Hank Meets the Press!

I have been trying to sit down and write for the better part of two months. And tonight is the first time that I feel I can! We are in Dover Delaware, visiting with Jeff’s Grandma Dot, before we head up to NYC for Hank’s pre-op appointment and surgery. Everyone is sleeping and here in the quiet, I can finally think and write. For the longest time it felt like July 20th was so far away…and now it’s almost here!

The last two months have been crazy. End of year school parties and field trips, Hank’s 6-year-old brother Charlie, graduated Kindergarten, Hank turned 9, Jeff’s birthday, Father’s Day, A SF Giants game to celebrate Jeff and Hank's birthdays, fundraisers, swim lessons, Lucy's very first dance recital and I think every boy in Hank’s class had a birthday party in June! By the time July 4th rolled around, we were exhausted!

We had two recent fundraisers: On June 26th, we had a dinner and auction at a local bar. We had a rough start, with the place not set up for us, but our friends all rolled up their sleeves and really got the place put together. The food was great, the auctioneer, even better and I think everyone had a good time. And more importantly, we raised some PRS awareness as well as some good money for Hank.

July 10th was the date for the next fundraiser…just two days prior to our leaving for the East Coast. The days leading up to it were high stress, as I tried to manage swim lessons, day camp, shopping for the trip, making arrangements, packing, etc. Not to mention keeping emotions in check as the reality of the why we were going started to sink in. The organizer of the event, Phyllis Enos, did a remarkable job. She had bounce houses, a BBQ, dunk tank, and about 20 vendors there! It was remarkable!! Not only did she put it all together, she also contacted the news agencies and got them interested.

And so the (mild) media frenzy began and Hank was in the middle of it! He handled it all with a cool, calm and collected manner...so old beyond his years. I, on the other hand was faced with the realization that news cameras were coming into my home. My home that had been turned into "trip Central", meaning the washer and dryer going constantly ....couches draped with clothes that needed to be packed, suitcases out, and utter chaos reigning. And because it all happened so quickly...1:00 phone call for a 3:30 interview...I barely had time to comb my hair before the reporter showed up!

But all went well and we were so pleased with the first story. We had two news stations come out prior to the fundraiser and both were different and equally great! We were also interviewed by the Sacramento Bee and in the Sunday newspaper ran a really good article about Hank, Parry Romberg Syndrome and our quest to raise awareness and search for a cure. It was accompanied by a beautiful photo of Hank, and he was so excited to see himself in the paper.

Here is the first story, which ran Thursday, July 8, 2010 on Fox Channel 40. Reporter, Chris Biele, did an awesome job! Thank you Chris!

The second story was done the next night by Cornell Barnard of News Channel 10. I had even less time to prepare (did I even comb my hair?) but the outcome was really great! They interviewed Hank really well...brought tears to my eyes! I can't seem to get the code on this to work, but will post when I figure it out. Here is the link:

http://www.news10.net/video/default.aspx?bctid=111304901001

A story was also published in the newspaper. It was really well written by a reporter named Miranda Simon. She did an excellent job and the photo of Hank was beautiful. The story ran in the Sunday edition of the Sacramento Bee, so we know a lot of people saw it! Hank is so proud, and yet a little shy about all the attention. But he handles it all with grace and maturity and I am proud of him.
http://www.sacbee.com/2010/07/11/2882462/boy-8-receives-widespread-support.html

Monday, I got an email from Fox News in NYC. They would like to do a story on Hank while we are there. We have plans to meet them Monday and then before Hank's surgery on Tuesday. They might even follow him into surgery. From what I understand, the story will be packaged and then sent to the major affiliates. So it might be shown in LA too! This is very exciting, as it might just be shown nationwide and be just another step forward in raising awareness and perhaps catching the attention of someone who wants to research this disease and search for a cure.

So here we are in Delaware, after spending the last few days in Washington DC. When we planned this trip, Jeff and I talked about coming to see his Grandma in Delaware. After three trips to the east coast we still hadn't had an opportunity to see her. And she had never met Hank, Charlie or Lucy. We wanted to make this trip different for Hank. To make it more than just flying to NY for surgery. Jeff's mom graciously offered to finance the first leg of this trip and here we are! We are so grateful!

We flew out to DC on the red-eye Monday night. Brave or foolish...not sure which we were...but the kids did great! Although I did feel bad for the unfortunate teenager seated next to us when I realized Lucy had her feet all over him as she slept! And then there were the people who brought their CATS with them...causing Jeff to suffer from his allergies, the entire flight. Luckily we didn't figure it out until they walked off the plane with their cat carriers. That cleared up the mystery of the meowing.

We disembarked and headed to the rental car area to pick up our shiny silver minivan! The kids loved it, as they picked their seats. And I have to admit that I thought it was pretty cool, with the way you can use a remote to open the sliding doors, seats seven people and still has room for all the luggage! But it's a minivan...and really not "cool"...but we didn't care as we hit the highway and headed to our hotel in Alexandria, Virginia. After checking in, we grabbed breakfast and hit the room for a 5 hour power nap.

Waking up and feeling a little "off" we took the metro rail into Washington DC and prepared to see some sights. The kids loved the idea of the red double-decker open topped tour bus...in theory anyway. But note to self...kids do not like 2 hour bus rides that are hot and humid, with no food or water and a rainstorm! I, however, was thrilled that we saw all there is to see, from the Ford Theatre to Arlington Cemetery! By now we were pretty tired and headed back to Union Station. We picked up our van, went through the drive thru and enjoyed our fast food meal (although Jeff and I had salads.)

The next day we slept in and the kids just wanted to stay in the room and play with their toys. By 1:00, Jeff was getting a little stir-crazy, so we loaded up the kids for day 2 of our DC tour. Again, on the metro and headed for the Foggy Bottom stop. From there we walked towards the White House. We ended up at the back of the house, the site of many presidential announcements. We took our token photos and moved on to the Treasury Building next door. It is very obvious when you are near the White House, as there are armed guards and secret service agents all around.

We rounded the corner towards the front of the house...the street where you used to be able to stand was barricaded, so we had to continue on...it turned out to be quite a long walk. It was hot...hotter and more humid than the day before and the kids were starting to wilt...but we trudged along and made it to the front of the White House. We were as close as you can get as the average tourist, which is not close at all. In fact it's very far away...which made the White House look tiny...but hey...at least we can say we saw the White House!

Moving on, we headed back to the Visitor's Center to take a bathroom break. Here's a DC travel tip: The bathrooms at the visitor center close at 4pm. And of course it was after 4pm when we got there! So we took a hot dog break instead. And because it was SO hot, the kids had Rocket Pops too! Knowing them, that was probably the highlight of their day! Gotta love kids!

We continued on to the Washington Monument. I have always wanted to see it, but never imagined that I really would. It is awesome! It was quite a moment to stand at the base and look up. The monument is made of some sort of sandstone. It's two different colors, light and dark, because production stopped for about 20 years during the 1800's. When it resumed, they could not match the color even though the used the same quarry. There is your little bit of monument trivia for the day.

I've never studied the layout of the memorials....but if you stand at the Washington Monument and look one direction, you can see the White House...and then if you turn, you can see the Capital, keep turning, and there is the Jackson Memorial, and finally the reflecting pool and Lincoln Memorial beyond. I didn't realize they all lined up!! It's an amazing sight, if you don't expect it. Next stop was the Reflecting Pool, but first we stopped at the World War II Memorial. It was beautiful and overwhelming. Iron wreaths on pillars commemorating the states and territories, the names of the islands and places were battles were fought...homage paid to the fact that it was fought in two oceans and beyond. Really well done. Made me miss my Dad, who has passed away. I know he would have loved it and appreciated such a beautiful tribute.


From there, we continued down the tree lined pathway alongside the Reflecting Pond, on our way to the Lincoln Memorial. Rain. Lots and lots of rain....A downpour, really. And there we were, completely unprepared. We took refuge under a large tree, hiding from the wind and rain behind it's trunk. Each time the rain let up a little we would walk, only to hide under the next tree....and then it was done. Clouds parted, skies cleared up and it was blazing hot again.

We stood at one end of the Reflecting Pool and looked towards the Washington Monument...and there in the pool..you really can see the monument reflected in the water! Beautiful! The Lincoln Memorial was all we thought it would be! Felt like we were in the presence of greatness. On the wall is the Gettysburg Address in it's entirety. It almost seems like a strange monument for such a humble man...but considering the other monuments, it is fitting that Lincoln would have a beautiful monument to honor a man of such greatness! The kids really liked the Lincoln Memorial. I would like to say that it is because they have studied him in school....and for Hank that is true...but it's also because there is a movie where the statue of Lincoln comes alive and takes out the bad guys!

Our last stop was the Vietnam Wall. I think I thought it would be bigger...but then when we got down next to it and walked alongside it, looking at the names...it seemed enormous. To see ALL those names! I was so choked up. It's a very appropriate and beautiful memorial!

By now it was 7:00 and we were all tired. And so with aching feet, we dragged our sweaty selves toward the train station. As we staggered along, the kids whined and complained about how tired they were...and yet we pressed on. Soon they were asking to be carried...and we said no...and we staggered on...until...we saw...a ....Starbucks! Air conditioning, cool drinks and a cookie for the kids! We were saved! A quick bathroom break and we were ready to continue the death march with a slightly better attitude.

We made it back to the hotel with no incidents and prepared to go to dinner with Jeff's cousin, Lia. I'm not going to get into any details...but all I can say is that it is very hard to negotiate the freeways here. They are not clearly marked and it's any one's guess which way to go...which is why we missed dinner and ended up at the McDonald's drive thru. Sad..... But the kids were happy and we just figured it was yet another Gibbs Family Adventure!

The next day we overslept and had to scramble to gather our things to check out of the hotel. We then headed to the Smithsonian. It was so hot out...we were very happy we were going to be inside! First stop was the "Castle". It's the visitors center and also houses some exhibits. The highlight for the kids was the bird eating tarantula. NOT my favorite! So we left and walked down to the Air and Space Museum. It was a boy's dream come true! Jeff and the boys were so excited and Lucy and I had a great time too! Seeing the real lunar landing module and the Wright Brothers "Kitty Hawk" were the highlights for me. Hank loved all the World War II stuff. We all loved how they have planes and space vehicles suspended from the ceiling. Coolest thing ever!

After four hours of exploring the museum, we hit the gift shop for a souvenir and headed for the metro rail. A short time later we were in the rental car (do I have to say "van"?) and headed for Dover! It was a good trip...just two and a half hours away. We stopped and had dinner in Annapolis, before heading on. The kids started to soon get hungry and asked for food. We didn't have any and told them, they would need to wait. One of them piped up, "does Grandma Dot have any food at her house?" Jeff told them "no". Again they asked, "C'mon! Doesn't Grandma Dot have food?" Jeff got a silly look on his face and said, "no Grandma Dot doesn't have food. She doesn't eat." The kids all started yelling that she does to!! To which Jeff replied, "Grandma Dot doesn't have any food because she doesn't eat...she is a mummy!" I almost fell over! He is just so crazy! The kids couldn't believe their ears. "A mummy? She is not!? But Jeff continued with his game and told them that one of them had to sleep with her and they better not lay on her bandages, because she could unravel. Great...now all the kids were freaked out about meeting their Great Grandmother! But I happily went along with it...since Jeff pulls this kind of thing on me, quite often.

Needless to say, they were quite relieved to see Grandma Dot is NOT a mummy, but a perfectly lovely, beautiful, gentle woman who has waited a long time to meet them! So, we made it to Dover, which is where we are now. As I sit here, I can hear the thunder rumble overhead and am thinking maybe I shouldn't be on the computer? The kids are loving it here. They have taken to Grandma Dot as if they see her every day and are asking if they can live here with her.

We're here for another day and a half and then we will head on up to Manhattan. As the days draw closer, I have mixed emotions. I am eager to see Hank's surgeon and see what he thinks. How does Hank look to him? Does he see any atrophy? Has the fat been reabsorbed? What's the prognosis? Questions I need answered. Answers I want to know...or don't want to know...