Wednesday, August 14, 2013

August 14

This date will forever remain etched in my (and my sisters) mind. It was the day my mom died some years ago. I want to honor her. She was a special person living her life quietly yet affecting so many people.

She died from an extremely aggressive cancer that took her life 44 days after she was diagnosed and approximately 4 months after experiencing her first "benign" symptom. That odd stomach ache she had one night that prompted her to call me and the rest of her family (her brothers and sisters).

I remember listening to her phone message the day I got home from work. It was a simple message. For some reason that phone call is etched in my mind. She said "Hi XXXXX-This is mom. Call me when you can. I woke up in the middle of the night with stomach pain."

It was an unusual message to get from her. She didn't complain about things. When I heard it a deep wave of anxiety passed through me. In a panic I dialed her number. She said she just wanted to say hello. I asked her about the pain and she dismissed it saying it woke her up in the middle of the night. She was planning on seeing the doctor.

Puzzled by my reaction I hung up the phone unaware that in a few short months we would gather around her as she took her last breath.

Her brother and sisters all had a similar experience of receiving a different sort of phone call from her. She told them about her stomach pain also. It was as if she knew on a deep level what was ahead and was alerting us.

I could tell a lot of wonderful stories about her. I could talk about her courage. She used to stutter but overcame it. She had an arm that wouldn't straighten all the way. At times kids made fun of her. I saw her cry on more than one occasion about it. She was deeply sensitive, intuitive, and deeply committed to her faith. She loved us. My Dad would later say she was "fiercely loyal" to us. I don't think I ever heard her gossip about anyone.

She wasn't without her flaws. But she was a special person. As word spread about her cancer (and the gravity of it) people began sending cards. She had so many visitors and cards. They were precious to her.

I remember the day I found the cards sitting on the table unopened. I looked up and saw my mom's small figure (she lost so much weight) sitting under the tree in the backyard.

She had started the process of leaving of dying. I knew it. I knew she was going to die the day I left work early to wait for my parents to come back from the doctor (the day she was diagnosed).

I'll never forget that day either. I stood in the kitchen and watched with the most horrible feeling as my Dad approached me followed by my mom who was in so much pain by that point she was hunched over.  It was as if they were in the shadows with this big monster of Cancer right on their heels. I couldn't see them clearly.

I stood in her kitchen as they approached me. It was as if it was in slow motion. My Dad's face was pale and tense. He was silent but my mom.....she had a kleenex rolled up in her hand in a way that was so her. She'd been crying. She said to me "it's bad. It's really bad. The doctor said its cancer".

I literally slumped to my knees on the floor. I couldn't cry. I couldn't believe it.

My thoughts went to my sisters. One of my sisters was picking the other one up from the airport. They had no knowledge of what was occurring at home.  I thought about how their lives would change the moment they heard the news. I remember they knocked on the door. I went to open it and saw them standing there having had a fun trip, smiles on their faces. My heart broke for them. It broke for my Dad. It broke for my mom.

They came in. I finally managed to say "it's not good" or something. My mom was laying on the couch.  She told them. They all cried. I was still in shock and couldn't cry. My mom pulled me over and said "it's okay to cry".

My Dad left to go get a morphine patch the oncologist had ordered. And then we went on a 44 day cancer journey that was at once terrifying, tragically beautiful (the moments with her and some spiritual things that occurred), deeply sad, and.....very,very difficult.  They were in the middle of planning my sisters wedding. My mom decided to get chemo even though she was "terminal" in the hopes of being able to walk down the aisle with my youngest sister at her wedding scheduled for October just 4 months away. Her oncologist later told me that my parents were some of the bravest people he ever met.

Everything happened so fast. She started confiding in me that she feared she wouldn't make it to the Wedding in October.  I assured her we would move the wedding up if need be. Inside I was terrified at hearing her talk that way. It meant Death would arrive way sooner than any of us wanted leaving no time or space for a proper goodbye and to say all that needed to be said. She was only 59.

She loved weddings. She had so much fun helping my other sister plan her wedding.

She kept telling me that all she wanted was to be able to walk my sister down the aisle.

One night in late July she had a difficult night. She was agitated and upset and angry that this was happening to her. She was angry at having to leave us. My Dad had been diagnosed with Prostate Cancer not four years earlier. His prognosis past 5 years was uncertain. She made him promise not to leave us too.

That night was difficult. She finally went to sleep early in the early morning hours and had a dream. She dreamt "God" was welcoming her and had told her everything (we) would eventually be alright.

She woke the next morning with a sense of urgency. She wanted/needed to speak to a Priest that day. A young Priest arrived later that morning. They spent a long time together as we anxiously waited outside on the porch.

He finally came out. The only thing he said was "your mom is a beautiful person. she doesn't have much time left. We have to move the wedding up. It needs to be next week."

And he was right.

We had that wedding 4 days later. It is still the most beautiful and most moving wedding I've ever experienced. We had a huge backyard (1/4 acre). It was transformed into a beautiful space. All of our friends brought over flowers from their own backyards, potted plants, flowers, homemade food, a beautiful arch, a photographer made himself available. Everything came together in four days. The wedding looked as if it had been planned for months. There was a felt sense of community. We all needed each other. My mom's sisters and brother and cousins flew in from Oregon.

Soon we all gathered for my sisters wedding. We helped my mom get dressed. She was so thin. Her abdomen was swollen from ascites. Her lower legs were painfully swollen (I used to massage them every night to give her some relief). She was jaundiced. We had to get a special color makeup so she wouldn't look so jaundiced. It helped only a little.

But she made it. It was hard to keep myself from sobbing as I watched her small, frail (even though she was my height) figure shuffle down the aisle hanging on to my sister and my sister's brave face as she walked down that aisle. Her heart must have been breaking.

It was a tragically beautiful day.  But my mom got to see her youngest daughter get married and she got to walk her down that aisle.

After the wedding she started slipping away. More time spent sleeping, a little confusion at times because the toxins were affecting her brain.

She died 16 days later. It was a difficult day. A difficult death. But we were right by her side.

There were over 600 people at her funeral. The Church was filled-standing room only. People sent so many cards describing their experience with my mom and how much she helped them, how much she touched their lives with simple acts. It wasn't the huge things. It was things like listening to someone who had recently gone through a divorce or bringing a meal to a sick friend....but there were hundreds of people who felt seen and heard by her. She had a way of making people feel like they were the most important person at the moment.

Four years earlier I had come out to her.

I wrote the following post the day the Supreme Court ruled on same sex marriage but never posted it. I'm posting it today in honor of her. In honor of a special gift she gave me....(many gifts actually).


I woke up the morning of the ruling feeling my mom's presence. Because that doesn't happen very often I took notice wondering what it meant. She usually "appears" when something is up.

Later in the morning I turned on the news and watched as the tv journalist reported the historic decision. It made sense then why I felt my mom's presence that day.

As many of you know my mom died some years ago. We only had 44 days with her from the date of her diagnosis to her death. The cancer was that aggressive.

One night my mom, my sisters', and I sat in the living room going through the heartbreaking process of dividing up her jewelry and her antique clocks.

Four years prior I had come out to my family. My mom struggled with it for a little while. While painful for me I understood her feelings and appreciated her honesty.

My mom's struggle had nothing to do with judgment or discrimination. She was grieving. She wanted me to wear her wedding dress. I was her firstborn. And she knew that my life would be difficult. She grieved the discrimination I would face.

I grew up in a time when there was always a nod to discriminating against LGBT people. I grew up hearing jokes about gays (not by my family) (think Anita Bryant).

I've been called names, chased, hit, spite at, had drinks tossed in my face, my car's front hood punched and pounded on. I experienced a lot bullying and homophobia much of which I've never talked about.

My mom became my biggest advocate. She participated in P-Flag, walked in the San Francisco LGBT Pride Parade, and during the days she was dying, had a dream. She told me she dreamt that gay people were the most spiritual people she knew.

So that night as we sat together and talked about who would get what my heart was heavy with grief. I was devastated. We all were.

When we were finished my mom looked at me and said "you're Dad and I talked and we want you to have my wedding ring". She continued "When you get married I'll be there". And I knew she meant it.

Even though I doubt I'll ever have a relationship again that night, that moment when she gave me her wedding ring, meant the world to me. She was honoring something that I'd had great shame about and which I'd gone great lengths to hide. She knew how important having a partnership meant to me.

And she was giving me her Blessing on getting married.

I wish I had come out to them sooner because once I came out the walls came down. I was able to hav a closeness with my mom that I hadn't had previously. I waited until I was 29 to come out.

I only had 4 years with her after that. I wish there had been more.


My mom loved to shop. One of my favorite things to do with her (aside from playing card games and board games) was to go shopping together. We'd shop and then have lunch and shop some more.

Historically I've gone shopping on the day of her death and when near enough I'd visit her grave. Since being sick visiting her grave is no longer an option. I live too far away.

I don't have money to shop. I wish I did. It would be comforting. I'd love to buy a pair of flannel pajama's or that pair of microflannel sheets on sale at Penney's. Just some comfort as a balm to the sadness and the aloneness.

Instead I'll honor her by writing this blog post and changing the hummingbird feeder and then I'll go sit in the backyard and watch the chickens and let my tears be a testament to how much I love her.


Eressea said...

Thank you for sharing this story with us... it moved me to tears (that's a very rare thing for me), so you're not alone. She must have been an amazing person! I think you are a lot like here, if one can judge such a thing from just a blog. I've followed this blog for a long time, and cared deeply for you and your intense struggles, but never dared to post a comment... Sorry for that. Thank you so much for writing all this down!

Lee Lee said...

aaawww Terri you made me cry LOL. Some of your story reminded me of my feelings around the time of my partners death. It's weird how those memories can seem tragic and beautiful at the same time, and yet they do. And those memories always bring a flood of emotion ever years after the event. Thanks for sharing. xo

Anonymous said...

this is lovely.

Brount said...

I only found this because I was searching cfs tags ~ it made me cry so much. My partner, my daughter's father, died two months ago after a horrifyingly short illness that we didn't recognise anywhere early enough as serious. She's only 24 and although she's been brave and incredibly helpful as I can see you were to your family it has knocked the stuffing out of her. I try not to cry too much in case I stop her getting on with her life so your piece has helped in terms of lone crying. Your mum sounds wonderful, now I'm frightened because I don't want to leave my daughter yet ~ thank you and I am so sorry if this feels like I'm hijacking your story

me/cfs warrior said...

Brount-I'm just now reading comments and am seeing what you wrote. What you wrote hasn't hijacked my story. Is it you who has cfs? Or did your partner? Or your daughter? When you talk about leaving your daughter I wasn't sure what you meant.

It sounds like you both have had the stuffing knocked out of you.

If you'd like I can lend an can contact me at

Two months is such a short time ago. It's ok to cry. Your daughter will know how much you are hurting regardless of how much you cry. It was healing to me to cry with my family.

Hang in there...

me/cfs warrior said...

Eressea-thank you for taking the time (and energy) to leave a comment. Thank you also for your compliment in saying I'm like my mom. My mom was an amazing person. Your comments meant a lot. Thank you for continuing to follow me in this journey.

me/cfs warrior said...

Lee Lee-hopefully you got some toxins out with those tears... : )

I know exactly what you mean about that mixture of tragedy and beauty.

Some years are tougher than others in terms of anniversaries. This year was a little tougher than previous years but that's okay.

me/cfs warrior said...

Anonymous-Thank you...

Alison said...

Such a beautiful story. Your mom sounds like she was a really great person.

Jessrose21 said...

What a beautiful tribute to your mom. Thank you for sharing this; it touched my heart and reminds me not to take the time I have with my mom for granted.