Ky and I wish to report that sometimes the grass really is greener. Mostly. We got to go home for a few days. What was once mundane seemed so magical – I can’t quite explain it. Our time in Eden wasn’t without reminders of our current reality – there was medicine to take and his line needed to be flushed and maintained and we had about 18 hours worth of a fever that required antibiotics. But…we had so many average, beautiful moments.
We spent time as a family, we spent time with dear friends, we paired off for mama/daughter and father/son adventures, and then we came back together to compare notes. We told each other “I love you” more than what most people would regard as socially acceptable. Given the last month of our lives, I don’t think any of us are willing to leave anything to chance.
On the same day his friends celebrated the end of elementary school with a 5th grade farewell ceremony, Ky learned that he needs a bone marrow transplant. It feels as though my son has had to take a temporary leave of absence from being a kid. The depth of unfair as it relates to Cancer seems to know no bounds.
The night he ran the high fever, he reached for me in the darkness. I thought he was fast asleep; I was laying next to him counting his breaths. He put his hand on my shoulder and said “Mama, we’re going to beat this.” It was the first time since his initial diagnosis that I heard that kind of resolve from him. I don’t know if I’d truly exhaled since I learned he had Leukemia…until then. Finally, there was a reserve of strength that wasn’t just about the day-to-day.
As for now, Ky and I are back at Maine Medical Center. Yesterday morning he had a bone marrow biopsy, as well as a spinal tap and intrathecal chemotherapy. Late yesterday afternoon, his second round of chemotherapy started. His bone marrow is on its way to Seattle for testing to help us better understand how the Leukemia responded to the first round of chemo. Our greatest hope is that he will be in remission.
The doctors in Boston are currently working with the National Bone Marrow Registry on a formal search for Ky’s donor. He has ten people who are perfect matches. When I can’t sleep, I think about what those ten people are doing, whether they’ll be willing and able to help Ky as we move forward, what they’re eating for breakfast, and how, when this is all said and done, I will ever repay them. I think I’ll start with ‘thank you’….and I’ll say it over and over again as he gets to return from his temporary leave of absence…
The word grace occupies a lot of real estate in my head right now. Recently, I’ve come to a deeper understanding of that word as an observable concept. I’ve needed to be able to do that. No matter how rattled my faith or spiritual base is right now, I can see grace.
-A nurse who, at some point between the hours of 3 a.m., when I fell asleep, and 5 a.m., when I woke, took it upon herself to cover me up with a warm blanket. Grace is a nurse who rubbed Ky’s back gently as he wretched and had a bloody nose. Until he was done getting sick, she stood beside him and whispered “We’re going to get you through this, sweet boy.” Grace is the nurse who will walk into this room tomorrow and, no matter how miserable he feels, his face will light up. She took it upon herself to create a special handshake with him; who, when his door was allowed to be open, encouraged him to send Nerf ammunition zipping into the hallway at the other unsuspecting nurses. She is his very favorite. Grace is the nurse who got in his face today because he needed medicine to address his pain and he didn’t want it. Grace is the growing army of nurses who know about Ky’s best friend Avery and how her visits bolster him. It’s the delicate balance they intuitively know how to walk between “How was your visit!?”and asking too much and mortifying him (perhaps their grace in that department will rub off on this Mama….).
-Grace is the ways our collective communities are showing up – in ways too numerous to count. Our families, my Bridgton Academy community – faculty and alumni alike, Bill’s Macdonald Motors community, Ky and Quinn’s school community, our greater Bridgton community, our high school and college communities. Grace is our collective tribe saying “We can do this.”
-Grace is the eye contact of strangers on the rare occasions when we are outside his room. Ky’s head is shaved, he has to have a mask on, and there’s always an assortment of medicine bags attached to his i.v. pole. Thank you, strangers, for seeing my son. I see you see him. You aren’t staring, you are acknowledging him. That means as much to Kyan as it does to our family.
-Grace is the people who have to look away from my son under those same circumstances. I see you trying not to see him. I understand. Eight years ago when we were here after Quinn’s first heart procedure, I was you. I couldn’t handle looking at the children with Cancer and chemo. Look away, strangers, because you’re totally right. It shouldn’t be this way.
-Grace is our favorite oncologist who Ky trusts enough to cry in front of him. It’s the water I see in that same doctor’s eyes as he watches Ky figuring out this process as best as his eleven-year-old, old soul can.
-Grace is seventy-two steps to the washing machine down the hallway from Ky’s room. It’s an appreciation for a task I used to dread, that now brings a brief respite and different sense of purpose to my day. It’s the sixty-three steps back to the sink outside his room where I scrub my hands and the two additional steps it takes me to get into his room without touching anything, including the door handle, with my clean hands. It’s recognizing that it takes me seven less steps to get back to him.
-Grace is the woman who works in housekeeping who comes to make sure his room is clean each day. It’s her efforts, although English is not her first language, to connect with us. It’s the growing confidence to trust that I understand her and, because of that, her willingness to speak more. It’s that she thinks I know anything about dryers and how to repair them because she sees me walking once a day, seventy-two steps with a basket of laundry in hand. It’s also the knowledge she brings to me. She’s a mama of six and, she tells me, “Honey, it doesn’t matter if you have one or six. Once you are a mama to one, you are a mama to all.”
-Grace is the network we’re somehow building from a small hospital room. It’s a sweet, handmade card from two total strangers in England. Ky whipped up three different mock conspiracy theories about how they heard about him, but I am sure it was a friend who wanted to make sure he was getting mail – and a variety of it. It’s other friends calling in HUGE favors to give Ky (and, quite honestly, his mama) boosts of encouragement. It’s another total stranger who completed a triathlon this weekend in California with the words “Cappy -Stay Strong” on the back of his shirt. He heard about Ky from the mother of a dear former student who has grown to be a dear friend. It happened that this total stranger was completing this triathlon to raise money for Leukemia research. Run, swim, bike, sweet stranger.
-Grace is my beautiful daughter who is so unbelievably brave, but is equally scared. Quinn is a wonder. Given the choice, I think she would trade places with her hero in a moment. There are a number of us who would. Grace is her quiet realization tonight that her brother was diagnosed with Leukemia two days after her ninth birthday. I was hoping she’d not connect those dots; I didn’t want them connected in her mind. They shouldn’t be, but – they are. Grace is three tears falling down her cheeks and her explanation that “Sometimes they spill out, Mama – so I let them go.” Grace is that they spilled out a lot from Mama after that – and from her too. That was good. Grace is the way she’s helping us figure this whole thing out, because she is – and of course she’s doing it in a way that only she could.
-Grace is Kyan. It’s the way his hand goes, so easily, to the side of his bed when he wants to hold mine. It’s his requests for a hug or for me to lay in his bed with him. It’s his earnest belief that, even though we just shaved his head on Friday, he can “…already tell it’s growing again.” It’s the way he’s handled his entire world being turned on its head with equal parts laughter and tears and wit and anger. It’s his voice through the darkness a moment ago, wondering if I needed a blanket because I could have his. It’s his plea to “Please just take me home for five minutes…” because even though he understands I can’t yet, he gives himself the opportunity to ask. Grace is his curiosity about everything, a trait that, even now, never gets checked at the door. Grace is returning from a meeting with his doctor today to find him getting himself ready for a brief walk and then transportation to some testing – dressing his own feet, lacing his own shoes, washing his hands and getting a mask out for himself, even though he doesn’t have a lot of strength right now. It’s his proud smile from under that mask because I was totally taken aback, so incredibly proud to see him navigating the real estate in our current world. Grace is the way he’s showing up for battle, every single day.
-Grace is the way this has all unfolded. Given the choice three weeks ago when this became a reality, I might have said “Tell me everything you can about what kind of Leukemia, what the course of treatment will look like, what complications we will see…tell me everything.” But that would have been so wrong – I know that now, even though it’s early in this process. Grace is sitting here even now, only three weeks later, knowing I couldn’t have handled any of that then, but I can now. At least I can today. At least I can right now. Three weeks ago, I hadn’t seen the way nurses care for us (used intentionally), the way our communities would support us, the way people would see him – or not, the relationships he would build, the value of human interaction, the network this would create, the way Quinn would rise, and the way Kyan could rally in a way that…I don’t have words for. Even as his mama, I never knew he was so strong. You never do know until you have to, I guess.
“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.” – Louise Erdrich
I have a growing series of “unbeknownst to the subject” photos on my phone. The first is one that Ky took of me on a really tough night. He spiked a high fever quickly and that set off a whole chain of stress for both of us. I sat at his bedside, looking out the window, waiting for a miracle of any kind, watching the sun set. The sun on my face makes it look like I’m aglow. There’s an interesting irony to it.
The next two are of him, one taken yesterday, the other today. He was chilly yesterday before he napped. He bundled up in a sweatshirt we bought together in April; it was to be for our longer hikes this summer. He pulled the hood tight right before he fell asleep. If you look carefully, you can just see the side of his freshly shaved head.
The other is from our walk today, while he was unhooked from his IV. We got special permission to go outside. He had to wear a mask. The hospital has significantly less traffic on the weekend, but on such a nice day, I thought for sure the atrium would be busy. It was totally empty, a welcome sight for a mama with an ever increasing fear of germs. We sat at a table for a few minutes, then he started wheeling himself away. I told him to go ahead, I’d catch up. “Don’t take my stupid picture,” he warned over his shoulder as he began to move. I didn’t take his stupid picture; I took his beautiful picture. I don’t know how it’s possible to look so mature and so innocent all at the same time, I just know it makes my eyes awfully watery. There was my goofy, brave, still-coming-to-terms-with-it boy, moving forward. It’s a lot of work to move a wheelchair the size of the one he had, but he appeared to be a natural – especially considering he hasn’t truly been out of bed in days. We came to a spot where the only way forward is via stairs. “You can’t go down there unless you walk and I know you don’t really want to do that, so let’s turn around here.” I was trying to be helpful, one of his legs is quite sore and he was adamant earlier that he didn’t want to walk. I might as well have given him the middle finger as I spoke those words. He put the brakes on, stood up, grabbed my hand and down the stairs we went. And around the corner. And around the next corner. At one point, I wondered what passersby would think when they walked by the deserted wheelchair right next to a set of concrete stairs.
We walked as far as we could, until our walkway gave way to a street. “I want to run away,” he said, more to himself than to me. “Me too,” I said, more to myself than to him. He kicked pebbles over the line we’d artificially drawn, just to see what happened to them on the other side. Nothing. Nothing at all.
There isn’t always an apple tree to sit near; sometimes you have to adjust the symbolism to suit your circumstance and surroundings. Rocks don’t waste sweetness like apples do. But as far as I can tell, they sometimes waste their opportunity to roll. #beautifulthingshappen
Over the last fourteen days, I’ve had a complete crisis of faith. How did this happen? Why did this happen? How does it happen to such an incredible person, a child? There are times in my life when I thought I’d been low, but this has shown me that there is, indeed, a sort of hell on Earth.
Lately, Ky waxes quite philosophic – not shocking if you know him – but even more profound than I ever recall him being. He kicks it into high gear most especially between the hours of 11 p.m. and 12 a.m. The timing is interesting because it’s often after he’s gotten incredibly sick from his 4 p.m. chemo treatment. I am reduced to a quiet wreck outside his door, while he emerges, somehow, braver than he went in.
Last night Ky was super sick. He’d just downed at least five pickles (one of the only things chemo hasn’t changed the taste of for him). He came out of the bathroom and I crawled into his bed with him, just the two of us in the dark. He asked why I always called him an old soul. He said he, too, thought he’d lived a few lives and assured me that there were more laid out for him. I told him not to rush ahead, he had a lot still to do here, now. He agreed. Then, in a way that makes me feel like maybe, just maybe, a diety of some sort was speaking through him, he said “It’s not really the things you do, it’s the impact you make on the world, Mama.” And just like that, we realized we could make amazing shadow puppets on his wall. It was, for me, the perfect juxtaposition of his life so far – wisdom beyond his years and a sweet childlike nature that comes from every pore. We giggled as my creature chased his around the room. For a moment, there wasn’t a central line, impending chemo, or a battle – there was just a boy and his mama.
At 4:15 a.m., his last bag of chemo was hung for this round of treatment. A milestone for a boy, his mama, his papa and his sister…and all the people he’s already impacted in this world. I don’t know if I can believe in a higher power right now, but I believe so fiercely in my son. #beautifulthingshappen
It’s 10:02 a.m. on Wednesday, May 18. My last post reminds me that I’m supposed to be done with bad days, but I’ve been wearing it the last few days.
I’ve told myself a lot in the last couple of years that it, rather I, will always be okay. But then I took my Cappy to the emergency room the other night. He’d been vomiting…for weeks. Not consistently, but regularly enough. In early March, I looked at him in the middle of Church Street in my beloved Burlington, Vermont and knew, and said aloud, “There’s something wrong.”. It was Saturday. I called the doctor as soon as they opened on Monday. Thankfully, she listened. Given what we were working with, it looked like a concussion. We went to PT, modified school days, and took acid reducers for his upset stomach. To no end. So, when I picked him up from school last week and he looked like a fresh slice of hell – pale, ‘wobbly’ in his words, and vomiting – we struck out for Maine Med. We were told that we wouldn’t find the cause of his vomiting that night, but they also drew labs. A low white cell count and anemia were regarded as incidental findings, to be followed up on by our primary care doctor. That visit generated a referral to a hematologist/oncologist. The visit to the gastroenterologist generated nothing…other than there’s no apparent gastrointestinal cause for the anemia. Which, in all reality, might be just about everything.
We left that office and I made a call to our primary care doctor’s office. They gave me the name of the doctor Cappy had been referred to for his anemia. I called. “Maine Children’s Cancer Center. How may I direct your call?”.
A mama on the brink of desperate is an interesting animal. God bless the poor woman who took my call. I explained, as best I could, what was going on and asked that someone please try to see us. “Something is wrong…” was all I kept repeating, “He needs to be seen. Please. I need him to be seen.” She assured me that a nurse would call either that afternoon or first thing the next morning. Cappy rolled over as soon as I hung up. He’d been sleeping in the passenger’s seat of my Jeep. “Savage Mama…”. And just like that, he was back asleep. I blinked tears and looked over at my guy, pale as anyone I’ve ever met, giant ears, piles and piles of dark hair and eyelashes that made him seem even more pale. Savage Mama – for you, my sweet boy – always for you.
(Ten minutes after I finished this post, our family doctor arrived at my work to personally tell me the news about Ky. Not something you hear about much these days, but – she’s incredible. She, along with a dear friend and colleague held me as I went to the ground, sobbing. I was given a mission – pack a bag and get Ky to the hospital immediately – and, after one more conversation convincing me that not only could I do that, I *needed* to do that, I dismissed Ky from school and we drove to Maine Medical Center, where he’s remained since.)
I’m done with bad days, I made up my mind about that today. I’ve decided instead that some days I might have to work harder than others to see the beauty in the world – to see all the signs that are all around me. Today was one of those days from the moment my feet hit the floor. I knew it would be.
Two years ago today, a dear friend of mine died. I describe him as a dear friend – and I am certain that if any of our other friends read this, they’d use a similar descriptor. Eddie had a way about him that made lots of people feel like they were in his inner circle. It wasn’t contrived or fake; it was authentic and amazing. After we left the Exeter area, my monthly, at minimum, Friday night calls from Eddie were how I stayed connected. I would ask how he and his family were doing and he would share stories about Jeanne and Morgan, then ask about my family. Eddie had a knack for not only listening to my stories, but enjoying them. His laugh was one that made you feel liked you earned something special. I’ve seen that in only a couple of other people in my life, but that was something I first noticed in Ed. He was a gentle giant with a heart as big as his personality.
We shared a classroom for most of my time at CMS, but it was during my last year that I realized just how carefully he kept tabs on me. Eddie was a worrier like you read about, especially about those he cared for. Often we’d arrive early and sit in our classroom getting ready for the day. He always arrived with at least one vat of iced coffee for himself…and usually a tray of coffees for his pals. He knew everyone’s order. In that last year, I was pregnant with my son. I told my team before anyone else; they were my people. Eddie, for his part, started to worry. He was overjoyed, but worried. No matter where I went in those early mornings during the first few months of my pregnancy, Eddie was fairly convinced I was sick. Other friends would stop by and he’d gesture to the bathroom…or shrug and say “I don’t think she feels good.” I’d pass that person on my way back from the photocopier (I was never actually in the bathroom…I only got sick once in my pregnancy with Cappy…and it was at home in my bathroom…lucky, I know) and get a strange look as I said my usual, trying to be cheery “Good morning!” It took me a long while to figure out what was going on, but once I did, I loved it. Poor Eddie spent a solid month thinking I was heaving my guts out every morning…and I was just photocopying papers. It’s still one of my favorite memories of him.
Ed was a phenomenal special educator. The kind who is held up as exemplary by colleagues, as well as the families he worked with. The kind who wins awards. The kind who inspired students to say “He changed my life.” He had a way of holding kids accountable and loving them dearly all at the same time. He believed in them and loved them like nothing I’ve ever seen. Take the most challenging, hot mess of a student and Eddie would find a way to reach them. That isn’t grandstanding, that’s truly what he did.
So, this morning was tough. I thought a lot about Ed’s family and the hole I know they feel so acutely. I was okay until I started putting my make-up on and then I got a text from a former colleague who was on our team. And then I texted another. Even after all these years, we’re still a family. Eddie was on a lot of minds. I cried through all of my make-up application, which I’m fairly certain defeated the purpose, but there it was. I knew if Eddie could see me, he’d tell me I was being ridiculous and to pull it together…but he’d hug me as he told me that.
I didn’t want today to be a ‘bad’ day. So, that’s when I decided that today would be a day when I might have to work a little harder to see the beauty around me. But I knew I could do it. I saw it in the face of a student who struggled mightily during his first quarter, turned it around in the second quarter and who sat with me today to tell me the steps he’s making so he can graduate. My gosh, he was so proud. Thank you, Eddie. I heard it in the words of the man at the café who said to the baker “It must be so nice to be able to create something like that.” Thank you, Eddie. I felt it in the words of a couple of friends who, without knowing why, could see that I was a little fragile today and they handled me with a little extra kindess. Thank you, Eddie. I saw it in the face of Lou as she opened the door for me when I got home and I heard it in the laugh of Cappy as we talked before he went to bed. Thank you, Eddie.
For you, Eddie – who I miss more than I will ever be able to express – thank you for continuing to teach me the important lessons: “All men have stars, but they are not the same things for everyone. For some, who are travelers, the stars are guides. For others they are no more than little lights in the sky. For others, who are scholars, they are problems… But all these stars are silent. You—You alone will have stars as no one else has them… In one of the stars I shall be living. In one of them I shall be laughing. And so, it will be as if all the stars will be laughing when you look at the sky at night. You, only you, will have stars that can laugh! And when your sorrow is comforted (time soothes all sorrows) you will be content that you have known me… You will always be my friend. You will want to laugh with me. And you will sometimes open your window, so, for that pleasure… It will be as if, in place of the stars, I had given you a great number of little bells that knew how to laugh.” -Antoine de Saint-Exupéry
Tuesday night was date night in my house…for Cappy and me. We went to dinner at my work, where I promised I’d spend the evening as Mama, not Dean…and I held as true to that as I ever have. On a pre-dinner walk through campus, Cappy found an apple that one of the students had tossed, intact, into the bushes. Leave it to Cappy to mastermind a science experiment with that apple and the hill. It was pretty straightforward, he rolled the apple down the hill, noting number of bruises, estimated speed, and trajectory…I noted his smile and curiosity. By the time we reached the bottom, we had a pretty banged up apple, but his curiosity wasn’t yet satiated. He decided we should roll it into the huge storm drains that line the road next to campus – to see if it would traverse one drain to the next. He thought about speed and angle, then launched the banged up apple into the tube. Despite his best pitch – a curve ball if I’ve ever seen one – our experiment thudded to an abrupt end, halfway down the first drain. We wandered to dinner and ate too much cake at a hi-top table for two in the back of the dining hall. Afterwards, he challenged me to a game of foosball. I said okay, certain that I’d be licking my wounds within minutes. To my surprise, I pulled out a 5-2 victory – which he was ever-so-gracious and complimentary about…especially given the fact that I absolutely celebrated far too loudly. (I am the most competitive, non-competitive person I know. See, I’m even competitive about that…)
On the way home, Cappy asked if we could stop by the lake and swing while we watched the sunset. I paused long enough for him to brace himself for a ‘no’ and as I started to speak, he said “It’s okay, Mama.”. But I’d already decided my answer was yes. In my mind, I was already laughing with my guy on the swing…and when I was actually there, it was just as super as I thought it might be.
The chance to say an unexpected yes is an incredible opportunity; I need to do more of that.