A honey-ism of a different sort...this is my attempt to both honor her courage and spirit, yet also purge some of the darkness from her last days. I may never share this...but if I do, be forewarned there will be tears and sorrow....there is no happy ending. It's very much about human suffering and the remarkable capacities our bodies have to not only endure it but defy it.
It's about the love that binds us and allows us to make great sacrifices for each other...to bear helpless witness to the atrocities of disease...of age and of the realities that we will all one day face...death. In the end all of the things we accumulate, the degrees and honors we've earned are not what we will be remembered by. What remains is how you lived...who's life's did you touch and make better? Did you make a difference?
These are the questions that my honey asked often...and with rare exception, she doubted her contributions. Doubt or no, she firmly believed that if you planted a seed; however small that it would blossom and in so doing cause a ripple effect impacting others that you would never meet. Her optimism was just one of the things that I loved about her. She always gave more than she took...at times to my annoyance.
I've written of our last camping trip which we took a mere two weeks before her final day. Even then we both assumed we had many weeks, perhaps even months left. She was weak, only able to shuffle ten or fifteen feet at a time but still eating and drinking. A few days into our trip, she started to noticeably slur her words sometimes...we both knew this was trouble but she was determined to enjoy this time. We spoke of it late one evening and she told me bluntly.
“If I'm to die, then here is ok. I'm surrounded by my family and doing what I want.”
She'd held me while I'd sobbed...soothing me as best she could. When the tears tapered off, she'd handed me a Kleenex and kissed me very softly, telling me.
“It's ok boy.”
It wasn't...not really but what else could we do? With few exceptions (she would vomit without warning) we had a great week. It was cool for her (75 degrees) so she kept her jacket on and had a blanket handy. I know it annoyed her...my honey has always loved being outside and in the sun. She pushed HARD and by Saturday morning she was exhausted. After eating lightly, it didn't take a lot of convincing to get her to lay down and take a nap, under one condition. I'd wake her up to help prepare dinner for my brother and his wife's anniversary dinner.
My brother Joe and his wife Lisa are extraordinary people...twenty nine years together...under some of the most trying conditions. An amazing network of family...parents, grown children and life long friends...they all loved my girl and she them in return. My honey's exact words where,
“I'll be DAMNED if Lisa is going to cook her own anniversary dinner!” I've been with my girl a while, so I saluted and said smartly. “YES MA'AM!” And so, with the help of Lisa's Mom, Tj and I cooked the majority of their dinner. Nobody left for McDonalds, so it must'a been ok.
:)
We went to bed early and said our goodbyes the next morning. She slept most of the way home (it's about five hours) but after a rest stop, which of course necessitated getting out her wheelchair and O2 tank, she asked me.
“Would you like me to drive a while?” She was quite serious.
Smiling, I told her thank you but I'd be alright. After getting her back into the car and the gear stowed, I was sliding into the drivers seat and she taken my hand, squeezing it as hard as she was able to. When I'd looked at her, she'd smiled a little sadly before saying softly.
“I'm so sorry you're having to do everything.”
Gently returning her squeeze, I kissed her forehead and told her not to worry about such nonsense. My honey just nodded and sighed. As we pulled back onto the highway, she asked again.
“You want me to drive for a while?” Fighting tears, I'd squeezed her leg and told her I'd be ok. A few minutes later she was sound asleep...
Getting back home and unloading all of the equipment took some time, when everything was setup and ready I went and got my girl and we prepared to walk up the fourteen steps to the main living level. With my bad knees, (no cartilage in either one) the passage is painful more often than not. I'd offered to carry her up and of course she refused but it was apparent every step she took was a monumental effort for her. It took several rest breaks and about ten minutes or so but we went up, with me holding her waist from behind to steady her. At the top, she relented and let me get her wheeled walker so she could set on it and I could push her to the couch.
Once I got her settled and had her some water and the assorted paraphernalia she kept on her little TV table, I plopped down in our big chair and as tired as I was, my girl was completely exhausted. Even so, she'd chided me about getting my knees fixed. It was an old argument but it brought a smile to my face which annoyed her. She'd said, “What's so funny?”
Chuckling, I got up and kissed her answering. “You are! My focus is YOU! My knee's will keep.”
Becoming whimsical, she'd stated. “I think that's the last time I'll beat you up those stairs.”
I'd sat by her and we'd talked about our trip and the boy's upcoming arrival, then only four days away. I had no idea then of how quickly things would change...I believe my girl did or that she at least had a feeling of it. I didn't know that she'd elicited a promise from my sister in law...to make sure I wasn't alone when she passed.
She'd gotten several promises from me during our week away as well. One was that if it was possible, her boys not be there until the very end. She didn't want that to be their last memory of her. I think she hung on until she got that wish...stubborn until the end.
I went to work that Monday and Tuesday evening but by Wednesday afternoon it was clear she needed a hospital style bed, so our hospice team made it happen. I cancelled her regular doctors appointment which was scheduled for Thursday morning over her protest. She wasn't upset over stopping the big shots she'd been getting once a month but she truly loved her physician and the staff and wanted to visit with them. I knew she'd be unable to make it back up the stairs....at least not without the real risk of her falling. Even as sick as she was, having my honey pissed at you wasn't any fun!
I finally got her to relent by telling her I'd reschedule it after our oldest son arrived so he could help me. That calmed her down and I picked our son (David) up later that morning. Our youngest would arrive two days later, along with my brother, his wife and their daughter and her boyfriend. Since the plant I worked for was starting it's planned shutdown, I'd been scheduled to go to dayshift and stay until the 9th of July. Honey and I had a plan in place for this...it just didn't work out that way.
Since there was family present, I worked that three day weekend..Friday, Saturday, Sunday. Each evening when I came home after my 12 hour shift, the changes were drastic. That evening, July the 2nd my honey seemed to be quickly fading. Her breathing was labored and she dozed in and out of consciousness. I called the hospice nurse and while we waited for them to arrive, both of our grown boys poured their hearts out to their mom...it was heart breaking and meaningful at the same time. When they had finished, I knelt down and tearfully began to whisper my own goodbyes...I'd barely started when she opened her eyes and looked at me directly, very clearly saying. “That'll be enough of that stuff!”
My mouth clicked shut with an audible snap. About that time the nurse showed up and my honey wanted to know what all the fuss was about...REALLY??
After taking her vitals and reassuring us that this was fairly normal but warning us that my girl could go at any time. The nurse left and we all sat around both stunned and bemused...while it might be normal medically, it was certainly not what we had been expecting. Our original plan was that I work until our boys flew out (the 4th & 5th ) and that we'd do a hospice transfer until I returned to nights. I cancelled all of that. Fortunately, my work was more than understanding when I told them Monday morning that I couldn't leave her anymore.
Both of our boys wanted to extend their stays but my honey nixed that. She told them to get back to their fiance's. Each morning for the next two days my girl would ask who was still here...it was a checklist for her. My brother and his wife stayed. As did their daughter and her boyfriend until they were forced to leave on the fourth, along with our youngest son. Those two days were both difficult and amazing. Even though her speech was slurred and her body was failing (she could no longer sit up unassisted) the conversations she had with those that loved her are something I will always cherish.
Her oncology doctor called her at home and spoke at length with her. She'd missed not seeing her at her scheduled appointment! When asked how she was doing, my girl had replied.
“I'm fine. How are YOU doing? Did you enjoy your vacation?” She'd remembered that her physician had told her she'd be on vacation for the two weeks before her appointment...incredible. When she was finished, honey said. “I love you too Amy.”
Taking the phone I could tell that her doctor was trying very hard to be professional but that she too was quite emotional. We spoke a few minutes and she told me she'd be conferring with her hospice physician first thing in the morning.
My girl did a quite a few things that were in my opinion, pretty fantastic in hindsight. She would remember things that I or even all of us had forgotten. She made only one demand during this ordeal...she wanted a slushie. Cherry. Right now. This was later on Monday evening and while I was scratching my head trying to figure out WHERE to get a plain cherry slushie from (along with everyone else!) my girl shook her head in disbelief, telling us all.
“They have them in the movie theater.”
DUH! She was right! My wonderful niece, Alyssa went with her boyfriend Dan and got her one. To my delight and surprise, honey drank about a quarter of it. Sipping happily, she'd thanked them and questioned where they'd got it from. Bittersweet.
I know that the hardest part (one of them anyway) was when she'd wake up and not remember what was wrong with her. She'd realize how weak she was and look at her arms and legs, panicking she'd exclaim. “What's WRONG with me?!” It would take me snuggling close and whispering lies to calm her....”You're ok babe...ssh....it's alright...I'm right here.” Eventually she'd drift back off...but it kept me awake for nearly three days.
After our youngest son had left along with our niece, late on the fourth. She'd asked again about who was still here and specifically when our oldest, David was leaving. I'd told her and she'd nodded, asking. “Where's Lisa.”
I replied. “She's here babe.” Another nod and she said “That's good then.” she'd drifted off mid nod and all I could do was weep. Lisa had pushed our big, overstuffed chair next to the bed and with few exceptions, I hadn't left it. Very early on the morning of the 5th, sometime between three and four, I remember my girls eyes opening abruptly and as they locked with mine she said very clearly.
“I apologize.” Moving inches from her face I'd asked her what she thought she had to apologize for and she'd replied. “For leaving you.” I'd kissed her softly and cried as she drifted away. It was the last thing she'd say to me. Our oldest son left late that day and he'd thought she was completely gone because she wasn't responsive...but I knew she was still there...deep inside herself, away from the pain and humiliation of her body. I could feel her...
I dozed off in the early morning hours of the 6th and I startled awake, jerking upright in my chair. Lisa was asleep in the recliner and my honey's breathing was irregular but steady...but I knew even before I smelled the urine that my dear baby had gone. She was home. I held her hand as the tears flowed...her body was still breathing, but that presence... her beacon...was gone. I don't know how long I sat there quietly sobbing but as the room got lighter I gained enough control to blow my nose and wake my dear sister in law. She knew...by my face...and because I think she too couldn't feel my girl's light any more.
I called her nurse, who said she'd be on her way and then told Lisa that I had to clean her up and change the bedding. Being the strong woman she is, she refused to let me do that alone. It was the hardest thing I've ever had to do...we both sobbed the entire time...that's love. That's sacrifice. She and her entire family have made so many of them for honey and I this past two years...it's something I can never repay but it won't be for lack of trying. Anyone who's gone through something like this knows the details and the reality. Bed sores. Changing and cleaning the one that you love most of all...
Shortly, her nurse arrived and took her vitals gently telling us that while we were most likely right in our feelings, that Tj's heart was still beating strong and while she hoped it wouldn't be a long struggle, it could be simply because of her relative youth and strength. I truly believe that hospice workers and the nurses in particular are among the most special and loving people you'll ever find.
Around noon, my sweet sister-in-law along with my brother insisted I take a nap....I'd been up for quite a while and agreed under the premise that they'd wake me in four hours. I'd just laid down when Lisa knocked on the door and my heart leapt into my throat...cursing myself mentally, I flung the covers back as she entered the room and said. “It's not that...but I know you'd want to see this.”
We live in a condo. When you come up the stairs, there's the living room which is open to the kitchen. A short hallway has two bedrooms on the right and a bath on the left with a laundry room in between. Standing in the kitchen where three women I hadn't expected to see again. It was Tj's oncologist, her P.A and her head nurse...(not her hospice team) they were all tearfully there to say goodbye to my dear honey. I don't mention them by name on purpose...I wouldn't want any of them to get reprimanded. They came because they loved my girl...these dedicated professionals shed tears and hugged us all because they had come to love my sweet girl as she had loved and respected each of them. I'm still awed by it. I cried and of course thanked them for all that they had done...for all of their effort and heart. More evidence of those ripples my honey talked about so often.
They stayed much longer than I would've thought and when they'd gone my heart was lighter. It was a little after one when I laid back down...it seemed like my head had just touched the pillow when I heard the door open. It was Lisa and her face told me what I'd both dreaded and hoped for...it was a little after two pm. I came and stroked her face and kissed her forehead. I sat in my chair...taking her hand and waiting for her chest to rise. It never did. I thought I was cried out but I was wrong...after a while, I tearfully called her hospice nurse back and she came fairly quickly. Official time of death...2:35pm.
More tears after the funeral home team arrived a short time later. They'd told me I might not want to watch and that they'd be as gentle as they could...I'd nodded and stayed. Until the end...even though it was late in the afternoon, our hospice team rushed to clear out all of the equipment and reminders. I called our boys and some relatives and friends. My sister in law was in overdrive...moving furniture...cleaning, anything to distract herself and stay busy.
Within hours, those ripples my honey spoke of started returning in ways I'd never imagined. A young man (it would end up being TWO) that Tj and I had trained with but not seen in years, called from San Diego where he's station as a Marine SGT and told me he'd gotten approval for emergency leave. He'd be flying in Saturday morning. Even though he'd just returned from a 9 month deployment and had a family of his own...
Unknown even to him, his younger brother was making the 10+ hour drive and would arrive late Saturday evening...he too has a young family. They both planned on staying the week until I returned to work. They brokered no argument...they were coming. Period.
Tj and I knew their father and mother and all the siblings trained with us. They'd lost their father (my best friend) to cancer 13 years ago. So...after having stayed much longer than we'd originally planned for, my brother and his wife returned to SD Friday afternoon under protest. I'd held them and thanked them but not only did they have a small business to run but a 12 year old son that needed them too.
Jared (the first to arrive Saturday) accompanied me to pick up honeys cremated remains late that evening. As a veteran, honey also received a folded flag. She'd have been so very proud of the ramrod straight Marine that took it for her...the same young man that shed tears and held me as I sobbed at our vehicle...lost for long minutes in agony. I quite simply could not have done it without him.
When his brother arrived some time later, the reunion was again tearful but I was also overwhelmed with joy at the simple and honest love being shown to me and my dear honey. For four days we shared stories, caught up with each other and grieved openly. Although they'd planned to stay the entire week, I was able to convince them to ride home (TN) together and surprise their mother. It would give the two of them some much needed brother time and allow Jared to fly back to his family and spend a few precious days recouping before returning to the grind of inspections that all units endure when returning from a deployment.
While all of this was going on, three wonderful ladies that Tj was friends with sprang into action to setup and execute her memorial. Honey had been adamant about not having a traditional service. She wanted an outdoor gathering to celebrate her life in a casual manner. No dress clothes. Snacks and drinks, preferably a park so the kids could play. These terrific folks made that all happen. To Donna, Diane and Kim...thank you.
She got want she wanted....as my honey usually did. Her passing drove home (to me) a point she'd always tried to lead me too...that if you love others and give of yourself without expecting or demanding in return, simply do it because its the right thing to do...then the right people will reciprocate. Maybe not to you but to another person in need, then that's a life worth living...
You were right babe...it's just the tiniest piece of why everybody loved my girl. Almost as much as me.
