Terri Lyn’s Story
I know my story isn’t unlike most, but it is different because it’s my story. Grief, in itself, differentiates between individuals. It’s personal, you own it because it’s yours and yours alone and no one can tell you when it’s time to “get over it” or when it’s time to “move on”. There is no “closure”; man I can’t stand that word. I say this because, like many of you, I’ve had people say “it’s been long enough, you should be “over it””.
I grew up in a small community, very small; it truly was a village in northeast Ohio. I had parents that loved one another and were committed 100% to one another their whole lives. They raised my sister and I to be the best people we could be but always strive harder to be better; accept our indifferences and learn from our mistakes. Dad, a hard working blue collar worker at Chrysler and Mom a professional executive secretary for a large airline interior manufacturing plant; she was the secretary to the president of the company until his passing many years ago.
On January 3, 2014 my mother suffered a grand mal seizure just after my parents had finished eating dinner out. They had just gotten in the car and mom started speaking funny then convulsing. They happened to be near a fire department, dad drove over there and an ambulance rushed her to a local hospital. It took the ER doctor and staff over an hour, pumping her full of meds, enough to knock out an elephant (their words) to finally stop the seizure. By this time she’d bloodied her mouth and tongue, but she was alive. They moved her to ICU under heavy sedation from the meds.
I’ll point one thing out first, there were very few hours in a day that either my dad, my sister or I wasn’t with my mom; regardless of where she was.
I can’t recall if it was the next day or a couple of days after but we met with the neurologist outside her ICU room and were told she had a brain tumor; cancer. They said they believed it had been very slow growing over years and finally reached a stage where it touched a part of the brain that set off the seizure. There were subtle signs for a long time that we missed, such as change in writing, temper, memory, and sensory of limbs.
Mom slept off her sedation for nearly 6 days and when she started to wake, she had no recollection of anything (which we thanked God for). We had to have her transferred to a hospital better suited for her cancer treatment so she was transferred to a Cleveland hospital where she stayed until ready to move to rehab, prior to any surgery. During this period of time, she did not know she had the tumor. This gave the doctors time to evaluate her condition and assign a surgeon who would, eventually, perform the surgery. We stayed with her day and night, even fighting the blizzard conditions to get to her, just so she wouldn’t be alone; she didn’t want to be without one of us.
Skipping ahead after rehab, she finally met with the oncology doctor with my dad and sister ( I didn’t attend any doctor appointments, I was in total denial ). She was finally told by the doctor about her tumor; advised it was stage 3 glioma; survival rate less than 6%. Surgery would need to be performed to resect the tumor then a plan would be formed afterward for any other treatment.
Day of surgery - February 4, 2014 we had to be there very early. We were all a bundle of nerves; can’t imagine what mom was feeling. We waited hours past the time; the surgeon was delayed because of complications from the first surgery. Once they had mom prepped, we were each allowed to go back, one at a time, to see here beforehand. She said to each of us “I don’t want to do this today”! We should have listened to her; but we assured her it would be OK as this is what the doctors felt was best. We couldn’t have been more wrong. She suffered a massive stroke on the table.
It was very very late when they finished with her so we did go home but returned very early the next morning. I had a major meltdown when I saw her; she was just coming off the elevator as they’d had her in for a CT scan, or something like that. Her face distorted, eyes open, head to the side.. I yelled, what the hell is wrong with her? What did you do to my mom? I just kept yelling at them. My aunt, my mom’s sister was there too and she left the room. My dad; I don’t know because I don’t remember looking at him. They finally told us what happened and I was just so freaking angry. So angry that none of us listened to her! We didn’t listen to her to NOT have the surgery that day. The surgeon was tired from the longer surgery before. It was a slip of the knife, so to speak, that did this. I felt we lost her right there.
Somehow, someway the good Lord brought her back to us with help from rehab and a lot of work. She wasn’t and wouldn’t be the same, never again, but we had her back as the mom we knew. She could walk, talk, write, joke; be most of her old self. Of course there were limitations but I would take it; we’d take it.
By April 2014 plans were underway with the oncologist; again, I didn’t attend any doctor appointments. As I said earlier, I was in denial this whole time; mom wasn’t going to die, she was going to be fine, regardless of what the doctors said. My sister would call after appointments and say “well, it’s not good” and I’d scream at her and say “don’t say that, why do you say that?”. The plan was 5 days a week for 3 weeks of radiation; I was against this. My reasoning was, they got all but a very small portion of the tumor. It was a small growing tumor to begin with and she was on anti-seizure meds; why put her through this? But, again, you listen to the experts (doctors) because you believe they know what's best, right? WRONG!
During the whole time, from January 2014 to up until Mom was about to start her radiation, I was falling apart. I was worried how we would manage with her at home, the travel to/from the hospital every day for radiation treatments and all that goes with this. I knew Dad couldn’t handle this on his own. I began to sabotage my job by April 2014! I then lost my job, but it worked out perfectly because I was able to be there for my parents starting in May 2014 when mom had to begin her treatments. We had to rent a mobility van for a few weeks, in order to transport mom in her wheelchair to and from the hospital. It went well for the first week or so then, as the radiation started to wear on her, the travel got harder; she was so weak. She couldn’t hold herself up in the chair. Radiation took everything away from her; radiation took her away from us. Anger, once again, took over.
It got to the point that we called in a company to help us with home care; they were there many hours during the day, I was there many hours when they weren’t, my sister was there, my dad was always there. We were doing what we had to do with no instruction, just doing it. Mom continued to get weaker and weaker, even after the treatments were done. Eventually a pic line was put in so we could provide nutrition via a liquid source. She continued to lose weight, muscle mass and could no longer lift her arms or legs. We bathed her, changed her undergarments, sat with her, rubbed her feet, watched TV; whatever she wanted to watch. The many times in and out of the rehab after a hospital stay was exhausting. We were only allowed to leave her at night when she said it was ok to do so, many times it was very late. Many times I could expect a call during the night saying “Terri, I need you” and I’d go running to her ( I was only less than 5 mins away ). We walked, endlessly, the hallways in the rehab with her in the wheelchair to keep her happy; wish I knew how many miles we put on that chair. I would give anything to have that back.
She was wasting away before our eyes and there was nothing we could do to stop it, no matter how hard we tried, begged and pleaded. She said many times “you’ll be fine without me”, after her couple of near death experiences during this whole ordeal. I would get so angry with her for saying that, usually leaving the room to go breakdown somewhere else.
My mom was fierce, a spit fire, smart and a smart ass at times. She was the matriarch of the family; the glue that held things together. She taught me to be the professional that I am today; I am my mother’s daughter, as I like to say.
September 3, 2014 I just sat down to get my hair trimmed and my dad called hysterically saying “your moms not breathing and the paramedics are on their way”. I flew out of the chair and drove as fast as I could to the house; only being minutes away anyway.
I arrive at a scene you only see on TV. Paramedics hovering over a naked body, boxes and supplies everywhere, medics compressing the chest, inserting an incubation tube while throwing questions at you about the “patient”. I fell on my knees and put my moms head in my hands and her beautiful blue eyes opened slightly and I looked at her and begged her to not go; her eyes closed but I continued to hold her head while they worked on her. The one paramedic took me aside and asked me for her drivers license; I knew they wanted to see if she was a donor; I knew they knew she was gone. I had called my sister, she was too far away to make it in time; the paramedics had already left with her before she got there. Remember how I said I grew up in a small village? The cops on duty came to the house; they got out of their cruiser and held both my sister and I. My dad was in the house with my uncle and another family friend, who’d come to drive us all to the hospital where we were taken into a room where a doctor, who didn’t know us or mom, came in to say she died. We got to see her for as long as we wanted too before leaving the hospital.
We had to support, physically, my dad while walking back to the car. No one talked, and didn't know what to feel. Getting back to the house, my sister immediately went into the living room and removed all sheets from the hospital bed, rearranged the room back to what it was, moved the bed out of the way until it could be picked up, cleaned up; I don’t remember seeing her for a while. I was out on the back porch just sobbing for hours. How were we going to tell the grandkids, who were so close to mom? My sister lived behind my parents, her kids were first to arrive home, they were first to know and they didn’t handle it well at all. My son was brought over by my husband after he got out of school, but knew by then. They all huddled around my dad and gave hugs.
You just find a way to get through the next few days and weeks. Plan the memorial, get other things in order and I found that I buried everything for the last 9 years.
Mom has missed so much. My son getting his drivers license and graduating high school. Her oldest grandson getting married and the birth of her first great-granddaughter (and another due this July). My son getting a motorcycle (she would have flipped a lid at that one). Her middle grandson graduated college and my son getting married last September and is now expecting his own child; to be her third great grandchild and so much in between. I’ve been angry at her for leaving at the age of 73; I wasn’t ready for her to go. I still needed her.
I’ve been in counseling the past year battling the what if’s, the why’s and the regrets. The anger, resentment and distrust I have for the medical community is overwhelming; I question everything now and trust little. I hate, yes hate, myself for not hearing her that day, not trusting what she felt in her gut, that it was not the right day to do the surgery. I regret not making a better case with my dad and sister about the radiation and asking more questions about “what if she doesn’t do it?” I second guess everything that was done. Through counseling I’m working through all of this, slowly.
I know this is about our mothers but I want to add I lost my dad July 8 of 2022 and although I am certain he and mom are back together, losing him has had its own heartbreaking issues this past year as it brought to head the death of mom that I buried for nearly 9 years. I know that mom was reaching her hands out to him to lead him home, but like mom, I wasn’t ready for dad to leave either at.
Telling this story has been very emotional and not even close to all of it, but having a place to tell some is most appreciated.
I wish everyone who reads this their own healing journey and please reach out for help because of the grief of losing a mother; it’s unlike anything I ever could have imagined and remains so today.
