again she insisted that she was fine.  So I took her to our house.  I felt sick with panic.  My mind was racing trying to figure out what was wrong.  That evening I took her out shopping and she seemed okay but walked at such a slow pace I got even more concerned.   She didn’t have another episode at our house but I knew something was wrong.  I started doing research online that night.  I don’t believe everything I read but I like to use it as a starting point for questions.  I felt so helpless and I needed to feel like I was doing something.  Mom had Sarcoidosis of the lung, a nasty virus that can cause hardening of the lung over a long period of time, about 20 years before and it caused her lung infections every once in a while so I thought it might have something to do with that.  I saw the word cancer in my early research but ignored it because that just didn’t seem possible.  There was a very low instance of cancer in my Mom’s family so genetically speaking it wasn’t top of my mind.  And she was going for regular mammograms etc.

I talked to my Mom before her appointment and she said she wasn’t going to mention her breathing issue. I knew it was out of fear of what would be found and I didn’t blame her for being scared.  But I begged her to tell the doctor.  I knew something was wrong.  I also knew that she thought I was being pushy and controlling but I didn’t care.   This was too important.

My sister went with my Mom and she did tell her doctor about her breathing on that Wednesday and a chest x-ray was ordered for that Friday.  I took the day off from work to go with her.  I just had no idea what to expect.  Right after the x-ray the doctor requested to see her.  That couldn’t be good.  He kindly explained why she was unable to breath.  She had a litre and a half of fluid around her lungs.  And that it would have to be drawn off that day.  Well, the thought of having a giant needle put in through your back to drain fluid off your lungs had me feeling dizzy.  Mom just said, “I’ll be fine.  Wait for me in the waiting room.  The doctor knows what he’s doing.”  This fluid had been building up for at least a month; the fact that she had hid this from my sister and I really scared me.  What else was she hiding?  I took Mom home and hated to leave her.  They were going to be testing the fluid that they had taken.  The roller coaster had begun.

I have many Mom pieces but the most recent and last pieces are the freshest and I feel like I need to write about them.  I need to cleanse my mind a little.

Pasith and I had been noticing that Mom was slowing down in the last 3 or 4 years before she was diagnosed with cancer in late June of 2009.  Not able to walk as far, not enough strength in her arms to hold our son for more than a minute when he was born, not wanting to drive farther than the 20 kms to my sister’s and generally a little slower.  My Mom had chronic illnesses for a long time.  Nearly all of them connected in one way or another to the body’s reaction to trauma.  There is more and more research being done to connect the long term physical effects of emotional and mental trauma.  Mom had Post Traumatic Stress Disorder, usually associated with soldiers, long before it had been officially identified.  Also the hormonal and chemical changes that happened when my Dad was killed and I was born so shortly after had a profound effect on her body that was destined to lead to health problems later on.  I had a sense that she would not make it to her 70^th birthday for a very long time.  It wasn’t a morbid thought; I just didn’t know how her body would hold up to the assault much longer.  And I saw how she suffered and I didn’t want her to suffer any longer than she had to.  Her 70^th birthday would have been this coming December 24th; 1 year and a week after she died.

Christmas of 2008 Pasith and I started to notice some weight loss and a small change in her skin color.  And as Spring progressed and she no longer wanted to walk the block and a half to the mail box I started to get concerned but kept it mostly to myself.   She wasn’t able to travel to Warroad to visit with family that March and I think the family started to wonder a bit because she wouldn’t miss seeing her brother from Colorado easily.

I started having nightmares around the middle of April of 2009 that my house was falling down.  I would wake up several times a night or not sleep at all.  The basement stairway fell apart.  The roof caved in.  The walls would fall in on themselves.  The windows would break.  The roof flew off.  It was a different scenario every night sometimes we were in the house and hurt from the falling debris and other times we weren’t home and would come to find the devastation.   After 2 months of nightmares I was exhausted and sick most days.  Poor Pasith didn’t know what to do for me.  I didn’t understand what the dreams were about until after my Mom was diagnosed.   It wasn’t my physical house that was falling down it was a “warning” of what was to come.  My family was going to be thrown into devastation.   And we risked falling apart if we weren’t careful.  The nightmares started to go away after her diagnosis and now I haven’t had one in a long time.

My Mom had a follow up appointment for an EKG in mid June of 2009.  She was very nervous about it.  There were a lot of heart problems in her family and she was scared.   I told Pasith that I knew that something was coming.  But it wasn’t the EKG.  I knew that the next test would be bad; I just didn’t know what it was.  I was very worried about her.
To be continued…

Tonight would have been what my Mom and I would have described as the perfect summer evening.  The air is clean, the sky blue, and the sun is shining.  Last summer most Monday or Tuesday nights would have been something like this:

I would call ahead from work to see what she would like to eat.  Over the summer my Mom was eating about a half a cup of food several times a day.  Her tastes had become very selective so I would call her to see what she felt like having and if she didn’t know I would try to suggest something.  And she knew that I would go to whatever restaurant she was craving just to know that she was eating.  Or if she had food Home Care or I would help make it.  She was able to stand at the counter for short periods of time as long as her walker was nearby.  And she wanted to help as long as she could.

After my 45 minute drive from the city I would park in her spot behind her building and in view of her apartment I would take a deep breath before getting out of the car.  You never knew what each visit would bring.  Would she be okay?  Had she fallen or fainted since I spoke to her last?  Would this be a night at the emergency room?  Everything could change in seconds.

As I reached her patio door I would take another deep breath and look through the glass and see her sitting in her chair watching TV, reading the paper or doing a puzzle book.  And I would breathe a sigh of relief.  And say a prayer that I would say what needed to be said and hear what needed to be heard.

As soon as she saw me she would have a big smile and put away what she had been doing.  And then she would get out of her lift chair and follow me with her walker over to the kitchen table.  She had a wonderful apartment where the kitchen, dining and living spaces were all in one room.  Eating at the table was very important to her.  Being in the hospital so much she loved and understood the freedom of eating at the table.  And it gave her the chance to get up and walk around.  Sometimes she would take a lap around the apartment while I was getting the food ready.

When we were done eating we would decide our next move depending on the weather.  On a night like this we would have been excited to get her in her wheelchair to go for a walk.  Some nights it was just around the block or up the scenic walking path behind her place.  But other times we would go to the closest restaurant and have coffee.  No matter where we went the scenery was always her favorite part.  She said she hadn’t noticed the brightness of the flowers the year before or how green the grass and the trees were.   We would talk about everything.  Sometimes she seemed to pick a decade to talk about.  She was always reminiscing and I indulged her.  After coffee we would head back to her place past the library and down the little hill by the park toward Elm St.  That was our favorite part.  I would usually end up running to keep up with her chair so it didn’t get away from me.  And a few times I did that little run in the rain, once with thunder and lightning chasing us.  But we could usually pick the perfect nights for that walk.

If we couldn’t go for a walk because of weather or if Mom wasn’t feeling well we would just go sit on the bench outside the building’s front door and watch the cars go by.  Talk to the dog walkers and enjoy the evening air.  Or we would just stay inside and play a game of Skip Bo and have a cup of coffee.  If I was there on a Tuesday my sister may stop in after work and join us around the table.  Usually around 8 she would ask me if I would go get her a small Sunday from Dairy Queen, unless a friend had dropped off a yummy dessert.  I would see her eat less and less each Monday and pretend that I didn’t notice.

Home Care would come around 8:30 to get her ready for bed, soon after she would ask if I should be going.  She was concerned for me but I think more concerned that Jeopardy was coming on at 9.  Some nights I would leave by 9, other nights I would stay until Pasith would send me a “hello” or “How is everything” text as a gentle reminder.  And I would just dread leaving not knowing if there would be a next Monday; or if it would still look the same.  We had made it through this one but that was no guarantee of another one.  She would get out of her chair and give me a hug and I would feel her bones and realize how frail and small she was getting.  And she would walk over to the door, watch me leave, wave and lock the door.  Home Care would be back for night at 11.

By the time I got home I was exhausted.  But it was so worth it.

When I first told my Mom that we were having a boy she couldn’t hide her slight disappointment.  She said, “What am I going to do with a boy?  What am I going to sew for a boy?  I still have too much pink and purple fabric to have a grandson.”  My Mom had 2 daughters and 3 granddaughters, not a boy in sight.  Then he was born and she fell in love with him.

Mom found that she really didn’t have too tough a time finding things to make for him.  PJ’s, a stuffed taxi that he sleeps with, pillows, blankets.  We just had to go shopping for different color fabrics.  She enjoyed the challenge.  And he enjoyed everything she made and still does.  His baby blanket is his treasure.  His PJ’s are almost up to his knees and elbows but he refuses to give them up.  They are Gamma pants and Gamma shirts.  The two of them really started to bond when he was 2.  Unfortunately that was also when she got sick.  But, I think that it also sweetened their relationship.  They had their routines of affection.   Little hugs and tickles.  Sometimes she would be so sick and so tired but as soon as she saw him she would suddenly find energy and a smile.  I would ask her if she was really sure that I should bring the kids and she would insist.  She wanted every minute with them that she could get.  I took them every Saturday that I could for over a year.  And when he was being a “normal” toddler and taking me to what I thought was the end of my nerves I would ask her, “Is he ever going to grow up?”  She would smile and pat me on the shoulder and say, “Yes, Lisa.  He will grow up.”  I wouldn’t trade those moments for anything.  My son got used to going to Grandma’s to the point of getting very upset if we didn’t go to Grandma’s on schedule.

So when Mom passed away we weren’t sure what to expect.  Due to my son’s issues with crowds and noise we didn’t have him at the funeral.  Even though I grew up and agree with the philosophy of children going to funerals.  And I knew that this may make it more difficult to explain the situation to him.  But we tried.  And when we cleaned out her apartment I took him with me a few times so he could see that she wasn’t there.  He would curl up in her recliner with a sad look on his face.  But he seemed to understand.  He stopped asking to go to Grandma’s.

Then we went to Steinbach today, where my Mom lived.  And we were just down the street from her last apartment and he asked to go for a walk.  He wanted to go to Grandma’s.   I had a sinking feeling but knew this was an important walk.  He led the way and walked into the parking lot and then started to run up to all the patios looking for Grandma.  I finally had to stop him before he started knocking on doors.  I sat on the curb and tried my best to explain to him that Grandma wasn’t here anymore.  Grandma is in heaven.  She isn’t here anymore.   But he was not satisfied.  He kept searching.  He walked up to the back door of the building and asked to go in.  I explained again and he just hung his head and asked to see Grandma.  I finally got him to walk around the building and we quietly sat on the bench for a while.  He would turn and look at the door every few minutes waiting for Grandma to come out.  Then he went into the middle of the sidewalk facing the doors and waited, staring at the doors willing them to open.  All the while I was talking to him, trying to explain and comfort him.  He finally gave up, took my hand, and we walked back to the house we were visiting.

When my Mom was sick I was determined that my son would remember her; that they would have a bond that would last.  And I guess this is the temporary cost of that bond.  The pain is still worth it because one day he will grow up.

I wrote this almost a year ago.  It is really amazing to read it again and to remember how I felt at that time.  And I have an update.

“I know that it is never enough, but is it enough to survive?  I am facing my Mother’s imminent death.  She has terminal cancer and we don’t know how much longer she has.  I have been fighting for her health and well being for a year.  Since she left the hospital the last time in May I have had a different fight; regrets.

I know regrets about life and death.  I have experienced them and I have watched them eat people alive.  I don’t want regrets.  I don’t want to regret not bringing my children to her enough.  I don’t want to regret them not learning her passions, her stories and her love for them.  They are 4 and 10.  They are innocent.  It is up to me to be sure that they have the memories that they deserve of their Grandma.  Sidney has the right to learn to cross stitch, embroider and sew with a machine; to bake with her Grandma’s recipes.    Alex has the right to simply remember her for her hugs, laughter and cookies.  Other than when she was in the hospital I have brought them to see her at least once a week.  We even had some adventures with Alex while she was in the hospital this past winter.  She enjoyed every minute of it.

Have I asked everything that I need for myself?  My Mom and I were never close.  She didn’t share a lot of her life with me.  I have always hoped that she would magically turn into the mother that I have wanted and deserved.  I saw glimpses of that mother while growing up and now in adulthood.  But those glimpses are too few and far between.  Once I got a glimpse of what I was missing I craved that Mom.  I have been desperate to get to know her.  But she is just out of my reach.  Over the last year my Mom has become a little more of that Mom that I crave.

I feel like I’m being teased.  I will get just enough of this Mom and then she will leave me.”

Now for the update:  I have no regrets.  I made some decisions that seemed impossible at the time and I thought my heart would explode.  Do I stay with my Mom because she needs me and I don’t know how many more times I’ll have with her?  Or do I go home to my son who has an ear infection and I can hear him crying for me on the phone?  Or do I stay home when my daughter pleads with me to not go out again?  I admit that I chose my Mom more times than not.  My children were at home in very good hands with my husband.  And my Mom was alone.  My children would be here when this was eventually over, my Mom wouldn’t.

I have no regrets.  My daughter did have her Grandma for a sewing teacher.  My son remembers her and refuses to give up the pajamas she made him.  My daughter would grumble sometimes about having to go to Grandma’s every Saturday when she wanted to be with her friends.  So we would bring her friends with or she would stay with them.  I had to remember that at 10 and 11 she just didn’t have the capacity to realize how important this time was.  I’m not sure that I have the capacity.  But, one day I know she will understand and be thankful.

And I really do miss that Mom.  I do feel like I have been cheated.  But this isn’t the first time I have felt cheated by time, life and death.  I understand the reasons but understanding and accepting are two very different things.   But I will keep working and blogging on it.