The weight you carry is my weight, too

True accompaniment means we lean toward interdependence.

Sarah in 2014, almost 18 months old. She is sitting in the Bumbo on the front porch of our former home in New Paris, IN, on the day our friends and neighbors helped us with a giant garage sale as a fundraiser for her ongoing medical expenses.

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In case you missed it, this month I’m focusing on the topic of belonging: what does it mean to feel like you’re part of something bigger than you? To be a member of a community or group and to be celebrated for who you are without feeling the need to conform or fit in? Each essay in April will feature a story that ties in with this theme of belonging and inclusion. I hope you enjoy them!

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It’s a sunny and cool fall weekday in 2013. I know this, because Sarah’s first surgery—a major one—is coming up in September. She will be six months old when her skull is surgically split in half.

I’m folding laundry on our dining table, because the laundry room is cramped. There’s a light tapping on the door, and I look up. It’s my friend and neighbor, Monica. She’s peering through the latticed upper window on our front door, and I wave at her. “Come on in,” I say loudly, because the doors are thin, so I know she will hear me.

She steps across the threshold and hovers over the table, where I’m sorting Sarah’s onesies and Felicity’s toddler clothes. “Oh, I’m sorry. I didn’t mean to bother you,” she says. I don’t look up from my work but shake my head and tell her, “You’re not. What’s going on?”

With that open-ended question, she begins to cry. Monica is not a soft crier. She doesn’t hold back, at least not in front of me. At this point, I put the burp cloths down and walk over to her, place my hand on her shoulder, and say, “Hey, I’m here. You can talk to me.”

She begins by saying she’s worried about her toddler daughter, Amber. I’m following. Amber has a fever. She’s been throwing up. Monica is terrified.

I freeze. What should I say? Monica is aware that Sarah is scheduled for a highly invasive surgical procedure in a matter of weeks. Yet here she stands at my side, in my home, panicking about her child being sick.

The temptation for me is to point this out. I want to tell her that everyone gets sick, including children. That Amber is otherwise healthy, so there’s no reason to assume she won’t recover. That with some Tylenol, lots of rest and fluids, she will get stronger within a week or so.

I want to tell her that Sarah is still a baby and she has to have her skull cut open. She will need a blood transfusion—mine, because we are the same blood type, A-negative, and she has to have an exact match—and there are risks. Death is the worst of them, of course. The neurosurgeon will make the incision across her skull to crack it open, and the craniofacial surgeon will insert the metal distraction device both internally and externally. We will have to use a medical screwdriver to rotate the pins protruding from her temples for the next three months. Every day. With precision. Then she will need another surgery to remove the hardware.

But I don’t say this to my friend, because it’s neither kind nor helpful. Instead, I listen to her concerns and assure her that she’s doing all the right things. And that she has a good pediatrician she can always make an appointment with if things get worse. She nods, hugs me tightly, sobs into my shoulder. When she pulls back, my shirt is damp from her tears, but I don’t mind.

“I really should get going,” Monica says, checking her watch. “Thanks for being my friend.” I smile and say, “Of course,” then open the door and wave goodbye.

When I return to the remainder of the laundry, I consider what just happened. It’s actually the opposite of what usually happens when I talk to people. Most of the time, once they learn about Sarah’s diagnosis and upcoming surgeries, they will preface what they are about to say with, “I know other people have it worse than I do—like you guys.”

I seldom say anything, but I want to tell them, “You have your hard. I have mine. One is not better or worse than the other. They are both different. That’s all. What’s hard is hard for me, and your hard is hard for you. There’s no comparison.”

I wish so much we would stop punishing ourselves by saying, or even thinking, this. I wish we would stop feeling guilty for struggling in our own lives as soon as we learn that someone is dying of cancer or a child has been in the hospital for six months. Like that somehow nullifies our personal trials. It doesn’t.

“Well, I certainly don’t have the load that you do” is an isolating statement. It puts a wall between people. And frankly, I don’t feel that way. I can listen to someone else’s version of hard without one-upping them by saying, “You think that’s bad? Well, let me tell you what I have to deal with…”

I wonder sometimes what might happen if each of us could set aside our assumptions and filtered worldviews and simply sit in the presence of another hurting human. Listen. Enter into their world, their experience. Try to understand what it’s like to be them. Recognize and acknowledge the discomfort as it arises, but then tuck it away for later exploration.

True accompaniment is when I find myself plodding along a path, then I meet another wounded person and take their hand in mine. Help them up if they’ve fallen. Put their arm around my shoulder for support. And I do this, even if I believe or appear to have a bigger problem of my own. Accompaniment is a form of interdependence, a symbiosis of hearts that do not judge, do not compare, only whisper to one another, “I’m here. I care.”

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Your financial contribution helps supplement our family’s expenses and offset the costs of ongoing medical care for our daughter Sarah that requires 20 hours of unpaid caregiving on my part. I want you to know how much your support means and how it helps our family.