We spent over three months in the NICU after Callie’s diagnosis–and since then have spent what feels like a lifetime in and out of the hospital for surgeries, recovery, and appointments.
Something I learned very quickly as we joined this beautiful mosaic that is the disability community, is the importance of a “Community of Care.”
The term “Community of Care” is relatively new but in essence, it’s a place where you can be cared for in all of your humanness by other humans who have your back, no matter what. The idea of this community is to prevent and to heal, loneliness.
The poet Gwendolyn Brooks defined our longing for a Community of Care so beautifully when she said, “We are each other’s harvest; we are each other’s business; we are each other’s magnitude and bond.”
But then there is the question: how? How do we make each other our business? How do we show up well for others? I don’t have the perfect recipe that would work for everyone, but what I do have are ingredients–the things I learned over the last 15 years from being on the receiving end of this authentic care.
I think it’s important to note that having a Community of Care is not just for moments of crisis (I don’t want people to get hung up on what qualifies as “crisis” and never ask for or offer help). I think that any kind of transition, whether planned or unplanned, difficult or joyful, is a great time to show up, i.e.: new jobs, loss of jobs, new human babies and fur babies, new homes, new primary partners, loss of a primary partner, health challenges, planned surgeries, loss of loved ones, financial loss, natural disasters.
How To Create A Community Care Plan
This is like a User Guide to your life. I did not have one of these, but I found out later someone (I honestly still don’t know who it was) made one for James and I. People looked at our life and made categories of help, and then other people signed up to help according to what they had in expertise and in abundance. It included things like important contact info/emergency numbers, names of favorite takeout places and coffee shops, food preferences/allergies for a meal train, it listed things we both liked/appreciated and so much more.
It also included a column called “What can I offer?” and here are things people wrote: cozy socks, house sitting, once-a-week cleaning, epic playlists, funny dog videos, laundry, repair work, yard work, prayers, energy work, acupuncture, veggies from my garden, putting our trash cans out, baked goods, essential oils. One of my dear friends acted as liaison between me and the Care Plan, checking in daily to see what was needed, and then communicating those needs to whomever had offered something in that category.
Having a Care Plan is the answer to the all-pervasive question, “What can I do to help?” which, while absolutely well-meaning, wasn’t a very helpful question at the time since I had absolutely zero bandwidth to discern what I actually did need or the capacity to be able to communicate those needs. I was barely keeping my head above water.
Here’s what I suggest:
Think of what you would want if you were going through a transition, and then do that thing for the person you want to help. One of my friends who knows the importance of a good meal set up our Meal Train, and (genius tip) made sure a small RTIC cooler sat on my front porch through the week so that when I came home exhausted from the hospital and trying to protect Callie from germs, I didn’t have to make small talk, or cry and then feel guilty that they were comforting me, or have them cry and then feel guilty that I was comforting them. I could just receive. Another friend who is good with money set up a gift card drive and collected gift cards to restaurants, coffee shops, and grocery stores for us; another friend helped us write our update posts on the CaringBridge site so that I did not have to manage more than one platform of communication.
A friend who knows the power of a “porch drop” would leave random things at my front door—a specialty coffee, a mason jar filled with flowers from Trader Joes, a travel coffee mug, protein bars for James. It didn’t matter what she left; it mattered to have a tangible reminder that I was not alone.
Don’t let perfection keep you from sharing your presence. When we see someone going through transitions, we want so badly to do the right thing and help in the most perfect way possible. Trying to get helping “right” can often keep us from doing anything. Because I had a baby that had just had open heart surgery and an amputation, it was easy for people to buy Callie toys and blankets, and to send us gift cards to use while we were living at the hospital.
But what about when someone’s cat dies? Do you give money? A card? Send flowers? We, in an effort to help, get stuck because we think we should be able to intuitively know exactly what is needed.
This is especially true when someone we love is suffering—we want to make it better but we don’t know how to make it better so we don’t do anything because we’re afraid of making it worse.
“We want to make it better but we don’t know how to make it better so we don’t do anything because we’re afraid of making it worse.”
During our week long stay in the hospital after Callie’s amputation, one of my friends texted me daily paragraphs of encouragement—lines from poems, reminders to breathe, to love myself, to scream in the shower if I needed to. She never once tried to give me a silver lining; she didn’t tell me it was “going to be ok,” she didn’t tell me “what doesn’t kill you makes you stronger,” or “everything happens for a reason.” She stayed side by side with me at the edge of the abyss and held my hand while I stared into the void, and when things got really awful, she held my hand tighter and did not turn away from the darkness.
She helped me, not because she magically knew the right thing to do, but because she knew what every child knows who has ever skinned a knee and had it healed with a kiss; we don’t need someone to make it better, we just need someone to show up for us.
Offering help can be as scary as asking for help sometimes I think. We don’t want to offend our loved ones by assuming someone needs help. After all, we are the generation of the fabricated narrative of hyper independence that makes us feel like we have to have it all together all the time (according to some vague definition of “having it together”) and if we don’t, something is wrong with us.
But we heal in community, we celebrate in community, and we hold each other in community when things are hard. It’s one of the only things that still makes sense in this fractured world.
Like Ram Dass says, “We are all just walking each other home.”
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