On Grace.

Grace is Ky falling asleep, just like this.

“Was blind, but now I see…”

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.

Grace is…

-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.




12 thoughts on “On Grace.

  1. Read this at home and then again when I got to work. Gonna be thinking for a while now. Thanks for sharing.


  2. Yes, Binaca everyone is with you and your family every step of the way. I greatly admire all of your strength, perservance, and grace. I certainly know these challenges test our faith. Take care my dear, dear friend. Keep fighting Kyan, you got this, you strong, brave guy. #teamkyan


  3. Beautifully written B. Tears pour down my face in sadness and wonder of your grace and strength. I am so sorry that you and your family are dealing with this but you are all a true inspiration. My heart is with you and your family. xo



  4. Beautifully written Binaca. Your strength is amazing. As someone who’s family has been through a similar journey, stay strong and make sure you take care of yourself too. One moment at a time.


  5. Beautiful, Binaca! You are an amazingly strong mama and a fabulous writer. Thanks for sharing these beautiful family moments with us. Even though tears poor out while reading this, I enjoy reading about Ky who is such an inspiring boy! 💕Hugs


  6. -Grace is a mama that is proven strong and that has stayed with her son through difficult times and continues to be a wealth of support and love at his side along with Bill, Quinn and the rest of Kyan’s family.

    Your words leave my eyes welled up with such emotion and such optimism as they further reveal the strength that Kyan has. God bless you all! #TeamKyan


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