Final Destination

(Cross posted from Gypsyschoolhouse in case anyone missed it over there). 
 
It's been a turbulent few months in the Johnson household, to say the least. We've picked everything up and moved once again, one final time, to Lebanon, Pennsylvania, where the weather is mild, the trees are green, and the dairy is fresh. I won't torture you with the tale of woe concerning the buying of houses, the changing of jobs, the unreliability of moving companies, and so on. I would rather talk about how well the boys are doing, how generous our friends have been, and how we finally feel like we've found our home after nearly eight years of bouncing around, wondering where we were supposed to be.

When we left the ministry in 2006, we felt a bit lost, but we also had a new purpose in getting Christie through nursing school. When she graduated in 2009 we toyed with the idea of traveling, simply to see if there was a place out there that fit our family better than Arkansas. As much as we love the Ozarks, especially Bentonville and Rogers, we felt like we didn't fit in. We had made good friends and found a healthy homeschool community, but we were restless. If you've followed this blog, you know we hit the road in early 2011 to see what the world had to offer.

It brought us first to Harrisburg/Hershey, Pennsylvania where we immediately found friends in the homeschool community, and developed a lasting friendship with the Foley family. We hated to leave, but we felt that our adventure must continue, plus we needed to be closer to Boston. Two years later, we find ourselves back in Pennsylvania, five minutes from the park where we first got to know so many wonderful people, and eight minutes from the Foleys. This also puts us in proximity to a ton of farmer's markets, local dairies, great restaurants, Penn State (where Christie now works full-time and I will eventually have my heart transplant), libraries, shopping, bike trails, parks and so many other great things I can't list them all here.

Not our house - the view from the front porch nearly every day

As soon as we get a few more boxes unpacked, I'll put up pictures of the actual house. We're taking our time because there's a lot of furniture to buy, but one of the first things we did was paint the boy's room. I figured they've barely been able to hang a poster on the wall in years, so even though there are more pressing things to be done, I was anxious to finish this. Here's a small teaser, more to come:

Brennan wanted penguins and Rich wanted turtles, so we're making that work together, sort of...

More than the house, there's a sense of belonging, and permanency that we haven't had in so long that Brennan doesn't even remember it. Now he's immersed in a world of friends, playing, and a place he can call his own. At 8, it's about time.

Brennan with his buddy, Sean

It was clear that we belonged on moving day. Jilted by our movers, nearly 21 different people showed up to help us unload our van, including two neighbors whom we'd never even met!

Kirsten Waldron in typical non-plussed mode. Ron Ratcliffe considers stealing Dave's CD's, and Avery and Kate goof off for the camera.

Kristie Waldron, Stacy Foley, and Jen McCurdy. Triple Trouble.

Jake Waldron mugging.

Kirstin and Kate realize there are more of these shelves than any sensible person could ever use...

Mark is probably sick of Dave's books at this point, but soldiered on valiantly in the 97 degree heat.

The best thing is that we feel like we're finding our feet again as a family. The boys are happier than I've ever seen them. We've spent a lot of time playing games, at home and at the mall where a local bookstore sponsors a game night once a week. The boys even won some prizes there by participating in a Where's Waldo scavenger hunt that spanned the whole Lebanon county area.

Brennan wipes out Kate and the Ratcliffe girls at Snake Oil

Maxim teaching Rick to play Magic: The Gathering

At Infinitos at Rich's early birthday party

Brennan loves Eleminis

Rich killed everyone at Flame Wars

They found Waldo! Rich, Brenna, Kate & Maxim. Brennan won a $50 gift certificate to the game store, and Rich won a basket full of pet goodies for Blitz.

We've spent time in the park, read together at night, had game night, devoured the new season of Master Chef, eaten at our favorite restaurants a few times, and spent time with friends. It's the way life is supposed to be. The Foley's housewarming gift sums it up:

 

It goes to show that life never turns out how you expected. Here we are in Pennsylvania, in a beautiful old house that's a bit like us - a little beat up from the adventure, but still strong at the core. A little older, hopefully a little wiser, certainly richer for the experiences we've had. The hills of Pennsylvania, downtown Little Rock, a ski resort town in northern New Hampshire, a stone's throw from Long Island Sound in Norwalk, Connecticut. The metro area of Springfield, Massachusetts. And all the places we explored in-between. The coal-mine towns of Danville and Sunberry, the Poconos, Dallas, St. Louis, Raliegh North Carolina, the visits to Delaware, Baltimore, NYC, Hartford and of course, our beloved Boston. I am hard pressed to not cheer for the Red Sox and compare all seafood to Boston cuisine. Boston, small and over-crowded, opened its arms to us so many times when we were worried and despairing. Our first experience there involved a woman we'd never met giving us her phone number and address if we needed a place to stay. Boston opened its doors and its heart to us and will forever be "our" city. It's where our kids learned that people are the same, no matter what they look like or what language they speak. It's where they learned to explore food. It's where they rode a subway and a taxi for the first time. It's where we all learned that the world is so much bigger and wondrous than we'd ever thought. The doctors, transplant coordinators, and nurses that held our hands, patiently took our phone calls, and loved and embraced our boys call Boston home. It's because of their concern for us that we are where we need to be now. And of course, the friends and family along the way that have encouraged us so much. The Johnsons, Bostics, Foleys, our incredible cousins, friends like Lisa and Smitty who quietly pray and hope for us. For all this we are truly thankful. 

The fall brings new things - an attempt to cyber-school, new clubs and activities for the boys and our family, new friendships, and inevitably new food. These things that are the essence of life, more so than careers or money. We've believed that for a long time, but were often forced to re-arrange our priorities to get to this place in time. Now, it's time to live. And hopefully to laugh a lot more.

Here, There, & Everywhere

Hello all. Big News here, even for gypsies like us.

We've been semi-settled in Springfield, Mass since about October of last year. We like it here for the most part, but there is very little in the way of homschooling groups. The boys are involved in archery and fencing, but they spend most of their time on Skype with various friends from Pennsylvania, especially The Foleys (whom are featured in nearly every post on this blog starting in March of 2011). But honestly, it hasn't felt like home. Note the lack of blog posts. We've all been a little "blah" about the whole thing, but resolved to staying here because it's close to my doctors in Boston. This has been the goal from the beginning, due simply to the fact that my heart disease is rare and his case of the disease is unique in itself. We found no doctors elsewhere that were as knowledgeable about it than the Boston/Tufts Cardiology group.

At an appointment last Thursday, my cardiologist had a serious conversation with us about the road to a transplant, and several things had changed since our last visit.

Firstly, the team there has discussed the fact that as my heart failure progresses, I'm having little to no trouble because of the HCM. But because of the damage the HCM has done to my heart over the years, I am having very typical heart failure symptoms for someone in need of a transplant. In other words, the HCM aspect of my care isn't nearly as important as it was a year ago, though still an important issue in his care up until a transplant. I've been primarily seeing the transplant doctor at Tufts, while the HCM doctor is only consulted occasionally.

Secondly, the waiting time for people in even worse shape than me has risen dramatically in this region, and at Tufts, over the last six months. Without getting into the gory details, they informed us that people in my condition aren't even getting accepted to move up the list because there are more urgent cases that have been waiting, living in the hospital for almost a year now. Too many sick people, not enough hearts. Check that donor box on your driver's license, people. It's rough out here.

This puts us in a difficult position. We expected a lengthy hospital stay, but not 10-12 months. We live an hour and a half from Tufts, where I would be. It's almost impossible to imagine how that would work, not to mention the expense of the rest of the family travelling back and forth, hotels, food, missed work, etc. Our goal was to get closer to Boston, but honestly, we're as close as we can get before cost of living outpaces nurses salary. We love Boston, LOVE IT. But it's expensive.

We started exploring alternative transplant centers when we got home, looking specifically at Hershey, PA because of Penn State Med Center where Christie took her first travel contract. Again, if you're a regular here, you know we have a special place in our hearts for the Hershey/Harrisburg area because of the great experiences there, and mostly because of the wonderful homeschool group (INCH) and our friends, the Foleys.

Penn State in Hershey has a shorter average waiting time for people in my situation 3-4 months. This is not to say I need to be transplanted soon - I am still a "status II" and have to move up two more rankings on the waiting list to even be considered for a heart. I'm not sick enough yet. But when that time comes, the prospect of living at the hospital for 4 months instead of 12 is very appealing. There is a good transplant team there with a fairly strong background in HCM, according to the HCM patient advocate organization, my doctor at Tufts, and an HCM patient currently living there, whom I was able to track down. It isn't Tufts, the centrifuge of HCM study and treatment in the country, but it's good enough for what I need now. Better to have a good doctor who can get you through a 3-4 month wait, than the best doctor who has to get you through a 10-12 month wait. Plus the longer I'm in that condition, the more danger of problems with other organs.

So by moving to the Hershey area, we gain many things:

1) A shorter wait time once I get sicker
2) A big support system with the homeschool group that we still feel very much a part of
3) Being near our best friends
4) Christie being able to work at the hospital where I'll receive care, which should take the sting out of some medical costs
5) The ability to live within 20-30 minutes of the hospital
6) Closer to Philly, D.C. Baltimore, and North Carolina and Arkansas (just by a few hours) where our families live.
7) A slower paced lifestyle in a quaint little Pennsylvania town chock full of farmer's markets, old bookstores, community theaters, mom and pop businesses, great food...all nestled into the beautiful PA countryside dotted with dairy farms and creameries.
8) Cheaper cost of living, less driving to the doctor, etc.

Christie is assured of several jobs or contracts with a 30 day notice. Our landlord here has agreed to terminate our lease as soon as he finds new tenants. So we're about to enter that chaotic time of trips to PA to house hunt, packing up here, applying for jobs, and trying to replant ourselves. We feel confidant that this will be the last time. We can foresee being completely relocated by the end of May, depending on the lease situation here.

Life is funny. We've had a great time moving around, but the stress of my medical situation has made it difficult. We feel like a huge weight has been lifted from our shoulders in so many ways. It's scary to leave the shelter of Tufts because they have been an oasis for us after so many years of bad medical treatment. But overall this is for the best. At the cost of sounding whiny, we feel like we deserve a break. If there was one thing we could have (besides a cure) in this situation, it would be the go ahead to move back to PA where we have so many friends. We know Arkansas isn't an option because of the medical care, though we truly miss all our friends and family there. Honestly, PA has become our new home in a sense, the place we go for vacation, where we celebrate birthdays, and where we intended to settle post-transplant. We've been dealt a really crappy card of late, and it's like we were just handed an Ace.


You can read the Foley's perspective on this HERE. We're not sure who is more excited.