Mitochondrial Disease Awareness Week

In case you haven't been on Facebook, and you don't know it's Mitochondrial Disease Awareness Week, I'm here to tell you that it is! To kick the week off, we took our annual trek into South Boston for the MitoAction Energy 5K. This year, we were Team Weid, and we were as motley as ever. One of these years, we will get ourselves organized and maybe even come up with some team t-shirts. And maybe we'll walk next year, too. But for this year, Team Weid was made up mostly of runners.



The kids chose to watch their dads (Garth and Nate) and their Uncle Mike and Melanie instead of participating in the walk.



The kids lost interest quickly and wanted to go back to the playground. They repeatedly asked, "Are they almost done?"



Garth appeared first, and not just first for Team Weid, but first overall!



He was followed by Nate...



Uncle Mike...



and Melanie.



MitoAction always puts out a fantastic day. There was music, ice cream, sandwiches, and arts and crafts for the kids.



One of Ali's favorite things is to have her face painted.





You can always tell that Ali has had too much when she starts to look like this:



But we couldn't leave without one more stop at the playground.



Overall, it was a great day for an even better cause. Please support all those affected by mitochondrial disease by taking a minute to learn more about it by visiting either www.mitoaction.org or www.umdf.org. I will update again tomorrow, hopefully from home as Ali has a GI appointment after a somewhat difficult GI kind of week.

End of Summer and Back to School!

Okay, I'm going to try my hand at using Blogger again so that I can include more pictures. It's been a busy and FUN summer out here in north central MA. The girls spent a lot of time enjoying their new pool...





And enjoying the beach.









We also celebrated birthdays with a pool party for family...

And a pool party for friends.



We "celebrated" our first sleep study...



And the first day of school.









Overall, Ali is doing well, though school-related fatigue seems to be particularly rough this year. By the time that Ali gets home from school, she is just done. She can't complete tasks that she has previously mastered (like writing her name) and doesn't even want to feed herself. She's going to bed at 7pm and is asleep within 5 minutes of her head hitting the pillow. She has her sleep study follow-up on Thursday with pulmonary, which should be interesting.

Maya is loving 3rd grade. She's at a new school this year and thinks she is all that. It's amazing to me how much she has grown up. In spite of everything (or because of everything), we continue to be so incredibly lucky.

And a HUGE thank you to G-Pa for taking such great birthday party pictures!

Marathon Weekend - Day One!

After months of training, it was hard to believe it was finally here - the 115th running of the Boston Marathon, which Garth was running as part of the Children's Hospital Miles for Miracles Team in honor of our two girls, Maya and Ali. We kicked the weekend off with the pre-race reception at the Westin Copley, but not before hitting the Hynes Convention Center for number pick-up and the race expo.



It was insane. While we managed to find a parking garage that still had available slots, we nonetheless had to drive around for close to forty-five minutes looking for a parking space. And then we had to walk for another fifteen mintes before officially arriving at the Hynes. As frustrating as it was, the energy in the air was palpable which made things not so bad!

We found the place for number pick-up, and Garth headed straight to the end of the line.





His official number was 22,544, which Ali proudly displayed for him.



And of course we had to get the requisite pic of Garth and the girls in front of a "Boston Marathon 2011" banner.



We did hit the expo so Garth could buy an official jacket, but it was so crowded that we just wanted to get out of there. And unfortunately, we had let the cat out of the bag that we were staying at a hotel with a pool, so that was all Ali could focus on. If I had a dime for everytime Ali asked, "Can we go to the pool now?" Well, you know the rest of the saying.

After that, we headed over to the Westin Copley for the Miles for Miracles pre-race reception. Although the girls have participated in MFM in the past, we have never made it in for the festivities. Outside of the reception hall, they had signs set up representing all of the towns/cities the runners would pass through during the marathon. Garth and the girls posed in front of the Wellesley sign.



Children's did a fantastic job. There was an area for the kids to make signs to cheer on the runners, a place to make buttons, and a place to write and hang personal notes to the runners. I thought the food was good, but it wasn't really kid fare. This was a bummer for the girls, but they made do with some fruit, cheese, and crackers. Maya and Ali both took time to write personal notes to Garth.





And then they were able to stick them to a map of the course.



Ali's actually made the Children's Hospital FB page.



There was a professional photographer there taking pics of the kids and runners in front of the "Wall of Inspiration," and then volunteers made the photos into buttons for the kids.



Unfortunately, Ali was falling apart and could only focus on returning to the hotel, so we bolted after the girls had their pins. We missed the slideshow presentation, but there was no way that she would have made it through. So after another fifteen minute walk and $35 in parking fees, we were off to check in at the Doubletree Suites in Waltham, which would be our home away from home for the weekend.



We were lucky enough to not only have the girls' grandparents with us for the weekend, but we were also joined by our dear friends the Wilders, as well as Garth's sister and her family. After meeting up with the rest of the crew, we quickly changed into bathingsuits and headed down to the pool.













The pool was great for tiring the kids out. The kids visited with each other for a bit longer while the grown-ups enjoyed a cocktail hour, and then it was bedtime for everyone.

Saying "Goodbye" to GKTW

The next morning, we had to check out of GKTW, figure out what to do about our rental car (we wanted to extend our trip, but we didn't want to have to drive all the way back to the airport), and then check in at Animal Kingdom Lodge for our final night in Florida. Checking out was awful. I cried like a baby. It was so hard knowing that this place existed and that while we were able to spend such an icredible week there, we would never be able to go back as actual guests, only as visitors.

Now on to the rental car fiasco. Stupidly I thought we'd be able to simply call up Avis and say, "Well hello there! We'd like to keep our car for an extra night," and have it not be a problem. But as they say, nothing in life is that simple. The problem was that we needed a new contract because the car was covered by Make-A-Wish and in order to get a new contract, we would need to show up at an Avis desk in person. We wanted to avoid returning to the airport, and quickly discovered that there was an Avis at one of the hotels near Downtown Disney. Fantastic. For what was so stressful in the beginning, the process was really quite easy, and we were on our way to lunch and shopping.

Once we got to DTD, I headed straight for the Rainforest Cafe to see if we could get a last minute reservation, while the rest of the family went to the Lego Store.









Next, we met at World of Disney for some shopping. I had to take a picture of this since it's Ali's favorite character.



And then it was over to Rainforest Cafe for lunch. I love, love, love their chicken salad sandwiches.



Maya was all excited to pitch pennies at the crocodile, but as you can see, Ali wasn't too sure.





Of course Ali spent the entire meal with her hands over her ears, but the "thunderstorms" here were much tamer than the ones at the RFC we have here at home.

After lunch, it was time to head over to Animal Kingdom Lodge. Because of the cost of flights, our chapter was reluctant to send us over April vacation, but because of our work schedule (and Ali's heat intolerance), it was our last chance to go unless we wanted to wait until the next year. We were able to negotiate with MAW a Monday - Monday (cheaper flights) with us responsible for one night of lodging. Since Ali's original wish was to go to the zoo (and see the "real tree"), it only made sense to spend that night at AKL.

The girls thought it was nice, but they wanted to know when they could go back to GKTW. They were enamored with the full length mirror in the room. Go figure.



The view from our balcony.







It was nice, but the girls were right - it wasn't GKTW.

We hadn't had any rain since we arrived, and it looked like thunder clouds moving in, so we wanted to get to the pool before it started. The life guard made a game of throwing little figurines into the water while the kids searched for them.





We had a dinner reservation that night for Boma, so after an hour, or so, in the pool, we headed back to the room to get ready. Then, we did some exploring before heading to the restaurant.







Despite the fact that we paid $14.00 for a single glass of wine, dinner was incredible. After teaching the book Things Fall Apart for the previous five years, I was thrilled to be able to eat yam foo foo. It was good! After dinner, we took the girls to the playground for a bit.







Then the skies finally opened up and the rains poured down. Garth and I got the girls ready for bed, and G-Ma and G-Pa graciously offered to "babysit" them so that we could go have a drink. Right down the hall from our room was an indoor firepit. We cozied up there with a glass of wine for me and a beer for Garth and decompressed. We did have a good laugh over the fact that they were running the AC so that people could tolerate the heat from the fire. Then, we settled in for our last night in the World.