Dear friends,

Thank you for reading our blog again.

Our film trailer was released this month, and after a private screening of the complete film with my parents, my mother declared, “Mami wants to spend more time with you.” So, it was in this vain that my mother was interested in coming to one of our CF education day trips with Ana and me. After all, we were having all the fun, and she wanted to join in and see what we were up to. So, off to America’s heartland we went, to Little Rock, Arkansas, for a lecture on April 2. This was definitely not a place my mother would ever find herself going otherwise.

A few days earlier, Mom flew up from L.A. to spend time with her grandbaby and our brother. On Thursday 3/31/11, we met her at 5am at his home for a quick cab ride to the airport. She was just like us- no make-up, a bit disheveled, dragging an overstuffed suitcase, focusing more on comfort than fashion, and filled with excited energy. As soon as she sat down in her plane seat, she was out cold. Ana and I spoke and argued as we organized our speech and designated who would say what, when.

We had a long layover in Denver, and Ana and I treated ourselves to our habitual travel treat, a caramel apple, while my random mother decided to get her shoes shined. It was an endearing moment. As usual, she started an intimate conversation with the worker, asking about every detail of his life. When she was done, Mom was so excited to see the sparkle on her leather old lady shoes. She remarked on them throughout the ensuing 4 days! A reminder to us that in our lifetime of health struggles, it’s the little things that make our family very, very happy.

We had a nice lunch before boarding the pedal jumper plane for Little Rock. Suddenly, everyone around us was Caucasian and very large. We were heading for the heart of America! Our arrival to Little Rock was greeted with a very cold rain, but that didn’t stop us from getting very excited about being in Arkansas. We drove through the state in 2008 during our book tour, and loved the Ozarks, Eureka Springs, Buffalo River, the Trail of Tears, (NW AR) but didn’t stop in this city. Mom got out of the car in downtown, and said “I can’t believe we are in Little Lock!” Of course, we laughed and made fun of her. Fifty years after arriving in America, she still struggles with ‘R’s…

Now for the best part: Southern food. I emailed our Little Lock native friend Barry Kendall who suggested we visit the informal Flying Fish restaurant in downtown. We easily found it with a long noisy line of people waiting to order. This was a happening place! Mom saved a table. When Ana and I got to the cashier, we went at it: ordering friend oysters for mom, grilled catfish, fried okra, hush puppies, a small salad, gumbo with grits, and finally a full pound of boiled shrimp. We topped it off with key lime pie. All that for $60, and our mouths were watering when we dove in. We ate for a good 2 hours, consuming everything and I mean everything on our overflowing table. Thank God for enzymes! We watched the kids next to us devour a tray of crawfish, leaving a pile of crawfish carcasses on their table. I’d never seen anything like it. Nor did it look appetizing to me… Mom smiled throughout dinner, with a joy and contentment at watching us eat so freely. Even her diet was temporarily on hold. While there was no real meaningful, deep conversation, it was a time when the 3 of us where just so pleased to be in each other’s presence.

We checked into a very simple LaQuinta near the medical center that was $30 a night. I kid you not. Initially, the clerk said the bill was $90, and I swear she meant per night. Mom crashed out on one bed and Ana and I squeezed together on another.

The following day started with Ana barking orders of us to get up and plan the day. First we drove to the Clinton Presidential Library. It is the biggest and baddest thing there is in Little Lock. The new modern building is on the edge of downtown, and the glass and steel structure on the banks of the Arkansas River is supposed to resemble an extension of an old bridge that is being renovated next to the building: hence, Clinton’s metaphor of the “Bridge to the 20th Century.” Mom was so excited to learn about Clinton, and so were we, but just wished Andrew was with us. We joined a tour and visited a replica of the Oval Office as it was during Clinton’s presidency; we saw a long full exhibit of the timeline and events of Clinton’s years; we saw gowns and china that belonged to Hillary; and many childhood and young adult memorabilia of both Bill and Hillary. There was little information on Chelsea. All the exhibits raved about Clinton’s successes; and there was no negative information about some of Bill’s scandals and foreign policy glitches. We walked down memory lane, vaguely remembering some of the events of the 90’s- Bosnia, the Middle East resolutions, the formal end to the Cold War. Overall, it was a very well done museum but I would’ve appreciated more balanced view.

After a long visit to the Museum Store where we emptied our wallets, we drove to a nice neighborhood called Hillcrest where we ate at an upscale Creole restaurant. Mom looked tired but the day was young. She was glowing to just be with us. Ana did most of the talking, as she often does. I like to absorb my surroundings, and soak in just being together. I am a natural observer where it seems Ana likes to discuss social problems and make criticisms. It became clear to me that when we are together, she is still the dominant one.

Anyway, we walked up and down the street, watching the streetcar move slowing up and down the street. We stopped at cute shops and browsed aimlessly. We missed doing this in New Orleans with our buddies Josh and Kelley, and it felt just effortless to join Mom in our mutual joy of shopping.
We had to end the afternoon early and head to the hotel to get ready for our evening meeting. Then we head to the conglomeration of University of Arkansas Medical School (UAMS) and find our way to the Genetic Counseling building. Ana had met Mr. Bruce Haas in 2008 when we both spoke at National Society of Genetic Counselor’s Conference. Bruce was the director of the program here in Little Lock, and Ana reached out to him and he invited us to speak to his students. He ordered a meal of my favorite bar-be-que chicken, pork, beans, coleslaw, and more hushpuppies and fried catfish. As you can tell my main incentive to travel is to EAT.

Our presentation went very well, with the ten or so students and several staff members (including the vice chancellor of the hospital) engaged and asking follow up questions. We appreciated the interest and were honored these caring professional authentically wanted to know the patients’ perspective living with genetic disease. There were only 3 genetic counselors at UAMS and perhaps 2 or 3 out in the other parts of the state; so this state was very underserved with this essential tertiary care. The conference room where we were had a large flat screen TV, and many obstetricians & ultrasonographers around the state performed telemedicine evaluations with the Genetics team at UAMS. Because Arkansas is such a poor state, and this was the only major medical center in the state, many families could not travel to get here. Thank goodness for the excellent technology that saves everyone’s time and money.

We bid our farewells and as we pulled out of the parking lot, Mom said, “Mami was overwhelmed listening to your speech. Let us go and get a drink. Mami can never do such things with your father. So let’s enjoy girls only.” We laughed at the suggestion of our 70+ year old mom who wanted to go bar hopping. Again, thanks to Barry Kendall’s suggestion, we visited the famous Willy D’s Dueling Piano Bar in the middle of the downtown strip. After paying the $5 cover charge, we sat in the corner closest to the doors to avoid the smoke-filled room. Two musicians performed in stage, surrounded by large, happy Caucasians, enjoying their Friday night smoking and drinking. Which one of us didn’t belong?!?! We ordered German pretzels and I enjoyed a pina colada that was far too weak and mom enjoyed a margarita. The music was exceptional- Elton John, Beatles, Elvis Presley- all the classics. Thanks to my lack of smell and healthy lungs, I didn’t really notice the smoke and really enjoyed our time there. However, after we were surrounded by smokers, we got up and left. I pity those young people who so carelessly hurt their lungs. It just saddens me.

As usual, Mom went to sleep right away. Ana and I stayed up checking email and going through our two speeches. This was the first CF Education Day where we were asked to speak twice- once on our family, and once on advice for other families. We stayed up too late.

Early the next morning, we rushed out after a modest breakfast and head to the huge, impressive Arkansas Children’s Hospital. We were greeted with smiles and fanfare by the warm and loving staff of ACH, especially the Respiratory Therapist and Clinic Coordinator, Lauren Willis. She planned an amazing event with a Hawaii theme, including decorations, and all the staff was wearing a Hawaiian shirt. We received plastic leis, and the large room was booming with Hawaiian music. There was a trivia wheel with nice prizes in the corner, at least ten pharmaceutical sponsors, and a large line of tables filled with food. Why wouldn’t a family want to come to this education day?!?! Learning about CF is rather serious and sometimes dry and stressful, so having the levity and joy in the room was a really nice balance.

As families started to arrive, Ana and I stood at our table, passing out books and CFRI material. Families approached us so warmly, with such kindness and eagerness. One mother said, “Y’all don’t need to even speak today- y’all just need to get up there and stand there so we can look at you.” No matter where we visit in the US, it seems young parents are craving to see adults with CF, to find hope and encouragement that their kids will grow up and be happy and successful. Even my mom remembers the first CF adult she met, and it meant so much to her back in the 1970s. The Little Rock parents asked questions even before we started our lecture, like “How old were you when you didn’t feel embarrassed about your CF?” “When did you get Pseudomonas?” “How did you tell your boyfriends about your CF?” This group was dynamic already.

The morning started off with a brief introduction by the team. Then Ana and I gave a talk about our family, with my mother sitting in the corner listening. Amazingly, she doesn’t argue or disagree with anything we say; not even when I complained about how she always used to give us sheets and pajamas as kids which we didn’t like as they were tokens of sickness. She just says, “You give me too much credit.”

Our second talk was called “The Top Ten Things that Gave Us the Power to Fight CF” and we had to rush through that one, since each talk was only 40 minutes. We finished on time, and the families seemed engaged and interested. The audience consisted of parents of all ages- some looked like teenagers. Everyone was encouraged to wear a photo of their child with CF- a great idea, since no CF patients were allowed to attend (cross infection hysteria). I love to ask parents about their kids and watch them glow as they describe them. And to listen to their questions. Inevitably, one parent asked, “Are you Chinese or Japanese?” Of course they also ask, ‘Will your transplanted lungs get CF?”
In 2011, I make a big assumption that most kids with CF are doing well health-wise with all the new treatments. However, speaking to these Arkansonian families, most parents said, “My son/daughter just got out of the hospital” or “My son is in the hospital now.” One mother said her daughter was getting a lobectomy- and when I asked her age, she said, “Three.” I was shocked. Was it distance from the CF Center? Was it the climate/diet/smoking? These families are still suffering plenty by this disease. There is no break. They are worried, anxious and afraid, like my mom was in the 70’s and 80’s. They are overwhelmed and exhausted by the treatments. I feel their pain. We tried to offer comfort and advice. Mom also mingled a bit and spoke to other mothers. There was no transplant center in Arkansas, so the concept of transplant was foreign to these families. I was also amazed to meet about three foster parents taking care of CF kids. Bless their hearts!

We left the event before it was over, so we could enjoy some of the afternoon to see Little Lock. We drove to the Arkansas History Museum, and ran in to beat the clock, entering like Tazmanian Devils, full of excitement, accolades and loud comments. We browsed their exhibits on guns, knives, and the Quapaws, Caddo and Osage American Indians of the past (they have all gone to Oklahoma with the Trail of Tears). With closing time approaching, we left abruptly to make it to the Little Rock Capitol Building Museum- which is where Clinton made his Inaugural Speech in 1992. We enjoyed the collection of First Lady Gowns, looking at the old Legislature and Senate rooms, reading about the role of African Americans and women in Little Rock, and we admired a perplexing exhibit that disclaimed the hillbilly, toothless, woodsmen image of Arkansonians. Unfortunately, we were kicked out at closing time. Outside the mansion, teenagers were gathered in their prom outfits taking pictures this Saturday evening. They all looked so happy and young- and I wondered which one of them would be President some day? The teens head to the massive Peabody Hotel, and we walked down to the Capitol Hotel, which is where Clinton had his Inaugural Party. It was the oldest hotel in Little Lock, and very, very elegant and historic. I miss these buildings in California! If these walls could speak…

We shopped a little again and drove down to the River Market area. I understand this area of downtown used to be run down and Clinton inspired a renovation and clean up. It was beautiful and spotless. We spoke to the guy at the Visitor Information Booth- he was from Boston. He said how cheap it was in Little Lock, and what a nice community it was. I always fantasize about living in places outside of California… there’s quality of life in many other places.

We stopped at a jewelry booth whereby my mom said, “Mami would like to buy some gift for you to commemorate this visit.” I glowed. No matter how old I get, I still love being indulged by my mom! She got me a lovely amber pendant from Poland, and I bought myself matching earrings. Ana got opal earrings and mom got a nice silver cross. Mom struck up a conversation with the seller- he was from Albuquerque and poured out personal information like he just wanted to share. We walked along the river, and stopped to look at the children playing by the slides. There was also a water park, and we spent a good 45 minutes watching toddlers play in the spikes of water. Some cried; some squealed with glee. It was around 80 degrees that day, with temperatures dipping by the evening. We loved to see African American and white children playing together, which is so different from how it was just 50 years ago.

As the sun was setting on this warm evening, we got into the car to site-see as much as possible, so we head across the river to North Little Lock, and to a town called Argenta. There was a quaint downtown with shops and restaurants, including the oldest pharmacy in the country (it had a soda fountain!). There were rows of pink tulips lining the street for the Tulip Festival. We found a lovely restaurant called “Starving Artists Café” where a group of guys in army scrubs sat at the counter. We met the owner from California, and the waitress who was an inspiring actress heading to New York. The food was amazing- mom had lamb, I had fish, and Ana had chicken. I indulged in Apple Brown Betty for dessert; mom had sorbet and Ana had an amazing blueberry cake. The bill was shockingly low for such a nice meal. We were glowing with happiness. We ended the evening with a driving tour in the dark to the famous “Mill”, which was closed, but we enjoyed checking out elegant homes in the outskirts of Little Lock. As usual, mom crashed when we went back to the hotel, and so did I, but Ana stayed up the latest. She has endless energy.

The following Sunday morning, we woke early to stuff our suitcases with souvenirs. We had to fulfill our site-seeing itinerary that Ana had made. We drove to the modern State Capitol building, and took pictures of the impressive life-size statues of the Little Rock Nine- the nine African American students in September, 1957 who conquered racism to enter Central High School, an all-white school. Then we head to Central High School where there is a National Park Visitor Center. We spent a good 2 hours there, soaking up the minute-by-minute details of these brave young students who seemed so much more mature than their years. It was a scary, unimaginable time of hatred and status quo. I cannot imagine what I would’ve done if I was one of those African American kids, or if I was one of the white students there. This was about deep-seated, historical attitudes towards the other race; and the difficulty to change. I salute and commend these brave students, their parents, and the people who supported them. I thanked God I was raised in the era of integration and bussing, and thought of these issues as no big deal. I also know parts of America haven’t changed much, and I am still embarrassed.
After Central High School, we had another item on our itinerary. We drove for about 30 minutes to the outskirts of Little Lock, and head to Pinnacle State Park. It is our ritual to hike everywhere we visit. This time, we were with mom. With our usual time-urgency, Ana and I started to race down a trail. After 10 minutes, our poor mother said, “I’ll go back now and meet you at the car.” Was it something we said??

Then, for just about 15 minutes, Ana and I raced through sycamore and juniper oaks, through a vast green meadow, and up and down hills that overlooked the Arkansas River and various inlets. We expected to see raccoons and hound dogs! On a river near the trail we saw a father and daughter in their boat, fishing. Such a peaceful way to spend a Sunday. We were at the very southern tip of the majestic Ozark Mountains, and oh! how we wished we had more time! This is our playground. The scenery was magnificent on this warm day. After 20 minutes of hiking, we were both sweating profusely, unaccustomed to the humidity. We rushed back to the car, found mom at the gift shop, and raced back to town. We wanted to bring mom to her favorite ‘Oyster Bar’ but it was closed, and we drove around town ineffectively trying to find our last Southern meal in Arkansas. After a quick bite at a pizza place, we rushed off to the airport and bid farewell to lovely Arkansas.

We will never forget this trip with mom. Together we witnessed recent and past history, we connected with warm, lovely people, we appreciated a little nature, and we enjoyed Southern food gluttony. Mom had such a great time, and was so happy to see another part of America. Over and over, we kept saying together, “Mama to iishou wa iiine,” which means, ‘isn’t it wonderful to be together with Mom.” That is all we can feel. Our family isn’t perfect but I treasure that knowing that we might not be together has taught us to really cherish when we are. It’s a gift in our relationship.

I have immense gratitude to the sponsors and hosts in Arkansas who made this trip possible. And we feel so blessed to have the health to travel like this, while so many others don’t. I don’t know why we’re so lucky.

Thank you for reading our blog! I wish you all health, adventure, and joy in being together.
Love, Isa

Related posts:

• More Travels Tales: Now Where Am I? 11-11-1111/11/11 I’m on another trip. When is it too much? I am healthy, and feel great. I came home, went...