“I’m pissed I have to do this, Mama.” Those were Ky’s words on the way to Boston yesterday. I’m pissed he has to do it too.
For Cappy, the pissed has passed. He’s here. And he’s doing it. Today was the first day of conditioning, Day -8. His new marrow will be given on Day 0. Between now and then, he has a significant course of high dose chemotherapy and other medications to rid his body of its own marrow and prepare it for the donor cells.
For most of our trip down Interstate 95, we followed a tractor trailer. On the back of the cab was the word “Blessed”. I had Cappy take a photo. If that was a sign, I’d take it. It probably chewed up time, but I chose to follow that truck as long as we could. Who am I to pass a message like that?
For a mama and her guy, who are both incredibly tentative about a big hospital in a big city, we’re okay. Well, I’m okay because he’s – amazing. No surprise there, really. His IV pump is three times the size of the one he hauled around at Maine Med and he has more tubes coming out of it than I can count – but he negotiates a small ‘alley’ between his bedside table and a chair like a pro. This morning he was asked to work on a list of things that he wanted anyone who entered his room to know/follow: please make sure Mama is with me when you want to talk to me about something, please ask if I want to talk about home or not because sometimes it makes me really sad, and please limit the number of medical people in my room at one time. For Cappy, that bit of advocacy is a pretty big deal. He also asked that he have some way to share his jokes with people who work here as laughing makes him feel better. (Today’s joke: Why didn’t the toilet paper cross the road? It got stuck in a crack – no shortage of bathroom humor with this guy…).
As part of our intake, a nurse asked Cappy if he knew why he was here. He looked at her and said “…because you’re the best in the country at this and I need that right now.” I think she was more looking for “I’m here for a bone marrow transplant…”, but – she got Cappy, true to form.
I can’t believe it’s your 12th birthday, Ky. I can’t believe it in a way that most any parent can’t believe it. “Don’t blink…” people warned me. But I blinked. The first eight weeks of your life are a total, complete blur. You had to be fed every two hours because you were so tiny…and I’d no sooner get you fed and changed and fall back asleep…before it was time to do it all over again. You were a tiny, beautiful dictator who ruled my every moment. Sleep-deprived as I was, I was in total and complete awe of you.
The first time I held you, I couldn’t believe you were mine. You were perfect. How could you be half of me? And your hair – my word – I’d never seen a baby with such gorgeous hair. After you were born, Papa went home to get sleep and I held you while watching Barack Obama – then a new senator from Illinois – an up and coming guy, maybe you’ve heard of him? – on television at the Democratic National Convention. I listened to him speak, but never took my eyes off of you. His words…tiny you….I’m not sure I’ve ever been so full of hope. I didn’t know that feeling would accompany every moment of our journey as mother and son. The world as I knew it would never be the same and I was, somehow, smart enough to know that.
And here we are, on your 12th birthday. It’s an important one. For years, I thought it would be an important one because it’s your last year before you’ll be a teenager – and it is. But…it’s also the last birthday you’ll celebrate with just one birthday. In a few weeks, you’ll have another birthday, another important day that we’ll always celebrate – your day zero – the day when you’ll get new marrow that will, fingers crossed and prayers constantly sent, rid your body of AML forever. It’s bittersweet. Secretly, or maybe not so secretly, I carry guilt around that your cancer is my fault. I did something, ate something, touched something, that I was a bad person and your body is paying the high price. What I know in my head and what I know in my heart sometimes conflict. You have AML…and along with that a rare, gnarly sub-type. That’s reality. People comment on my strength, but it isn’t that I’m strong. It’s that I’ve always been an excellent student and I’m learning from the best, most honest teacher I’ve ever known. What you’ve taught me in the last ten weeks is that it doesn’t matter how it got there, it matters the way in which you work to get rid of it. Each day, you rise. You remind me to focus on the moment, to keep my heart and mind where my feet are. You remind me that sometimes it’s hard and it’s okay to be angry. You remind me that, even when kids get cancer and people drive vans into crowds and kill others for being ‘different’, there is an unbelievable amount of good in the world. Just like the day you were born and every day since, you remind me to have hope.
I don’t know what the next year holds, Ky. I think that’s both a blessing and a curse. But I do know that my wish for you this year is no different than it has been any other year – I wish for you to be happy and feel loved, always. Ironically, that’s the same wish that you wished for me on my birthday this year. Thank you for being my guy. Thank you letting me be your mama. I love you most and tenderly.
I woke early, showered and crept out of Ky’s hospital room before 8 a.m. this morning. I’ve gotten used to navigating my way away from the hospital toward 295, but today I went beyond the usual exit that drops me in South Portland, a mecca that covers most of Ky’s fickle appetite.
At 10:37, after dealing with ridiculous traffic and a closed exit, I pulled into the parking garage at Dana Farber. I made my way to the Jimmy Fund Clinic, the only parent in the place without a child by my side. I looked around and recognized myself, my actions and reactions, in the faces around me. One mama did everything short of standing on her head to try to cajole even the smallest smile out of her despondent son. She colored a hat for him, talked about their upcoming weekend plans and all the fun that awaited them…after this round of chemo. Another mama got a snack out for her son, but held a firm limit that he couldn’t eat her Powerbar. A papa carried his young daughter into the clinic and tried to soothe her as she sobbed when the receptionist came around from behind a desk, just to put an identification band on her leg. I closed my eyes and to my right, I could hear a skirmish over who was the boss of the game, who would set the rules, who was in charge. With closed eyes, I couldn’t see bald heads or faces swollen from steroids, I could just hear the struggle over who would be king of the metaphorical hill. I relished the normalcy of that. I kept my eyes closed until my name was called.
I was there to meet with Dr. Margossian, the pediatric hematologist-oncologist who our care will transfer to when Ky has his bone marrow transplant. The point was to provide us with the information about Ky’s transplant without his ears hearing – and worrying – about all the information we would know to properly prepare us. As you might imagine, ridding a person’s body entirely of his own bone marrow while simultaneously preparing it to accept new marrow is a pretty involved process, which is neither easy, nor for the faint of heart. Part horrifying, part fascinating, part science, part miracle. Though overwhelmed, I didn’t cry – there was just too much information floating in the air and not enough space in the conference room to hold my worry, my fears, and my hope all at the same time. I took notes, asked the questions I was ready to hear the answers to, and listened. Bill was at the hospital with Ky and was counting on me to come back with information, so I would.
Since May, I’ve returned often to a line from a Jane Kenyon poem “God does not leave us comfortless, so let evening come.” Today was no exception. Amid all the talk of chemo and conditioning and day zero and risks, there was a piece of the puzzle we’ve been waiting on. A donor was contacted on Ky’s behalf. Within 24 hours of that contact, the proposed donor submitted a blood sample. That sample was sent to the lab and analyzed for the layers of compatibility with Ky’s body. On all the levels they need to match, they do. If the donor centers can coordinate schedules and timing, we believe there is a 30 year old man in the Netherlands who holds a very important key to Ky’s future. Those are the only details we know: 30 years old, male, from the Netherlands. We don’t know if he was born and raised there or if he’s an expatriate. We don’t know why he’s in the registry in the first place – is he a generous man who just wants to help or did cancer move into his life in some way as a most unwelcome guest too? There’s a big part of me who wants to know what he’s like. I think he must be kind. They’re genetically similar, so I wonder if Ky’s donor is curious in the way he is? Does he look at the stars and wonder what else is out there? Is he empathetic to the point that it sometimes hurts? Might they like the same breakfast cereal? Does he want to be a papa as badly as Ky does? At the intersection of nature, nurture, and bone marrow…I wonder how these two would line up.
The reality is, we may never know anything besides the facts that we already know: 30 years old, male, the Netherlands. I was told that every country has different restrictions on what they allow for contact between donors and families. Some allow however much contact both parties consent to, others only a letter with no identifying information, others no contact at all. I don’t know how that will sort out for us, but I know there are many people who would love to thank this seemingly magical human. I can’t even think of his existence right now without getting teary. Perhaps he will luck out and it’ll be only letters exchanged – I can’t imagine the weepy mess I’d be if I met him.
I left Boston after a 90 plus minute meeting with Dr. Margossian, put my iPod on shuffle, and tested the limits of what my ears and speakers could safely handle, even with a pounding headache. There was some thing to be said for feeling the vibration of the music. I liked being shaken to my core with musical vibrations, rather than words. It was refreshing.
I got back to Maine Med and answered Ky, Lou, and Bill’s questions. Ky feels very positively about the donor being from the Netherlands. Evidently the Minecraft players from that area of the world are pretty amazing, so he’s hoping this new marrow will further his skills. I’m sure, post-transplant, we’ll have plenty of time to figure that out.
I’ve become pretty obsessed lately with words from other languages that are untranslatable. It started with my discovery of saudade a couple of months ago. Tonight I learned a word from the Dutch language that has no translation: gezellig. It’s a word, it seems, that “embodies their warm, welcoming culture”. Gezellig is an adjective that “describes much more than just a coziness, a positive warm emotion or feeling, rather than just something physical…[it] connotes time spent with loved ones, togetherness.” It’s derived from the word gezel, which means companion or friend. It’s a feeling, not simply a word. After quite a lot of reading tonight, it seems that gezellig speaks to the heart of Dutch culture.
Tonight as Ky and I looked out at the stars, we wondered about the magical man in the Netherlands. That he’s willing to try to help, that he’s willing to do this for Ky…that’s the closest I’ll ever come to translating gezellig.
It doesn’t have to be the blue iris, it could be weeds in a vacant lot, or a few small stones; just pay attention, then patch
a few words together and don’t try to make them elaborate, this isn’t a contest but the doorway
into thanks, and a silence in which another voice may speak.
During Ky’s more challenging spell last week, he looked over at me and asked “Why did God do this to me?”. It’s a question I’ve asked too. My answers ranged the spectrum in my own head, but holding myself accountable for an answer to him – that was a whole different ballpark. In the end, I told him that I can’t believe that God, or whatever we believe in, did that to him. “Bad things happen,” I told him, “but that wasn’t God…or whoever. That was just bad things happening. You getting Leukemia is a bad thing. But it isn’t a punishment or something that God did to you. God, or faith, or grace – that’s in the small things we’re trying to notice. The kindness of strangers, the love of the people around us, the actions of the incredible nurses, the wisdom of your doctors, the kindness of a potential donor. That’s God. Remission? That’s God hearing all the people who believe in you and want you here, making the world a better place…being the beautiful kid that you are.”
As Sunday night rambled into Monday morning, Ky’s last bag of chemo for this round was hung. It’s called Mitoxantrone, also known as ‘blue thunder’. The timing of it being given in the middle of the night was deliberate as it would lessen the extent of Ky’s nausea. I slept through the first two nights of ‘blue thunder’, but for some reason, there was no sleeping through the third. Emily, Ky’s nurse that night, was the same nurse who hung his last bag of chemo during the first round. She made us a fun sign that we kept on his board during the remainder of our stay after that round was done. Lately it seems as though nothing is a coincidence.
Emily was in Ky’s room getting vitals around 9 that night and Ky struck out for the bathroom. He was going to be sick. Again. As he vomited, Emily and I talked. “Poor guy,” she said. I told her about his earlier inquiry about God, offered her my explanations, hoping that given her career choice and dealing with so much more of this than I ever will, she might have more to offer. She did. Her explanation was eloquent and beautiful and that of a woman who has such reverence for the Universe, good and bad. It comforted me in such a way that I was sad Ky missed it.
At 12:30, Emily and another nurse quietly verified is medical record number, his date of birth, the name of the medicine and the infusion rate by the glow of a small pen light. I popped my head up as she hung the mighty liquid on the pole, “That’s it?” “This is it,” she said. Just like that. Round two, in the books. After they left, I got up to look at my boy. Sure enough, blue thunder was blue, an ominous shade of dark, dark blue. It looked just exactly like poison dripping from the bag, down a tube, into the central line in his chest. I couldn’t stand to look at it, but I also couldn’t look away. I reminded myself over and over that this process is how we restore his health; this is how we put Humpty Dumpty back together again. Then I sat by his bed and sang the song I used to sing to him as he fell asleep in my arms as a baby, over and over until it stopped dripping.
When I woke Monday morning, I went to take a shower while Ky slept. Next to his bathroom on his ‘daily plan’ board was a note – another note of congratulations from Emily and next to that, a poem that had been printed and mounted on a bright yellow piece of paper. It was a poem called “Praying” by Mary Oliver. If I’ve read it ten times, I’ve read it one hundred, but it’s never meant more.
There are a million and one reasons why I have such heavy doubt around belief in something greater right now, but here on our board was a voice, a sign, a something, loud and true. Mary Oliver has been my favorite poet for years. I’ve made it my personal mission to teach my students about her, to teach them to notice the way she does. I drove four hours, one way…on a school night…to listen to her read for 90 minutes. Then, as she held a book that I brought to have autographed, I cried. Her books are my bibles.
I was covered in goosebumps. Emily left us notes…but it felt like a whole lot more. Of all the poems and poets and things that could have been left, here it was. Anyone who knows me can imagine just how much that tiny poem meant in this time of need.
When Ky woke and headed for the bathroom, he saw Emily’s notes too. He knows how much I love Mary Oliver, so that little yellow piece of paper gave him a huge smile. As he crossed the threshold into the bathroom, he offered “You know what? Sometimes good things come from bad things, Mama.”
I feel like my words fall so short of the gratitude I felt in that moment, that I continue to feel for that moment.
Thank you to my beautiful boy for the reminder…and to Emily, for words I needed.
“It’s bittersweet, more sweet than bitter / bitter than sweet / it’s a bittersweet surrender…”
We were up early Tuesday morning to be at Maine Med in time for Ky’s procedure. We waited until the last possible minute to wake him. We were literally out the door three minutes after his feet hit the floor. It was early, so it was just the two of us. Bill walked us to the door, he and Lou would join us later, once Ky was settled into his room after his procedure. No sooner than we’d gotten out of our driveway, Ky started to cry. “Don’t take me back, Mama. Please.” I told him I had to – that this was part of the deal. We had to get through this next round of chemo, then we’d have a better plan – a better outline of our next few months. I put on sunglasses, less to shield myself from the sun, more to shield my son from my tears. “Don’t you get it, Mama? Kids don’t grow in hospitals. I’m not going to grow there. It’s not…natural.” There was no silver lining, no bright spot to be found this morning and we both knew it. “Mama, I need my sister. And Papa. And our cats. And the dogs. I need a yard, Mama.” His attempt at reasoning gave way to quiet sobs. By Windham, thirty minutes from our house, he’d resigned himself to the fact that we had to go back, but he was going to catch every single site he could on the way.
Shortly thereafter, “Bittersweet” by Big Head Todd and the Monsters came on. “I *love* this song, Ky!” I launched into an explanation about why, about the nuance in the lead singer’s voice, the nostalgia that the opening chords always inspire in me, the story the song seems to tell, why it matters that the word bittersweet gets split apart. Ky heard the the chorus and smiled, “I know this song. You used to play it all the time. I like it too.”
We arrived at Maine Med in time to watch the city start to wake up before us. We were close to time, but we opted to watch life perk up from our perch on the 8th floor of the parking garage. “I don’t want to go in, Mama.” His protests got harder to refuse as we got closer. I didn’t either. I knew what was waiting for him. A bone marrow draw, a spinal tap, chemo directly into his spine…within the first 90 minutes of our arrival. Then he’d be treated to regular chemo through his line. This round is an aggressive one. Since we knew he was going to need a bone marrow transplant, Ky’s doctors opted to skip the traditional second round and go straight to the more intense third round. Shorter in duration (only six days), but mighty in awful. His oncologists told me to ready myself. He’d be sick – both chemos he would get were considered ‘moderate’ in terms of causing nausea. Two wrongs don’t make a right, but two moderates seem to make an awful. I’d also been told that one of the drugs can be challenging from a cardiac standpoint, so he’d need to be monitored carefully during infusion and for an hour afterwards. Some kids also get fevers. Bittersweet, more bitter than sweet.
Waiting for us on the other end of that day, though, was something beautiful. Ky was given the opportunity to make a wish through Make-A-Wish Maine. His fairy godmothers met with us as a family. One filled out paperwork with Bill and me, the other stayed with Ky and Lou and let them dream big. We’ll find out shortly if and how Ky’s wish will be granted – but for now – know that it was given a whole lot of thought – in a way that only Ky could. As the last few days have gotten increasingly challenging, he brings up his wish, “Do you think they’ll grant it, Mama? It seems kind of like something they might not be able to grant.” I think it’s just the kind of wish they’d love to grant. Bittersweet, more sweet than bitter.
The next day our spirits were lifted further by the news of Ky’s remission. I hoped, but I didn’t dare let my hopes get to high. Cancer has taught me to keep two feet on the ground at all times…more often than not, two feet and two knees. It’s one step in his journey, but it’s such an important one. As I mentioned on Facebook, we will finish this round of chemo and then, if a donor is identified, move on to the bone marrow transplant. He will still need that because that’s the best way to be sure that there isn’t leukemia hiding out somewhere, waiting. I’m telling myself it’s not a better or worse path on this journey, it’s just a path. Bittersweet.
Bill, Lou, and I were ecstatic to hear the news. What a victory! Having been reminded that hospitals are no place for a boy to grow and knowing that soon he’ll be confined to his room, I took him out for a walk. “Are you excited to be in remission?!” I asked Ky, as we lay in the grass outside the hospital, just the two of us, soaking up the sunshine. He looked up at the trees, then over at me, “If I get too excited, they’ll find bad news to give me, Mama.” Bittersweet…more bitter than sweet.
He’s spent the last two days as sick as I’ve seen anyone. I spoon-fed him eight and a half bites of applesauce yesterday, but that was all he ate. He has enough fluids going into him now to keep him hydrated and going, but for a mama who thrives on making sure people are fed, and hopefully then happy, this is a fresh layer of hell. The more he sleeps, the less he’ll remember, his oncologist told me yesterday. The current issue is that this mama doesn’t seem to sleep…and she’s going to remember. Every. Last. Detail. And while I’m glad he’s sleeping, the stillness of my never-still-boy is hard to watch. He has a pounding headache that is made worse by the amount of retching he’s doing. He refused so many medications that would have helped him during the first round of chemo, but this time – he’s not. He can’t. It’s a bittersweet surrender…
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.)