“I Am Your Praying Hands, You Are My Saving Grace…”

“You Are My I Love You” by Maryann Cusimano

bday

I am your parent you are my child

I am your quiet place, you are my wild

I am your calm face, you are my giggle

I am your wait, you are my wiggle

I am your audie

nce, you are my clown

I am your London Bridge, you are my falling down

I am your Carrot Sticks, you are my licorice

I am your dandelion, you are my first wish

I am your water wings, you are my deep

I am your open arms, you are my running leap

I am your way home, you are my new path

I am your dry towel, you are my wet bath

I am your dinner you are my chocolate cake

I am your bedtime, you are my wide awake

I am your finish line, you are my race

I am your praying hands, you are my saving grace

I am your favorite book,

you are my new lines

I am your nightlight, you are

my sunshine

I am your lullaby, you are my peek-a-boo

I am your kiss goodnight, you are my I love you.

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.

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Gezellig.

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.

 

 

 

“The doorway into thanks…”

“Praying” by Mary Oliver

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.