The Faith of her Friends

 I kind of got off track with my regular posting schedule, because I have been having some respiratory issues for the past two weeks. I still don't know if it is due to asthma, stress, allergies, or the poor air quality we have right now... very likely a perfect storm of all of those things, I imagine. I've done a full round of antibiotics, steroids, a steroid shot, three different nebulizer treatments, four different cough syrups, and aggressive respiratory therapy, which for me means nebulizer every 4-6 hours, a vibrating bed in an inverted position, cough assist machine, and friends who aren't afraid to beat my ribs as hard as they can. Oh, the measures we take to keep Connie out of the hospital! It's not been an easy or fun journey, but as I write this, I am breathing deeply with minimal wheezing, so I think recovery is under way.  This is actually the second respiratory flair up I've had in three months. I landed myself in the hospital the week of Easter with p

Last week I realized that one of my newer caregivers was trying to figure out the perfect "Connie care" system, so that she knew how to do every task in precise detail, which could be written out in a plan and used in training other caregivers. I could tell that she was getting a little flustered when I wanted to do things slightly different than the week before. While I really appreciate her desire to be precise, I had a little trouble helping her understand that sometimes I switch things up a little... not in a major way, but enough to require some flexibility or wiggle room.  For example, if I'm feeling a little stronger or a little floppier at certain times, I will need a little more or less support for balance and movement. Or if I'm feeling sassier or more obliging, I might need more or less personal space. And sometimes to break the monotony and spice things up, I like to put on deodorant after my shirt, or brush my hair before my teeth. "It isn't an e

One really fun benefit to having "mom friends" who help me with my care is that often they bring their kids along, too.  On Thursdays, my friend Leah brings her two-year-old son, Felix. Felix comes in and says hello to me, and often has some important bit of news to enthusiastically tell me right away, like: "I used the big boy potty!" He quickly picked up on my desire for him to feel at home, and now he pulls out his favorite blue blanket from my basket, picks out a stuffed animal, settles in on the couch and tucks himself and his stuffy in with the blanket, and watches Daniel Tiger while munching on pretzels. Before he leaves I always thank him for coming, and in the biggest, most dramatic circus-ring-master way, he says, "You!... Are!... Welcome!" On Wednesday mornings, my friend Kelsey courageously comes with all three of her kiddos in tow: Forrest, Melody, and Eden. During the school year, Forrest was at school, so Melody got used to her own routine.

Over the weekend I enjoyed a day out with my friend Jodi, who is an incredibly creative, out-of-the-box thinker who is always fun to dream and brainstorm with. We did fun things like a farmers market, a tea room, a car show, a lake pier, and a bike trail at a state park. And we of course talked about disability life and accessibility in a very candid way that was challenging and exhilarating.  I've been depending on my friends to voluntarily help me with my caregiving for a year now. Last summer was an experiment to see if it was possible,  and we saw that it was. But it was the long-term outlook for this kind of lifestyle that made me anxious; while it was miraculous that 30 women would offer to take care of me for 10 weeks, it was easier when we all knew (or thought we knew) there was an end point. Kind of like a "roughing it" camping trip or mission trip, anyone can handle inconvenience and discomfort for a limited time, right? But when I bought my house, the short-ter

 This week some friends and I drove a country road that was very familiar to me, but instead of taking it home to NC as I've done many times over the past thirteen years, I took it to a new destination: Kingfield Cottage , near the New River Gorge National Park , and a stone's throw from Grandview.  It was my brother Kevan's idea, for me to get away to a lovely and peaceful place for a writing retreat, and where better to get away than wild and wonderful West Virginia! Of course, a big appeal to going there was to visit our friends, Sam and Gina Smith, who host the AirBNB and live close by. Sam and his son were there when we arrived to help us unload the car and get settled, and make sure the house really was as accessible as they hoped it would be for me (it was!).  It was the first trip I'd taken with my friend Kathryn, who I only met for the first time last fall. She's a busy mom of three young kids, and my tendency has always been to not even ask my "mom fr

On Saturday, a group of my friends and I did something really unique and fun. There was a special event in downtown Fort Wayne that was a GPS-app-based scavenger hunt and escape room, kind of like the popular Pokémon Go stuff, but this time the theme was Beauty and the Beast (and other assorted fairy tale characters). It involved in elaborate backstory and complex relational dynamics, and we spent four hours covering a 6-block radius of the city to gather clues, solve puzzles, and have interviews with fictional characters. We took a little break halfway through for a refreshing drink and snack at Fortezza , and we darted from shade to shade as the afternoon heated up, but we stuck with it, completed the challenges, and ultimately saved the Beast! Here were the three highlights of the event for me:  1. Doing it with amazing and adventurous friends. Pam, Kelsey, and Rachel are all three "O.G. Fort Wayne Friends" that I knew 10 years ago, and I am thankful that I get to still ha

 I've been living in Fort Wayne again for one year now.  Last summer, I did a little experiment you might remember... to see if and how I could live in my own place. I learned a lot about myself, my world, and my friends during that season, and in the end I bought a house! You can go back in this blog and read all about it, if you missed it. But when the summer came to an end, so did the experiment, and so did the blog. I moved into my cute little Salt Life Cottage in September, and worked on setting up house, managing my care team, and serving families through We Carry Kevan. At Thanksgiving, I migrated South to be with my parents and my brother Andrew's family in Memphis for the holidays and stayed through January. Then I came back home and basically hibernated through the rest of the winter and all the "false springs." And now that summer is back (sunny and in the 80s today!), I thought I might reboot this blog to fill you in on the things I continue to learn about