Thursday, December 27, 2012

The Best of Christmas 2012

Mostly because I don't want to forget, and partially because I appreciate the scoop on good gifts for kids, I'm going to review the best of the Bernheisel Christmas, 2012.  Here goes:

Best Christmas Breakfast Strata

Brunch Strata RecipeI found it on Allrecipes about a year ago.  This is the second time I've made it, but I don't want to forget that it is my favorite.  It's full of ham, zucchini, onions, mushrooms, bread, and lots and lots of cheese.  I intend to be more dedicated to Paleo in 2013, but I will come back to this next Christmas, bread and all.

Here is the link to the recipe.

Thank you, Arlene Butler, wherever you are.

Best Squash Casserole 
Image for Squash CasseroleIf you said it didn't look all that great, I would agree with you, but that's because the picture shows it made with french fried onions.  Yuck.  But I left out those atrocities to foodkind and it was good enough to make me weep.  It requires boiling the squash and onions before putting it all together, but that step wasn't as time-consuming as it might seem.  Again, with the cheese.  Lots and lots of cheese.  We had this along with a roasted leg of lamb.

Here's the link.  I I found it quickly on Pinterest, but don't want to lose it.

Best Movie We Watched Over the Holidays

Hugo PosterI heard an interview with Brian Selznick (who wrote the book on which the movie is based) and was intrigued.  And it has clocks and gears and robots in it, so there was no doubt it was going to be a grand-slam in our house.  I'll admit that I slept through the first half--I was in desperate need of a nap--but I think I managed to see the best stuff.  The kids loved it.  It's PG.

Best Nerd Gift

Hydrodynamic Deluxe SetIt's the Hydrodynamic Deluxe Set.  It's what you give the kid who's already exhausted the Chaos Tower from last Christmas and needs to learn about fluid dynamics.  I was a little concerned about mess, but one of the things that I love about this is that the whole thing comes in its own carrying case.  Several of the best building sets we have (Chaos Tower, Quadrilla Marble Run) come in a cardboard box that disintegrates after about a week.  But this just packs up nicely when the bottom part of the case isn't used for holding the water.  It didn't take too long to master, and it seems to be fairly easy to take apart and reassemble (the Chaos Tower last year took a long time).  It also lends itself to allowing the user to create configurations that aren't listed in the manual.
Perfume Maker
Best Gift for a Pleasant Surprise

I make my own laudryry detergent, household cleaners, and deodorant, so when my dad said that he had gotten Clare a perfume-making set, I had my doubts.  But I'm surprised at how much I love it.  First of all, all the scents are all natural.  Second, Clare had no problem jumping right in and making her own scents.  She's made a bottle for everyone in the house, and they actually smell good!  Once she mastered the eyedropper (one drop equals a drop, not a squeeze) she had it made.

Best Gift for Anyone

Extreme Dot to Dot: Extreme Animals
So, my mom got them for my kids, but I do them after they've gone to bed.

Best Places to Shop for Christmas Gifts

Daily deals for moms and kids.  I've been buying gifts all year long.  Some I even forgot about until I started looking for the presents that I'd hidden.  By the time Thanksgiving rolled around, most of my shopping was done!

MindWare has become our go-to for shopping for things for the kids.

Best Pants

So, for no reason that I know of, a glorious new catalog arrived in my mailbox this Christmas.  Sahalie.  Have you heard of it?  I hadn't, but two pages in and I was in love. They have this stuff called Butterfleece.  It makes me want to curl up with myself and take a nap.  I need a pillowcase made out of this stuff.  Anyway, I treated myself to some Butterfleece Snuggle Pants.  I probably won't ever take them off. And they come in TALL!!!!!

Saturday, November 17, 2012

Pictures from NYWC, Day 3

My dinner at FT33.  Pork loin, butternut squash, black trumpet mushrooms, kale, prunes, and almonds.
I thought I might die.
Jereme's dinner.  Lamb breast and rack, barley, yogurt, poppy, and carrot puree.
Get it? The puree looks like a carrot!

Dessert! Lemongrass panna cotta.

Jeff's dessert! Pumpkin, pear, bourbon glaze, and pecan yummies.

NOT the two most photogenic people in the room.

The cute waiter with the facial hair near the sign proclaiming that good moustaches are always in season!

Blogging from NYWC, Day 3

If I recall, I took it easy on Saturday last year, too.  I went to a great seminar with Jim Burns on building family-based youth ministry and then went for a run.  This one was much more successful than yesterday's. I finally made it to the part of downtown that isn't being torn apart, and that made for a much easier time of it.  Plus, I actually mapped out my route beforehand.  That may have made it easier, too.

At noon, Nick and I had lunch with our new friend Jeff (although at this point he probably counts as old friend), and our old Lambuth friend Malissa who is a Minister to Children and Youth in Tampa.  We talked about Jackson and Lambuth, but it was also really neat to connect about our ministries and share our ministry stories.

At 2:00 it was time for the last seminar of the day.  Since our church is planning to focus on biblical storytelling in the coming year, I decided to go visit Mike Novelli, whose writing focuses on biblical storying for youth.  I took a picture, asked him about his presentation last year that I regularly listen to on my mp3, and volunteered to help him during an activity.  He probably thinks I'm his stalker.  But it was great information that I'm excited to take back to my church.

Then Jereme came to pick up Jeff, Nick, and me and take us out to a new restaurant that he found.  It was more event than meal, and we (at least I) had a wonderful time visiting and eating.  It was one of the greatest meals I've ever had, and I've had some pretty decent meals in my time.  It was FT33 and I highly recommend it!

Now I am getting ready for bed and a long day tomorrow.  We have a full day of seminars and a flight back home to look forward too.  Oh!  And lunch with my professors and colleagues in my D.Min. program who are here!

Pictures from NYWC, Day 2

Waiting for the evening plenary!

Adrian (in the red) leads a youth ministry team from a church here in Dallas.  He was called to be a youth pastor at a church that didn't have any youth, so he and his team had to go find them.  They do a lunch ministry in their local high school, and Mark is telling him that YS is sponsoring lunches for the rest of the year.  He then broke it to Adrian that Doug Fields was giving 10 scholarships to the Student Leadership Conference for Adrian's team and the kids he wanted to bring from the lunch ministry.

One other high point was that the couple married for the shortest time and the couple married for the longest time both got to go on dates sponsored by YS.

Tony Campolo getting a Lifetime Appreciation Award from YS.

Believe it or not, the Methodists had the coolest booth in the exhibit hall. Bazinga!

Blogging from NYWC, Day 2

My only complaint so far about the hotel is that there are no protein options for breakfast unless you go to the hotel restaurant, which also requires a full month's mortgage.  So I had fruit and coffee and my stomach was growling by 10:00am.

BUT it was drowned out by the brilliant teaching of Duffy Robbins, who continues to rock my world no matter how often I hear him.  His learning lab was called Teaching that Sticks Instead of Teaching that Stinks, so my youth can now look forward to teaching that doesn't stink, and that may have been worth the cost of admission.  Although I am, in fact, in a D.Min program for ministry to children and youth, I've never had the benefit of something like a Youth Ministry 101 class.  This was surely it, and I am grateful.

Nick and I made a new friend who lives in Nashville but graduated from Lambuth, and he joined us for lunch.  It was lovely.  Then we went back to plenary where Mark Yaconelli and Mark Matlock wowed us.  I went to marks contemplative retreat last year and would think he was amazing if he just stood up and recited the alphabet.  But this was wonderful, and the whole plenary ended with storytelling and fake snow.  Not too shabby.

I skipped one of the afternoon activities in favor of a run.  I think Dallas hates runners because they don't even have sidewalks in much of their downtown.  I did a lot of dodging cars and wondering why the streets can't be on a grid, but I did make it back without getting perilously lost.

When I returned, I went to a seminar by Chap Clark.  I really appreciate his research and writing, but I wasn't sure what I was going to get out of the seminar since I've read a good deal of his work.  But, as usual, sitting in a room with someone puts information in a whole different light than simply reading what they've written.  In fact, I was inspired to write myself late this night after hearing him.  He reinforced much of what I already knew, but with an urgency that I needed to experience.

We had a dinner at a disappointing Tex-Mex place in the food court next door, which was clearly not expecting a massive descent of hungry youth workers.  But it was food and that was what mattered.  Then we went back to plenary.

If you've never heard of Bob Goff, you need to.  He is the president and founder of Restore International, an organization that works to fight injustice against children. I have honestly never heard anyone like him.  I WILL be buying the DVD of that session.  If you're ever having a bad day or just aren't feeling all that great about life, come borrow it and I guarantee that your trust in the true, the beautiful, and the good will be restored immediately.

He was followed by Gungor.  I don't think anybody here, even the sponsors of the convention, have figured out how they scored Gungor, but it was unbelievable.

Now I am worn out and ready for bed.

Friday, November 16, 2012

Blogging from NYWC, Day 1

On the way here I read through my posts from NYWC 2011 and I was amazed just thinking about how much things have changed since then.

During the contemplative retreat held before the official start of the convention, I was consumed with Jay's illness.  I even made him a little sculpture-y-thing out of clay and took a picture of it so I could tell him what it meant when I got home.

That was also the first time that I had traveled by myself since having kids, and I also remember having a lot of anxiety about being away from them for so long.

It was at the NYWC last year that I first heard Tony Campolo and Duffy Robbins, and it was where I first heard about the D.Min. in Ministry to Emerging Generations at Gordon-Conwell.  You see where that got me.

But this year is much different.  It's much less overwhelming.  I actually know people.  I'm here with someone else.

Jay has had his transplant and is doing exceptionally well.  I'm pursuing that D.Min. that I heard about last year.  I walk through the bookstore for the convention and can count on one hand the books that I don't own. (Last year I came home with 22 extra pounds of books).

I wouldn't have guessed that I would have measured time from a youth ministry convention, but it seems to be more significant than I first imagined.

Today Nick and I managed to make it to Dallas and get to our first Learning Lab, despite our flight being canceled.  We went to Duffy's lab for 3 hours, and even though I spent two weeks with Duffy this summer, I still find so much that I don't know.  He really is a gem.

One thing hasn't changed from last year to this year:  There are still about five concurrent sessions at each block of time that I want to attend.  I guess I'm in for another set of podcasts!

Tuesday, November 13, 2012

My Little Liturgist

On the way home from Joshua's birthday dinner tonight, I was reminiscing about his first few days of life.

Me:  "Joshua I can't believe you're seven!"

Joshua: "Mom, it's just seven!"

Me:  "I know, but when you were born I thought my life had come to an end.  You cried all the time!  You were so needy.  I didn't know what to do with you.  I'd never been around babies before.  I'd never been around someone so needy before..."

Clare:  "I guess you heard the cry of the needy!"

Long pause as Jay and I stare at each other

Me:  "How do you know about the cry of the needy?"

Clare:  "From where we ask God to forgive us!"

Merciful God, we confess that we have not loved you with our whole heart. We have failed to be an obedient church. We have not done your will, we have broken your law, we have rebelled against your love, we have not loved our neighbors, and we have not heard the cry of the needy. Forgive us, we pray. Free us for joyful obedience, through Jesus Christ our Lord. Amen.

Monday, July 30, 2012

Blogging from NYC, Day 6

We decided that this would be a sleep-in day.  Our flight wasn’t supposed to leave until 5:25, so the plan was to check out of the hostel, store our luggage, shop, eat, and meet back at the hostel at 2:00 to get to the airport. 

One group went to Dash and the other went to the Strand in Union Square.  I personally managed to spend my children’s inheritance (without feeling guilty), and our group also managed to be late getting back to the hostel.  There were no negative effects, and we got to the airport with plenty of time to spare.  The news that the flight was delayed by an hour wasn’t met with much concern, because it would give us time to eat before boarding.  But then the flight was canceled.  This wouldn’t have been too much concern, either, except that rebooking twelve people is much more difficult that rebooking one or two.  We got on the phone with the reservation agent (one strike against Delta:  Their Group Reservation desk is closed on weekends, meaning that a group can get no help from someone who knows what’s going on during the weekend) who couldn’t get all of us on another flight until 7:30pm on Saturday.  We offered to fly to Nashville, Memphis, Atlanta, with as many connections as needed, but no luck.

The next challenge was finding a place to stay.  When we called the hospitality group recommended by Delta, the message stated that New York was experiencing a citywide sellout.  Oops.  After a lot of trying, we finally called Expedia and asked the agent to help us find any hotel that had a shuttle to LaGuardia.  We found one that was right next to the airport and actually had three rooms available.  We congregated in one room to watch the Olympics and then went to sleep.

Blogging from NYC, Day 5

The last day.  The day to end all days.  The day built in to the trip so that we could do anything we wanted to do.  We started off by walking three blocks to Central Park.  We saw a guy doing yoga, and we got a sweet guy to take a picture of all of us.  Then we decided to hop a bus to go to the bottom of the park so that we could see Strawberry Fields. We walked quietly through the Strawberry Fields, took some photos and continued to the southeast corner of the park where New York suddenly became magical.  The Friends fountain, the Plaza Hotel, Tiffany, and everything else that makes New York famous. 

We headed down to South Street Seaport again to try to get show tickets.  The line was down the street so I got in line and sent everyone else to get drinks in the shade.  I stood behind a couple from Florida and they gave me the scoop on all the shows.  They had already seen Once and were in line for tickets to ClybournePark.  This was their third trip to New York in the past year to see shows.  I made it fairly close to the front of the line and alerted the girls that they needed to come make a decision about what show they wanted to see.  But the allure of the show had faded and the group decided to skip it.  We went to Red for lunch, but two other girls went with me to Brooklyn to meet with RobNadeau.  Rob is a friend of Jay’s from high school, and Jay had just seen him in January.  I wanted to meet him and see his studio, and a couple of the girls wanted to go too to check out the life on an artist.

It was a wonderful decision.  Rob was fascinating to all of us, and gave so generously of his time to talk to us about his life and work.  All of us had been so amazed by the cost of living in New York, and had been having casual conversations with people all week about how they live in he city given the expense.  Rob gave us yet another glimpse into city life, and gave us so many insights about living simply and being true to one’s calling.

Those who hadn’t gone to Rob’s house went shopping, and we met some of them at the Museum of Modern Art for Free Friday.  I never made it off the fifth floor.  I was a little surprised at the number of people who were taking photos of the paintings.  They didn’t stop to read or really look.  They just shot by and took photos.  It was a little strange. But the museum as a whole was beautiful and I’m so glad we went.

After MOMA we all went to Dylan’s Candy Bar, and I’m pretty sure everyone bought at least one thing.  I bought plush pillows for my children, and then we went down to Serendipity 3 for dinner and frozen hot chocolate.  Unfortunately, at 9:00 o’clock, the wait for dinner was still 2 ½ hours.  So we backtracked to California Pizza Kitchen for dinner and a debrief of the week.  Each of shared what we learned about God this week and what we learned about ourselves. Then we moseyed back to the hostel to pack up and go to bed.

Sunday, July 29, 2012

Blogging from NYC, Day 4

We woke up ready for our last day and headed to St. Peter's Episcopal Love Kitchen in the Bronx. It was a long ride, but were glad to be in the train and not out in the rain.  We were greeted by Rosemarie who, it seems, runs the show.  Mother Joade, the rector, was in Israel learning Hebrew, so we didn't get to meet her.  We were shown downstairs to the dining area where we rolled silverware, prepared fruit cocktail bowls, and a few other tasks before the diners arrived.  We didn't  serve as many as they typically serve...the regular volunteers said that it was because of the rain.  But we enjoyed serving the guests at their seats, restaurant style, and making sure they had everything they needed.

We were joined in our efforts by a group from the public school down the street.  Their teacher told me that they are new to the school system and don't speak English, so her job is to work with them the summer prior to their enrollment so that they can be more prepared for school. They might not have spoken English but they definitely spoke Cute Girl as they ogled the young ladies in our group.  It was cute.  After we finished serving, we ate ourselves, and then got a tour of the church.  It was breathtaking.

We headed back to YSOP (from almost one end to the other on the 6 train) for our final debriefing time.  We said goodbye to our friends from MN, took some final photos, and I said a nearly-teary goodbye to Lisa, whom I love so dearly and was so happy to reconnect with.  Then we had a hunt to go on.

On our way back to YSOP we had seen trailers and signs to the filming of Law and Order: SVU.  Once we were done at YSOP, we followed the signs.  We never saw the actual set, but we did see Mariska Hargity's chair!  *Squeal!*

Our next stop was the TKTS office at South Street Seaport to see about show tickets for Friday.  It was 6:01pm when we got there. The office closed at 6:00.  Oops.  So we headed back in the direction whence we came in order to go to the 9/11 Memorial.  Note to anyone interested:  You have to have reservations to go to the memorial.  We spent awhile there, and Olivia found the name of the man whose family she'd been praying for since she was in the third grade.  We headed back to our own neighborhood and had a fantastic dinner at the Metro Diner.  Then we went home to get enough sleep for Friday.

Blogging from NYC, Day 3

Today we went to Brooklyn.  Our worksite was the Flatbush Reformed Church, the second oldest church in New York City.  We met Pastor Dan, and he sent half of us down to see Gary in the kitchen.  Gary clearly had things under control and found some things for us to do, and then we took a tour of the garden and composting center locating on the church grounds.  After we tooled around for awhile, it was finally time for us to go upstairs and serve food.  We had spaghetti, garlic bread, two kinds of salad, and desserts.  Flatbush Reformed serves a free, hot meal every Wednesday, and today we were joined by about 50 people for lunch.  We cleaned up, and then we headed back to the hostel to change clothes and get ready for dinner.

Dinner this evening was an unexpected treat.  Well, it was expected in that we knew we would be having dinner at YSOP with some special guests, but I'm not sure we expected to have as much fun as we did.  Tonight at 4:00 we gathered with our friends from MN and got our dinner assignments.  For each task, two Jackson youth paired with two MN youth. Four of them made mac and cheese, four decorated cupcakes, four made salad, and four prepared garlic bread.  The laughter from the kitchen almost drowned out the adult conversation in the next room.

Pretty soon five guests arrived from the Doe Fund.  You can read here to find out more about how it got its name.  Before I had a chance to even see what was happening, board games were out and conversation was deep.  A big group of guests and youth were playing Apples to Apples. Another was playing dominoes. There was a game of chess in one corner, and Anthony, the staff person who had brought the men, was holding court in one half of the room.  Anthony is a Doe Fund success story and motivational speaker.  And he was motivating those fortunate enough to be sitting with him.

Dinner was soon served and the conversation was animated and joyful.  The men we hosted were pretty amazing, and we loved being with them.  We ended with a circle of silence (this is a Quaker organization) and said goodbye with lots of hugs and well-wishes.

Once dinner was cleaned up, both groups headed to the Staten Island Ferry for an evening ride.   We introduced them to the joy of looking for rats in the subway, which thrilled their leaders, I'm sure. There was only one instance of only half the group getting on the ferry before the other half did, but they hugged a tree and we were easily reunited.

Saturday, July 28, 2012

Blogging from NYC, Day 2 (When we didn't follow the Chinese lady down the stairs)

At YSOP, we were joined by Susan Nayowith, the Director of Office of Client Advocacy at the NYC Department of Homeless Services.  She told us that last Friday night, the city of New York sheltered over 43,000 individuals.  New York has a right-to-shelter law, which means that if you can prove you're homeless, the city will make sure that you have a place to stay.  A recent census showed that roughly 4,000-5,000 New Yorkers spend the night on the street regularly. Lisa told us at the beginning of the week that 40% of New Yorkers are hungry at any given time.  Those numbers were staggering. Susan was gregarious and passionate.  Most of all she was hopeless.  In the face of such overwhelming statistics, she doesn't give up advocating for the least of these in the city.

After Susan left, we headed to Chinatown.  When I was in Chinatown 20 years ago, all the fake stuff was right out on the sidewalks.  Fake bags, fake watches, fake whatever you could want.  Recently, however, the police have been cracking down on the counterfeit industry.  So now you have to stand around looking clueless and hope a Chinese lady comes to take you to her secret basement stash of counterfeits.  

When our Chinese lady approached we followed without much thought.  But when she opened to secret door to the basement I panicked.  I hollered for the girls to come back up, which really hacked off our would-be saleslady (and some of my girls), but I figure that if you can't do your business out in the open then I shouldn't do business with you. 

On the way to Chinatown we walked through the East Village and ate at Congee.  Not wanting to miss out on other ethnic flavors, and sad that we left without purses, we moved along to Little Italy and had dessert at Ferrara's.  It was a little pricey but did not disappoint.

The highlight of the day, after the purse disappointment, was the discovery of rats in the subway.  I'm sure they've been there every time we've ridden the train, but tonight was the first time we noticed them. And took pictures of them.  And yelled at them to get down when the train was coming.  But I'm sure no one knew we were tourists.

Friday, July 27, 2012

Blogging from NYC, Day 2...Wonder Women

Sister Mary Renee was clearly a no-nonsense kind of gal.  She moved quickly through the serving area and kitchen as she gave us instructions, and we made sure that at least one of us stuck to her like glue so that we could get the instructions and then pass them on to the rest of the group.  She clearly didn't have time to stop and spell it out for us.

Once the line got going, though, and in between phone calls, she was happy to talk to us.  We found out that she is French and that she's been in East Harlem for 35 years.  She thinks East Harlem is luxury compared to the neighborhood in Chicago where the Fraternite Notre Dame Mother House is located.  She and the other nuns live upstairs, and they spend just about every waking moment in service to the poor.

We served 271 meals, all of which were prepared by Sister Mary Renee herself.  We ran out of food and another tray would be in its place before we could turn around.  She's trilingual--as at home speaking Spanish to a family and she is speaking English and French.  Sister Renee is a force to be reckoned with.

Then there was Sister Mary Benedict.  She poured the juice as the patrons went through the line.  Half my size and wearing Converse All-Stars under her habit, we dubbed her "Pocket Nun" and decided that we really wanted to take her home with us.  When she wasn't pouring apple juice, she was quietly moving her hands along the rosary, praying.

The girls and I talked about what it must be like to be a nun.  To give up everything that society tells us is important.  One of them mentioned that they would be bitter at having to give up everything.  I wondered aloud if it made a difference that God had called Sister Mary Renee and Sister Mary Benedict to do the work that they do.  And if bitterness comes from not doing what God has clearly given us the gifts and graces to do.

I think that of all the experiences here in  NYC, my day with the Wonder Women of Fraternite Notre Dame might just have the greatest impact.

Here's a link to the website.  In the picture of the kids planting flowers, Sister Mary Renee is on the left.

Thursday, July 26, 2012

Blogging from NYC, Day 2

On Tuesday morning, Team A got up and out the door mostly on time.  We headed for the M116 to East Harlem where we planned to work with Fraternite Notre Dame.  One of the neat things about YSOP is that you never really know what you're going to find or what you're going to do. Yesterday when we asked Lisa what we would be doing at Baby Buggy, she was happy to tell us, but yesterday was the only morning to be at YSOP before going to worksites.  So we're pretty much left to find out what we're doing when we get there.  Our bus ride was pretty painless, we got off at the right stop, and we headed to the address provided.

As we strolled right past the storefront soup kitchen, several friends of the soup kitchen let us know where we were supposed to be going.  We guessed that the bright blue YSOP shirts gave it away.  We went in and asked for our contact, Sister Mary Renee.  She gave us a liability release to sign and then disappeared, leaving us to make ourselves at home on two van bench seats sitting against one wall.  Our surroundings were unimpressive.  Two long tables were surrounded by 16 metal folding chairs.  A baker's rack full of huge bags of bread sat against the front window.  The room was dark and dreary.  And we surely felt a bit in the way, like Sister Mary Renee was going to have to work around us.

Our first job was to take all of the donated pastries and put them on baking trays, and then put the trays on the tray rack.  We made short work of it, putting the fancy cupcakes in a pattern and peeling the Dunkin' Donuts treats off the sides of the bins in which they had been delivered.  There was a little bit more busy work to do, and then we sat and visited with each other until 10:30 when the serving line opened.

Then we didn't even have time to breath.  We stood behind a tiny serving line together.  Sister Mary Renee wouldn't allow us in the dining area as she was concerned for our comfort and safety. The room was 94 degrees as we stood over warming pans scooping mashed potatoes, rice, sausages in a red gravy, and vegetables.  Mary Parker made sure every patron received their pastry of choice, and even provided a bonus donut hole.  The line kept going until 12:45.

We didn't look up long enough to figure out the seating system, but apparently the folks that didn't get a seat inside got sat outside on the sidewalk.  There were a couple of patron/helpers who ran plates out to folks who couldn't inside because of mobility issues or wheelchairs. Sister Mary Renee made sure we knew that the people could eat as much as they wanted.  No one was going to leave Fraternite Notre Dame hungry.  When the line closed, we cleaned up the dining area, bagged the leftover pastries, and headed back to YSOP.

Blogging from NYC, Day 1, Part 2

All of us (both church groups) shared nachos and shared stories from our days.  The other half of the FUMC group did laundry at CAMBA, and the group from MN worked at soup kitchens.  Then we had to decide on dinner.  Showers were in order.  Even though my group had been inside, we were definitely hot and tired.  So we all headed back to the hostel to amp up the cute factor before heading to Luigi's for pizza.  Five of us split an extra-large basil, tomato, and mozzarella pizza and it was truly the best pizza I've ever eaten.  I helped another group finish off their pepperoni and it just wasn't the same.  There was something totally magic about that pizza.

Then we headed to Times Square.  In the rain.  I know that I was there in 1990, but nothing looked familiar enough for me to definitively pick a spot where I had stood.  It was just input overload.  We spent an hour in Forever 21 (I sat on a bench), but my favorite was simply standing and taking it all in (Times Square.  Not Forever 21).  It was massive and amazing.  We made it back pretty late, but not late enough that Ben and Jerry's was closed.  So we indulged and headed back to the hostel for some rest.

Wednesday, July 25, 2012

Blogging from NYC, Day 1

First of all, let me say that I have never had a particularly good sense of direction.  Despite this, I have learned to navigate public transportation in two major American cities to the point that I could provide directions to out-of-towners without having to stop and think.  Today proved that I have been out of the city for far too long.  The trip that should have taken 30 minutes ended up taking 90.  And I take full responsibility.  I relied far too heavily on technology that, in my particular situation, does not work underground. And I should know better.  I am married to a man who will memorize all of the particulars of a subway system before ever walking out the door.  But I failed.  Admittedly, the newsstand man was partly to blame.  He did provide abjectly wrong directions, but I shouldn't have had to ask in the first place.

We arrived 30 minutes late, but all was not lost.  The other group serving this week was already there and orientation had begun, but there were still plenty of bagels.  God is good.

After learning about YSOP, about the week, and about our assignments for the day, we were ready to go.  Team A, the team I am leading, headed downtown to Baby Buggy.  The address didn't mean much to us when we first saw it, but when we got off at Times Square and walked through the Fashion District, we were pretty excited.  Baby Buggy is located on the eighth floor of a relatively nondescript building.  They don't provide direct service, so it's pretty much a storage area.  Baby Buggy was started by Jessica Seinfeld and is essentially a clearinghouse for corporate donations of baby clothes and gear to go to service agencies that help families in need.

We started out by patching clothes.  When places like Children's Place donate clothes, they mark them with a small cut or notch to prevent resale.  So, armed with irons, clothes, and Bondex, we repaired two bins full of clothes and sorted them.  Then we started uncrating baby supplies and separating them into bins so that volunteers could bundle them and send them out.  Agencies served by Baby Buggy put in orders at the beginning of the month, letting Baby Buggy know what they will need for their clients.  Then volunteers get those orders together to be shipped out.  We were impressed to learn that the sippy cups we were sorting would be in the home of a family by next week.

We were impressively efficient, and our volunteer coordinator let us go early.  We made a few stops on the way back to YSOP, and were thrilled to find warm nachos and salsa waiting for us when we got back.

Tuesday, July 24, 2012

Blogging from NYC

Way back in the Fall, I started looking for a mission trip for the senior high students.  To the person, they wanted to go to New York City, so I started looking for a suitable trip.  I wanted an opportunity that provided a good foundation for understanding homelessness, hunger, and poverty. I checked the UMVIM website to find our mission partners in New York City and found Youth Service Opportunities Project.  I gave them a call and found out that one of the people I loved most from seminary just happened to be the program director.  Figuring that this was an obvious sign from the almighty, and over the moon that I reconnected with an amazing woman, I began the process of planning the trip.  Flying was cheaper than taking a charter bus, a hostel seemed the perfect opportunity for getting a real feel for the city, and everything fell into place.  Mostly.

Sunday was chaotic, as one might expect.  I spent Saturday on the phone with Delta trying to get them to honor the contract that stated explicitly that I was allowed to change the names of up to 50% of my passengers up to 24 hours prior to the outbound flight.  One of our adult leaders had to bow out at the last minute due to health issues in her family, and we were able to find someone to go in her place at the last minute.  Once that was resolved, all was well.  I met our new mission team member for the first time on Sunday morning, the team was commissioned in both services, and we left after lunch to get to the airport in Nashville.

All was well.  Our flight was a bit late, but it landed at the time it was scheduled to land.  We waited for 45 minutes for the M60, but finally made it to the hostel and to our beds by a little after midnight, ready to start our adventure the next morning. Early.

Thursday, June 07, 2012

Where are the Bernheisels?

So what you really want to know is, how's Jay doing?

Pretty well.  So well, in fact, that he's actually having labs drawn less frequently than once a week.  His bilirubin still fluctuates occasionally but the NP promises that such fluctuation is normal and that there's no need for me to vom all over the place.

He still naps a bit during the day, but you would too if you had the chance, wouldn't you?

He looks great.  People who see him regularly still comment on how good he looks.  His face is a teeny bit puffy from steroids, but he's going to stay on them at least until the surgeon releases him back to the hepatologist at the end of June, so the puffiness will remain.  It's barely noticeable, and we'll all certainly trade that for good health.

He's started running again, and has apparently claimed one of the spots on the American Liver Foundation team for the Chicago Marathon.  He's still working to get back in shape, but he's doing great.

And from what I can tell he's having fun right now.  I'm in Boston, and he and the kids are wending their way here at their own pace.  Jay's 20th high school reunion is in a few weeks, and he's going by himself.  But this trip has given him the chance to take the kids to Rochester and see some of his high school friends who live there.  His FB status updates all day have been about his old stomping grounds.  He's clearly happy.

So that's Jay.  Feeling good enough to drive two kids from Jackson, TN to Boston, MA by himself.  Maybe he's just psychotic again.

Tuesday, June 05, 2012

Interesting Experiences

Last November I was at the National Youth Worker's Convention, listening to Duffy Robbins lecture.  The last thing he said was, "Walt Mueller and I are starting a Doctor of Ministry program at Gordon-Conwell Theological Seminary in Ministry to Emerging Generations beginning next summer.  I have a voucher here that will waive your application fee."  I forgot to use the voucher, but I spent the next few weeks pitching the idea to my pastor and others, and getting the blessing of those whose blessings I needed so that I could apply to the program.  Last February I learned that I had been admitted.  I've been preparing for our first cohort ever since.  And now I'm here.  In Peabody, MA. Commuting every morning up 1A to Hamilton where I sit in class for eight hours a day.

I've been all over the map emotionally.  I knew going in that Gordon-Conwell is part of the Reformed tradition, and that most of the people here would likely come from different theological backgrounds than I.  Sometimes that realization gave me pause and sometimes I didn't give it a second thought, but last night I took a long pause.  I was just uneasy about my milieu here.  I'm one of the few that identifies with a denomination at all.  When my peers reference theologians, they use names with which I am wholly unfamiliar.  Some of them come from churches that would never consider ordaining a woman or letting her preach.  But they have all been so gracious and kind.  Last night, though, after a discussion in the latter part of yesterday's lecture, I didn't feel so good.

So this morning I cornered Duffy at breakfast and asked him if I was in the right place.  We had a good talk, and I came away feeling much better.  I drove up to campus by myself so I would have more time to process my thoughts, and by the time I got into the classroom I was fine.

The day ended up being pretty phenomenal.  We did a lot of talking about postmodernism, which was very interesting.  I can remember being in classes in both undergrad and graduate and feeling like I had nothing worthwhile to add to the conversation, and that my questions were stupid.  And I would certainly never push back against something that one of my professors said.  Today I discovered that I'm not that person anymore, and it was pretty liberating.  In fact, I had to keep telling myself to keep my mouth shut and let other people talk.  I've never had that experience in a classroom before.

For the rest of the week we'll be Skyping in authors of books that we've read and that will be interesting.  Most of us in the class had visceral reactions to some of the texts.  Tomorrow could get pretty heated.

But tonight the sun came out and most of us went up to Rockport, MA to have dinner on the water.  I felt at home with my classmates, felt accepted by them, and certainly felt gracious toward them.

I think this is OK.

Sunday, April 15, 2012

Recovery is Hard

Before the transplant we thought that the actually physical recovery immediately after the surgery would be the hardest thing that Jay would face, but he blew through that with no problem at all.  He was discharged four days after the transplant and everything looked pretty peachy.

Our Transplant Notebook warned us that there would be a honeymoon period, and then something would occur that meant the honeymoon was over.  Maybe further surgery would be needed, maybe there would be another hospital admission for IV steroids if it appeared that the body was rejecting the liver.  In our case, it was medication-induced psychosis.  

The day that he was admitted for the latter, his labs looked a little suspicious.  His WBC count was higher than it had ever been, two of his liver enzymes were pretty high, and his Total Bilirubin had increased a bit.  Whether his labs were related to his psychosis we'll never know, but we do know that things went a bit wonky.  They normalized while he was in the hospital, and then they were wonky again the Monday following his second discharge.  That was the Monday when the nurse called to tell us to be prepared for a liver biopsy the next Wednesday.

There wasn't much we could do about the biopsy, but we decided that we needed to be much more intentional about Jay getting quality rest.  We implemented a strict afternoon naptime and a "no entertaining after 8:00pm" policy.  By Wednesday Jay's labs had improved so significantly that the biopsy was cancelled.  

Jay feels better than he's felt in years and wants to take advantage of every moment he has, but even in the midst of that we've learned the hard way the necessity of focusing solely on only healing activities.  Fun stuff like walking, eating out, and visiting with friends come only after an excess of naps and nighttime sleep.  

Who knows if the improved labs had anything to do with intentional rest, but we figured it didn't hurt and that it was a practice we needed to continue.

It's surprising to me how much we have to concentrate on creating an environment and lifestyle that are conducive to recovery.  I would have thought that once he was out of the hospital and at home the rest would be easy.  But every time we see the surgeon he says, "I had the easy part.  You have the hard part.  Healing is the hard part."  I wouldn't ever want the responsibility of transplanting an organ, but there is a sense in which the long-term intentionality involved in recovery is extremely difficult.  Everything else is secondary to the healing environment and healing lifestyle.  

Who knew?

Saturday, April 14, 2012

The Long Road

I have a hard time believing that Jay's transplant was only 3 weeks and 4 days ago.  When the nurse called yesterday afternoon to give us Jay's medication adjustments, she asked how he was.  I told her that he was great; he had just gotten up from a nap and was out for a walk.  She sounded a little bit shocked. 

"Is his, um, mind OK?"

I assured her that it was, and that I would not have allowed him out by himself if I wasn't certain that he was going to be fine.  The surgeon had told us at clinic on Wednesday that Jay could be unsupervised for a few hours at a time, and I have been taking that very seriously.  

Post-transplant life has been an amazing learning curve for us.  While Jay's initial recovery (read: discharged from the hospital four days after his transplant) was impressive, there is still an amazing amount of tweaking that the surgeons have to do to get his medications exactly the way they want them.  The idea is to have him on exactly the right amount of medication to ensure that his body has enough leeway to work on its own while keeping it from seeing the new liver as an enemy to be destroyed.  And that's a really tricky business.  

In order to do that, Jay has to have labs drawn every Monday, Wednesday, and Friday.  And those labs have to be drawn at Vanderbilt so that the transplant team can look at them immediately and make medication adjustments the same day.  On Mondays and Fridays we show up at the hospital at 8:00 for the blood draw, we're done by 8:15, and we hear from the team sometime in the late morning or early afternoon. On Wednesdays we show up at the hospital a little before 8:00 for the blood draw and then see the surgeon (along with the Nurse Practitioner).  They all look at Jay's wound, poke around his belly, listen to the details about how Jay's feeling and what his concerns are, tell him how amazing he is, and then tell us that they're not ready for him to be too far away yet.  

This always comes as a shock to me.  I mean, he's going on walks around downtown by himself, we went to the park the other day with friends, his appetite is great.   But then I remember that he and his liver have only been together less than a month.  Regardless of how well he's doing, the surgeon reminds me, he (the surgeon) has no idea what to expect.  We'd like to think that it's smooth sailing, but no one really knows. "If I knew would could go wrong," the surgeon said, "I'd take care of it right now and send you home."

Every single body experiences a transplant differently.  The 60-something-year-old guy who got his transplant two days after Jay has already been sent home.  That's the drawback of being young and healthy, and of having a protracted illness... Jay has a bangin' immune system that wants to fight back against the new organ.  On the other hand, his body has had a long time to deteriorate.  That makes this a tedious process, but probably no more tedious than it is for anyone else.  Because all the surgeons can do is install the organ well and then wait for the recipient's body to respond.  All any of us can do is wait.  

Wednesday, April 11, 2012

Because It's Not All Bad

I've gained at least six pounds since Jay's transplant.  For several reasons.  One is that there's only so much hospital food that tastes good, and those yogurt parfaits aren't exactly low calorie.  The second is that I am in food heaven.  You can't swing a dead cat around here (either at the hospital or downtown) without hitting someplace unbelievably tasty to eat.  So let's go in chronological order:

  1. San Antonio Taco Company (Satco, if you're in the know).  There are two locations.  One is downtown and one is a few blocks from Vanderbilt Hospital.  The chips and queso will make you want to smack someone, and I never found a single taco that I didn't want to clone and take home with me.  The atmosphere is quite lovely on the porch.
  2. The Mellow Mushroom.  Even the gluten-free pizza crust was fantastic.  Sarah and I got half Hawaiian and half Mega Veggie.  It was, in fact, a pretty mellow place and I think I found a new favorite place for pizza.
  3. Noshville.  You really have to make sure that your partner isn't experiencing a psychotic break when you eat at Noshville.  Wait.  You really have to make sure your partner isn't experiencing a psychotic break PERIOD.  But even if he is, the food will still be great.  I got a breakfast bowl once, but every other time I've gone I've gotten the reuben.  There's no reason to get anything else.  
  4. Puckett's Grocery.  I went to the one in Franklin with the senior adults from church, so I was thrilled to know that there was another one a block from our apartment.  I usually get the 4-veggie plate, but I also recently got the Fried Green Tomato BLT.  Yum!  I don't think it's possible to go wrong here.
  5. The Old Spaghetti Factory.  I'm pretty sure I'll have to turn in my FOODIE badge since I only discovered in the past week that Old Spaghetti Factory is a chain.  I just never would have guessed.  It was the go-to place for big occasions when I was growing up.  I remember celebrating a birthday with my parents in the red trolley.  The discovery was disappointing, but it didn't stop me from eating there.  
  6. Taco Mamacita.  The best part is the "two tacos and one side" deal.  Or maybe the fact that I have documented proof that Taylor Swift dines there.  Again, I've eaten there three times and have never been disappointed with a single bite that I put in my mouth.
  7. Burger Up.  Everything comes from local farms and it is unbelievable.  On the day that we went the special was the Greek Lamb Burger.  It was, without a doubt, the best burger I've ever eaten.  I almost ordered another one.  Next door is Las Paletas, a gourmet popsicle store.  I'm glad we didn't pass that one.  I had chocolate chili and Jay had Mexican hot chocolate.  We were both very happy.
  8. Riverview Marina.  My dad called up on Friday with a hankering for catfish on the river.  So we went.  It was a beautiful drive and a beautiful day to sit and look at the water.  And the catfish was wonderful.
  9. Edley's.  Jereme brought this to us one night.  The turkey was pretty great and the sides were tasty, but I couldn't tell the difference between their pulled pork and ribs, and everyone else's pulled pork and ribs.
  10. Batter'd and Fried.  I'll admit that the only reason I picked this place was because I heard that Ben Folds had been spotted there once.  He wasn't there, but I did find a hearty helping of clam strips, haddock, shrimp, and fries.  I don't know that I need to go back, but it was good for a quick and easy lunch.  
  11. Fido.  I'm including Fido even though we ate there way back when we were here for our evaluation. The food was excellent.  I had the huevos rancheros and a good cry, and I'd go back in a heartbeat.
Looking back on it, I think my evaluation of my dining experiences directly correlates to whether Jay was in or out of the hospital.  The food that seemed to taste best was that which I ate when someone dragged me out of the hospital and made me eat something other than "The Health Plate" from the hospital cafeteria.  (The cafeteria food is actually quite good, and I am grateful for The Health Plate, but you can only walk into a place so many times before it gets old).

That said, I am so grateful to those who forced me to take a walk and find some tasty food.  And I'm grateful to spend some time in a city where there is so much good food to be had. And I'm REALLY grateful for people with whom I can enjoy it!

Saturday, April 07, 2012

To All the Beds I've Loved Before

Tonight I will be sleeping in my own bed for the first time in nearly three weeks. As I tried to wrap my head around that, I began to reminisce about all the places I've spent the night since March 20.

March 19 was my last night in my own bed, and even then I only slept for about an hour. Since then, I've spent
  • 5 nights on the foldout bed/in the recliner in two different SICU rooms
  • 1 night on the couch in my dad's guestroom
  • 1 night in the king-size bed in our apartment
  • 3 nights on a rollaway cot on 10-South during Crazy Week
  • 8 more nights in the king-size bed in our apartment. Some of those nights included bonus kid
At this point I think I could sleep anywhere, but I am grateful for this one night in my own bed. I hope to return to it soon!

Friday, April 06, 2012

Discharge, Take 2

The liver team came in pretty early in the morning to tell us that Jay would be able to go home that day, but of course the discharge didn't actually happen until late in the afternoon. Dr. Iqbal was in clinic all day and wasn't able to get the order written until much later than we had anticipated. My mom had to come and get us since we had both arrived at the hospital in the ambulance.

We made it home well and I went to the Turnip Truck (God bless those hungry people in The Gulch) for groceries and dinner. Of course we had to be back at the hospital the next morning for labs, but we had a great weekend of out-of-town guests to look forward to. Our friends Jenny and Tim came into town, as did our children. We feasted around downtown on Saturday and worshiped at McKendree UMC on Palm Sunday. On Sunday afternoon Jay's parents took Joshua back to Jackson and Clare stayed with us.

Monday morning required us to back to the hospital for more labs (labs plus the little incident of psychosis are why we're required to stay local for awhile), and when we were on the way to the Belle Meade Mansion with Tim and Jenny later that morning, I got a call from the nurse. This is nothing new. We always get a call from the nurse after labs. But this time the nurse said that she wasn't happy with his labs and that he was scheduled for a liver biopsy on Wednesday.

Basically his WCC was too high and his liver enzymes were too high. This happened the day that he was readmitted to the hospital as well, but we dodged the biopsy bullet since his numbers came back down while he was in the hospital. We hoped to make that happen again. So we sent Clare to my mom's house on Monday afternoon while Jay took an epic nap. On Tuesday morning we ran some errands, came home, had lunch, and then we all had an epic nap. On Wednesday we went to the hospital for our clinic visit. This will be a regular occurrence on Wednesdays, but we missed the last one since Jay was laying delusional in a hospital bed.

This was a particularly fun visit. The FNP who saw us first was Chris, the precious guy I talked to the day that Jay was listed. It was neat to finally put a name with a face. In fact, I wish I had a picture of his face when Jay asked if he could have a manicure.

"I'm pretty sure no one has ever asked me that before. But I'm going to go ahead and say 'no.' It's a little too soon to risk it."

Then Dr. Wright came in to check Jay over. He was quite pleased with everything, including Jay's labs. They scrubbed the biopsy, told Jay that his edema would subside eventually if he'd stop drinking so much water, and basically said that he's doing extremely well. And in so many words Dr. Wright told me that I needed to chill out and find other things to worry about. Jay is recovering like a champ. We celebrated by sending Clare for another afternoon with my mom while we took another big old nap.

Oh, and we get a day pass for Easter Sunday. Whoopee!

Saturday, March 31, 2012

Things Start Looking Up

The first thing Jay said when he woke up was, "That was awful."

I agreed.

He went through all of the bizarre posturing and behaviors and explained why he had done what he had done. It was great at first, he explained, when he believed he was in control of everything, when he could make our kids appear out of thin air, and when he didn't need medicine because he had actually made up the whole thing about needing a liver transplant. But then it turned hellish when he couldn't get out of his delusion.

Wednesday turned out to be a day of recovery. There was lots of sleeping. Lots of Jay feeling the after-effects of not being careful about his wound and moving much more freely then he probably should have. Lots of the nurses changing his meds BACK from oral suspension to pill form. My awesome friend Molly came by the hospital and we went for coffee and a chat, and mostly managed to solve the ills of the world. Jason came by to make me leave for lunch, but I insisted on staying until rounds were over. During rounds we found that they wanted to keep Jay for at least another night for observation, and then Jason and I went to Taco Mamacita.

And had lunch with Taylor Swift. Sort of.

I wouldn't have even noticed if Jason hadn't pointed her out. I think that a Nashville point of pride is that we mostly leave celebrities alone, so I did. But I swore that if I saw Ben Folds I would be one of those obnoxious people who ask for a picture.

Tharon and Cecil from church came by on Wednesday afternoon while they were in town. And Wednesday night we rested, hoping that we would get to go home on Thursday morning. Oh, and I had a conversation with the psychiatric
nurse about whether I was OK with Jay starting an anti-psychotic drug. She convinced me, and I allowed it grudgingly. And we slept.

The Longest Day

When Jay "woke up," he was still completely manic. He wanted me to lay down with him, and what I did he'd start naming everything that he saw. He'd put his forehead against mine and say, "Foreheads together; foreheads apart." The liver team came in and Jay continued with the mania. He told them how he had taken Clare to New York and how they had "saw Jewish people and ate bagels," which just about sent us all over the edge in hysterics.

And I forgot...the previous night I had to take the clock off the wall because he was so focused on it. And I laid in bed wondering what on earth was going to happen to my family if Jay had to receive inpatient psychiatric care for the rest of his life.

The liver team said that they weren't going to do a liver biopsy because Jay's last set of labs showed that his WBC and liver enzymes had come back down. They said that they were probably looking at a reaction to medication and that it would resolve itself. I kept myself from saying, "When? Today? Next week? Next year?"

And then his behavior turned even more bizarre than before. He kept counting up and down from four on his fingers. He kept lifting up his right forefinger, holding it out in front of him, and then putting the tip of it in his mouth. He kept holding both hands out in front of him, bringing them together, placing them on his chest, and then holding them back out again.

And I couldn't do anything to stop it. He wouldn't take meds. He wouldn't eat. He wouldn't stop the bizarre movements. At one point he just kept looking to the left and not paying any attention to what was going on around him.

Both of our phones had died in the night, and my mother was going to bring over my computer and my phone charger. By the time I fired up my phone on Tuesday morning, my FB had blown up. I felt terrible for leaving people hanging, but so grateful for the response I had gotten. I sat in a chair in the corner of the room and ugly-cried for a long time. For so long, in fact, that the nurse came over to me told me that it was her job to take care of me as well as Jay, and made me promise to ask for what I needed. I told her that I needed to sit in the corner and cry like a baby and read the prayers and messages that everyone had left for me. With that over, I felt like I could actually function.

It was about that time that the doctor ordered 5mg of Haldol. Haldol is an old-school antipsychotic drug that acts like a sledgehammer. There's really nothing nuanced or fancy about it. It's just an absolute sledgehammer. After Jay got that, he slept for about 5 hours. At leas I thought he was asleep. Later I found out that he was completely aware of everything that was going on around him, but he was simply processing it through the psychosis and it was becoming part of the "dream" that he was having. Every word said, every beep of the monitors, every smell of alcohol, everything he saw ended up on a continuous loop that played over and over in his head and wouldn't stop. He was really locked inside his own mind with no way to get out. What started out as a pleasant dream turned into a nightmare as he realized that there was no way to stop the endless loop of stimuli except to die.

At 11:30 or so, the Chief came by and assured me that this was temporary and that they were going to fix it. He also told Dr. Iqbal that if Jay wasn't taking meds and eating, she would need to use a Dobhoff tube. She came in a little later to position it. Jay was aware of what was happening but never responded.

Meanwhile, my pastor, Dan, dropped off two bags of groceries (these will become important later) and prayed with us. He didn't stay long. I think he knew that I was exhausted and needing to concentrate on Jay. But he did bring me the first food that I had eaten in over 24 hours. That was the best sandwich I'd ever put in my mouth. It was a man sandwich, too, which was awesome. I don't know a lot of who get women get jalapenos and banana papers and spicy whatever sauce on a sandwich, but this sandwich had all of it. It was like he was saying, "Look, tofu and lettuce aren't going to cut it for you. Here's what you need, sister." I loved it because it came from the very depths of Dan's heart and his absolute concern for me. He wanted everything to be better, and somehow that sandwich represented his desire to do his very best on my behalf.

Somewhere in the late afternoon Jay's hepatologist came by. Jay isn't under his care right now because he's under the care of the surgeons, but my mom had stopped Dr. Perri that morning and told him what was wrong. I needed to see him so badly. He and Jay are kindred spirits. Both smart and nerdy. Both young dads with kids that they adore. Both teachers. And I needed Dr. Perri to look at Jay and then look me in the eye and tell me that it could be fixed. He assured me that all would be well and that he would be perfectly fixed up really soon. That may have saved my life. That plus all of the FB prayers and posts and messages and texts.

At some point in the evening Jay decided to stop pretending to sleep to complain about the Dobhoff tube.

"There's @#$% in my nose."

We told him that he had to have it because he wasn't eating and taking his medication, at which point he agreed to eat something. Had Dan not come by with groceries, all we would have had to offer would have been cold chicken fried steak and mashed potatoes. But I went rifling through those grocery bags and found bananas. Beautiful. Jay agreed to eat one and then ignored us again. After that he started to pull the tube out. We stopped him, but he had pulled out a significant amount. So much so that he had to be re-X-rayed to see where the tube was.

Other things he said to me at that point included, "Shut up," "Get out of my face," and "Go away." Strangely, none of them included, "Come hop in the bed with me." That was the first time I really felt like I might get Jay back.

He seemed to understand at that point that the only way things were going to go his way was if he ate and took meds. So he did. Then the nurse came to tell us that the doctor wanted to leave the tube in until the morning so that it would be a backup if he started refusing again. Then the nurse called me into the hallway.

"I have a feeling he can hear me, so I didn't want him to hear this. If he pulls the tube all the way out, the doctor isn't going to put it back in."

"Ah," I said. "Understood."

And it wasn't like I let it happen. I literally turned away for a second, and when I turned back I saw a nasty tube laying on his chest.

More bananas. More cereal bars. Lots of water. And finally the request for me to heat up his dinner and feed it to him.

At that point he actually started resting comfortably. He wasn't all tensed up like he had been. He moved his legs around, turned to the side a little bit, and started snoring. I thought there might be hope after all. Dolly showing up to bring me carrot cake and chocolate cake from J. Alexander's didn't hurt either.

The Break (Part 2)

Finally, after what seemed like forever, Dr. Iqbal came in to see Jay. He commented on how beautiful she was, and what a wonderful day it was. He couldn't tell her what was wrong because there was nothing wrong in his world. In fact, he kept repeating over and over that "I'm just messin' around." Dr. Iqbal said that Jay would be having an ultrasound to see if the liver was working properly, and then told me that his ammonia level was normal. That was a real relief after Mr. Foot-in-Mouth Paramedic's inspirational story.

Meanwhile, he kept telling me to look behind the curtain in the room because that's where Joshua and Clare were. Over and over again he insisted that all I had to do was look and they would appear. He was finally transported to ultrasound where I got to see his beautiful new, smooth liver. I was so disappointed that Jay was so delusional because, in his right mind, he would have loved to have seen it too. When the ultrasound room door opened, Jay said, "Hey guys!" I asked him who he was talking to, and he told me that Joshua and Clare had been waiting right outside the door.

Back to the ED we went, and the nurse attempted to give Jay his normal medications. He smelled them, he smiled at them, but he didn't take them. I'm not sure how the nurse and I managed to convince him, but he finally took them. And insisted that he was "just messin' around."

He was transported to a room on 10 South and became absolutely and completely non-compliant. He wouldn't eat, he kept getting up to leave, and he became uncharacteristically and uninhibitedly amorous. Fortunately, that was only with me. I had visions of him trying to get the nurse into the sack with him, but I was the only thing on his mind.

My parents both came to us, but the more people that surrounded Jay, the more agitated he got, and the more often he'd try to stand up and leave. Sometimes I could get him back on the bed by insisting that he was being disrespectful, but that didn't always work. He really wanted to dance, so sometimes I could dance him back to bed. But what we really needed was some Seroquel. And the nurses let me me put my rollaway bed between his bed and the door so I could block him in.

Later in the night, after Jay was horizontal and had stopped trying to get me to be horizontal with him, my friend Dolly came by. Our moms have been friends since the beginning of time, and I used to babysit Dolly. Now she's a Nurse Practitioner and married with two kids of her own. Her appearance was a total surprise, but as soon as I saw her I threw myself on her and sobbed like a baby into her shoulder. I told her how scared I was and she told me that she understood. And she did, because not long ago her husband went into complete renal failure. He recovered quickly, but she understood my abject fear. We talked for a little while. Jay remembered who she was and who her husband was, which made me feel a little bit better. At least his memory wasn't gone. She left with promises to bring dessert the next night and I went to bed.

First I crawled in bed with him (a hospital bed is really too small for that nonsense) and rubbed his head until he went to sleep. Then I got in my own bed and tried to sleep, but Mr. Manic laid awake for most of the night babbling. I would look over occasionally and tell him to close his eyes and be quiet. He would do it for a second and then start yammering again. It was like getting a three-year-old to sleep.

And I thought that was the worst part.

Friday, March 30, 2012

The Break

Monday morning we got up really early. I was worked up about some emails that I needed to write for work, and Jay was done sleeping, so we got up at about 4:30. We were due for labs at 8:00am and Vanderbilt, and when we got there Jay was a little confused. Red flag #1: We were waiting for the lab orders and had been sitting there for about 10 minutes when Jay look at me and said, "What are we waiting for?" I told him we were waiting for lab orders and he said, "Oh. Right."

We got blood drawn and then I took Jay to Noshville for breakfast. Red flag #2: Jay let me pick out his meal. Red flag #3: He kept smiling at everyone around him. Like going out of his way to catch their eyes and smile. If you know Jay, you know that's actually not Jay at all.

We got back to the apartment and I called the Transplant number. It's a 24-hour line that we're supposed to call anytime we have concerns or questions. I left a message and told them that we had forgotten to bring home the anti-fungal powder from the hospital and that we needed a prescription for it, that Jay had a lot of lower extremity edema, and that he was acting weird.

After I left, Jay called his mom. Or tried to. We had asked her to register our car and he wanted to follow up. He kept looking at his phone and looking out the window. He looked like he was trying to call, but then he'd get distracted and look out the window some more. I finally gave him the number and dialed it for him. Red flag #4: At the end of the conversation, Jay said to his mom, "I love you so much, mom. Thank you for everything."

As we were walking out the door to grab some lunch, my phone rang. It was the nurse calling back. She said that she had just gotten his labs back and that some of his numbers (WBC and liver enzymes) had bumped up a bit, and that the doctor might want to see him during the day. Red flag #5: While I was talking to the nurse, Jay reached down and actually smiled while he tried to grab the phone out of my hand. I smacked his arm and he just smiled at me.

Red flag #6: On the way to Puckett's for lunch, Jay kept telling me that I was beautiful, that the world was beautiful, and that he loved me so much. He didn't want to stop holding my hand, and he got on the elevator going up even though we were going down.

Jay only ate a few bites of his lunch and kept saying that he wanted to talk to Joshua. This craziness went on and on until I finally convinced him to lay down and take a nap. During the nap, the nurse called to tell me that Jay had an ultrasound scheduled for 4:30. The phone woke Jay up, too, and again he went with the beautiful stuff. The kicker was when we were watching a video about The Turnip Truck and he started to cry.

"Why are you crying?" I asked.

"I just hope that the hungry people in the Gulch get the food that they need."

"Jay, it's the Gulch. There aren't hungry people there."

"I know, but what if a homeless person rolls through?"

I went to the bathroom and left the door open because I wanted to keep an eye on him at all times. He was just getting more and more bizarre. I looked out into the hallway and saw him put his phone down on the bedroom dresser. He walked by and said, "I just talked to Joshua. He's happy."

"Jay, it's 2:30. Joshua is still in school."

"I know. He's happy."

I called the transplant line immediately and told them that I was bringing him in right now. At least that's what I thought. He had settled in the bed (with no drawers on) and wouldn't get up. I told him that the doctor was waiting to see him at the hospital and he just smiled at me and tried to rub my hair. I tried to put his pants on him, and he and his dead weight just smiled at me. I put his shoes on him and he smiled at me. I told him again to get up. Yes. He smiled at me.

Then I called the paramedics. I've never done that before. I've had dreams in which I've called an ambulance but the ambulance never comes, which doesn't exactly engender a lot of faith in the process. But the dispatcher was amazing, and there were firefighters in my bedroom within 10 minutes. Jay wasn't going to get out of bed for me, but stick 5 hulking paramedics around him and he was going to move one way or another.

I was scared to death that they were going to use more force than he could handle, especially since he was split from side to side. But they were very sweet and gentle. They got him on the stretcher, but he wouldn't let me out of his sight. He rode the whole way down to the lobby and out the door sitting straight up with his arms out in front of him. When we got on the ambulance he informed us that he was then going to open to roof of the ambulance wide open.

I had a nice conversation with the paramedic who rode in back, and was amazed that Jay wasn't in more pain given that he was sitting straight up throughout a bumpy ambulance ride. The only mistake the paramedic made was telling me that his own uncle had had a liver transplant and acted like Jay was acting because of ammonia. When I asked what happened to his uncle he replied, "Oh, um. He was old and probably wasn't a good candidate anyway."


We finally made it to the Emergency Department, and all I could think about was seeing someone who could tell me what was going on.

Thursday, March 29, 2012

What Happened After What Happened Next

Looking back on it, Jay started acting a little funny on Saturday. In fact, on Friday he was already saying that he felt a little "space-y" and that he wasn't really comfortable going home. But everybody shrugged it off as exhaustion and suggested that he just get some good rest.

As soon as we got to my dad's house, Jay went directly to bed. He didn't sleep, but he did rest, and I thought that was great. He made several comments to the effect that he felt like he had no "filter," and he needed me to help him make decisions. He would have me screen emails and texts to make sure they were appropriate, and I received several texts from him during the night on Saturday night. He kept thinking of things he wanted to talk about but was afraid he would forget, so he texted me. I was sleeping in one guest room with the kids while he was in the other guest room, and I didn't have my phone with me, so I didn't think anything of it.

On Sunday morning I went to church with my dad and the kids, but I was a smidgen uneasy about leaving him alone given his own concern about his impaired judgment. I texted him during the service to see if he was OK and he replied that he was "thinking." I sent him a video of the congregation singing the doxology, and when I came home he was watching it and getting teary. I hung with Joshua and Clare for a little while longer and then took them halfway to Jackson to drop them off with Jay's parents who had gone back to Jackson on Saturday night. When I got back to my dad's house, I asked how Jay was. Dad said that he had stuck his head in the room a few times and Jay was awake every time. Thinking.

Jay and I packed our things and went to our temporary apartment. All was well except when we got stopped for having expired tags. But we survived that ordeal with a warning and got settled in. My mom brought over a lasagna and some rolls. Jay and I sat together and ate. We talked a lot about the new perspective we each had as a result of the surgery and shed some tears.

Then we went to bed in our new place. But we only got one night.

Sunday, March 25, 2012


Early Saturday morning two members of the liver team came by. They asked Jay some questions to see how he was feeling about leaving, and he reiterated that he didn't exactly feel up for it. They left and then Jay decided to go shave before Dr. Wright came by.

Do you see where this is going?

Dr. Wright came in with the two doctors who had just been there. When he asked where the patient was, I pointed to the direction of the shaving sounds. Jay's argument was pretty much dead in the water at that point. So he had his last drain tube removed, which wasn't nearly as bad as the first two, and he had his IV removed. And that was it. It was time to go. We did one final med check, I checked on our transplant buddy, and we were out the door.

We went home to my dad's house in time to snuggle with the kids (Jay's parents had brought
them back) before Joshua went to go see Mary Poppins with his friend Amanda. Jay went straight to bed and stayed there, which was good since he had totally overtaxed himself with entertaining visitors the day before.

I snuggled with Clare, and then she and I met Joshua and his people for dinner at Bucca di Beppo while my dad made burgers and beans for the rest of the Bernheisels.

We have so much to be thankful for.