June was a big month for us, mostly because we took the biggest trip our family has made to date! We went to Florida! It was our first "real" family vacation! We had been thinking of this trip for nearly 1 year, because it revolved around the Bi-Annual Barth Syndrome Foundation Family Conference. We had debated whether or not our family should go, and now that it has come and gone, we are very glad that we attended. Not only did we learn a lot, we made connections with families from all over the world who face the same diagnosis as we do, and that, my friends, is hard to come by, considering there are still only 500 known cases of Barth Syndrome in the whole world.
We found that we are a part of a small, yet very mighty community. The families, friends, and medical professionals involved obviously care for each other and are all passionate about finding treatment for Barth's. It was amazing to learn of the exciting research being done and new information discovered about Barth's, all funded by our little group. From the minute we arrived in Clearwater Beach Florida, I was so impressed by the way the whole conference was handled. The entire week was extremely organized, informative, productive, meaningful, and gracious. Information was presented well; presentations and appointments were timely (and there were 300+ people to shuffle around and navigate); amazing research was conducted on the 40+ affected males in attendance, which is the largest congregation to date; the VIPs (team of doctors that have been treating several boys with Barth's for several years) were there and made plenty of time to meet with us; relationships were established with others affected by Barth Syndrome; we were fed many very nice meals at no cost; and most importantly, we were on a beautiful beach for a week together as a family!
We walked away encouraged with hope that treatment could be discovered in Henry's lifetime, inspired by the older boys and young men who have lived a full life despite the many struggles they have faced with their diagnosis, and strengthened by raw and often difficult-to-hear stories of the extremely brave boys and men who have come and left this world too soon. I left with an even stronger desire to continue on with the Happy Heart Walk, raising more awareness and more money each year to help out in any way that I can.
The beach was fun...the sand was powder soft, the water was bathtub warm. We had really good weather while we were at Clearwater, with the exception of the afternoon that we drove in...we got checked into our room and put our bathing suits on. By the time we got downstairs, dark clouds had filled the sky and wind was blowing so hard. John and Grady braved it out and headed down to the water, while Henry and I tried to take cover under an umbrella. But that didn't even work once the rain started coming down...it was pouring so hard it hurt! I'm sure we looked hilarious. Other than that one thunderstorm, weather at the beach was nice.
One night, as a group we lit luminaries on the beach...one for each of the known males diagnosed with Barth Syndrome. The white lights represented the guys still living today, and the blue lights were lit on behalf of the ones who had gone on before us. The ceremony started with bagpipes, followed by everyone at the conference walking along the perimeter of the luminaries, which were in the shape of the Barth logo, concentric circles with a heart in the middle. It was a special night!
Grady (Henry too) really had no idea what was going on and why we were there. He started to ask more questions about Henry, and why he was "sick" and why he had to still take medicine, because as far as he could see, Henry had been healed. He still randomly prays for Henry, asking God "to fix his heart and make it straight."
The conference ended with a big Superhero Celebration party...everyone dressed up (adults included!), food, games, photo booth, dancing, and a silent auction. A couple of the other kids at the conference made a pretty big impact on Grady and Henry...a little girl named Lily loved on Henry all week long and a boy named Justin is still mentioned at our house at random. Thankful for the friends we made and look forward to seeing them again!
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First of all, when I told Grady that we were going to Disneyland (to avoid confusion we just called it Disneyland the whole time because it didn't make sense that we were going to a different one than most of the people we knew), instead of crying out in excitement, he cried out in frustration because we had to take a plane to get there. Unfortunately, he was apparently traumatized after a very hot plane ride last fall and he wasn't looking forward to doing it again. Needless to say, we got him there...and before we had even walked through the gate into Disney Magic Kingdom, he was laying on the sidewalk moaning about how hot it was...and it was very HOT! and very HUMID! I know you are thinking, "Well, didn't you grow up in OK and live in TX?? Isn't is hot and humid there??" To which I would reply, "Yes, I did. And Yes, it was hot and humid, but not this humid, and I certainly didn't like to spend the day outside on those very hot and humid days :) And I have been completely converted to a Cali girl in that respect, and we just aren't used to it anymore!"
I'm afraid that the heat was almost too much for our highly sensitive 4 1/2 year old, and it definitely shocked him of the energy and excitement I was anticipating from a little boy at Disney. He now says that he has been to "Hot Disneyland" :) We had fun, saw most of the must-sees at Disney, rode some fun rides, and still experienced a little bit of the magic of Disney, despite the heat and despite the logical personality of Grady :); i.e when asked if he wanted to get closer and meet some of the characters we spotted, he replied, "No. They aren't even real."
Highlights were:
- Room service dinner the night we arrived at 10pm EST, in jammies whispering while Henry was sound asleep in the pack-n-play on the other side of the room...Grady LOVED it
- Peter Pan ride
- Purchasing pirate paraphernalia at Pirates of the Caribbean and playing pirates all week
- Watching Grady think that the animals we saw on the Jungle Cruise were real, even though he didn't think Mickey Mouse was "real"
- the Lazy River at our Disney Hotel...I honestly think the boys would have been completely content if we stayed in the pool all day long
- Dancing to "Walk like an Egyptian" as we waited for the lightning to pass at the pool
- Screaming and crying as we ran out of a Bug's Life 3D show
- the Safari ride at Animal Kingdom...the coolest ride, in my opinion
- Grady's first real roller coasters...Runaway Train and the Goofy Coaster...the faces were priceless!
- Fun times in the hotel room watching cartoons and snuggling in bed
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| These infamous fans were lifesavers! Not only on the plane, but the whole week! |
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| End of Disney Day 2 |
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| LOTS of fun in this lazy river! |
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One Saturday in June, we went to Fisherman's Wharf and had a total tourist day with the boys...ate fresh seafood on the sidewalk, saw the sea lions, watched the boats come in, and people watched.
I looked back in the files to find this old pic of G...
on the same bench at the Steam Trains in the same shirt :)
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