TW: This post is about the passing of a young friend who lived with a terminal condition.
I saw you alive, for the last time, fourteen weeks ago.
It was one of those late Sunday morning visits, when I bored you by talking to your mom too much. With no other kids around, and few duties to perform, we caught up and allowed our conversation the ease we enjoy now, as good friends.
That day, something was bothering you, and you let us know. Grimaces and pained whimpers from time to time compelled us to rearrange you and tend to you, while chatting. From your little mesh chair, to a blanket spread on your living room floor, we changed your location and position when you expressed your discontent. You accepted our attention and intention and waited before complaining again.
The mom-versation waned, and the ukulele I usually carried with me came out of its case. I lay on the floor, next to you, strumming a tune to warm up and get your attention. Your mom took advantage of a moment to work, and she stepped away. Eventually, I settled into a song you have enjoyed for years: What Do We Do With A Sleepy Pirate? (my own, kid-friendly version of the Drunken Sailor song)
As I leaned into the "HEAVE HO and UP she rises!" you turned to me, eyes lighting up with recognition. You smiled that smile, as if to say "There we go! Keep that up." So I did, and you kept smiling.
Once upon a time, the lyrics I invented for that song used to describe all of the things I knew you did in the morning before coming to school.
What do we do with a sleepy pirate, early in the morning?
Get her out of bed and feed her some oatmeal...
Brush her hair and make a cute ponytail...
Get her dressed and put her shoes on...
Drive her to school where Laszlo is waiting...
No thanks to MPS and COVID, your morning to-do list had changed significantly over the years. A G-tube is how you got your breakfast anymore. You spent most of most days at home, so while clothes and grooming were still a part of your day, the bother of a ponytail or shoes were no longer needed. No more drive to school, by bus or your mom's car. You had to wait for Laszlo to come to you, and when she finally did, she just sat in your living room talking to your mom most of the time.
Knowing so little about your mornings, I floundered slightly, determined to keep singing to your smile: Come down the hall and sit in your chair? Listen to your brother talk about Super Mario?
EARLY IN THE MORNING!
The gusto with which I hit that last line made you smile, which kept me singing. You kept smiling and I kept singing.
Two weeks later, you died.
When I got the news, our last visit was not my first thought; but it came to me eventually. Sort of an immutable truth, the finality of having looked into your blue eyes for the last time.
I became acquainted with the disease that was killing you, the moment I met you. The heavy knowledge that I would likely outlive you was something I carried with me as I walked out to meet you at school each morning, as we walked around your classrooms, as I fed you in the school cafeteria, or while I drove you to the library after school.
Over the nearly nine years I had known you, I wondered what my last living memory of you would be, and tried not to dwell on that question with every good-bye. Whether bidding you farewell before a weekend, or months of international travel, your frailty had to be held at arm's length. Otherwise, I might never have stopped squeezing you and kissing the top of your head. I might not have taken what you taught me into new life adventures.
As I think about those last moments with you, I am struck by how much it resembled most of our time together. Charged with your care and seeing to the quality of your life, I often felt inadequate for the task at hand. Nevertheless, guided by your acceptance of my efforts, Heave Ho!, I carried on.
You helped me give up on being good enough, and just focus on being. Being loud, loving, in touch, and able to glide forward, so very imperfectly. Singing the song: loudly when I knew what to say, and softly when I didn't.
But to keep singing.
