For the past two years, this week of dates... from my Mom's birthday on the 8th to her post-transplant birthday on the 19th... has been a mental, emotional, and even spiritual struggle for me. And I'm going to be candid about it.
Three years ago, those 11 days were filled with so much hope. I was absolutely convinced that everything would be successful and we'd have extra years with her. I had so much faith.
They said the transplant was a success. They said it worked. And I couldn't stop praising God for it. So many answered prayers for so many people over my Mom's health.
After what felt like ages but was less than a few months after the bone marrow transplant, she was able to come back home [I had moved to Charleston, SC by then]. In August, after Nathan proposed to me, she excitedly agreed to be my matron of honor. She also knew there would be another little one joining the family--a baby girl. And she knew her name would be "Norah," but she didn't know her middle name yet. It's "Jane," just like hers.
We joked about my DNA taking over her body and wondered if that meant she would start liking the same songs I do--even if she didn't before. I kept asking her to listen to this one song on my modern 'Jazz' playlist periodically--just to check. I don't know that it would most accurately be categorized as jazz though... it was more like a contemporary-hipster-funk song with random repetitive lyrics like "put it in my pocket in my pocket in my back pocket"... about a 'Circle yes or no' letter. She would always laugh when it came on because it was such a ridiculous song. I kid you not, it was actually called "Back Pocket." I thought it was catchy. I told her that when she started liking that song, it meant my DNA finally won out completely and we would basically be clones of each other at that point. [Of course, that's not exactly how it works, but we had fun with our interpretation.]
We planned visits for "after the whole corona-thing blows over" and her immune system was back in tip-top shape. Her doctors were keeping an eye out for GVHD (Graft versus Host Disease) which can be fairly common in various severities after a transplant. It started presenting on her skin in patches. But they treated it. She never let on that it was anything besides a minor inconvenience. A hiccup. I didn't take it seriously. I had all of that faith, remember? So I spent our conversations reaching out to her as my confidant. So much time wasted complaining to her... and I know now that she never saw it that way... she saw it as me allowing her to be my mom--even as a mother myself... and she saw it as her daughter loving and needing her... as a chance to connect and be there for me and pray for me and offer advice and encouragement. She was so good at it, too. It was never wasted time for her.
But just a few weeks later, the complications got worse. She waited at the hospital one day... all the way in Philly from the Poconos... for hours... HOURS... all day/night in an uncomfortable chair... mixed in with the general population when she was meant to be isolated... just to get sent home instead of admitted--when they should have kept her there. I remember my Dad sending me a picture of her with a text to update us on what was going on. She was covered up as best as they could, sitting in a corner with a mask on--as far away from everyone else as possible. She looked so frail. But I had faith. I kept telling myself... telling everyone that it would be okay... "because it just HAS to be..."
A couple days later, she was back in Philadelphia; her condition had declined in the absence of medical care.
But I'm not writing this openly to talk about her physical condition... this is about my spiritual one.
After my Mom passed away, my faith changed. I started allowing myself to entertain thoughts of, "Well, look where your faith got you. Your Mom is gone. What good did any of those prayers do after all?" or "Why would you even offer to pray for anyone? They've already seen that the ones for your Mom didn't work..." and the longer and longer I let them linger, the stronger those thoughts became. I allowed myself to feel like a fraud--diminishing my own beliefs over it all. And it pushed me away from my Creator.
I told myself I wasn't mad at God. I told myself the usual placations and kindnesses, "It just wasn't meant to be..." "She's in a better place now and free from pain" [which she definitely is], "She's still watching over you..."
I know she's with Jesus. I know she's free from pain and sadness. And while I don't believe she turned into an angel (Psalm 8:5, 1 Corinthians 6:3) or interferes with earthly things, I believe she already sees the whole picture (unlike us), knows about her littlest grandchildren, and knows that even in the midst of life’s heartaches and trials, God is still working behind the scenes just like He did for her, so there truly are no tears in Heaven (Revelation 21:4).
But still, I questioned my own faith. My own prayers. Those thoughts really can run you for a loop if you're not careful about forcing the bad ones out (Philippians 4:8).
Something stopped me in my tracks this morning though. I heard a song that was popular when I was in middle school and became a favorite to sing together with the track while we waited at the bus stop before school. "God of Wonders" ... My mom would always lift her hands--with the car in park, or do that quirky sort of signature recoil clap motion we'd poke fun at her for (if you ask me in person, I'll show you what it looked like)--no matter who was around. I'd sing and play the egg shaker for our audience of One.
She claimed she wasn't a musician and that she had zero musical talent (except for the triangle she would ring for dinnertime every so often if we were playing outside), but my Mom lived out her worship in so many other ways. I understand it now. She kept an atmosphere of praise in our home with worship music on cassette--or later on CD--playing during the waking hours of the day.
And even though my Dad was the one directly on the worship team (my favorite drummer ever), my mom was there too, behind the scenes, back in the overhead-projector days...making sure the printed lyric transparencies shifted, swapped, and repeated when necessary in order for the congregation to follow along seamlessly without any fumbles or distractions. All while doing that quirky clap motion. I have no doubt that her worship was a sweet aroma to the Lord.
And unlike the funky-jazz-like song about jean pockets, we both loved "God of Wonders". Her favorite was when Mac Powell would sing. Mine, too. We'd listen on repeat until the bus's headlights came into view through the trees and I had to reluctantly go to school.
I heard a version of this song today that I'd never heard before. But Mac Powell was still singing and the pieces all just seemed to click into place. My heart was ready to listen again with a fresh perspective.
Halfway through the song, I realized that there's a difference between faith and denial, even though it's easy for the two to get mixed up sometimes:
Denial says, "If I don't want something to happen, it can't."
Faith says, "I know bad things happen. I know the enemy attacks. I know the threats are real, but I know that my God is bigger than anything and everything we come up against and His ways are higher than ours" (Isaiah 55:8-9).
So even though I thought I was--I wasn't operating entirely in faith back then. And through my denial, I was minimizing the situation--therefore, minimizing God's greatness and carving my own idols in the process.
I wasn't trusting Him. I was trusting myself, thinking that if I just manifested enough positivity... if I just wanted it badly enough not to be real, it would happen the way I planned.
Pastor Trent said something yesterday at church that struck more than just a few chords. He said, "You'll only worship what you're in awe of."
I had to write it down. Because it's true.
I stopped being in awe of God's wonders because I started looking inward instead of up. (Proverbs 9: 8-10)
"You'll only worship what you're in awe of."
Then, Lord, let me forever stand in the amazement of You.
Forever a work in progress,
Elisha
---
Lord of all creation
Of water, earth, and sky
The heavens are Your tabernacle
Glory to the Lord on High
God of wonders beyond our galaxy
You are holy, holy
The universe declares Your majesty
You are holy, holy
Lord of heaven and earth
Lord of heaven and earth
Early in the morning
I will celebrate the light
And as I stumble through the darkness
I will call Your name by night
God of wonders beyond our galaxy
You are holy, holy
The universe declares Your majesty
You are holy, holy
Lord of heaven and earth
Lord of heaven and earth
Hallelujah to the Lord of heaven and earth
Hallelujah to the Lord of heaven and earth
Hallelujah to the Lord of heaven and earth
Precious Lord, reveal Your heart to me
Father, holy, holy
You are holy, holy
Dear Mom,
I didn't make Easter baskets this year. I didn't want to. The girls already have so much--so many lovely things... we've truly all been blessed in so many ways.
Aria even said to tell the Easter Bunny that he can skip over our house so that he has extra to share with other kids who might need the surprises more. You'd have been proud. I was.
She added that she didn't think Norah Jane would mind either since she's "too little to eat candy and doesn't have any teeth yet".
Speaking of the baby, I know there have been a lot of changes since she was born--and although the older two understand the need to share their time with me, I still want to make sure they know that their importance doesn't diminish... their place in my life isn't any less prominent because there's one more to share my triply-expanded heart with.
I remember the little notes you'd leave for Jenn, Tris, and I with "token gifts" as you'd call them... and how you always seemed to know how to make a single item mean so much more than any room filled with presents ever could. A musical snow globe... a stuffed giraffe plush that could fit into the palm of my hand... a hand-written letter, or a simple candy cane ornament.
It was your heart... the love woven into every aspect of you being our Mom.
I thought about it, but I didn't make any Easter baskets this year. Instead, I purchased 2 empty books with delicately decorated pages and penned a letter in each--hopefully the first of many.
The girls are growing up so fast and I never want to miss out on our time together... you've taught me how precious it truly is... and how fleeting.
I still cherish our letters to each other, me and you... except now, tears accompany the smiles as I read.I miss you, Mom.
Love always,
"Pookie"
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”
A photo still of the last video I have of my Mom and me together.
This. Song. Will Always. Always. Make me cry. I remember my Mom talking about it and verbally imagining if that’s what it’s like… and now she knows. And I miss her.
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.
I threw an online surprise birthday/transplant party on Facebook while my stem cells were transplanted into my Mom's body...and invited the whole family to it so we could all 'be there' for her. ♡
[Nathan made a guest appearance via my phone during the video chat to say hi to everyone too... as did Spence (pictured above)]
Keep the prayers coming (and thank you for them)!
The doctors/nurses are heavily monitoring her for at least the next 2 hours and then tomorrow she gets the part of her treatment where they encourage/coax the healthy cells to replicate more/faster...(health professional friends, as always, please feel free to correct/elaborate on my explanations)... and they have to suppress her immune system for a bit to make sure her body doesn't naturally try to reject the new cells... then, a week or so later, she goes through another treatment to rebuild her immune system with lots of monitoring and fluid level correction in between/during.
Narration. Sorry about the two random dings somewhere in the middle.
March 16, 2020: Monday – 8:36 a.m.: Thoughts:
I’ve never seen such a beautiful sunrise over superstructure horizon. The view from the 21st floor of the Lyric, overlooking the heart of Philadelphia during the golden hours, takes my breath away. There is a brief moment of magic on the cusp of daybreak before the city's skyline dims when Heaven’s masterpiece melts into a collaboration between the Creator and man’s delusive efforts not to be outshone.
When I look outside, I can see across to the building where my Mom is staying for the procedure and part of her recovery. Her window stands out, 5th trio from the right—the distinct outline of her transplant calendar framed evenly by the middle pane of glass. Sometimes I can even see her silhouette peeking out through the left of the nurses’ schedule (from my perspective, that is). There aren’t any windows above hers—although there is at least one more floor… a helipad appears to float, centered above her room, tethered to steel pillars invisible to the naked eye. I like to watch the helicopters in flight, maneuvering through the sky as they land, and whisper anonymous prayers for everyone inside.
It’s 10:17 a.m., 43 degrees Fahrenheit, and I miss her.
We video chat sometimes—when she remembers to activate the WiFi on her phone; I jotted a reminder on her wall before we left on Friday night when Covid-19 precautions ‘kicked us out’ of the hospital. Dad is low-key driving me crazy, but I love him anyway. He’s just not used to being away from Mom for any extended period of time—they’ve been together over 40 years and I don’t think they’ve ever even been separated this long throughout their entire relationship. It’s sweet, but also sad. He doesn’t seem to know what to do in her absence…and she’s only 3 blocks away.
I’m fairly certain that he’s already tweaked and fixed anything and everything in the mini-suite that needed fixing or tweaking…a squeaky door hinge, wonky shower curtains, a bent mirror shelf, etc…but that’s how it works, isn’t it? When we can’t fix what matters the most, we go around adjusting the things we can so that we don’t feel as helpless as we really are.
People keep telling me I’m brave. They say that what I’m doing for my Mom is a selfless act, when in all reality, it might be the single most selfish thing I’ve ever done. It didn’t take bravery; it took obstinance.
The truth is, I’m just not ready or willing to imagine my life without her in it.
Others have been far more courageous with far less at stake. I’m doing this because I don’t want my children to lose their grandmother, my father to lose his wife, my sisters and I to lose our mother, or for her to lose all of us.
I’m selfish.
I have more memories to collect, more hugs to share, more wisdom to hear, more smiles to see, more laughter to feel, and more adventures to plan with her. My mother plays one of the absolute most important roles in my autobiography—and we’re just about to get to the really good parts—the chapters where perseverance through hellfire and tribulation unfolds into the beginning of “happily ever after”.
I want her to see that the prayers she cried through clenched fists and tear-stained eyes over the years…prayers for my life… weren’t uttered in vain… and for her to be standing next to me when the knot is finally tied in the right place. She’s got more grandchildren to have, more giggles to enjoy, and so many more stories to tell—many of which have yet to be written…including this one.
So no, this isn’t selfless and it doesn’t make me brave—not from where I stand. I look in the mirror and see a little girl who still isn’t ready to let go of her mother’s hand to face a scary world alone…and I am so darn lucky that this is all it takes from me to keep her.
She always confused this band with Hootie and the Blowfish.
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]
When I was 10 months old, I had a hernia operation. The hairline scar grew with me throughout adolescence--and so has my love for giraffes.
Let me explain. It was during that hospital stay when my parents presented me with a tiny little plush giraffe--one that looks almost like it was crafted in the style of a Precious Moments character and was probably almost as tall as I was at that age. I was fascinated. As soon as I was able to form words on my own, I called him "Joshy".
Fast-forward through various holidays, birthdays, and souvenir-shop endeavors... from family members, friends, and even acquaintances... I was surrounded by giraffes. Drawings, figurines, stuffed animals, bedspreads (ironically enough, I don't actually particularly fancy animal print patterns), I amassed quite an inadvertent collection.
I even remember the best Christmas gift my parents had ever gotten for me. I don't remember exactly how old I was though-- nine? We were walking through a local warehouse-turned-flea-market... and in one of the stands in a display case (it's funny how I can still picture it in my mind so many years later)... on the top glass shelf on the left-hand side, behind a folded pocket knife that was meant to look like it was decorated by a mosaic of ebony/ivory... a forest scene, perhaps (it's neat how as you grow and learn more, your mind is able to fill in the gaps of childhood memories), rested the most beautiful snow globe I had ever seen in my life.
The base was etched with jungle foliage--deep shades of green; it reminded me of the movie "Jumanji". Underneath the dome stood an acacia tree (I was a giraffe "know it all" and decided that it just HAD to be an acacia tree since that's their favorite snack) beside a mother giraffe and her calf. The thin filaments of confetti in the water gave off an aura of enchantment. But there was more. When the silver oblong crank on the bottom of the base was twisted (my parents had the man behind the counter try it out), the song "Close to You" by The Carpenters chimed out in a lilting fashion (depending on how many times the gear triggers were raveled). That was the first time I witnessed real magic.
We left without it, though. I was crushed. I remember moping the entire way back home in the car--sandwiched between my older sisters in the back seat--probably playing a not-so-endearing 'game' of elbow wars and "she's taking up too much room and squishing me!". Forlorn and grumpier than ever.
When we went back some time later--it was already gone. My heart shattered.
After a while, I forgot about it--at least in the foreground of my mind. Months went by and winter came around. That Christmas--after all of the other gifts were unwrapped--there was one more with my name on it. "Pookie" [stop laughing; it's what my whole family called/calls me and I still don't quite understand why]. It was the snow globe. My parents were the ones who bought it from the vendor--they just held onto it all that time--letting me think it was gone forever.
The giraffes always symbolized my Mom and I... and "Close to You" became our song. I've moved around quite a bit since then... even across the country for a while... still, that snow globe stays with me.
But this story isn't about the globe.
It's about a different journey... one that has been in the works for over a year now. I was waiting for it to sink in. And by all other facets of realization--it should have by now. But it hasn't. Not yet.
My Mom--the same woman I've inherited my overabundant love of sentimentality from--the one who could turn a few dollars into a most cherished treasure just by putting some extra special touches to it... like a handwritten note or a stuffed-animal introduction and full imaginative backstory (yes, Mom, I'm talking about "Millie Ford" the giraffe)--she needs me now. After all of the hell I put her through growing up... even as far back as her high risk and complication-filled pregnancy with me... I finally have a chance to say 'thank you' and 'I love you' in a way that I never thought would be possible. I'm lucky.
In just a few weeks, I'm going to be the bone marrow transplant donor of the woman who battled through all of the worries, fears, emergencies, hospital stays, and obstacles just to bring me into this world. Her blood cells are going to essentially become replications of mine--we'll be sharing DNA on a whole different level. I hadn't realized that our song, "Close to You" would foreshadow an eventual symbiosis--it's even more perfect now.
The other day, while I was sitting downstairs at the kitchen table, my parents walked up to me with a small box--my Mom with a knowing smirk on her face. There might have even been the hint of a tear forming in the corner of her eye--the one she can't quite wink properly... I looked at her, not sure of the occasion, and lifted the lid. Inside was a delicately formed gold necklace... two giraffes... a mother and her baby... their heads nestled together to form a heart.
She said that she wanted to find a small way to show me how much it means to her that I was a match for the transplant and willing to go through with it [as if I ever wouldn't have]. My sister, Tristina (the same one I was undoubtedly elbowing in the back seat of the station wagon on the melancholy drive home from the flea market that one afternoon when I was nine years old) helped her find just the thing. A forever reminder of our Mother/Daughter journeys throughout the years and all of the adventures we have yet to look forward to together. I started to cry. It's perfect.
---
Why do birds suddenly appearEvery time you are near?
Just like me, they long to be
Close to you
Why do stars fall down from the sky
Every time you walk by?
Just like me, they long to be
Close to you
---
I love you, Mom.
I love you, Dad.
[I even love you, Jenny and Trissy.]
We're going to get through this.
Kaleidoscopic Grace 