I try to keep this blog a fun place over all – one to share in the love of all things crochet and to provide an oasis from the troubling news of the day; however, on this day, forgive me for posting a more sentimental post…and one that has nothing to do with crochet.
Today would have been my mother’s 73rd birthday, and it is the second birthday that we are celebrating since she passed.
Mom, Desi, and Me – Easter 2009
And while I miss her and think of her every day; it is today that I think of her most and feel her absence most acutely.For most of my life, my mother battled a chronic illness. She often joked that once she hit 40, everything went downhill; and she wasn’t entirely wrong. After 40, she developed TMJ (which required her to have surgery on her jaw), had to have a complete hysterectomy, and contracted a chronic illness called Chronic Active Hepatitis. It was the Hepatitis that she battled the longest, but which won in the end.
I remember this like it was yesterday, although I was Desi’s age when it happened.
We were sitting in a restaurant near our home, Mom and Pop were sitting across from me and we were enjoying our dinner when I looked over at her and noticed there was a slight orangey-yellow tint to the whites of my mother’s eyes. I remember remarking about it to her, and she sort of dismissed the observation saying the lighting was poor and it was an illusion. But, it wasn’t – it was the start of her illness.
Fast forward many months, many doctors appointments, and a lot of stress later, and the doctors told my mother that she had contracted an illness that was basically turning her liver to Swiss cheese. They had no explanation as to how she contracted chronic active Hepatitis, my mother never smoked, never drank, never did drugs; and, yet somehow this illness was destroying her liver and eating it from the inside.
The next number of years were difficult. There would be periods where we would be lulled into a false sense of security – that maybe the doctors finally had this illness under control, only to have a terrible flare, or for Mom to start retaining water and need to be hospitalized to drain the fluid that her liver was no longer capable of properly filtering.
By 1995 her condition had deteriorated so greatly that she went from a size 18 clothing to a size 4…not because of dieting, but because her body was literally eating itself. She was placed on the transplant list and was told without a donor liver she would only last six more months. Although I wasn’t a terribly rebellious teen, my mother and I did clash occasionally as parents and children are want to do, but I remember the bone deep terror of realizing that I hadn’t even graduated high school (I was now 17).
The night of January 31, 1995, my mother and I lay in her bed and watched the movie “8 Seconds” with Luke Perry, and then watched an episode of the short-lived (and underrated) TV show “Marker.” We went to bed and just thought it was another day. I was awakened from a sound sleep at about 3 am the next morning – my mother had gotten a call; they had a liver for her.
She went to the hospital and underwent the surgery, after recovering everything seemed like it was going to be back to normal, until about a year later.
Mom would always say she knew the exact moment that her bile ducts (that connected her liver) popped. She was getting up and she stretched – a nice big stretchy stretch – and she felt something pop inside. It wasn’t long after that things went downhill.
The official diagnosis was that her liver was rejecting. As a temporary measure they inserted biliary catheter tubes into her sides to keep everything flowing correctly. While this was supposed to be “temporary,” the tubes remained until her passing – having to be changed every two to three months.
Even though she had the inconvenience and discomfort of the catheters, my mother was one of the most positive people you would ever meet and she didn’t let anything keep her down. For the next several years while she had some minor set backs, everything was pretty decent and she remained in good health.
She got to be there when I graduated high school and collected, when I got married, when Desi was born, and all the seemingly insignificant times in between. Her spirit and strength constantly amazed me and she was nothing short of my hero.
After a good almost 20 years, in 2013 my mother’s health started declining. She went to the liver clinic at the hospital and went to every doctor imaginable to see what was happening, but no one really was listening to her. She had several bouts of severe illness, reminiscent of before her transplant, and then on September 1, 2015, she was admitted to the hospital for a high fever and severe fluid gathering in her stomach. She would go on to spend 99 days in the hospital recovering, including two weeks in a coma.
During this period in the hospital, the doctors determined she required dialysis because not only was her liver deteriorating again at a rapid pace, but it was putting too much strain on her kidneys and they were shutting down, too.
When she was released, just before Christmas 2015, the doctors told her she would require three days a week dialysis for the rest of her life and that she was in end stage renal failure. I remember Christmas that year, she was laying on my couch, and I was sitting on the opposite one after dinner and we were just talking while my father, Steve, and Desi were off doing Heaven knows what. She was more depressed that I had ever seen her, and she said she just didn’t want to do this. The fact that she had to have dialysis the rest of her life and there was no end in sight just broke something in her.
After that night, her health seemed to rapidly decline. We knew she needed a new liver – but she was not a candidate because of the previous liver rejecting, her age, and her over all poor health. She rarely left the house, except to go to her appointments, and although I was used to talking to her multiple times a day, every day, I only talked to her through text now because she didn’t have the stamina to talk on the phone.
Despite her poor health, on May 7, 2016, she was determined to go to California University of Pennsylvania to see my niece, her oldest grandchild, graduate from college. I was unable to make the trip. From all accounts, she had a good day. After the ceremony, she came home and went upstairs to lay down. My father went up to check on her every 30-90 minutes. The last time he went up, she wasn’t breathing.
He attempted CPR and called the ambulance and I met them at the hospital, but it was too late. She had passed. My father continually blames himself for her passing; he feels if he would have gone up more regularly or have forced her to go to the hospital that she would have lived longer. I tell him he couldn’t have done more. And, I think this was what she wanted. She was tired of all the doctors’ appointments, and the needles and the pain and not being able to have a quality of life. She didn’t want to go back to the hospital…and especially didn’t want another 99 days in the hospital. I tend to believe she knew her time was up and she didn’t want to fight any more, so she let go – and did it on her terms, in her bed, in her home that she loved so much and had so many vibrant memories.
Even though I believe she went on her terms and that no one should feel any guilt for her passing, I miss her dearly. I miss her advice. I am sad that Desi’s memories of her will become so obscured with time. So, yes, today, is a difficult day, but I am glad to have been able to share some of my mother’s legacy and strength with you today.
Hugs and cuddles,