Friday, August 6, 2010

Transplant Games 2010: Day Two

Our second day at the Transplant Games was much more relaxed than the first (thank goodness!). Ben slept like a rock, and Alex did his best to wake him...



Once he got up and around, Ben was ready to go start our day. As you can see above, he managed to collect quite a few pins in his first day at the games. They include Arizona, Philadelphia, Oklahoma, Connecticut, Mo-Kan (Missouri/Kansas), Maryland, Mississippi, Pittsburgh, and our team, Upstate New York.

We ate breakfast in the hotel that morning, and were seated near another donor family. We exchanged some conversation, each talking about our respective sons who were donors. They were from Illinois and their son was in his early twenties when he became a donor several years ago. The mother, father, and sister were in attendance, and the sister brought her daughter (who was adorable!). The mother asked me, "How did you manage to get through that last performance last night?" When I told her I was the woman who performed, she came right over and hugged me. We had a wonderful conversation. Shortly after they left, the waitress came over and told us that the other family had paid for our breakfast (which was by no means inexpensive!). Andy and I were speechless. It was one of many times that I was overcome by emotion during the Games, and extremely touched.


After breakfast, we went over to the building where the games store was located, as well as the press room. We wanted to see what kind of souvenirs were available, as well as stop by the press room to hop on a computer and take a look at the article that was on the Star-Gazette's website. Along the way we talked to many people, many of them transplant recipient athletes and living donor athletes. I was often recognized and many people thanked both Andy and me for sharing our story. Perhaps the most memorable, of the entire Games, for Andy and I, took place while we were outside the Games store. A man from team Hawaii approached and asked Ben if he'd like a team Hawaii pin. I noticed he was a living donor, so I asked him about his donation. He told us he worked at a restaurant, and one of his regular customers needed either a kidney or liver (I can't remember which), so he donated either his kidney or part of his liver. Then Andy told him that I was the woman who sang the previous night.

I will never forget the way this man reacted. His eyes immediately rimmed with tears. He was overcome. He gave me a hug and then took several steps back, hand over his mouth. He was so grateful to us for our decision, and so moved by the story, by our meeting with Beckham, that he was speechless. It was so touching to see the connection we had made with this man, from so far away, who we had never met. That is how things were over and over again, with countless people we encountered. The experience was... Well, there aren't really words for it, honestly.

Sunday was a big day for Jake's heart recipient. Beckham celebrated his 3rd birthday at the Games! In the afternoon, after Alex caught a bit of a nap, the Scadlocks joined us at our hotel. Beckham had conked out in the car, so he napped on the bed for awhile. Then we headed down to the pool. Gwen, Ben, Alex, Andy, Nate and I swam for awhile (Beckham couldn't be convinced to go in!). It was a lot of fun to be able to relax and just hang out, without a chaotic scene all around us. We also met another donor family - John Schleuter and his grandson, Joey. Ben and Joey made a great bond, and they had a lot of fun in the pool together, and enjoyed playing and talking every time we ran into each other after (which happened several times).

Back up in the hotel room, Beck was back to his playful self!

We gave Beckham his birthday gift (and gave a gift to Gwen as well). Gwen got a couple of sock minions made by my friend Amanda, and a couple of Disney princess books. We got Beckham two Hot Wheels (Ben's contribution), a small soccer ball (Alex's contribution), an "I (heart) NY" tee shirt (Kim has always said Beck's heart is from New York!), and a board book version of "On the Day You Were Born," a favorite of ours. Meanwhile, Gwen and Ben had a blast playing together, jumping from bed to bed over the "alligators" (pillows).

Beck and Alex enjoyed checking out the mirror together.

Love those eyes!!

Beckham raided the closet and found my shoes... He loved entertaining himself!

Seeing how amused we all were by Beckham's antics, Ben was not to be outdone... He's wearing my flip flops, and ... socks???

I LOVE this photo! Taken before we headed to dinner, Ben and Gwen were running all over the hotel lobby. Andy told them, "Here's a game!" and said whoever stayed in their own circle the longest would win. It worked... for a few minutes, anyway!!

We went to dinner at an Italian place down the street (Beck had requested pizza for dinner). The kids were pretty good, and we had a great time getting to know each other better. Ben and Gwen enjoyed sitting next to each other... We could be in trouble here!

After dinner we went to the quilt pinning. As I mentioned before on this blog, we made a quilt square for the National Donor Quilt in Jake's honor. We got to take a moment to tell Jake's story (which Andy did), and then I explained the significance behind the square we designed. Finally, we placed the square on an unfinished section of the quilt and pinned it. The square will ultimately be added to a completed section and will travel throughout the United States. In 2012 we'll be able to see it at the next Transplant Games (location TBD).



I love the above photo... Beckham clearly doesn't want to pose for yet another photo with these crazy people he doesn't really know! He was more interested in running around and playing. Can you blame him!?!?


While we were in the quilt pinning, Central NY team member Laura took the boys out in the hallway and let them play. Ben showed her his favorite quilt squares (the ones with tractors, cars, etc. on them!). Then he and Alex wrestled! After that we all went back and had another restful night, gearing up for Day Three, which was definitely one of the more exciting and nerve-wracking days at the Games! Post to follow (eventually).

Reception for Donor Familes at the NKF Transplant Games

The following video is one that Andy took after all the donor families had processed in during the opening ceremony for the Transplant Games. It's only a few seconds long, but you get the idea. The athletes and supporters cheered on the donor families during their entire procession and beyond. It was an amazing feeling to be in the midst of that energy!


2010 Transplant Games Highlight Reel

Here's the highlight video that the NKF produced of the Games. This video was shown at the closing ceremony on the last day of the Games. It's a great overview of the experience, including the procession of teams at the opening ceremonies, many of the athletic events, the National Donor Quilt pinning ceremony, and the Donor Recognition Ceremony. Between two and three minutes into the video, the story of our meeting with the Scadlocks, and my opening ceremony performance, is touched upon.

Thursday, August 5, 2010

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!

Wednesday, July 28, 2010

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.

Wednesday, July 21, 2010

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!

Thursday, July 15, 2010

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.