As my family nears the one year mark of my mother Barbara’s passing, I have been looking back and remembering the long journey that took us to the moment of her transition to the afterlife. In reality, it began much earlier than the ten days I’m writing about here. For me, February 14th will always have significance because that was the day my mom acknowledged to me that she was dying. My hope is that these posts will help others who are grieving the loss of a loved one and provide some anecdotes to prepare those who still have those loved ones with them for the road that lies ahead.
I should back up for a moment and describe who I’m talking about. Those who know Barbara know how special she was- a prideful Italian-American from the suburbs of Boston transplanted to the desert of Arizona, a survivor of an entire childhood of child abuse who never let that abuse define her, a nurse-turned cop who loved the Constitution and victims advocacy. Barb lived nearly 40 years of her life with a condition misdiagnosed as Crohn’s disease and Raynaud’s phenomenon before finding she had an extremely rare and fatal condition called systemic scleroderma, outliving her initial prognosis by 8 years. She was a horse lover who lived every day as if it were her last. So many times in life, we are told about special individuals- Barb truly was a special woman with strong opinions and a personality that was as fiery and diverse as you could get- and I was lucky enough to call her Mom.
Back to the story…
Valentine’s Day fell on a Sunday in 2016. I will always remember it because my sons had just finished playing in a baseball tournament, and that Sunday they had played in three games. I had texted my Mom to wish her a happy Valentines Day, and on the way home from the tournament, she asked me if I would like to come up to her house. Looking back, I am so happy that we were able to spend some time together that day.
With my boys going to my ex-wife’s for the night, it afforded me some time to spend some time, just my mom and I. Over the preceding weeks, we had spent a fairly good amount of time together. She had started in-home hospice a little over a month earlier, and with my dad needing to focus on work, I tried to alleviate some of the pressures on him by helping with logistics. My parents live off the beaten path, and there were some issues making sure nurses could get up to the house initially, as well as some final doctors appointments. Still, there was something about that Valentine’s Day that was different. For one afternoon, there were no distractions. No rushing, or coordinating with people to make sure nurses were coming up to help her. It was just her and I spending time together.
When I got to the house, my dad was busy doing his normal weekend work around the yard (anyone who has been there knows the work seems endless!) While he was outside, my mom and I sat in their living room, catching up about the boys weekend, school- the usual stuff moms are worried about. Looking back, it was nice to get her caught up on everything that had been going on. Then, the tone of the conversation changed:
“Joey, honey, do you think you could take me for a walk?”
I was a little hesitant because, although it was sunny, it wasn’t exactly warm and my mom would normally have to be bundled up just for a trip to the car. But it seemed like she really wanted to do it, so I agreed. We got her hands and body all bundled up, moved her into her wheelchair, and started a slow walk out the door and down the driveway.
I have a few memories that really stuck out from that walk. She spent much of it telling me how to navigate the sand/dirt road- she was a horrible backseat driver. 🙂 But I remember her needing it- she kept saying how great it felt to feel the sun and the fresh air. We got to the end of the driveway, and I asked her if I should turn around. Incredulously, Mom told me that she was fine, and that we should keep going. I made a slow, wide left turn onto Old Paint Trail, and we started making our way up the slow grade towards Barb’s Trail.
She brought up baseball again- and how she wished she could go to one of the boys games. I told her that there would be other tournaments and we would make sure that we got her to their next game. This would be especially hard. Between the temperature outside, the condition of her heart, her fingers, pain management and the logistics of needing to be catheterized throughout the day, I realized that the chances of her making it were slim, but we remained hopeful.
At this point, we were a good ways up the road, and admittedly, my pace had increased; it was actually difficult to walk at the pace we were walking. My mind was focused on our conversation, and I found myself having to remind myself to slow down. I asked her if we should turn around- but again, she said no.
She talked to me about going back to school, and asked me to promise her again that I would go back to get my degree. Typical Mom conversation- but her tone was different. I understood how important it was to her (and me, for that matter), and I ensured her that it was on my radar. Mom was always my number one fan- no one believed in me more than she did. She reminded me that she got her degree when I was the boys age, and it would be a good example to the boys to show them the importance of going to college.
About halfway up Old Paint Trail, I was beginning to get nervous. Sure, she had the energy to get this far, but I suddenly realized that the farther our trip up the road went meant that we extended our halfway point on our walk. We still had to walk back! When I explained this to Mom, she agreed, and said she was starting to get tired. I turned around and started the gradual decent back down the hill.
The next part of our conversation is what I’ll remember most vividly:
“Joey, I have to tell you something. I don’t have much time left, honey.”
While the Boston accent was still there and the loving way that she spoke was still present, the tone in her voice was different. Normally, the way she spoke would tell me that she was looking for encouragement. This time, I couldn’t give her my normal response- that she would be okay and push through it just like she always does. I would normally joke with her or say something to lighten the mood. This time, she spoke with absolute certainty. This was not a time for jokes.
Just six weeks earlier, we had talked about her passing away- about going into hospice and what that meant. Mom was so concerned that we would view it as her giving up, and agreed to hospice only on the condition that they would leave once she got better. She was always fighting! All of us- my dad, sister and I, assured her that she had been through so much, and that we would never look at it as giving up- ever. It took us a while to convince her that we were all on the same page. Reluctantly, she accepted what we told her, but you could tell that the stubborn, strong willed survivor she was wasn’t willing to give in yet.
I reminded her of the conversation we had about going out on her terms, that I would have stopped fighting years ago and the bravery she showed everyone was an inspiration to those who knew her. For the first time, we spoke about her passing away in very real, sobering terms. She was worried- about my Dad, my sister Jenn, me and my boys. I assured her that we loved her and while we would miss her terribly, everyone would be okay and she would never be forgotten.
Mom needed to hear that. She needed to know that we were going to take care of one another- that we would not just be okay, but continue to live our lives to the fullest. Thankfully, she was sitting in a wheelchair in front of me as my eyes welled with tears. She needed those around her to assure her that the journey she was about to take was okay- now was not the time for crying. We shared how much we loved one another, and I told her how proud I was of her. As we made our way to the driveway, the conversation turned to a peaceful silence for a few moments. Then the backseat driver came back- instructing me which route to take back to the house. 🙂
The most beautiful thing about my Mom is the level of consciousness with which she always lived her life. She not only knew her life was coming to an end, but she was conscious enough to communicate with her friends and family that the time was near. For reasons they may or may not be able to control, some people aren’t fortunate enough to say goodbye, and spend time embracing the painful, yet beautiful moments when one passes away. Yet my Mom afforded us the privilege of those moments- and although at times they were incredibly difficult, I wouldn’t trade the ensuing days for anything.
Two days later, on Tuesday, February 16th, my dad called me and told me that Mom had asked me to come to the house. When I arrived, my mother was unconscious, and we were certain she would not wake up. However, she was a survivor, and her transition to passing away was just beginning.