Ana and Isa’s blog

5/4/08

 

It has been several days since we have written, because the scenery of our drive has been too breathtaking to pull out the computer for blogging. We are so driven to see as much of the country as possible that we are combining our book tour with sightseeing, making for long days and late nights and much God praising, singing and laughter in the car (along with harrassment, nagging, backseat driving and too much profanity).

 

On April 30 we headed north from Virginia Beach toward Baltimore, via the scenic Eastern Virginia Shore highway. It was another 100 mile detour but was well worth it. We stopped at First Landing State Beach which is appropriately named as the beach where John Smith first landed in 1607. The beach was vast and crisp, with a long shoreline littered with homes on the coast and white sand dunes decorated with swaying grasses. We were in a perpetual rush all day, only allowing 20 minutes per stop since we had another 300 miles to travel. We made a detour to Chincoteague and Assateague Island, a national wildlife refuge, where we admired a 19^th century lighthouse, wild ponies, and migrating waterfowl, including a recently hatched baby bald eagle. Apparently ponies were abandoned by early Spanish explorers in the 1600’s and became wild. How amazing it was to see horses running freely in the marshes as we drove by.  The entire Eastern Virginia coast is known for its Native American history, its seafaring settlers and ranching settlements, and it’s prosperous marine industry. Our detour took us briefly into Delaware, where we passed quaint farmhouses and silos, charming colonial brick homes, sprawling lawns and long driveways hosting GMC pick-up trucks, and ranches dotted with cattle and horses. Back in Maryland, we rushed toward our Baltimore destination where we had a 7:00 pm booksigning. We sweat some bullets trying tomake it on time since we entered the metropolitan area of Baltimore just in time for rush hour and traffic from an Orioles baseball game. Isa changed into a nice outfit and put her make up on as I drove. At a red light, we pulled a “Chinese firedrill” and switched places so that I could prep for the signing. We had no time for dinner and made it to the  Baltimore Barnes & Nobles at 6:30 pm. It was in the heart of downtown, on the harbor, and parking wasn’t cheap. The massive bookstore was in a former power plant- it was 3 stories high and as broad as a supermarket.

 

Our booksignings so far have been so successful, that we wondered what it would be like to have one go bust. Well we had our first official failure of a booksigning, with the exception of the three gracious souls that showed up. We didn’t even bother giving our talk and reading. We realize that disappointment and failure is good for the ego- it’s humbling. However, as always, quality is more important than quantity and we spent the time chatting with the genetic counseling student, transplant outreach coordinator and CF/lung transplant recipient that did show up. It was wonderful to have one-on-one time with each of them and to learn about their lives in this area. Apparently the Univ. of Maryland Genetic Counseling grad school program had their students read our book as part of their curriculum and that inspired this student to come to our signing. She took a keen interest in CF and hopes to dedicate her career to it. We met a man named John who was 9 years post lung transplant and in the midst of adopting a child. How inspiring! And the community outreach coordinator from Maryland’s Transplant /Donation awareness organization came and displayed materials for passersby. Fortunately, the events coordinator at Barnes and Noble was understanding about the poor attendance, stating that this particular store had a hard time attracting customers due to its location and parking. We spoke for a long time about his interest in writing , academia and archeology. He gave us advice on places to eat the best crab cakes, our main wish for Baltimore. After the signing, we walked around the harbor looking for crabcakes but all restaurants were closed at 9:00 pm. Since we were staying with our friend Lorma that night we rushed to her home and skipped dinner. As Isa drove the 20 miles to Lorma’s house, I fed her granola bars and cold soup from our previous day’s crockpot cooking, trying to fill our stomachs before arriving at 10:30 at Lorma’s home. So much for Maryland crabcakes!

 

We spent the following morning visiting with Lorma and her mother. Lorma received a heart-lung transplant at Stanford Hospital in 2005, moving all the way to California from Maryland to wait for her transplant. She is now doing great- working part time and volunteering. She is a beautiful, loving, happy spirit. She too, was sick all her life with a congenital heart defect , and truly rejoices in this new life.

 

Eager to sightsee, we departed and headed to Washington DC. Our eating habits on this trip have been suboptimal and we had one thing in mind- a good meal. We went straight to the Smithsonian’s Museum of the American Indian where they have a fabulous cafeteria featuring genuine cuisine of Native American tribes. We pigged out on the Five Region Platter- jicama and pineapple salad from South America, buffalo from the Plains Indians, wildrice, cranberry and watercress salad from the Northern Woodland’s Indians, salmon from the Pacific Northwest tribes and greens from the Southeastern Seminoles. We also indulged in a seville orange salad with hearts of palm and nopales cactus. It was all home cooking, much of the vegetables grown right on the premises on Native American style farms. We swept through the museum, saturating our fatigued eyes and brains with as much native history and culture as possible. One of the exhibits focused on Native peoples today- their demographics, economics, and how many tribes are keeping their heritage alive. In my opinion, these are the forgotten minorities of the USA and we cannot overlook them. We saw Chief Joseph and Geronimo’s original rifles that they used in their battles and saw some of the original broken treaties used by the Bureau of Indian Affairs in the 19^th Century.  The thorough exhibits featured indigineous people from all over the world, not just North America. I highly recommend this museum. Although some people shy away from learning the reality of what our country did to Native people, I believe it is important to appreciate, remember and reflect that the second largest genocide in human history occurred in this country. Yet the native people have shown such resilience.

 

In a surreal daze, we saw the Capital building and the Washington Monument in the distance, amazed that we drove all the way to DC.  In front of the Capitol building was a huge demonstration marking the National Day of Prayer, with religious sentiment blaring out of loudspeakers and large signs protesting the war in Iraq, stating “Stop the dieing soldiers in Iraq.” Maybe if money wasn’t spent in Iraq, our schools would have more money to teach us how to spell.

 

We rushed to our next speaking engagement at INOVA, the largest CF and transplant center in Virginia. We spoke to about 40 parents, CF adults and children. It was well received and an honor to meet other CF adults who were just trying to make it in the world like us. We all shared a similar story. One 11 year old said “You girls are very inspirational.” How precocious and sincere she was! Afterwards there was left over food- scrumptious fruit, pecan pie, cobb salad, bread and drinks- and were were begged to take some home. That was another much needed dinner of veggies and protein. At 9:00 pm, we drove southwest toward Front Royal, the gateway to Shenandoah National Park. We had three large plates of salad and fruit in our laps, eager to devour them once we arrived.

 

It was our first and last night in a Super 8 Motel- the soundproofing was horrible and our room shook when the neighbor’s alarm clock went off at 6 AM. We woke exhausted, concerned that our gruelling schedule was taking a toll. We were sleep deprived and had eaten poorly and the backseat of the car was a disaster. We have officially given up on any possibility of a third passenger as the back seat is loaded to the brink with stuff. Again, we look homeless. But at least if the car broke down we could live in it for several days- food and water included.

 

As soon as we saw the NPS sign showing Shenandoah National Park, our fatigue disappeared and we revved into tourist mode again.  We began a 160 mile driving tour of Shenandoah and the Blue Ridge Parkway. I swore if Isa sang “Take Me Home Country Roads ” one more time I would scream. The scenery made up for it- we saw vast forested mountains, deep valleys of farmland and rivers, and rocky outcrops along Shenandoah National Park’s  105 mile main thoroughfare, Skyline Drive. As usual we were in a rush, stopping at overlooks for quick photos despite Isa’s mouthwatering appetite to hike. We did get in a short hike on the Appalachian trail and then later at Stony Man’s Overlook. I used my crutches up a 1.6 mile loop trail to a rocky overlook since my foot hurt like hell. We rejoiced in being there together, grateful to be on the Appalachian Trail (AT) again since we backpacked it in the Great Smokies with Dad in 2006 . In Stenzel tradition, we called dad from the peak to reminisce and wish he was there. We had a windy picnic of more tuna fish sandwiches, cold crockpot soup and wilted salad in Big Meadow, which offered breathtaking views of grassland, woods and endless sky littered with billowy clouds. Isa hiked to a nearby waterfall while I drove to the nearest bathroom for the usual excrutiatingly painful CF calling. Never a dull moment.

 

We were due in Charlotte that evening to spend the night with Isa’s sister-in-law (Mary) and the timer was ticking. We drove quickly through the Blue Ridge Parkway for only an hour, admiring more breathtaking scenery including blooming dogwood trees that peppered the green hills with white cottonlike flowers. We just didn’t have time to give the Park and its Parkway due justice. But it was still worthwhile to see.

 

It was dinnertime and we adhered to our boycott of fastfood restaurants. Using our GPS and Triple A guide, we found a pizza joint in the town 20 miles ahead and ordered a pizza for 3- for Isa, me and the 300 pound invisible man in the back seat with the prednisone appetite. We picked it up 20 minutes later and quickly consumed the entire thing. Isa fed me and injected me with insulin while I drove. So great to have a personal assistant!  Now that was a dinner! We threw the empty pizza box in the backseat to add to junk piled high enough to soon affect visibility. We arrived late at Mary’s home in Concord Mills, a suburb outside of Charlotte where new developments boast colonial homes for $250,000 and where NASCAR, BBQ and JESUS were big.

The following morning was the Great Strides, a nationwide fundraiser 5K walk benefitting the CF Foundation. We joined Team Breathe Deeply in Gastonia, North Carolina for the event. Mary’s friend, Amanda, who was inspired by our book, organized our team. Isa and I made a short speech prior to the walk for the audience of about 150 people. I was able to join most of the walk on crutches as Isa, Mary, Amanda and her partner, Evan, pushed Isa’s neice, Reese, in her stroller. Afterwards, we sold books and met many wonderful families, including a mother of 10-year old identical twins with CF. It was endearing to be called “sugar” and “mam” in thick Southern accents.  Teams like Hanna’s Hikers and Madison’s Hope were filled with parents and grandparents walking for their kids. What a refreshing feeling to see kids with CF again. Due to cross infection concerns, I have not been around CF kids for years and it was wonderful to see them again- their smiles, wide eyes, precocious awareness and resilience. I missed the years of holding their hands and hugging them at camp back in the day…  Some of the young kids had G-tubes (for tube feedings) and Port-a-caths (for frequent IV infusions) already at their ages, and it reminded us that CF can still hit young even in 2008.

 

We are on day 18 of our road trip and are admittedly tired. We spent yesterday at Isa’s sister-in-law’s home visiting and resting, which was a much needed break for our car and ourselves. We feasted on a lunch of Carolina pulled BBQ pork, hushpuppies and fried okra. We enjoyed playing with 2 year old Reese and watching as she attempted to communicate. She showed us all her dolls, naming each one and attempting to place them on Isa’s head. Her red hair pigtails and doll-like face were absolutely precious. It was most refreshing to take a nap and watch some TV!

 

We departed from Mary’s home on Sunday, May 4 and drove toward Raleigh. Once there, we set up camp at the local LaQuinta Inn and did our chores- sterilizing nebulizers, laundry, making saline for our sinus flushing, and making more bean,veggie and ground turkey stew in our crockpot for future meals. Somehow our $30 a day food budget is working out remarkably well, thanks in part to our generous friends, and conservative food habits (I am so sick of tuna fish sandwiches). Itching to exercise, we found a nearby gym - I lifted weights while Isa swam in what she referred to as a swamp pool. Our bodies have been extremely out of shape with all this driving and it felt great to sweat. I find that VA and NC are extremely spread out – it takes miles of driving to go anywhere- and there are few sidewalks. A local state park boasted its ATV trails and boating docks- but no mention of hiking or biking trails. No wonder there is an obesity epidemic- so much of our exercise habits are the result of the environment where we live and whether or not it fosters exercise. We have rarely seen public transportation, more evidence of the extreme dependency on cars that our urban planners have created. How can we blame people for driving and how can we demand that people be more “green” in such a town?

 

The evening in this Raleigh suburb of Cary, NC is quiet and peaceful- no stores are open and there are few cars on the road. We saw the sun set in the distance as we drove back to LaQuinta Inn, only to enjoy a crock pot stew and boiled macaroni in our hotel room. Nice to be “home.” Tomorrow is another day…

 

Thanks for your interest and patience in this very long posting.

Ana

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