Donor Family Events During the Games
Donor family members, living donors and procurement professionals found a wealth of unique programs and activities waiting for them at the US Transplant Games. From Wednesday, August 5th until Sunday, August 9th, the Fawcett Center on the University of Ohio campus became the location for registration, special programs, workshop sessions, and the donor family hospitality room. The remainder of the events were at the Games venues and facilities.
Registration began Wednesday morning, but didn't really get busy until afternoon. National Donor Family Council volunteers were on hand to welcome the participants. Many of the family members of non-living donors and many of the living donors had never been involved in a donor family program, and seemed to be glad to see the warm and smiling greeters. In fact, the National Donor Family Council and all of its worker bees are volunteers. Professional staff and finances for the ceremony and program were provided by the Division of Transplantation of the U.S. Department of Health and Human Services, the National Kidney Foundation, and major groups/agencies in the transplantation field.
The Opening Ceremonies and National Donor Recognition Ceremony were involved and complex enough to make the information at the Orientation really important. Once you got to Ohio Stadium, there were people everywhere! Most of them were wearing interesting clothing and colored tags. It was exciting and reassuring to see a familiar face or medium blue or pink tag, and know you had found the right place to be. At that point, if you had all of your family members, your star (for the Wall of Honor), and an appropriate amount of clothing, you were a success! Everyone was full of emotions, but the emotions were often mixed and somewhat overwhelming. This was an incredibly important "once in a lifetime" way to honor and remember our loved ones, but there was grief and loss too. And, some of us were concerned about how our emotions might express themselves. But, we knew that we were there together, and that the person beside us truly understood how we were feeling; they were feeling it too.
How does one describe being transported to an extraordinary world, one where even the sky seems to be a different color? The donor family members and living donors entered the stadium first. I have been told that the whole stadium was very still as the entry began. As the people in the stands became aware of who they were seeing, the applause began and grew into a standing ovation which continued until the last donor family member, who came from Indiana, entered the stands. I was near the end of the entry group. We remarked that there was a lot of empty space in the stands. From previous experience, I knew the athletes would sit there. We noticed the noise and the color and the applause. Many of us were taking pictures: the stadium scoreboard; the crowd; each other; the athletes lined up behind us; family members and friends walking in with us; really cute little kids; the media; and anything else that caught our fancy.
After being seated, we experienced the moment, each in our own way. My thoughts were with the people around me, thinking that many of them were probably overwhelmed. I was close to be "maxed out" and I had done this before. But it didn't take long to get caught up in the color, the sights, the sounds, and most of all, the extraordinary people who were entering the stadium behind their state name banners and flags, the athletes. Many of the states had a donor family member or living donor carrying the state name. It was very touching to hear how many of the teams had sponsored donor families, allowing them to be able to attend the Games. The thing that got us all, and made many of us cry, was a team carrying in huge signs...signs which bore the beautiful faces of loved ones from their state who had donated after death. That remembrance continues to bring tears to my eyes. Throughout the evening, the donors were honored in word and deed. What love there was.
The National Donor Recognition Ceremony was so very special. Some beautiful words were said. Each living donor and family member of non-living donors was presented with an Hawaiian lei. Each family received a Gift of Life medal for their donor. The presenters collected the stars that honored each donor represented there. Each star had been written on and/or decorated, with something especially related to that donor.
There was a Welcome Party at the end of the ceremonies, with food, entertainment, fun, the macarena (of course) and lots of celebrants. And then there were lots of tired people of all descriptions. Many of the donor family members and living donors were ready for some quiet time after the ceremonies and headed back to where they were staying. Those who were still there when I left looked pretty tired and sleepy! Night all!
This day started with a great deal of information, most of it either new or presented with a slant that kept it fresh and interesting. It was fascinating to find out all of the current things happening in the world of donation and transplantation. It was reassuring and comforting to be lead to a better understanding of the recovery and use of the gifts from the donors. After the Plenery Session, the participants went into the workshop session of their choice, with different programs for donor families, living donors and procurement professionals. Some of the workshop sessions for donor family members are mostly informational in nature, and others more like sharing sessions or a combination of both types.
The National Donor Family Council Luncheon tasted pretty good, even though chicken was on the menu. The program was presented by Maggie Coolican, the volunteer chair of the Executive Committee of the Council. We found out that there are so many programs, resources and possibilities available for donor families and living donors. It was very encouraging. Special activities included drawings for stars designed, crafted and presented by a very loving woman member of by Team Northern California, and the presentation of a Donor Family t-shirts.
One of the most inspiring activities during the Games is the opportunity to place a medal around the neck of a transplant athlete. At registration, we were given the chance to request this honor. I was at track and field, and watched donor family members, whom I had met, learn the joy of this special event. The athlete whose medal I placed was a friend from the 1997 World Transplant Games, which made the experience even more meaningful. Again, how does one describe the fullness of the heart at a time like that? All I can say is that this experience is one of the highest of the highs at the Games, and yet a very quiet sigh of peace.
Sharing sessions for donor families are private. The most important part of them, is that true sharing occurs, and grieving and growing begin or continue. We share our loved ones and our love.
The Joint Forum on Communication Issues was one of the premier places to be for what is now happening in the world of communication between donor family members and transplant recipients. Communication guidelines exist, and one of the next steps is to make certain that they are distributed to the medical community and other sectors. The basic idea is that donor family members are empowered to make the decision about donation, and they should be empowered to make their own decisions about communication. Mutually acceptable, agreed upon communication between family members of non-living donors and recipients of the gifts should be their decisions. The guidelines state that when communication is mutually desired, it should be facilitated by the transplant community. I certainly agree.
Well...........Want to sing? Want to dance? Some donor family members weren't ready for that, were tired or had something else they wished to do. But a bunch of living donors and donor family members were having a great time. I was out on the dance floor, until my athlete partner danced my legs off. He was another old friend from the World Games. The Team USA group who were in Sydney, Australia for the World Games had a mini-reunion in the middle of Social Hour, sharing hugs, pictures, memories, and just a swingin'!
The second day of programs included more workshops and sharing sessions. Most of us headed out sometime that morning to immerse ourselves in the glory of watching the athletes compete and presenting medals. And how fun it is to see the athletes wearing the medals they have won! One of my favorites sounds is the jiggle caused by the movement of an athlete whose several medals are clinking together, followed by the sight of the happy face above the happy noise!
Friday afternoon was the Quilt Square Pinning Ceremony. "We have the Quilt Pinning because it's another special way for families to honor their loved one," was how Maggie Coolican the volunteer chairperson of the National Donor Family Council opened the ceremony. The 8" by 8" squares are crafted by friends and family members, and in a few cases, the recipients. They will become part of the National Donor Family Quilt as soon as Maggie Coolican can get them added to it.
Marie Price pinned on a square with a beautiful angel for her son, James Edward Price, 2-18-94 to 2-22-94. "Our Angel of Joy, even though he only lived a short time, he was our angel and the joy of the opportunity to donate. And the opportunity of joy for the family of the boy who wouldn't have lived." "We couldn't change the fact that he died, but we could change someone else's life for the better." And James was a heart and liver donor, and his corneas were donated to science. His younger brothers Steven and Anthony helped their mom, and Steven has great hand and eye coordination for square pinning. :) James' heart recipient is competing in these Games.
Wanda Lassister pinned a square for her husband, Robert L. Lassiter, 10-22-43 to 11-1-97. "'Bobby' was like a zesty spice that was added to our lives to complete our recipe for life. Furthermore, through his organ donations, he continues to be the spice that allows donor recipients to savor life itself."
The Joint Forum for Friday was on Advocacy. I was meeting a dear friend from my e-mail support group for the first time, and missed it. Advocacy is extremely important. I know that those who were there were inspired to continue to promote organ and tissue donation increase, and make the experiences of giving and receiving and living afterwards the best that they can be for all of us.
Friday night's Coffee House was a first time event that I hope will be a permanent part of the Games and any time that recipients, living donors and donor family members gather. Dave Stanton had the inspiration for the Coffee House which provided a place for everyone involved in the donation and transplantation circle to honor their loved ones. Dave Stanton and Mary Ann Carpenter did all the hard work so that this special event could take place.
Anyone who wished to do so could read a poem or make a statement related to a donor or donation or their own feelings. The sharing was incredibly heart warming. Reading my poem honoring my husband Wayland (a 1994 eye and tissue donor), made me feel so lovingly and intimately connected to each of the people there, and to the Circle of Life.
The evening ended with Social Hour and Karaoke. It was even more packed than the night before. There was a lot of talent there....and even more enthusiasm. What a day!