I shall call the pebble Ted...

Some nights I have a lot to say, some nights I'm tired.  This is one of the latter sort.

I just finished typing out a list of every doctor/provider/hospital/diagnostic clinic that Emily has been to in the last year.  I didn't do this for fun.  Apparently the insurance company thought I needed something to do in my spare time.

My work was made a lot easier by the fact that while I was at church today, my mom (who has been an absolute saint throughout all of this) sat and copied all of this information off of the bills that I had saved in a box.  I was reminded once again how much Emily and I have had to depend on family and friends to get us through this period, and how this dependence has given us a new lesson about God's grace which we have experienced through all of you.

As you know by now, Emily is still on track to come home on the 7th of July.  There are, however, a few things that need to occur between now and then.  I need to hang a new door into our bathroom so that Emily can get a wheelchair in there, and we need to put a ramp on the back of the house so that Emily can get in to begin with.

Tate Hamlet has experience in this area and has agreed to be the acting foreman on the site, but we need hands to dig, carry and nail.  (Oh, and someone to move some plants from one flower bed to another).  I know that I've heard from a few of you, but as a general message, if you'd like to help, we'll be working on it this Saturday starting at about 3 in the afternoon and finishing up Sunday afternoon.  I'll have a cooler full of water and Gatorade.  

While I've been working all of this out, Emily's been at the mall.  That's right, today she spent the afternoon at SouthPoint mall as an outing with her therapy group.  She said she had a veggie wrap at at Great Wraps and all-in-all had never been so happy or grateful to be in a mall in her entire life.  I guess I'll give her that one  :)

G&P

Building things

I have been both frustrated and amazed at Emily's recovery.  In one sense it is miraculous that her body is rebuilding itself and she is growing stronger.  On the other hand, this has been an excruciatingly long miracle.  That tension of blessing and frustration has marked this entire ordeal.  

It's sort of like the old Irish "but still..." as a literary device.  If you've ever heard an Irish person tell a story, you'll immediately know what I'm talking about.  The story in question can be the most heartbreaking tale of woe and loss, and just when you think it couldn't get any worse, you hear the storyteller utter the words "but still" and all of a sudden a bright spot appears.  In condensed version this might sound a bit like (read in an Irish brogue)"Me mother died, and me potato crop failed, but still, those that's living are together now and I'd be lyin' if I said that this sunrise doesn't lift the soul and raise me spirits"  

Yesterday Emily got into her wheelchair, and she and I stopped by the coffee shop downstairs in the hospital, and spent some time outside in the garden.  It was nice to mark all of the progress that she's made with a moment of quiet relaxation, but we couldn't help talking about the kind of changes we'll need to make around the house, and in our lives, when she comes home.  These changes are temporary to be sure, but they're no less real, and no less daunting.

That's the primary reason I'm writing this today.  It looks like we're going to need to build a ramp onto the back deck of our house.  I know how to do this, but there's no way I can haul the lumber and do all the work myself, so I'll need to get a crew together.  I'm putting this up here first because I've had a lot of offers to help with this project, but we only have two more weekends before she comes home, so it's probably time to organize.  I've taken some measurements, and come up with some ideas based on building code, but I guess I could really use someone to lead the effort and figure out how much it's all going to cost, etc.   If you are interested in helping, or organizing the effort, you can e-mail or call me in the next few days and we'll see what we can get together.

Thanks

...and miles to go before I sleep.

It looks like it's official; Emily's discharge date is still planned for July 7th, and while I realize that nothing is ever a done-deal in the hospital until it actually happens we've got pretty good reason to believe that this one will come through.

How can I know this?  Well, Emily's still got her feeding tube, although she's not using it, and after many weeks of asking when it will come out, the doctors at UNC informed her yesterday that she'll have to go back to Duke to have it taken out.  This seems a little ridiculous, but apparently none of the surgeons at UNC will take it out because a surgeon at Duke put it in.  This isn't a basketball thing I assure you.  I understand that it has something to do with liability issues, but, really, we have to go through this yet?  

So her doctors here made an appointment for her to have it taken out at Duke on the 8th, and so that's how I'm so sure we'll be out of here by the 7th.

On one hand it's not a big deal because it poses a moderately low risk of infection, but on the other hand it's also a pain in Emily's butt, err, maybe a pain in her stomach.  It reminds her of just how bad things were, and I'm not sure she's emotionally ready to think back through all of that yet.

A friend's blog post unintentionally gave me some food for thought this week.   Her post title was "On the Willows" and I know she was referring to Godspell, but that psalm reference always haunts me.  It is, of course, a nod to Psalm 137: 

By the rivers of Babylon—
   there we sat down and there we wept
   when we remembered Zion. 
On the willows there
   we hung up our harps. 
For there our captors
   asked us for songs,
and our tormentors asked for mirth, saying,
   ‘Sing us one of the songs of Zion!’ 
How could we sing the Lord’s song

   in a foreign land? 

That last refrain is really what gets me, and what I've been thinking about this week.  This syndrome has literally held Emily captive for the past three months.  In a metaphorical sense I have also often felt a captive to these circumstances.  We have had to hang up so much that we are, and so many things that we have been doing, that we have had to constantly re-negotiate our identities in the face of this thing. 

The writer of the psalm laments that the people of Israel have had to endure captivity, and learn what it means to be God's chosen people who were also mysteriously and inexplicably enslaved to the Babylonian empire.  We have had to consider what it means to be faithful to a gracious and loving God in the face of a mysterious and inexplicable captivity to this illness.  We have had to ask ourselves time and time again how in the world we can sing the Lord's song in this foreign land. 

It has not been easy.  

We are, however, returning from that exile, and Emily makes progress every day.  Her upper body grows stronger, although her legs are taking longer to get the message.  I understand that nerves re-grow themselves at about the rate of a millimeter per day, and if you consider how many millimeters of nerves you have in your legs, it becomes easier to understand why this is taking so long. 

All of these thoughts come back to the issue of the feeding tube.  It's not really hurting anything, but it is a reminder that, while we are returning from exile,  we are not back yet.  In the face of this exile it has been our family and friends that have helped us remember what the Lord's song sounds like, and it has been good for me to keep you all updated through this blog.  These posts will probably become more infrequent over the next few weeks because I will need to spend more hands-on time helping Emily, but I'll try to keep you all as up to date as possible.As always, we love you all and continue to ask for your prayers.

news

Yesterday was our 7th wedding anniversary.  It seems strange to mark milestones like birthdays and anniversaries in the hospital, but we do what we can.  One thing I can do, is try to catch you up on the news with Emily.  Emily hates it when weather forecasters say that the weather is going to be a mixed bag, but that just about sums our situation up.  Sometimes, news isn't good news or bad news however ... it's just news.  

Speaking of standing, Emily was able to stand a bit the other day with the help of a special machine that held her up.  She said it wasn't as bad as she thought it would be, but the ground is much farther away than she remembers.

Emily has been making great progress over the last few weeks.  Her dexterity and strength (especially upper body) continue to improve.  Not only can she brush her own teeth and comb her own hair again, but she can sit by herself on the edge of the exercise benches in the gym for an extended period of time.  She called me just this morning to tell me that she just realized she has the capacity to flex her left calf.  Her restoration has been fairly bilateral, and so I expect the right calf to get on board in the next day or so.  She's almost in a regular wheelchair again (she tried one out for a while today) and she said it's nice to have a little more freedom.

While she was on the phone she also mentioned that the Doctors are considering delaying her discharge to the 7th of July, not because she is doing poorly, but because she is making such strong progress.  Yes I know this seems counter-intuitive, but it appears that the doctors feel like that extra week could be very beneficial to her.  Perhaps they are thinking that instead of discharging her early in a wheelchair they would like to shoot for something a bit more ambitious?

She was a little bummed about the delay, but also happy that the doctors at UNC are really responsive to her individual capacities and needs.  I must say, it's nice to have real doctors again.  The Doctors at Duke were top notch, but while the respiratory therapists and nurses at the previous hospital (Select Specialty) were great, the doctors left something to be desired.  (Apparently all you had to do to be a doctor at Select was wear a white coat and have internet access for WebMD).  We trust that her current therapists and doctors have a real vision of wholeness in view for Emily.

Anyway, that's what's going on these days.  Yesterday she told me her occupational therapist had her trying to type on a computer.  I told her that as soon as she gets that mastered she can take over.  Emily's the real writer in the family.

Grace and peace

naptime

Right now I'm sitting in Emily's room, trying to type as quietly as possible because she's taking a nap.  I hate taking naps, but Emily is a champion napper.  She doesn't have any awards for napping or anything, but if they made such awards she would surely be in the running.

When I arrived at the hospital today, she was just dozing off, and said she was planning on sleeping for a little while.  She told me that she was tired, and that although she feels like she's made a lot of progress this week, she also feels like she may have hit the GBS wall, and now she needs to rest.

She really has made a lot of progress this week.  She's definitely stronger in her upper body than she has been, and she even practiced a few transfers from her wheelchair to the work out benches in the gym.  She still needs a lot of help, but each day she can do more for herself.

We're still looking forward to her possible return home in the next three weeks, and hoping that we'll have the resilience to navigate yet another major transition.  Honestly, I can't wait for her to come home no matter how much extra work that will be for a while.

We'll probably really need all of your help and encouragement through that transition, but we'll  have a better idea of what that help might look like in the next couple of weeks, so I'll keep you up to date.

Tonight we'll be relaxing and having something of a date night, watching a movie and eating some popcorn!

chapel hill ninjas

So, as I was leaving our worship planning meeting at church today, I looked out on the front lawn of the church and I saw a ninja.  I felt reasonably proud of myself, because if you know anything about ninjas (and I'm speaking as an expert here because I've seen a lot of movies with ninjas in them) you're not supposed to be able to see them.  Their main goal in life is to not be seen, and to do nefarious things while not being seen.  

I pointed said ninja out to a few co-workers, and soon, there was a second ninja.  

Speaking again as a ninja expert (see credentials above) I would say that in my professional opinion these were probably not real ninjas, but rather teenage boys engaged in some sort of ill-fated and inevitably regrettable shenanigans.  Anyway, I only mentioned the story about the ninjas because they reminded me that every once in a while you get an unexpected glimpse of the invisible, and sometimes it makes your day.  The "end" of this whole ordeal has been elusive to say the least.  For weeks we had no idea when this might end.  Weeks turned into months, and the months have dragged on.  Emily is about 11 days shy of being in the hospital for 3 months, and the light at the end of the tunnel finally seems like it is moving a bit closer.  Sometimes we feel like we might be catching a glimpse of the restoration to wholeness that we have been praying for.

I'm spending most of my creative energy on sermon writing this week (and thus you get a post about ninjas), but I did want to tell you about some of these glimpses and update you all on Emily's condition.  In a few words, she's doing much better these days.  As much as she wanted to eat real food again, not having eaten it for two and a half months meant that she had a bit of a rough transition back to eating.  Her stomach was giving her some trouble, and if you've ever had a bad stomach ache, you know this meant everything else seemed immeasurably more difficult.   She's overcome that difficulty, and is awaiting the final removal of her feeding tube.

Her tracheostomy is finally out, and mostly healed, which has been a big encouragement to her.  Rehabilitation is slow, but she is making progress.  I joke with her that she spends all day with her personal trainers working out, but she is taking this business of getting better very seriously.  She still can't move anything below her knees, but she's starting to get more feeling back in her feet, so we hope that's a good sign.  She still may need to come home in a wheelchair, so I might need to recruit a team to build a ramp onto the back porch in a few weeks.  The doctors are hoping that she will be discharged sometime before the 28th of June, and we hope that's the case, wheelchair or no wheelchair.

some days it rains

I do not know that this is meteorologically accurate, but when we moved to North Carolina five years ago I recall that it was a particularly rainy fall.  It seemed like every other day there was a torrential downpour, and this climactic condition was exacerbated by the fact that I had to practically walk from one end of Duke's campus to the other to get from class to my car with nothing but a miniature Totes umbrella to shield me from the deluge.

Justin, if you're reading this, I know you'll know what I'm talking about.

In any event, I decided that before the following school year started I would go buy the biggest and most wind resistant umbrella that I could find, and I did just that.  I bought what I believe to be the zenith of years of tireless umbrella engineering.  I take up a fair amount of space in this world, and there's nothing more annoying than an umbrella that almost covers you - the sort where you arrive at your destination and your body is dry but your left arm is soaking wet.  My umbrella, however, does not have this problem.  When you open it it's roughly the size of South Korea, and so it shelters me quite well.  As it turns out, however, it hardly rained at all for the next two years after I bought it, but I am a patient man and I knew that my umbrella's time would come.  And so it did - today.

It has been absolutely pouring all day, and so today as I waited for the bus to take me from church to the hospital I was extraordinarily grateful for my huge umbrella.  It would be too easy  to allegorize this whole GBS nightmare as the rain, and God and our family and friends as the umbrella, so I'll refrain.  I will say, however, that it reminded me once again to be grateful for small blessings in the face of adversity - a lesson I have learned all too well in the last few months.  

Some days are easier than others.  Since we've moved to UNC Emily has really been enjoying rehab (well, as much as one enjoys that sort of thing).  She has grown stronger each day, but there are still days that are hard.  Today the doctors said that they may discharge her in a wheelchair, and that she would need to continue to learn to walk in outpatient rehab.  She was a little discouraged by the thought that she might not walk out of here, and so was a little down when I got here.  The rain, it seems, is again an appropriate metaphor for her spirits today.

This thing has certainly had it's ups and downs.  Each day is filled with successes and new challenges, but thinking back through this whole ordeal it is almost amazing to see just how far we've come.  Three weeks ago Emily was on a respirator, not speaking, barely mobile.  Today her therapist got her into a wheelchair and took her downstairs to the coffee shop so that she could get a long awaited iced vanilla latte, and sat with her for a while in the butterfly garden.  

Every once in a while - even on rainy days - the sun breaks through.

a long awaited flower.

If you've ever visited my office, you may have noticed a rather large and ungainly plant sitting on my window sill.  At first glance you may wonder why I would keep such a plant.  It looks like a random collection of stems and leaves with no discernible pattern or structure and nothing that particularly draws attention to itself.  With this last thought in mind, perhaps you could visit my office a hundred times and see this plant without ever really taking notice of it.

The plant is a night blooming cereus, and if you were in my office right now, however, you couldn't help but notice the plant because it is blooming.   This homely and otherwise unremarkable plant produces some of the most beautiful and fragrant flowers I have ever seen - if you've never seen one it will literally take your breath away. 

 

Sorry for the cell phone picture, but it's all that I had with me when I stopped at my office to check on it tonight.  It'll give you some idea of what this massive flower looks like:

Thanks to our friend Flora, Emily has had one of these around ever since college.  I've since started several plants off of the original (which met an untimely end due to an early freeze) and so you might think of this as the grand-daughter of the original.  In all that time it took nearly 5 years for the original plant to bloom, and though we have seen them bloom several times by now five years is a long time to tote an ugly plant around.

I guess seeing this bloom tonight made me think of how much we appreciate things for which we have had to wait a long time.  Emily has been waiting for two and a half months for a Coke and tonight she finally got it.  After a few sips a quizzical look came over her face and she said:

"It tastes different than I remember."

She enjoyed it all the same.  She also enjoyed her first real food since she went into the ICU - chicken parmesan.  From this news you can probably tell that she had her swallow study today, and is officially swallowing like any other normal 29 year old woman.  She was very proud of this fact when she came back from her test, and she was excited to be getting real food and drink again.

Today she saw recreational, occupational, physical, and speech therapists, and by the time I arrived this afternoon she was worn out.  She's growing stronger each day, and is excited about all of the challenges and possibilities of rehab.  She's also looking forward to visitors, so if you happen to be around UNC stop by the 7th floor of the Memorial Hospital and say hi.

As a side note and a proper end to a post about a flower, Emily can also finally have real live flowers again, although she has greatly appreciated all of the creative ways that people have smuggled fake flowers and pictures of flowers into her room.