Friday, September 10, 2010

Birthday Party and Sprayground (posting a little late...)

The day before the boys' birthday party, we went up to the Sprayground in Geneva with the Balashes. A good time was had by all! It was so much fun that we went back a week later with the Collins family.






We had multitudes of cupcakes for the birthday party - soccer balls, baseballs and basketballs for Alex, and Transformers candies for Ben...


As well as a number of candy-topped cupcakes.


Michael had fun giving Alex a spin around the backyard in the Gator.


Ally did some driving, too!

Garrison climbed in back for a spin.



Alex found the blowing out of candles process to be traumatic.


Ben did a great job!



Everyone enjoyed their cupcakes...




And both boys received some fantastic gifts.






All in all, it was a great weekend! (Yes, I know, all this happened 2 months ago... I've been busy!)

Thursday, September 2, 2010

Donor Recognition Ceremony Performance at the Transplant Games

Thank you to the Kidney Foundation for providing this video. The picture quality is not the best, but the sound is great! This is my performance of "There You'll Be" at the Donor Recognition Ceremony. I later found out this song was also used on a recent Donate Life float for the Rose Parade. Ben asked to join me on stage, and was so good - even providing some comic relief at the very end! I'm very pleased with how I did - managed to stay on pitch most of the time (although a bit shaky at the end, to be sure). It was an amazing experience, and we've met some remarkable people because of it!

Thursday, August 19, 2010

Welcome, Bam Bam!

For the last couple of weeks Andy, the boys and I have been talking more and more about getting a dog. We planned on being rather picky. We wanted a mixed breed, no older than 2, medium size, and, most of all, good with kids and laid back. Knowing we would have to be pretty particular, we fully anticipated taking a long time to find the right pooch. Tuesday we went to the Chemung Co. SPCA. None of the dogs were right for young children, but the woman there suggested going to the Horseheads Animal Shelter. That's where we found Bam Bam...

Bam Bam is the very definition of a "Heinz 57." There is no telling what breeds he's made up of. There's definitely a herding breed in there (he tails Ben just like a herding dog would). He's not too tall and weighs about 45 pounds. The shelter said he probably has some keeshond in him, but other than the shape of his face and the darkness around his eyes he doesn't look anything like a keeshond to me. He has gorgeous coloring, a nice flat coat, and adorable ears (one that sticks up, one that flops down). And he has the calmest, most laid back temperament of any dog I have ever known. He doesn't jump, rarely barks, and listens well most of the time. And he's so good with the kids. He's still getting used to his new home and doesn't play very much - we're all hoping that is something that changes. He's still a puppy after all -he'll be a year on October 13th. He's a welcome addition to our family (just don't ask the cats!).

Wednesday, August 18, 2010

Seize the Day!

Since 2004, Donate Life America has sponsored a float in the Rose Parade on New Year's Day in Pasadena, California. Hospitals and organ procurement groups from across the United States can sponsor organ donors, who are featured in "floragraphs" on the float. These portraits, made of natural materials per the parade's specifications, adorn the float, while organ and tissue recipients ride and walk around the float. This year's theme is "Seize the Day," and features colorful kites soaring above the float. The floragraphs appear on the tails of the kites.

The Finger Lakes Donor Recovery Network has sponsored a donor from the region for the last several years. Each year at the organizations donor family recognition ceremony, Andy and I have listened as these donor's family members discuss their relative who was selected. It has always been a very touching experience for us, and we had thought how amazing it would be if, years from now, Jake could be honored in such away.

About a month ago, a representative from the FLDRN called to speak with us. When she started talking about the parade, I think my heart skipped a beat. When she told me that Jake had been chosen for the honor this year, I was overcome. I couldn't speak. I just looked at Andy with tears in my eyes, telling Karla, "I can't talk..." To think, our little boy, whose funeral was three years ago tonight, will be honored at a nationally televised event, for giving life when all we saw was death. Andy and I are extremely humbled by this honor - words escape me.

In early December, Jake's floragraph will be shipped to Rochester, where we will meet with FLDRN staff and hospital staff at Strong Memorial to create Jake's floragraph. The photo we've submitted will be transferred onto a piece of wood so that it will essentially be like a "paint by number." We will use natural materials to fill in the floragraph in Jake's likeness. When finished the floragraph will be sent back to Pasadena where it will be placed on the parade.

We will leave for California on Christmas and spend some time with family (Andy's uncle and my aunt) before getting to Pasadena on December 29th. We have a busy schedule once we arrive there. On Wednesday there is the Family Circle Rose Placement, when the roses which have been dedicated to organ donors from across the country are placed on the float. If I understand correctly, Andy and I will be placing roses which have been dedicated by donor families from our region and reading their dedications. On Thursday morning there is a donor family reception, and that evening there is a gala dinner. The float is decorated and judged on Friday, and Saturday morning is the big parade, where we will have grandstand seating. Another fantastic detail in all this? My mother and Andy's mother are traveling to Pasadena on Wednesday before the parade, and will be there to help us with the boys, and Andy's dad and his wife will arrive shortly after and attend the parade with us. Then there's a reception after the parade. We'll head back home on Sunday.

Andy and I are so excited by all the honors that Jake has received after his brief time with us. What makes us even more grateful is knowing that Jake's gift is being well cared for and loved, wrapped up in an amazing little boy in Iowa.

Tuesday, August 17, 2010

Transplant Games 2010: Day Four (and Day Five: the journey home)

Our last full day at the Transplant Games was a hot one - and we (okay, it was really mostly me) had the brilliant idea to go to the zoo in town. It was a fantastic little zoo, but we certainly would have been better off just hanging out at either our hotel or the Scadlocks, doing some swimming and relaxing. Ah well! We did see some neat animals and the kids enjoyed themselves.


Alex and Ben played on the playground before we met up with Beckham and Co.

The kids check out the seals.

Beck relaxes by the lions.

Gwen, Beck and Ben are a bunch of animals.

In the afternoon Alex hung out in the hotel room...

Then Ben and Alex chilled in bed and watched cartoons.


In the early evening we got back together with the Scadlocks. The kids played and then we had a quick dinner near their hotel. Then it was time to head to the closing ceremonies - our last official Transplant Games activity.

I love Gwen's little pigtails!

Talking with Kim at the closing ceremonies. I'm wearing the shawl I received from Threads of Compassion after the donor recognition ceremony. The woman who started the organization is also a donor mom, and she and dozens of others began knitting these shawls. There are now over 100 people in the group and they've made thousands of shawls to hand out to donor family members.

Beck and Alex loved hanging out on this cover for the sound wires. Alex hugged everyone who walked over it when the ceremony was over!

Gwen and Alex gave each other tons of hugs... Of course I couldn't get the actual hug on film...

... Similarly, we tried to get a photo of Beck giving me a kiss. He gave me several, though. It was very, very special for me.

Ben and his friend Joey. Joey attended the games with his grandparents who were also donor parents. They were attending in honor of their daughter, who passed away when she was about 11 and became an organ donor. They were amazing people we met at our hotel on day 2 and saw several times over the course of the games. We will definitely look forward to seeing them again the next time!

After the ceremony we headed back to the Scadlocks hotel for a brief visit and to share birthday cake. As you can see above, Alex and Beck were both excited about having some cake!

Beck also enjoyed playing with the bowls. This is the last shot I have of him from the Games. He was one tired little guy! I'm so impressed by how well he did despite how rarely he meets new people and his age. Andy and I are both incredibly inspired by Beckham and his remarkable family.

Wednesday morning we packed up and headed back to the airport to make our trek home. It proved to be a rather dramatic journey. Although the weather was beautiful in Madison when we arrived at the airport for our flight (scheduled to leave at 11:30), the weather overnight in the region had been very tumultuous. In fact, the downpours and thunderstorms in the Chicago area shut O'Hare down for a period of time earlier in the day, and because our layover was there, the flight kept getting pushed back.

The good news is, we were able to spend a lot of time with other Transplant Games families who were scheduled for the same flight. We reconnected with Joanne, a supporter wife (her husband Jorge is an athlete) and recent donor aunt from Connecticut, who we met on our very first shuttle; talked to Christen, a support person from Team Upstate who enjoyed spending time with the boys on Monday; and met: a kidney recipient from California and his family (his business partner and living donor was there with him!); a recipient who is expecting her first baby in October through a surrogate mother; a donor mom from Florida who emigrated to the US only to lose her only son, who became a multiple organ donor; and a mom and her recipient athlete daughter.. It was great getting to know these other people affected by organ donation!

Our flight from O'Hare to Rochester was scheduled to leave at about 2:50. By the time our plane arrived in Madison, we were two hours behind - effectively disintegrating our nice layover. By the time we finally loaded onto the plane it was probably 1:45. As we got on we immediately realized there was no working air on the plane - it was beyond hot and stuffy. Add that to my terror that we wouldn't make our connecting flight (and I had already been told that we couldn't be confirmed on another flight to Rochester at all that same day, leaving us stranded in Chicago if we didn't make our flight!), and I felt extremely ill the entire flight to O'Hare. And the flight was delayed at take off because one of our fellow passengers, a kidney recipient, cut his arm and had to be bandaged up (badly enough that he would need stitches once he got to O'Hare). It was a nightmare!

We landed and checked the board - it was 2:50, but thankfully our flight had been delayed to 3:10! We ran to catch a shuttle, needing to go from Concourse F to C. We were the last people to get on the shuttle, and we had to book it down to (where else?) the VERY LAST GATE! I swear it was like something out of a movie. We literally were the last to board. We made it though, and I was feeling MUCH better on this flight (which was, thankfully, air conditioned!). Needless to say, I was so relieved when we touched down in Rochester.

Alex was done traveling... This is him pitching a fit in baggage claim, wanting to be anywhere other than stuck in a stroller!

The 2010 Transplant Games were a remarkable experience. I wish I could pay tribute to all the amazing people we met while we were there. Meeting so many grateful recipients, so many donor families who knew our pain, so many thankful supporters - it felt like a homecoming. And of course meeting Beckham. That first hug was everything I imagined it would be. I love him so much... After all, like Kim said, his heart grew in me. It was great to give that boy a hug.

Sunday, August 8, 2010

Transplant Games 2010: Day Three

Our third day in Madison dawned bright and beautiful, and promised to be jam-packed! Well, it didn't disappoint...

After breakfast, we headed over to the Monona Terrace to check out the view and the architecture. We took the above photo of the capital building (Ben loves to identify the building in photos now!). The photo below is taken of our hotel from the Terrace. Our room is four floors from the top, immediately to the left of the part that juts out at the front.


Andy and I in our donor family tee shirts.


While we were on the Terrace, the donor families from Team Philadelphia had just finished doing a butterfly release. Butterflies are one of the symbols chosen by the National Donor Family Council to represent their cause, representing change, hope and new life. We met a lot of great people on the Philly team, and one couple we met gave Ben some of the bubbles they used with the butterfly release. He immediately began blowing bubbles and said, pricelessly, "I'm blowing bubbles up to Jake." One of the most precious moments of the entire games.


Monday afternoon was the Donor Recognition Ceremony, in which I was scheduled to sing "There You'll Be," as recorded by Faith Hill for the movie Pearl Harbor. When I rehearsed it, Ben and Alex joined me on stage. This was not at all distracting, until Alex decided to treat me like a tunnel! Then it was off on two shuttles to get to the track and field events. Beckham was signed up to run the 25 m. at 12:45. I was hoping things would run on time, because the Donor Recognition Ceremony started at 2pm, and I would need time to take those same two shuttles (which don't always run in a timely fashion!) back to the ceremony...

Alex spent some time bonding with Riley over goldfish. A member of Team St. Louis, Riley was the youngest competitor in the Games, and won multiple medals! Unfortunately I didn't get a chance to talk to her parents, because Riley had to get ready to go run in the 25 m. with Beckham!
The boys had fun playing with members of Upstate NY, including Christen (photographed above) and Karen, who helped keep them out of trouble!


Beckham was very tired before his run, and it took him a bit to realize what he was being asked to do. Once he realized where Kim was, he took off and ran his heart out!! Take a look at the video below... Unfortunately about halfway through his run a bunch of people crowded around the race winner, so the video gets a little hectic.



I love this photo of Beck and Kim. He was so worn out, but did such a great job in the end!!!

So then it was time for me to rush off to the ceremony. Andy, the boys and I high-tailed it toward the shuttle stop, because it was already nearly 2pm. Luckily I was able to get a hold of the organizer and she switched me with another woman who was singing later in the program. But as we were standing and waiting, and waiting, and waiting for the shuttle, I began to worry that I wouldn't make it in time. So when a member of Team Upstate came by who had a rental car, I asked if she would run me to the ceremony. Andy, Ben and Alex stayed behind with Karen who helped them get from shuttle to shuttle.

I arrived just before I would have performed, had we not switched the schedule, and ended up sitting way off to one side since the place was packed. I was there in time to hear another performance, and listen to the story of a kidney recipient who has one of the longest lasting transplant organs - 40 years! He was an inspiration to listen to. Then they handed our medals to all the donor families, along with matching pins, representing the gift of life a donor provides. It was at this point that the boys and Karen finally arrived - just before I performed! Ben asked to join me on stage, and was so well behaved while I sang. He stood and held my hand, looking alternately at me and the audience. Then, as we were leaving the stage, he turns, looks at the audience, and says, "Rawr!!" at the top of his voice. Everyone broke out in laughter, myself included, and it helped put everyone at ease.

So then a woman named Lynn Baudo who founded a group called Threads of Compassion spoke. She is a donor mom, and after her son passed away she revisited an old hobby to seek comfort -- knitting. Many others joined her. Some time later, she saw a donor presented with a "prayer shawl" at a ceremony, and Threads of Compassion began. Lynn's group grew to well over 100 members, and they came to the Donor Recognition Ceremony with over 900 shawls to hand out to the donor families who attended the ceremony.

I got to scoop Beck after the ceremony, when he attempted to take off. By making him into an airplane, he didn't complain too much!


The four of us went to dinner at a microbrew called Great Dane, just a few blocks away from the hotel. It was a GREAT meal, and very reasonable. We were surrounded by other Games participants (mostly from Team Philly - they were EVERYWHERE!). Several people came over and spoke to us. I wish I could remember all the amazing conversations we had over the course of the Games! We also got to speak to another one of the performers from the ceremony, Jay, whose father was a donor. He wrote an amazing song, which I will post the lyrics to in another entry.

After dinner we headed over to the basketball courts, where there were several 3 on 3 games going simultaneously. To be honest, we spent more time watching the kids play and speaking with other people than watching the games! It was nice to spend some more time with the Scadlocks, too, who we left after the ceremony. Ben got to meet Team Philly's "Heart Man" (above)...

Alex and Beck shared some snacks (I just missed getting a photo of Beckham handing a chip to Alex!)...

And at the end of the day, when we headed home, Alex was exhausted, and passed out on the shuttle back to the hotel. When the day came to a close, it meant only one more full day left before we would have to say good bye to the Games for this year...