What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key
Oh I get by with a little help from my friends
― The Beatles
Beautiful child...
Beautiful child...
You are a beautiful child
And I am a fool once more...
… Sleepless child
There is so little time...
― Stevie Nicks (for Courtney and Bill, her dad)
So while I'm a little concerned that I jumped the shark with that last journal entry (for those of you who clicked through to the video/song), I'm going to evoke Lennon and McCartney and trust that the friends still with us on this journey and reading these posts are not going to stand up and walk out on me (no matter how out of tune my singing may be!). And who knows, maybe it will unleash a whole new genre of bad karaoke. Kanceraoke? The strained exhausted voices of emboldened mothers everywhere!It was quite emotional to put that montage together, let alone sing to James the song that I used to soothe him when he was a baby. Going through those pictures along with some old videos of James - with all of the spunk and energy he had just a short time ago, as it evolved and enlivened with every birthday and milestone - brought home just how far we have departed from what felt like a near picture perfect trajectory. Of course, no one's life is perfect no matter what Instagram may imply: we were no exception to that truth even before this stumbling stone found its way onto our life path.
Singing has always comforted James, sometimes the only thing as a baby or toddler that could calm him down in the midst of a tantrum or nightmare, or in the grip of some other fugue state that we couldn't wrestle him out of. That has been true in moments over this last month as well (almost one whole month!). Making that video was also an acknowledgement that it is going to take all the creative energy and love we can muster to get through the intensity of the next 6 months given what is ahead, as well as the enduring support of family and friends. And James will need to summon his own creativity too. Music has proved a creative little beehive for him as well - his humor shows through even now in the little songs he makes up, the simple games of rhyming and alliteration and riffing on various words. He often hums any sentence to the tune of Star Wars, no surprise, but he also made me grin profusely when he absentmindedly started singing "It's a Small World After All" the other day using only B's at the start of each word, a common musical game of his for some reason .."Bit's a Bald Burld Bafter all..."
And you know what? It is a small world, and perhaps a bald one too - I feel more supported, more seen, less anonymous, more connected and confident in humanity and community and compassion than ever these days. And many have stories about a friend of theirs with a child who had the same diagnosis and did great even during their own bald and raw chemo experience. Friends of mine old and new are connecting through Facebook or from different corners of my "neighborhood" here at home, or from past chapters in our lives, and discovering how much they enjoy each other or how small their own degrees of separation are. We're all connected, and the upside of all of this has been that our whole support system is actively connecting now, finding common ground and community. Even the four of us - we're connecting more as a nuclear family as well, shaken from our daily norm of distraction and focused on life in a more proactive way than ever.
That web of support and connection has been at full steam ahead in a way I can only begin to describe, let alone do justice to with words to convey our gratitude. A simple note can move me to tears, as do the meals that show up on our doorstep every day delivered with love and concern, each personal and thoughtful care package that arrives, every donation or gesture someone makes to show support and solidarity. Granted, I am overly sentimental these days - I swear that even the stoic lady at the DMV counter gave me a compassionate flicker of a glimpse yesterday when I went to pick up a handicap placard for hospital parking. But we feel so loved. The Momfia who has kept my life organized, my spirits up, both my daughter and my own mother feeling loved and on track in my absence - these incredible women who have become my family, and who rock with generosity and just get shit done (apologies for the crass language, I am more than a little sleep deprived as my son is a sleepless vampire child on steroids right now and I just can't think of a better term). My unbelievable sister who is the nexus of our whole support system; my calm, steady, committed brother; my warm and patient saint of a mother with us every step of the way at the moment, my loving father and generous stepmother and their awesome clan, Charlie's phenomenal rock solid parents who have been on call every minute of every day and his stellar supportive siblings (note: I feel like I am at some perverse Blog-focused version of the Oscars fumbling my way through a heartfelt thank you speech ... a counterfeit Carrie Bradshaw,a la Cancer in the City?). All joking aside: so many others who have stepped up in ways innumerable. People give of themselves when and how they can, and it is a privilege to be the recipients of all the ways in which our web of people have harnessed their unique personalities, world views and resources to show love on our behalf.
I know it sounds almost cliche to say how overwhelmed and grateful one is by the outpouring of love and support of friends in the face of a difficult time. We are so moved, and I don't have any more eloquent words than that. But here's the rub: while it is true that I am unbelievably touched and humbled, I have to confess that I am also somewhat ashamed. The people who have stepped up and stepped in since James's diagnosis have taught me what being a true friend can mean in ways both small and large. There is such a wide range in the means and methods to show true friendship and support for those you care about, and a lot of latitude. A wise friend told me at the beginning of this that there would be friends and people who step up in ways you could never have imagined, and also that there would be close friends who would not be able to engage for whatever reason...and that even if you are surprised or disappointed by someone's lack of response, you can't take it personally.
I think I used to be in the latter category. A friend going through a hard time - of course I would be there to lend an ear or an insight, provide a shoulder to cry on, and genuinely offer to help. But I realize also that my own MO was to quickly re-focus on my own anxieties, my own issues in need of navigation, and that my "presence" as a friend was likely often as a distracted one no matter how much I truly empathized or cared. To a friend in pain like mine now, I would sometimes start a note only to get frustrated that it sounded too trite and give up, thinking that maybe the right words would come to me the next day, the next week, the next coffee date. And then time would pass and any gesture I could imagine making would seem like too little too late. Courtney - if you are reading this, I am so sorry I wasn't there for you. I didn't know how. I truly loved him. I never found the right words to tell you how much I ached for you.
It is always hard to know what to say in the face of tragedy. And my advice now, on the other side of something like this, is ... just say something. Say anything. The words don't matter, the attempt really does. Listen. Hug. Bear witness. More micro-advice if desired? Don't feel the need to ask the loaded, concerned "how are you?" but shift it to "how are you ... today?" Otherwise that caring inquiry is almost too global to ask and even too overwhelming to address. Because ... how am I? There just is no one answer the that question. I'm everything - strong, pissed, weak, frightened, courageous, angry, exhausted, grateful. It depends on the moment and on the perspective I can access at that moment. Half the time I am a total mess. The other half I'm centered and strong and gaining traction by the day. Say anything.
And as for our growing web of family and friends? Grace told me this morning that she would really like to "combine" our family and live together with some of our other family friends - straight out of the Momfia of course. How very progressive of you, Ms. Grace! I'm all for the commune approach. I'm just not sure anyone would want to join the shit-show behind this particular curtain at the moment, but we're taking applications through the fall. We could all live in a yellow submarine.
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