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I can’t decide if I’ve been in Portland for just over a week, or just over two weeks. It feels like it has been months. This is a blog about nonprofits, so I’m going to do my best to tie that in somewhere, but it does feel good to take a moment, breathe, and write. First and foremost, Mom is doing great. Her physical and mental status reflects the best possible outcome of a terrible situation. Every time I think about strokes I recall details from one of my favorite books, so I know that now that we’re out of the danger zone, we have an exciting opportunity to rebuild positive neural connections.

I have a general tendency to put a positive spin on most things, but honestly, this hasn’t been easy, and not just for the reasons you’d think. Tough family moments have a way of stripping people down to their most honest and vulnerable selves, and while I’ve always been that way around my dearest friends, I’ve never quite shared that side of myself with my family. Until this week, I would have said with confidence that my best friends have seen my cry more than my family has. Reversing the trend has felt more than a little uncomfortable.

So there’s this profound sense of concurrent strength and weakness, now, because I can’t quite hold it together enough to pretend that I don’t worry, that brain issues haven’t kept me up at night (my grandma’s aneurysm, Martha’s epilepsy, my central apnea, and now this), and that my reaction to this latest medical problem doesn’t mirror what I went through growing up with Martha. I’ve done my utmost to be as supportive and helpful as possible, but on a selfish level, I would give anything to just see a friend or my boyfriend or even set foot outside the house. Writing this blog and knowing someone may read it is the first cathartic experience I’ve had. I can’t believe how much being back home in the midst of another medical problem is causing me to re-live my childhood.

And now to relate this to the Great Exchange. The Great Exchange exists because Martha has had a profound impact on my ability to empathize and feel joy and compassion for all types of people, and I want other people to experience that too. It’s also an oversimplification. For the purposes of the organization’s story, that oversimplification will stand. But on a personal level it feels a bit flat, like a painting that contains no shadow, like a romantic comedy, like a book without subtext.

From a purely developmental perspective, thinking about who I was as a child, for every positive experience there was a negative. For every insight gained, there was a tough lesson. For every award-winning piece of poetry I ever wrote, there was a child who sat in her room and wrote poetry, trying to be quiet and good. Behind my decision to attend Smith was a desire to go to the same school as my favorite children’s author, whose books I would read as a kid until the pages literally fell out because reading is all I ever did, and I was convinced those books were “rescuing” me. For every disabled child who has grown up happy and loved, there is a sibling who has quietly set their own needs aside.

The reason people grow up and move on and smile and laugh and build relationships and start nonprofits and become healthy is because it’s nobody’s fault. I’d venture to guess the majority of people who found nonprofits do so for personal reasons, and those reasons are probably laced with a hint of pain. That’s okay. But coming home and dealing with my own pain means I’d really like the Great Exchange to embark on an initiative that helps siblings, that puts them in the spotlight, that makes them feel special and loved even as their family is forced to prioritize the special needs child.

It’s going to be important to focus on the main goal of the Great Exchange before expanding, but as I recruit our Core Members I’m no doubt going to encounter the siblings who get lost in the trenches, and it would be great to funnel them somewhere. I’m going to do some research on my own, but if anyone knows of any sibling support networks in the Austin area, I’d love to build a partnership. Just email me; I’m always open to brainstorming.


3 responses »

  1. It’s good to hear you’re being strong and vulnerable with your family. Keep it up, and you know all your friends are here for you too. Love.


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