Dear Mom, The visitor wristband from September 24th came apart in the shower this morning. I guess it was time. I miss you; I don't see that ever changing. Love always, "Pookie"
Tag: thomas jefferson memorial hospital
8 October 2020: I got a phone call.
Dear Mom, Dad called me today. He said that he’d been on the phone with one of your specialists. Dr. Lisa. She stressed that there was nothing any of us could’ve done differently. He wanted to reassure me that it wasn’t my fault that you’re gone. As he’s tried to do many times. My sisters have, too. I hear the words and I understand what they mean. “It wasn’t your fault. There wasn’t a thing you could’ve done or been differently to prevent her death.” I tell myself too. But it’s not that easy, is it? Denial can function in reverse. I hear the words and sentiments… but I’m stuck inside my own head. It gets dark in there sometimes. “She’s gone from us because you failed.” I know it’s not what you want to hear. I know it’s not what you want for me. I know that you would be taking my hand right now—tears in your own eyes—pleading for me not to ever think this way for even a moment. But I also know that you understand. I can’t pass a mirror without noticing. The scars haven’t faded completely from the catheter that was installed with hopes of collecting pieces of me that would save you. Even when the wounds vanish, I’ll still know. Whenever my fingertips glide across my neckline to adjust a clasp or chain, they graze the two shallow divots near my right collar bone where hope once lived. Evidence of effort, marks of love, traces of failure. Don’t cry, Mom… The last time I reached to hug you before your eyes closed was the night the hospital kicked visitors out because the pandemic reached the city, and everyone was in a panic. The transplant was only halfway through—my part wasn’t even over yet. The last video I have of us together captured a melancholy, but hopeful “goodbye” … forcing back tears trying to be strong for you while you forced back tears to be strong for us. I didn’t know it was the last time our voices would occupy the same space. “Don’t worry—I’ll see you again soon, Mom. I love you.” The last time you saw me, I was wearing a mask, but not even a mask could hide the pain in my eyes… not from you. Months later and just a few rooms from the left, I saw you for the last time—but you couldn’t see me. You wouldn’t open your eyes again. “It wasn’t meant to be.” We didn’t know. I should have ripped the mask from my face back in March and held you tighter. I should have smiled another memory for you, so the room didn’t feel as lonely, cold, and empty without us there. I should have refused to leave your side… I should have said or done more of something—anything… but I didn’t. Instead, I left. Just like they told us to do. I didn’t know any better… none of us did. I know people will say none of it would have made a difference. They want to be reassuring. “You did all that you could.” And they’re probably right. I hear the words—trust me, I hear them. And I know they should compute. But grief doesn’t always make sense. In fact, it rarely ever does. But I’m new at this. Everyone says it’s a process, but it feels more like a Möbius strip… I can’t pass a mirror without being reminded… without it all replaying in my mind… the strip tightening into a noose. “Focus on the good memories… she will always be in your heart.” I see the words. I identify the sentiment. They want to reassure, and I want to believe. I know you’re in a better place now, Mom, but I’ve found myself in a worse one without you… it gets dark in there sometimes. I forever miss you. Love always, “Pookie”
19 April 2020: It’s been 1 month since the transplant.
It has been 1 month since my Mom's Bone Marrow Transplant. 1 month since the date of her 'rebirth'. ❤ I remember the whole family had to resort to talking to her on a group video chat during the procedure since the visitor lock down/ban had us unable to be physically there with her. It was a rough few weeks for my parents--not being able to be near each other--having to communicate only over flip-phone and texting (before I taught them how to video chat via laptop)... the misunderstandings in tone... the feeling of long-distance 'not enoughness'... the ache of desperately wanting to be with someone currently unreachable. It took its toll but didn't defeat them. My Dad called me today because he needed help connecting to the WiFi at the place where they're staying for the week down in Philly (she still needs to be close to her specialists and monitored, etc.)... so they could watch Pastor's live church service together... and as I was trying to walk him through how to access the network, I heard my Mom in the background, "Keith, you have to find the one the says the WiFi network name! You can't just use that password for any of them!" to which my Dad replied, "Patty, if you knew that this whole time, why didn't YOU say anything until just now?" Hahaha.... I've missed hearing them occupy the same space. It made me smile. They really are so much better together than they are apart. For a moment, it reminded me that it's been over 3 months since I've been able to hug MY special someone or make goofy faces at him from across the room. What a strange emotion... to feel elation, hope, discouragement, and melancholy all at the same time. We're so much better together than we are apart, too. I hate that my parents had to be away from each other as long as they did... I know that my Dad wanted nothing more than to be there for my Mom as she was (and still is) going through the trials of the early stages of adaptation and recovery... but through it all, I think that it might have offered a morsel of perspective of the struggles and ache of loving someone from a distance. Sometimes understanding only comes through experience. My Mom celebrates 1 month post-transplant today... prayed up and getting stronger every day... she is the bravest and most resilient woman I've ever known and it brings me so much hope that despite the hurdles, obstacles, and trials over the past year+, there's a fresh chapter waiting for me somewhere in the midst of it all too. Happy 1 Month Rebirthday, Mom. I love you to the edge of the Universe and back.
13 March 2020: It’s been 6 months with him.
I'm not typically one of those people who flamboyantly celebrates "mini-versaries" of things... especially relationships. I'm not the "Happy 8 weeks and 3 days of being a facebook couple!" type [and I'm still not]. But this is my exception. [This might not be coming out so well because I'm also fighting a migraine at the moment and words are a bit jumbly in my head] 6 months ago--ironically (or algorithmically) also on a Friday the 13th while we were watching a horror film, Nathan 'asked' me to be his girlfriend... again... 20-some years after he didn't even ask the first time, just assumed I was (but I definitely was)... he didn't even technically ask this time either... just kind of put that we were "in a relationship"...so I guess we've been dating this whole time after all. 😛 Long distance isn't inherently easy. But we make it work. 6 months into all of this and he's been with me through more than some couples are faced with even years into their relationship. I'm writing this from the inside of a hospital room on quite arguably the most isolated floor in the entire hospital (air-lock entrance/exit, scrubbing in, mandatory mask/glove wearing, no eating/drinking, etc) and he has been with me through the whole transplant process. From the unnerving initial wait to find out if I was a match for my Mom to all of the health evaluations, exams, timelines, he's been there. And patient with me--even staying on video calls with me through the night while I'm here-- just to make sure I'm okay. I just... I feel so much better with him around...calmer... regardless of if we're falling asleep together watching a movie from 800 miles away, laughing at one of our shows, critiquing each other's cooking methods, making jokes, or whatever other silly shenanigans we get ourselves into... and I have never felt so loved. I don't have the greatest history of making exceptional choices, but 6 months ago I made the best one ever. ❤ Happy halfi-dating-versary, Charming. You're my person. [Don't get used to it though... after this it's just the yearly ones. Hahaha]
9 March 2020: It’s transplant day #1
Transplant Procedure Update #1: Day 1: [Un-revised Mind-Rambles] This morning, my parents made the 3-hour(ish) trek to Philadelphia to start the journey toward my Mom's healing/recovery. As I’m writing this, she’s enduring her first round of radiation… and for those of you who know its process, you understand what it means…”enduring”. For this procedure, it’s needed. Before they left (around 2:30-3:00 a.m.), I gave her the biggest but most gentle hug I’ve ever given in my life and reminded her, “don’t forget to cast your cares”. Hopefully, I’ll get to see her on Wednesday when I join her at the hospital (from my understanding, we will be in different places throughout the entire week—so I don’t even know if I’ll get to actually be with her at any point during my part of the transplant) but if not, I know that heartfelt hug will carry us through the days ahead. To be honest, I felt a bit empowered yesterday—being the only one really able to embrace her since she’s going to be sharing my blood soon enough anyway. I had to forcefully tug my ego down a notch. (just kidding). [Humor has always been my default ‘defense’ mechanism of sorts when I have something serious to say; those of you who know me, or who have been following my quirkily-eccentric life adventures over the years, can probably already identify the pattern in the way that I write.] It’s time to be serious now, though. [I wrote the first part for her birthday, but didn’t get a chance to finish it until today when it sort of took off in its own direction.] --- What more can I say to honor a woman who already speaks for herself through the selfless way she lives?—the very same woman who had been cultivating within me the meaning of sacrifice since the day her piercing gaze locked onto the blue of my father's eyes and she proclaimed that if it ever came down to the wire and a choice needed to be made between her or me during childbirth, she would choose me in a heartbeat and he must too. We were both nearly lost in the process of my delivery; I firmly believe that my parents' unwavering faith and the inconceivable strength of my mother's love saved our lives that day. As an infant, there were times when she wasn’t around as often as I’d have liked. I have traces of memories from the early years on Liberty Street [don’t worry, it’s not the answer to any of my security questions…but it might be my sister’s!]—missing the warmth of her voice when she left to work nights to help make ends meet for our family. One of the biggest sacrifices a parent can make is to have to spend time away from their child(ren) in order to offer them their best chance at life. I can’t even imagine the number of times she laced up her shoes and kissed me goodnight with tears in her eyes before walking through the door to head off to the Manor to clock in. Or how many soiled bed sheets she changed while watching the clock and praying time would go by faster so she could get off her feet and wrap her arms around her husband and children instead of an IV pole that needed to be wheeled down the hall to room 13. She must’ve been worn out by the time she returned through the doorway to the apartment… top floor, I believe. My sisters would know; they were older. [It was the ground floor; I stand corrected.] Through her, I learned what sacrifice means—the way she never spent a cent on herself when it was needed for her children. The times we’ve all fallen ill—including/especially her—and she kept going… steadying herself, as frail as she was, against the counter top just to make soup for us or measure out our antibiotics. She was always there with a warm cup of tea, a splash of milk and two sugars—she still is. “Nonnie tea,” Aria calls it. And for as much as she talks and opinionates (she’s Slovak, it’s expected), she also listens. I honestly don’t know how I’d have gotten through the past year had it not been for her shoulder to lean on when the rest of my life felt like it was crumbling right from under me. Don’t get me wrong though… we didn’t always get along so well. One time during high school when I was sitting on my bed (it was arranged in the room differently than it is now—parallel to the door instead of perpendicular, against the wall) and we were having a discussion—I don’t quite remember now if she went to grab something from me, or what the context was… but she ended up accidentally leaning forward too far too quickly and smacking her face on the doorknob. She had a bruised eye for quite a few weeks from that. I remember going to church that month and feeling bad when my Dad was getting the side-eye from some of the other congregation members—as if he were the one responsible for it when really it was indirectly my fault. My Dad has put up with a lot over the years… he’s a champ too. The angriest I’ve ever seen him towards my Mom resulted in him setting a remote controller down on the table slightly louder than usual. That’s it. He has always set a fine example of unconditional love and respect in his relationship with my Mom. Her being sick has been very hard on him too… maybe even especially him in ways… but I’m digressing—as I usually do when jotting my thoughts down in a candid series… you can see the way the gears twist and concepts connect from one to the other to create the big picture as a whole… fragments coming together. Speaking of the big picture… I haven’t even started packing yet. Am I scared? Parts of me are… like my stomach that finds itself in tangles thinking about what she must be going through right now. How humbling (for a delicate choice of verbiage) it must be to have to sit vulnerably and uncomfortably-positioned in a cold room with cold air in a cold chair surrounded by unfamiliar machinery—left with nothing except for maybe a 1-ply dollhouse-ratio napkin to cover the essentials and unbridled thoughts bouncing around in a frenzy… flesh invaded by dangerous particles making a war zone out of you. “Don’t move.” Stillness in body, synapses transmitting a billion miles a minute. My mother’s tenacity is contagious. I learned the true meaning of strength the night we almost lost my older sister, Tristina, when a tumor inside of her burst. My parents sped to Lebanon, PA in the middle of the night as she was rushed in for emergency surgery. This isn’t the first time mom’s had to fight it… cancer… the first time was for her child. She’ll win again. We all will. There has to be a reason for it all. And I’m going to keep searching until I find out what it is. She doesn’t expect this to be easy…the procedure…but there isn’t a bone in her body that has ever been spoiled with the overuse of the definition of that word. “Easy.” She’s tough. So, what more can I say to honor a woman who already speaks for herself through the selfless way she lives?—the very same woman who had been cultivating within me the meaning of sacrifice since the day her piercing gaze locked onto the blue of my father's eyes and she proclaimed that if it ever came down to the wire and a choice needed to be made between her or me, she would choose me in a heartbeat and he must too... this time, years later, the decision is non-negotiable... "Both." We’ll get through this the same way we’ve conquered all of the other trials in the history of our family… unwavering faith [yours too] and the inconceivable strength of a mother's love.
Kaleidoscopic Grace 