Spread the love

I don’t make it out of the house very often these days. I won’t leave with the kids unless Joey is with me in case we have an emergency on the road. We try to go somewhere as a family on Saturdays, and Sundays we try to go to church. Since Joey and I are the only ones who can care for Belle at this point, leaving her with a sitter isn’t an option, and we pretty much have to be home (or close to home) by 5:30 every evening. As she gets older, my understanding is things will be different (always Lord willing, of course) and we will slowly gain some freedom back. For now, this is just the way it has to be. We don’t feel sorry for ourselves. We spent way too much time in the hospital, with other people who spent way too much time in the hospital to pity ourselves for being “stuck” in our cozy home with both our kiddos under one roof. Shame on us if we ever feel sorry for ourselves for that blessing. Being at home so much has certainly changed some of the dynamics of our lives though. What we have found so surprising however, something we never saw coming, was that we have done more socializing in the last month of being home than probably any other time in our marriage.

The Nursing Debacle

People keep asking us when we are going to get nurses and my response to them is, “good question.” I’m not going to waste my breath or this entire post by explaining all of the details of why we’ve been home for almost six weeks and still have no nurses in our home. The bottom line is that Joey and I are doing medical care that people go to school for a long time to learn and get paid lots of money to do. Much of what we have had to do over the last month has been through trial and error which is a bit terrifying when it involves your child’s life. Thank God my husband is very wise and can remain calm in high stress situations because we have had our share of scary moments and Mama Bear tends to lose her cool…and fast. Papa trouble shoots, one step at a time, and so far, he has been able to “fix it.” Still, this reading specialist and tree guy with absolutely zero medical background could use some help and guidance from the professionals. Sometimes, when people with a medical background hear what we’re doing and describe it as “insanity” or our insurance case worker tells me she has literally never seen this happen to a family with a condition such as Belle’s before, Joey and I start to wonder if we’ve been punked somehow. Like, where are the cameras, people? But as I sit here and reflect over the last month of stumbling over our daughter’s care and sleepless nights and scary days, I realized, there hasn’t been one full day that I’ve been alone through it all. No, Joey and I aren’t alone. Not even close. And although we may be “stuck” in our house a lot of the time, we aren’t isolated, because “the church” has come to us. Right here in the country, the church just showed up at our doorstep….literally.

When the Church Comes to You

“What church do you go to” tends to be one of the first questions people ask us when they find out we are Christians. A popular idea is that “the church” is the building you walk into on Sunday mornings. We are both very active (or we were prior to Belle girl) members of the Grace Brethren Church. While actually walking in to our local GBC over the last 3.5 months has happened somewhat infrequently, we have experienced “the church” in newer, more beautiful ways than perhaps any other time in our marriage. A Biblical principle we were aware of but never fully experienced to this degree before is that the church as Christ ordained it, isn’t the building you do, or don’t attend on a Sunday morning. The earliest church, as outlined in the Biblical book of Acts, was a group of believers who gathered together to devote themselves to the apostle’s teachings (i.e. the teachings of Jesus), the Lord’s supper, prayer, and fellowship with one another.  Basically, it was people who believed the same thing, followed the same God, and wanted to do everything they could (including selling their possessions to help others in need)  to be together and to help each other. While we couldn’t always physically show up at the church building, the true church came to us in ways we had never experienced before.

It showed up as chicken casseroles left on our door step and home made soups filling our freezer. The church came as hospital visits, and people cleaning our home and mowing our grass. The church sat on our floor, playing trains and building blocks with Jonah in the evenings as Joey and I struggled upstairs teaching ourselves to hook up TPN.  Our “church” (which consists of many different people from many different home churches) used their personal days to sit at home with me, and they even wrapped our Christmas presents this year! It wasn’t something that just happened on Sunday morning at 10:30, but every day of the week so Joey could go to work and I could have someone here with me in case of an emergency. The offerings weren’t checks in the plate but rather gas cards to drive to the hospital and donations to pay for supplies insurance doesn’t cover. One night, the church literally showed up at our doorstep bundled in hats and gloves, singing Christmas carols just to brighten our Christmas because they knew we don’t get to leave the house much.  I never had to dress up for it. I was lucky to have combed my hair or brushed my teeth most days when people showed up. But they didn’t care about my stinky breath and greasy hair, or the fact that Jonah was still in his pajamas from yesterday, or that I didn’t even have any food in the refrigerator to give them for lunch (except for maybe a leftover casserole) because they were there to serve us, and in doing so, the One whom they really served was Jesus himself.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

Even when we couldn’t go to the building, the true church, the people, came to us. May Joey and I and our children never forget about it and someday, when we get our bearings, may we also show up on the doorstep of another hurting family, with casseroles in hand and carols on our lips.

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