P is also for Prince William Forest Park

We camped a lot when we lived in DC.  One time, we camped at Prince William Forest Park, a site managed by the National Park Service, and the largest green space in the DC area.  Its 15,000 acres are heavily forested with streams and waterfalls and contain many ways to see the park, including hiking trails, biking paths, and a scenic drive.

Yes, that's a Harry Potter Book we're reading together!

There are a lot of things I remember about that campout.  First, it wouldn't have been a Schwamb family campout without a hike.  This particular trip, we chose a pretty short one just to get out and experience the park a little.

Additionally, the kids took their bikes on this campout, and the park was secluded enough that at ages 9 and 6 we felt comfortable letting the kids ride around on some of the trails and up to the ranger station without us having to be with them.

This was also the big kids' first campout setting their tent up by themselves.

What I remember most about this campout, though, was Lauren.  This was our first campout with her.  She was very mobile but was just starting to think about walking.  We put her down initially to start getting the camp set up, and before we knew it, she was crawling all over.  In the dirt.  She was a hot mess as she crawled all over the site.  Initially, we were concerned about that until we realized we would be fighting a losing battle if we thought we could keep her clean all weekend.  By the end of the weekend, she looked like a refugee, but she had clearly had a great time.

 

J is for Junior Ranger Program

I love visiting National Park sites.  With the 434 parks under the National Park Service, there is something for everyone, whether it's nature or geology or beaches/marine life or history of literally anything American.  And there's sure to be a site to visit within a short drive.  If you have younger kids, though, maybe you feel they don't appreciate these sites the way you do, and you leave more frustrated than fulfilled.  Enter the Junior Ranger program!

Grand Teton National Park

Each park has a booklet (almost all are free) for kids to complete as they move throughout the park.  Most have a combination of games, scavenger hunt, and short answer with instructions on where to go to find the answer.  While grade school-age is the ideal target, most parks require less out of younger kids than older kids and can be adapted down to kindergarten-age with some help from mom or dad or a helpful sibling.  Once complete, they get sworn in as an official Junior Ranger and get a Junior Ranger badge.  A couple of parks we've been to even had special surprises:  One Junior Ranger badge was wooden and smelled like a campfire.  Another gave us the option of a patch instead of a badge.

Petrified Forest National Park

There are two minor downsides to this program.  First, those with younger kids won't get the complete joy of focusing on the park while your child blissfully works on the booklet independently, but likely it's much better than having nothing to do, and, chances are, they'll learn something along the way and may grow to love National Park sites as much as you do.  Second, we've been to a few of the smaller sites that we've actually spent longer there than we needed to because we were working on the booklet.  Still, we're only talking half an hour to an hour longer -- not something exorbitant. Most booklets take about the same amount of time or less than you would want to spend at the park.

Lauren now looks forward to our visits to the National Parks, which is important since my Bucket List includes visiting all 434 sites under the Park Service.  If you're looking for a site, check out my NPS Sites page, which lists all 434.  They're broken down by subject, so you can find something that interests you.  Many also have links to the actual NPS website and will eventually have trip-planning information, so you may want to bookmark it and keep checking back.  Hope you find your park, and I hope your family enjoys the ride!

The End of an Era

Today has been an interesting day for many reasons. Our time in Washington, DC has come to an end. Can you believe it's been over five years since we moved here? That's the longest we've lived anywhere! Consequently, there are a LOT of memories here. As the packers spent their second day at our house, I began reflecting on some of them.

First, I began thinking about all of the history that surrounds us here. I took the opportunity to visit (and drag my family to) all of the Civil War battlefields in the eastern theater -- all within easy driving distance of our house. We walked the same ground many of our ancestors walked. Addison gave a short lecture on a staff ride I attended at Harpers Ferry. Another time, I visited all the battlefields in the second half of the war in a single weekend. Still another time, we spent Thanksgiving Day at Gettysburg. Wow! I get sentimental when I think of those memories!

Second, we are leaving an amazing church family at Fairfax! Everywhere we've been, God has placed us exactly where he wanted us. Going to church at the Fairfax Church of Christ was no different. He showed us for the first time in our lives that it's okay to let others take care of you; you don't always have to do it yourself, and there's no shame in admitting you need help. I also grew through the worship ministry. I learned what pure unhindered worship is. As a part of that, I learned that I really can sing on a microphone in front of people and that I can lead them to the throne to experience God...and it's an experience like no other.

I also grew my faith here, although it was more like God grabbing me by the collar and dragging me kicking and screaming -- enter Lauren. I had no idea that I could ever make it through everything that little girl has put us through, but I have -- many times while being spiritually carried. I came to realize in no uncertain terms that prayer works. If you don't believe me, watch Lauren's video again here. It's important to note here that we don't always get our best outcome; we get what's best for us in the long run.

Addison and Brennan have really grown up here. Addison has turned into a beautiful young lady that I'm proud of every day. Brennan is still goofy, but he's a great kid that has matured immeasurably over the last year. Many times I find myself amazed that he's only 9. I'm very pleased to say that my relationship with both of them has deepened considerably over the last year. I'm so thankful that I get to be their dad.

So...finally to the point...Today is the one-year anniversary of Lauren's heart transplant. We will be forever grateful for that gift of life! I'm so blessed to get to witness God's mercy and power through this little girl. She has an energy that she's never had before. I've taken to telling people that ask that everything is great except her attitude! But, objectively, that in itself is encouraging: it means that she can get busy being a typical toddler. Now she still has muscular and eating issues that we're working on, but she is a totally new person...and she continues to amaze me. I can't help but smile when I look at her. Or, as Collin Raye said,

"I wish I could save these moments
Put 'em in a jar
I wish I could stop the world from turnin'
Keep things just the way they are
I wish I could shelter you from everything not pure and sweet and good
I know I can't
I know I can't
But I wish I could"

As we prepare to leave DC, it's almost as if we close that chapter in our lives and open a new one. As good as it was, I can't wait to see what the next chapter holds!

Day 156: Another Milestone

Today is Day 156 of Lauren and Cristi's unfortunate incarceration as we've taken to calling it. You may wonder why this particular day would be significant, other than the fact that it's an even (but not round) number. Today marks being in the hospital for one day longer than all of Lauren's previous 20 hospital stays combined. Yes, you read that right: Lauren accumulated 155 days in the hospital in just short of 3 years and 20 stays, and has now been in the hospital waiting on a heart transplant for 156 days -- a combined total of 311 days in 3 years and 5 months. Wow! Thinking about that makes me wonder how long?

On days like this, though, I'm reminded that our deployed troops spend at least 6 months away from their families -- some over a year. That kind of puts it in perspective. Having been deployed twice, though, I can tell you that, no matter how many people you're around, you miss your family. Certainly that's true for my family as every day begins to look like Groundhog Day.

As I feel myself slipping into sadness, though, I'm reminded of a literary classic called Harry Potter and the Prisoner of Azkaban (that I'm reading with the kids for about the fourth time). In that book, Harry encounters dementors -- absolutely horrid creatures that quite literally drain the happiness out of people -- and Harry is afflicted worse than most it seems. Fortunately for Harry, it's possible for practiced wizards to conjure a patronus that fights them off via a complex spell that is sparked by focusing your mind on an extremely happy memory. Fortunately for me, too, I can fight those feelings of despair by focusing on all the good things God has blessed me with. You can see a partial list here. Add to that the successful cath earlier this week and the fact that I get to see Lauren and Cristi regularly (even if not as frequently as I'd like) and you really just can't ask for more under the circumstances. But instead of a complex spell that spawns some powerful vapor-like being, it's the Peace of God that passes all understanding, knowing that it will all be okay, because He promised it would.

Candid Conversations With a Three-Year-Old

Ever wonder what goes through the mind of a three-year-old? Sometimes, when they speak, they make you laugh. Sometimes they make you cry. Sometimes they make you proud. And, sometimes, they make you sigh. We've always known that Lauren understands a lot -- more than most little kids do (or should) at their age. In fact, one thing is abundantly clear: Lauren is not sitting idly by in the hospital wondering why the wall is blue, oblivious to everything. The other day, Cristi had a philosophical conversation with Lauren -- just out of the blue. I thought I'd share it with you.

[One morning in the playroom]

Lauren: Who works in the cath lab?

Cristi: Dr. Hanna. (Lauren's cardiologist)

Lauren: Who else?

Cristi: [Pauses to think]

Lauren: Does Robert's (one of the older boys she knows on the ward) doctor work in the cath lab?

Cristi: No. He works in the operating room.

Lauren: Can he fix my heart?

Cristi: No, but he might help when you get your new, strong heart.

Lauren: Will he put it in my back?

Cristi: No, it will go in the front.

Lauren: Oh. I'll lift up my shirt for him in the operating room!

[An hour or so later, as Cristi is putting Lauren down for her nap]

Lauren: Will you go with me to the operating room?

Cristi: Yes, I'll go all the way to the operating room with you.

Lauren: Good! [Pauses] I'll cooperate! (We tell her she has to cooperate when she goes to the gym, or Mommy will have to leave)

[Later...back in three-year-old land...]
Lauren was pretending to play Rock Band in the playroom. She pretended to turn on the TV, open the X-Box, and put the imaginary disc in. Then she got the drumsticks, sat down, tapped the sticks while saying, "1-2-3", and then proceeded to sing a song: "Merf, Merf, Merf".

Then, Cristi and Lauren were playing Dora Candyland. She got tired of playing with just the two player markers (Lauren, not Cristi!), so she kept making up new players (Tico, Benny, Backpack, etc.). Cristi said she must have had about 10 imaginary players on the board that they were trying to keep track of! Imagine how many times that many players could hit Queen Frostine and have to go back to the beginning! Talk about a never-ending game! Of course, at that age, it's way more about the playing than the winning.

Well, there you have it: A three-year-old's mind at work. One moment, happily pretending that she's a rock star -- another moment, clearly spending significant brain cells on the implications of her "unfortunate incarceration" -- who's involved, how it works, what to expect, whether she'll have to go through it all alone...I'm awe-struck. What an amazing little girl!

Where's That Magic 8-Ball?

It's been a while since I've written, but thankfully, things have been blessedly uneventful. The hospital's had a nasty GI bug going around, so a couple of weeks ago, they took some drastic measures to try to reverse it. They locked down the germ factories previously known as the play room and family lounge, and stationed a large guard at the entrance, turning away all kids and anyone else that breathes funny. Fortunately, as of this writing, they've opened the playroom back up.

Lauren has been healthy through all of this; it's really been great. But while she has been "healthy", there have been some subtle indications that something's just not right. Her resting heart rate has risen since we checked her in 2 months ago. Her pulmonary pressures seem to be creeping up. And, she's coughing more. All of these point toward a gradual onset of heart failure. The doctors have noticed, too, and have begun thinking about how to stay ahead of Lauren, rather than constantly reacting. They've also shared that with us so that we could be prepared, rather than having it sprung on us when it's time.

Lauren is still doing fine. She's in no imminent danger and really nothing to get too concerned about, but some kid ran off with the Magic 8 Ball and hasn't brought it back, so we're left with a few interesting questions but fewer answers: Is her heart, in fact, deteriorating? If so, how fast? Is there anything we can do about it? Will she be able to hold out until we get a heart? Since Lauren's as adept at the unpredictable as Agatha Christie, the doctors decided to do a heart cath -- partially because they like to do them every 3 months on transplant patients and partially to get some more clues to just how well (or lousy) Lauren really is doing.

We got good news. Lauren's heart function is effectively unchanged from December, with one significant difference: Lauren's heart isn't pumping as much blood per beat, but it's beating faster, so it's compensating. So...the doctors are as satisfied as they can be, but they'll certainly keep their eyes on her. Should she start declining, they have a few options. They can, of course, continue fiddling with her heart and diuretic meds. They can also put in a Berlin (mechanical) heart. She can theoretically keep getting up and around with one of those. If breathing becomes more difficult because her heart just can't keep up, they can put her on a ventilator to give her heart a break. Obviously, she couldn't be up and around then.

Lauren's had a fantastic attitude through all of this (except for those I'm-3-years-old-and-I-run-this-place moments). She's learned to ride a tricycle and has enjoyed riding it all over the floor. Check out Cristi's blog for pictures. And, of course, she's charming everyone. Because of that, we're certainly concerned that Lauren's health could decline before a heart became available. I know that God will provide a heart for Lauren on His time. I just continue to pray that Lauren will stay strong until that time comes -- however long that is.

Speaking of that, we did get a bit of good news the other day. Lauren was offered a "back-up heart" (whatever that means; Cristi forgot to ask), but they turned it down due to concerns of infection on the part of the donor. While it wasn't a "real heart" offer, it at least means we're getting high enough on the mythical list to get offered something. After two months and the promise of several more, that's really encouraging.

Many have asked how we're doing. The truth is that, in some ways, it's hard. We don't get to talk every day, and sometimes, the days we do get to, there's not much to talk about, so I feel like I've wasted my opportunity. My trips to Philadelphia seem rushed, like there's just not enough time. I hate that the kids don't get to see Cristi and Lauren regularly. I'm tired of sleeping alone. I worry that Cristi's not eating well or getting enough rest. I worry that Lauren is spending a critical time when she really needs good parenting, getting her way more than she should (i.e., getting spoiled). In other ways, we're doing fine. Our totally unselfish parents are quite literally keeping the household running. We've gotten countless notes and words of encouragement. I don't have to worry about health insurance bills. I do actually get to see Cristi occasionally. If this were a deployment, I wouldn't get to see her for 6+ months. I think what makes this different, though, is that a deployment has a (somewhat) definite end date with little to worry about but enduring. Conversely, we don't know whether this will end tomorrow or next year. Lauren's long-term health is uncertain. But we will make it. Our marriage is incredibly strong. And we do get to talk fairly often. And Lauren will come through transplant splendidly. But some days are just harder than others. Thanks to all for your prayers and words of encouragement. God has blessed us with an incredible circle of support.

Meet Lauren

Lauren is our 2.5-year-old daughter -- our youngest. She has an amazing smile and a captivating personality that's made all the more so because of all of the challenges she's overcome. She has beaten the odds every time, although sometimes not for the better -- like it's very rare in kids under 5 to have walking pneumonia. Lauren just got out of the PICU in Knoxville after fighting it off. It's difficult to capture the magnitude of what she's been through and just how much of a true miracle she really is, but here goes...I apologize if this rambles or meanders.

Lauren was born with a rare heart defect. The doctors told us that she wouldn't survive the delivery, then that she wouldn't survive the first day, then that she would never leave the hospital. As you can see from the picture, you'd never know it from looking at her!

Her left ventricle never formed correctly, so basically it looks and acts like mush. Consequently, the heart doesn't pump blood as efficiently as it should. On top of that, she has pulmonary hypertension (high blood pressure in her pulmonary artery). They believe this is partially due to the left ventricle not pumping as well as it should causing blood to back up in the pulmonary artery, and also lung damage caused from being on a ventilator so long when she was born and once when she was very sick.

She's also completely tube-fed. That's a long story, too, but basically it was installed as a kind of side effect from a stomach surgery at 10 days of life. She had trouble eating and getting enough food, so they left it in. Then her cardiologist in Philadelphia (one of the leading doctors in the US in his field) decided to make her exclusively tube-fed to prevent further damage to the lungs and allow them to "grow new lung" while she's small and her body will do that. She's been that way for 2 years. It's been very hard at times, especially now that she's a toddler.

Lauren is noticeably delayed in motor skills, as well. She learned to sit up and roll over quite late and didn't learn to walk until she was about 2. She can also climb up the ladder at the playground and go down the slide by herself. Those feats are all pretty amazing, though. The doctors and therapists are surprised that she's as capable as she is. She has extremely low muscle tone and her muscles aren't formed quite right. Conequently, she can't jump -- at all -- and is very unsteady on her feet and clumsy, resulting in 3 broken arms in 4 months. So, we also have specialists evaluating her for possible genetic or mitochondrial disorders that could help explain it (but may or may not be treatable). We're also having tests run to see if there's a bone problem.

On top of all of this (and perhaps to a certain extent because of it), she has a tendency to get sick easily -- and frequently ends up in the hospital. Not that she has a compromised immune system -- just that she doesn't have the fighting power that most of us have. She does have an amazing resilience and personality, though. She charms everyone she comes in contact with. As an example, her old pediatrician (who was with her since Day 2) has now become a family friend even though she's moved away. She's even convinced doctors that she really wasn't sick from her cuteness -- sometimes with the result of winding up more sick later.

She bounces back or comes through challenges very well, though. She wasn't supposed to survive birth. She wasn't supposed to survive stomach surgery at 10 days of life. She survived two septic shock episodes, including one where her fever rose to about 107 and her blood pressure dropped to about 40/12. Even though frequently requiring hospitalizations for illnesses because she crashes at the onset, she usually recovers within a day or two of being hospitalized.

It seems clear to Cristi and I that we have been eyewitnesses to God's power to work in people's lives. We attribute a large part of Lauren's progress to prayer -- not that we always get what we pray for (we certainly haven't) and not that this life is easy -- but we have learned that if we rely on Him, He will bless us in ways that we don't expect, want, or imagine.

I can't adequately tell you about the miracles this girl has been party to -- both obvious ones and successions of "coincidences" that defy the laws of probability. However, as a small attempt, we participated in a program at church in the spring, called Defining Moments, where people shared stories in dramatic ways of times in their life when they particularly saw God at work. We told Lauren's story (Her pediatrician even came and bawled her eyes out!). It's about 8 minutes long.

You can also keep up with Lauren via her Carepages (http://www.carepages.com/ -- Page name LaurenSchwamb (all one word)). We don't update it often (usually only for bad news), but it gives us a chance to keep all of those that follow Lauren's journey (and there are a lot of them, which has been a very humbling experience for us) up to date on her. You have to register, but it's ONLY so that they can e-mail you when Lauren's page is updated; they won't sell your e-mail or spam you.

I apologize this was long, but it's hard to tell it in less time/space.