The Faith of her Friends

 For the record, the sidewalks of downtown Fort Wayne are pretty awesome. Most of them are very smooth and even, and curb ramps are easy to navigate. Granted, Fort Wayne is super-flat, in a stereotypical midwestern way, so that makes it easier, and the downtown area has had a major facelift in the past ten years so a lot of the sidewalks are new. But still, I give kudos where kudos are due: Well done on the accessibility, city of Fort Wayne!  This summer I've cruised along on many of the sidewalks to get to various places, and I have identified an occasional rough patch of sidewalk that took some turtle-speed and dime-turn maneuvering to conquer. Some are broken up and gravelly, some are pushed up by tree roots, some are too narrow for me to get around a fence or fire hydrant. And while I do conquer them, I have made note and figured out how to avoid them in the future. But every time I come upon a tricky spot, I pause and assess the situation. Is it worth tackling? Should I backtr

This summer I'm reading through the gospel of Matthew in my quiet time. It's full of very familiar stories to me, many of them brief and episodic touch points for individuals with Jesus. So to gain fresh perspective I have been asking myself, "What came next? How did these encounters with Jesus change everything?" Because it always does!  One evening I was starting to get anxious because no one had signed up to stay overnight with me, and everyone I'd talked to had good reasons why they couldn't, and I couldn't get a hold of the rest. At about 8pm, I was stressed out and started to cry, feeling so vulnerable and helpless and wondering if this whole summer "adventure" was a foolish mistake. I went over to my desk to get a tissue for my eyes and nose, and my Bible was open right next to the tissue box, so my eye caught the passage that I would be studying the next morning ("if I survive this night!" my melodramatic mind added). It was the

A few years ago, my dad built this amazing machine for me, to pick me up out of my wheelchair and transfer me to other surfaces on my left or right.  It's a travel-lift, so it is compact (fits in a pickleball bag), lightweight (made mostly of aluminum) and resourceful (uses my wheelchair as a counterweight and power source). It keeps me and my caregivers safe, and has been truly remarkable for my road trips and weekend excursions. In preparing for this summer I decided it would be the primary tool for all my lifting needs. I learned after one week that it probably wouldn't be a good idea to depend on it quite that much. It requires a bit of assembly on the back of my chair where I can't directly supervise, and since I was having a lot of different people try to use it throughout the week, we ran into a few issues and concerns. One night I was laying in bed and praying about it. "Lord, I think I might need a back-up or alternate plan for transfers. You know this is a cr

 The last time I lived in Fort Wayne, I had a very big group of friends and a very small group of caregivers. I did this on purpose, thinking that it was somehow better to not burden the majority of my friends with my weakness, and keep my needs as private as possible.  I'm realizing that was just my pride disguised as humility, and it was a great disservice to the people I loved.  One of those friends was my pastor's wife, Mandy. We've had some excellent conversations over the years, and we got to have another one a few weeks ago, as we ate Jimmy John's sandwiches on the sidewalk. Through an indirect request, Mandy got invited to join the care team this summer, and we had just successfully completed one of our very first "caregiving tasks" together.  "I feel like we were close before," she said, "but you never invited me into this area of your life, and I never asked if I could be a part of it, so we kind of held each other at a distance. And i

 One of my goals was to live in an apartment downtown. Fort Wayne has pretty great accessibility because of sidewalks and an extensive, city-wide bicycle trail called The River Greenway. How amazing would it be to be able to get around on my own, to be within walking (rolling?) distance of great restaurants, parks, churches, and street festivals! And that has definitely proven wonderful for me.  There were two major issues I did not foresee:  I couldn't come and go from my apartment whenever I want, because I cannot open, close, or lock my front door on my own. Downtown parking for my friends is hard to find, and not cheap.  But I'm forever in problem-solving mode, so I went to work tackling these issues by taking a deep breath, reminding myself of what is true, and getting creative: Independence is not about being alone, but about creatively using the resources around you. So, I just plan my comings and goings around when my friends are with me. I'll leave at the same time

You may think that you have never been a caregiver, or that for whatever reason you couldn't be. If the idea of caregiving feels overwhelming to you, I'd like to share a few examples that I've received this summer that may surprise you, and I hope they will encourage you as well... Edi : Edi is a little girl who is actively losing her two front teeth. She comes with her mom sometimes during my bedtime shift, and puts toothpaste on my toothbrush, brings me a drink of water, and holds all my pillows while I get situated in bed.  Penny/Ruby/Holly : Three sisters under the age of 12 accompany their mom occasionally when she comes over during lunch shift. They help by filling my water cup, getting a napkin and silverware out, washing my dishes, and keeping me company while I eat. Lunch is so much more fun and entertaining with them around.  Connie : Pastor Ryan's mother came over one day to clean my apartment from top to bottom: swept my floors, washed and put away all my di

No, actually, it is Lynn.  In my younger days, I was much more daring - I went on roller coasters and blazed trails and ate baby-back ribs and drove my chair to the edge of cliffs. I've been thinking more about crazy young Connie this summer, when people tell me how brave they think I am, and I smile to myself, knowing that it is taking a lot more effort these days for me to take on a lot less than I used to. Various pains and disappointments over the years have made me more careful and hesitant, and I relate more and more to Bilbo Baggins in The Hobbit (the book), who said that adventures were "nasty, disturbing, uncomfortable things that make you late for dinner." Honestly, a nice, quiet, calm, uneventful dinner sounds nice, doesn't it?  Nevertheless, there's a tingling in my spirit that says I'm not quite ready to be finished with new challenges and experiences. I still have a longing and a hope that my heart will grow stronger and my soul will expand, and

I have about five friends in Fort Wayne who have previously assisted me with caregiving, and who were able to commit to helping with this summer experiment. Since I've known them the longest and they have the most experience, I call them the "original gang" - the O.G.: Pam, Rachel, Abby, Julie and Lori. We've done everything from sleepover parties to quick bathroom breaks in coffee shops to road trips together! And while I didn't want to depend completely on them for everything, I knew they would be incredibly important in helping make this summer a success. So the month before I moved, I asked them to pray with me for helpers, and also to start recruiting.  As I mentioned in the last post, that is a hard ask, especially to strangers. None of us knew how it would be received. I reminded them that I don't need specifically medical professionals, just friends who were available and willing to learn. And thanks to the awesome travel lift that my dad made for me,

SPOILER ALERT: This is actually Week 5 of my experiment, and I'm still alive! :) Building a team of volunteer caregivers is really challenging, especially when most of them haven't met me yet. The question/invitation of: "Would you be a caregiver?" is a loaded question - what does it even mean? I have SMA type 2 and that comes with extensive caregiving needs. I am wheelchair-dependent and can’t bear weight. I also have weak grip in my hands and cannot lift my elbows. My balance is sometimes precarious, and when I am laying down, I cannot sit up or roll over. In my wheelchair, I have limited range of motion; if you can, imagine yourself sitting in a chair with your elbows tied to the armrests, your thighs tied to the seat, and your ankles tied to the legs, and you’ll get an idea of how much I can move on my own. So caregiving means transferring to and from my chair, propping my elbows up on surfaces so I can wash up or feed myself, washing and drying and brushing my

Whenever I told anyone that I was moving to Indiana for three months this summer, the biggest (and most obvious) question I got was "Why?" Why now, why there, why three months? What are my goals and hopes? My sassy short comeback was, "Why not?" But I'll start this blog with a longer and more honest answer... I work full-time as the Family Engagement Director of an organization called We Carry Kevan . That means that pretty much all day every day I am sharing the mission of WCK with people all over the world – people with mobility-related disabilities, their caregivers, friends, family members and other influential people in their lives. The mission states that “We bring disabled and able-bodied communities together into intentional friendships and facilitate opportunities to redefine accessibility as an innovative and cooperative effort.” I tell people that accessibility and caregiving should be creative and community-oriented. I tell people that independence