Transplant Games 2010: Day One

Our first day at the 2010 Transplant Games in Madison, Wisconsin began VERY early, at my parents' house in North Rose, NY. We got up around 4:15am, dressed ourselves and the boys, and headed to Webster, where my cousin Erin drove us in to Rochester to catch our 7:15 flight to O'Hare. Yes, O'Hare... I was dreading it! The boys, on the other hand, were thrilled.

Ben and his sock minion (created by my friend Amanda - check our her etsy site http://www.etsy.com/shop/ArchiboldSockMinions if you want to order one of your very own - no two are alike!) Arthur are ready to go!

Alex says "Cheese!" whilst drinking on take off.

Ben shows Arthur the view of the clouds. We landed safely in O'Hare, then easily made our connecting flight to Madison (the boys enjoyed watching the planes taking off while we waited). We arrived in Madison around 11:15, took a shuttle to the hotel with a very helpful and friendly driver, and were pleased to be granted early check in at the Hilton Monona Terrace. Our room overlooked the Monona Terrace, designed by Frank Lloyd Wright (but only built 13 years ago!). It was a great room and a remarkable view!

The Monona Terrace was the locale for many of the non-athletic events taking place during the Games, many of them geared for donor families, such as the quilt pinning for the National Donor Quilt and the Donor Recognition Ceremony (coverage in blog entries yet to come!). After freshening up at the hotel, we ran over to the Terrace to get registered and pick up our credentials (lanyards with passes for the shuttles and events), then caught a shuttle to the Coliseum where I was scheduled to rehearse my song for the opening ceremonies. We were all very excited to get our NKF Transplant Games experience underway (although Alex is clearly feeling a little tired)!!


My rehearsal was... an experience. First of all, I sang with a great five piece band from Madison called The Gomers. I get the impression they're usually more of a rock group, but they were fantastic at playing my song, which was a selection from the Broadway musical "Wicked" called "For Good." So I was singing in a venue much larger than I'm accustomed to, with a band I've never performed with, and the sound system was INSANE. It was so loud, and I had a hard time hearing myself. I did adjust, however. My bigger challenge was keeping it together while I sang the song. I have such a strong, personal connection to the piece, and this has only been strengthened since learning that Kim sang the same song to Beckham to soothe him after his transplant. I was unable to finish the song on the first run through; I broke down in tears during the last verse. The second run was better, but I was very concerned about whether or not I could perform the song without completely losing control.

I didn't really have time to think about it, though. After speaking with a woman whose son was also performing at the opening ceremony (she is a liver recipient from Nebraska who competed in the games), Andy, the boys and I headed over to the expo center, where the NKF press room was set up and the Scadlocks were waiting to meet us.

How can I put this first meeting into words? I can't. There is no possible way to describe how it felt to finally see, talk to, hug and kiss this little boy we have absolutely fallen in love with, who carries the heart we have loved so well. As we walked toward the glass-walled room, we could see the Scadlocks - Nate, Kim, Gwen, and, of course, Beckham - and Andy and I were already getting choked up. I walked into the room, said, "Hi, Beckham" (barely - speaking was not very easy), knelt down, and received the most amazing hug EVER.

The above photos were taken by a photographer for the NKF. I love the posed photo of all of us. You can clearly see the personalities of the kids. Gwen is being her adorable, bubbly self; Beckham looks slightly overwhelmed (the experience was huge for a little guy who rarely is able to go anywhere other than the hospital due to his immuno-suppression, which means the only people he sees other than family are doctors and nurses who want to poke, prod and otherwise bother him!); Alex has his smug smile and a bag of Cheez-its (no way I was trying to take that away - he'd never have held still for a photo); and Ben is doing - what else? - the super excited face!! The following photos were snapped by Karen Guarino of the Upstate New York Team (which our family was a part of), who came by and was kind enough to take a bunch of photos with our camera. The boys had a great time playing with Gwen and Beck!






We took some time to talk and then headed down to the tail gating party, where all the teams sit together and then head over to the opening ceremonies. On the way down, Gwen hitched a ride with Ben. I LOVE the look on his face in this photo!!!

The tail gate is a great opportunity for people to mingle and meet each other. It's also a perfect time for people to trade team pins. Each team designs a pin to represent themselves, and then each team member is given a number of these to take and trade with other participants. It creates a great memento from the games. Unfortunately, Andy and I forgot to grab ours before the tail gate, so we didn't get a jump start on that like many others did. We did (with Ben's help) collect quite of a few of the pins over the course of the games. It was nice to chat with a few people and get something to eat (the first time all day I had an appetite!), and Alex snoozed in the stroller (he was exhausted).

A view of half of the crowd at the tail gating party. It was a sea of people!

At the beginning of the opening ceremony. Note Alex is now WIDE AWAKE and refreshed! They handed out the pennants for people to cheer on the teams as they entered the coliseum, one team at a time.


Does that guy on the left side of the photo look familiar? It's Larry Hagman, formerly J.R. on Dallas and Maj. Nelson on I Dream of Jeannie! He's been coming to the Games since the 1996, after receiving a life-saving liver transplant.

About halfway through the ceremony, it was Ben's turn to pass out. He missed my performance, and asked me afterward why I had only rehearsed the song and not actually sang it for a crowd!

The performance went better than I ever dreamed. It was remarkable. I felt completely calm as I walked out on the stage. It was such a surreal feeling. I never thought I would feel so at peace. I was able to sing without completely being overtaken by emotion, and when I finished the entire coliseum gave me a standing ovation, and I walked off the stage into the waiting arms of Alex, the Scadlocks, and Andy (while Ben snoozed on...). The above photos were provided by photographer Robert McGaffin.

Needless to say, we all got a REALLY good night's sleep. If you'd like to see some more about our first day, check out the following video of the story aired by the NBC news in Madison. It includes video of our meeting with the Scadlocks.

2 Families United by One Heart

More updates to come!

Jake's Quilt Square

During the Transplant Games, we will have the opportunity to pin a square on Patches of Live: the National Donor Family Quilt, which commemorates organ donors. In Madison the entire quilt, consisting of over 32 panels, will be on display. Everyone is invited to the Quilt Pinning to see new quilt squares added to the quilt . As each new Quilt patch is “pinned” to the Quilt, donor family members will have an opportunity to share a few words about the meaning of their Quilt patch. Today I finished a patch for Jake...


We sang "Twinkle" to Jake frequently, with Ben's help. Just before we all said good bye to him (not only Andy and I, but a room full of our closest family and friends), we sang this to him, one last time. During his life, we frequently called him our little star, unaware of just what a hero he would become. We are very happy with the end result, and cannot wait to place it on the national quilt.

The countdown is on!

Only 10 days until we arrive in Madison for the Transplant Games! There is no way to describe how exciting, nerve wracking, monumental and thrilling this whole episode in our lives is. Andy and I are a little anxious about the logistic side of things (I haven't flown since May of '01, and Andy since '96 or so, and never with kids!!), but we are so very excited to be taking part in this amazing and emotional event. At the games we'll be able to attend the events themselves, cheering on the Upstate New York team, made up of transplant recipients and living donors from the greater Rochester region, attend donor family seminars, and surround ourselves with the love only those touched by organ donation can truly comprehend. Oh, and did I mention, we are meeting Beckham? YES, we are meeting BECKHAM! Andy and I will be able to meet, and, if we're lucky, even hug, the little man who carries Jake's heart. We will also get to meet Kim, Nate and big sister Gwen, an experience we are immensely looking forward to. I know I already posted about this when it was established that the Kidney Foundation would help the Scadlocks get to the games, but now that it's almost upon us the realization is sinking in. We have been inspired by the Scadlocks strength and amazing love for one another since we first discovered their blog in January of 2008, when Beckham was less than six months old and our own loss was still a fresh wound. They are remarkable people and I cannot wait to share this experience with them.

The first day we are in Madison will prove to be a trying and wonderful one. We arrive around 11am, but cannot check into our room until 3pm (typical). At 2 I have to be at rehearsal for the opening ceremonies, where I can practice with the five piece band I am performing with. Then at 3:30 we will meet the Scadlocks (absolute highlight of the day!). We have to be at the Coliseum at 6 to get ready for the opening ceremonies, which start at 6:30. Phew! What a day! I'm slightly worried about my performance. I heard or read somewhere that there are around 7,000 athletes at the Games - that's to say nothing of donor families, athletes families, press, staff, etc... I've never performed before more than a few hundred people! And to top it all off, they want Beckham to be on stage with me! This is so exciting, but, in the same breath, I'll be having a hard enough time keeping it together even if Beckham isn't standing there with me. Hopefully I'll manage to get through it without totally botching this amazing song.

Sunday, the second day of the games, is Beckham's third birthday! On Monday there is a Donor Recognition Ceremony, for which I was also asked to sing. I chose Faith Hill's "There You'll Be." I am, thankfully, fairly early in the program for this ceremony. At some point while we are there there will also be a quilt pinning ceremony. Andy and I are still trying to design and execute a quilt square in Jake's memory to add to the national quilt. It should prove to be an action packed trip, but luckily we can always go back to the hotel and take a break (there's an indoor pool, so the boys will be in their glory!).

I want to take a moment to thank everyone that has supported us over the last (almost) three years, and especially those that helped with our fund-raising efforts this spring for the trip. We are particularly thankful to the Odessa-Montour Interact Club, which raised $500 to help us with our airfare and expenses. Andy and I are so blessed to have such amazing people in our lives, from our work place, to our friends, and our family. I promise to get lots of photos uploaded upon our return!

Trip to Canada 2010

The four of us went up to White Lake to spend some time with my parents at their camp site last week. A great time was had by all! What a change from last year for Alex, who couldn't even walk at the time. He spent a lot of time running around between my parents' place and the Platts' across the way, playing baseball and soccer (in his own way). He also discovered that he is very capable of swimming underwater (well, going underwater, not so much swimming per-say). He even comes up with a smile on his face. Ben had a great time at the beach and in the pool, using some water wings for the first time and doing great (along with some modified flippers and a kickboard, he was totally outfitted!). Andy and I enjoyed ourselves as well -- he got to go golfing with my dad and a couple buddies, while I went water skiing (for the first time in over 15 years!). I definitely felt that the next day. We also enjoyed some campfires, a boat ride, a surprise birthday party for a friend, great food, and, most of all, fabulous company.

Finally, we have arrived!

Feeding Grandma some gold fish.

Coloring on a rainy day.

Ben and Grandpa get some rest together.

Alex chilling with Grandpa.

Please ignore the beverage - it belongs to Daddy.

Ben peeking out of the pool!

Finally he's willing to jump in again!

Ben waits with me pre-water skiing!

The following is a series of photos of me attempting (and eventually managing) to water ski. Note that that dock in the first photo gets farther and farther away despite the fact that I wasn't staying up for more than a second (if I even made it that far!). Eventually I made a pretty long sweep, before crashing again in the dreaded back bay (it's very shallow and mucky, but thankfully it wasn't so shallow that I ended up touching bottom - I'd have been mortified!!). The last photo in the series is one of that fall. I was so excited that I managed to go so far though - and had the aching muscles the next two days to prove it!

Waiting to go on a boat ride with Billy.

Yes, that's rain at the other end of the lake... and it was coming our way!

Racing the rain back to camp!

The storm coming on our last night at camp. It made for a nice evening indoors.

My "Audition"

Here is the link for the video I used to "audition" to be a performer at the Transplant Games. The man at the Kidney Foundation asked if it was really me singing, which made me laugh. The song is the last one I sang to Jake before sending him on his final journey. I learned recently that this song was already special to Beckham and Kim - she often sang it to him after his surgery when he was battling the many repercussions of his surgery. It perfectly sums up how I feel about everything we've been through. Jake changed our lives for good, and Beckham (and his family) has most certainly changed our lives for good.

http://www.youtube.com/watch?v=xxULKbEN62M

2010 Kidney Foundation Transplant Games

Last fall Andy and I started planning to attend the 2010 Transplant Games in Madison, Wisconsin. With the help of our Donor Family Network, we have registered to attend the games as a donor family and have our plane tickets all paid for! We owe a huge thank you to the Odessa-Montour High School Interact club. The students heard about our trip and asked the adviser if they could help us do some fund raising. They students raised about $500 this spring to help us cover the cost of our tickets and hotel. Andy and I never cease to be impressed by the initiative and compassion of our students.

In April I received information about auditions for anyone who planned on attending the games and interested in performing at either the opening or closing ceremonies. I enlisted the help of my friend David, who did a recording of me singing "For Good," the last song I sang to Jake before he gave his gift of life. Then David took the song and set it to video with an explanation of the song choice and Jake and Beckham's story at the beginning. I uploaded the video to youtube (http://www.youtube.com/watch?v=xxULKbEN62M) and emailed it per audition instructions to the public relations manager at the Kidney Foundation, which puts on the games, and waited to hear. After about a month of waiting I got impatient, and emailed the gentleman at the Kidney Foundation. He told me that they hadn't finalized things yet, but that I was the "overwhelming favorite" and they definitely wanted me to sing at the games! I spoke with him yesterday and he told me they still weren't certain on all the arrangements, but they were leaning heavily toward having me sing at the opening ceremonies. I told him more about Jake and Beckham's story, and when I mentioned that the Scadlocks would like to attend if Beckham is given the okay by his doctors, but that it might be a hardship financially, Bryan indicated that he'd like to talk to Kim and see what it would take to get them to the games. Not only do they want to help ensure that we are able to meet Beckham & Co., but he even mentioned having Beckham on stage while I perform! I cannot even tell people about this development without getting choked up -- not so sure how I'll manage it when the time comes!!!

So last night I called Kim for the first time ever. We've corresponded through Facebook and text messaging, but had never actually spoken. We talked for a couple of minutes and Kim said, "Beckham, can you say 'Hi Holly?'" So Beck got on the phone and said, "Hi Holly" (and later "Hi Handy" - he couldn't quite pronounce "Andy!"). When I said, "Hi Beckham" I could hardly contain the emotion. Kim and I spoke for about an hour and it was simply amazing. There was so much to say. Andy and I are so thankful for this amazing family, and I am so thrilled that we may be able to meet them in less than two months, AND spend Beckham's third birthday with them! Jake has given us such an amazing gift. I feel it's so important to honor him by promoting organ and tissue donation, and this is just another way to get the word out.

I cannot wait to give Beckham a hug and feel that remarkable heart that binds us beating in his chest.