My mom passed away one year ago today and ever since, I have been adding a little bit here and there to this blog post, knowing I’d want to publish something on the anniversary of her death.
At first I was going to write about her life. And maybe someday I will. But now right now. Today I want tell you the journey she took to her final resting place.
She was diagnosed in August of 2009 with a rare type of T-cell lymphoma. She had already been displaying strange symptoms since March of that year but it took months of tests to finally diagnose her. After 6 rounds of chemotherapy, she was declared to be in remission by her oncologist. We celebrated that Thanksgiving. It seemed it was a miracle, although we were warned this type of cancer could come back in a few years and chemo might not work.
That news did not deter my Mom from living her life as “wild” as a 62year old could. She spent as much time doing things she enjoyed and said YES a lot more than she said NO. She would babysit my nephews more often. She would attend my nephews baseball games and come with us to Cedar Point and went to every wedding and graduation party she was invited to. Lots of lunches and dinners with friends and family as often as possible.
In June of 2012, she started having symptoms again. This time, all the tests came back negative for lymphoma. But it was obvious to all of us, and her, that something wasn’t right. This time instead of a cough and a rash, it was stomach pain. And back pain. And loss of her voice. Although her voice never completely went away, it was probably one of the worst things to happen to her. See, she was quite the gabber. She talked to my sister every morning over the phone for years! She’d chat with friends over lunch, she’d chat with her customers at the bridal store she worked at. That was all gone once she lost her voice. Not to mention the pain she was in was heartbreaking to witness.
Now, I’d come downstairs to see her in the recliner, sleeping, or trying to sleep, and in pain. The worst was the feeling of hopelessness as you watch someone in pain and there’s nothing you can say or do to help. Too sick to go to work. Too tired to go anywhere. Too weak to even move off the recliner. This went on for most of the summer until August when removal of her lymph node confirmed that her cancer was back. It had been a frustrating time since every other test did not show the cancer. But her oncologist said it was the type that hides. Well, it stayed hidden for months.
The chemo this time around was changed slightly to treat the cancer. And after a few treatments it seemed to be working. As anyone who knows someone or is on chemo will tell you, it’s like a rollercoaster. She had her good weeks when she was able to have enough energy to shop and visit with friends and she had bad weeks when it took many days to recover from the chemo.
By the time Christmas came around, it seems as though she took a turn for the worse. It became harder for her to breathe and she seemed weak. She didn’t want to sleep for fear of not waking up. She slept downstairs in the recliner and there was always someone with her at all times. A few days before Christmas she went into the hospital and it didn’t look good. We weren’t sure she would be home for Christmas at all. But she was determined. She knew the situation wasn’t good but she also knew she didn’t want to die in a hospital. She insisted to her doctor that she was going to go home. I believe his initial reaction was, “We’ll see.” But my Mom was quite stubborn. There was no way she was going to miss Christmas.
The situation was so grim, that she actually sat with me in the hospital and told me her final wishes. It wasn’t really a conversation. It was definitely one-sided as she spoke and I cried. She told me the dreams she had for me, she told me how she knew everyone would be okay but that we should look after each other. She did say something quite funny actually: “Michelle, oh you don’t need any man in your life so you’ll be okay.” 🙂 Thanks Mom, ha!
But she also said some sad things like “I don’t think Sean will remember me.”
“I don’t have any regrets in my life…but I do feel like I’m being cheated a little bit. I really wanted to watch Matthew play baseball one more time.”
“I’ve never been afraid of dying and I’ve always been a faithful person…but I’m wondering where is my faith right now?”
“I know this last round of chemo won’t save me. But if I could just have a few more months…”
Well, God heard her prayers, all of our prayers. Because the next day she got the all clear to come home.
The first thing she insisted on doing when we got her home was to finish wrapping the Christmas gifts. She could barely lift the scissors and the tape but she insisted. She was adamant about celebrating Christmas. It was always her favorite holiday, especially to see the look on my nephews faces as they opened up their gifts. And us too.
As we celebrated Christmas that year, it was clear this was going to be her last. You didn’t want to think about it, you didn’t want to believe it. But you knew. And you knew that she knew.
January and February of 2013 were pretty good. We actually had hope for a little bit. The best was when her voice came back. I came down the stairs to the sound of my Mom on the phone with my Aunt. I said, “Your voice Mom!!! It’s back!” She was glowing, she was so excited. It was the first REAL evidence that there was some hope here.
But, most of the time, you could tell she didn’t want to get her hopes up too high. None of us did. I always prayed for her to be healed. To be cured. I couldn’t help but think, “Are my prayers just being ignored? What gives?”
Mom had one more GREAT day. She got to spend it with my aunt at the casino downtown and eating Paczki on Fat Tuesday. She said to my Aunt, “This was the best time I’ve had.” She took this picture of her in the car, with her paczki of course.
It was literally a week or two later that she was fine one day and bad the next. You always hear about how that happens and you always think, “Oh I’m sure they’re exaggerating.” No really, she was really okay one day and the next day she couldn’t breathe. She went in to get the fluid drained from around her lungs and her heart and while she was there she sent all of us a text that said: “Hospice worker coming at one. Can you come?”
Well that pretty much knocked the wind out of me. It was one thing for one of US to think about hospice. But when SHE is initiating it…that changes the ball game.
Ironically, when we all walked in around the same time, my Mom looked better than ever. She looked like she never had cancer. It was the strangest sight. The hospice worker even looked at her like, “Ummm…are you sure you need hospice?”
But that was our Mom’s gift to us. She knew none of us would ever recommend or even say the word hospice unless she said it first. It had to be her decision.
It was clear from talking to hospice that Mom wasn’t quite there yet and she had options.
She came home the next day though and we thought, “Okay maybe she has more time than we thought. Maybe this isn’t so bad.”
About a week later, she was back in the hospital again. This time she couldn’t breathe again, and needed to be drained, again. But as soon as they drained her, shortly thereafter, the fluid was back. It was getting to be too much and they couldn’t keep up with the drainage.
She needed to be put into a wheelchair to get back into the car. And when she came home we needed to help her into the house. That’s when she changed right in front of my eyes.
Her voice became tiny and high pitched, and she said her legs felt “weird” and she said she was ashamed and embarrassed that she needed a wheelchair to get into her own house. We told her not to worry about it but you could tell the life that was inside her was diminishing. I looked at her for the first time and she looked like she aged 20 years in that minute.
Two days later she asked for hospice. She sat there with me and told me “This is no way to live. Call hospice, it’s time.” I didn’t argue with her. I don’t think I even cried. I was more just in shock that this was happening.
I stopped praying for healing or a cure. I knew it wasn’t because God wasn’t answering my prayer, He was trying to tell me I was praying for the wrong thing. This time, I prayed for her to go home.
3 days later, she took her last breath with my Dad at her side. Those three days were quite possibly the most beautiful moments as well as the most awful three days of my life. No one should have to see a loved one dying in front of them. But there were moments from that weekend I will never forget and some day I will write a nice long post about it.
Until then, I take comfort in the memories I have of my beautiful mother. The notes she left us that we found at Halloween and Thanksgiving and Christmas. The pictures of her around this huge empty house. The sound of her voice and her laugh that I still have on saved voicemails and videos. And of course, the look on people’s faces when they speak about her. I have given up trying to tell people how amazing she was. They simply will never know her and as much as it hurts and pains me to know that YOU will never know who she was, it’s okay now. She lives on in me and my sister and my brother and my nephews. So if you ever want to get to know her, just ask me.
I could talk about her forever.
The Joyful Celibate 