Grief and Support

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For Those Who Give and Grieve A quarterly newsletter for donor families, published by the National Donor Family Council of the National Kidney Foundation, to offer information about grief and support. For Those who Give and Grieve is provided to all families at no cost.

Fall/Holiday 2008 Visit our home for donor families at www.donorfamily.org Volume 17, Number 2

the Christmas QUILTS By Kris Herman, Donor Wife

hristmas of 2007 was for each of our four kids. The quilts my first one without my would be the work of my hands, but Chusband Tim, who had mostly would be a gift of love from passed away in June following a their dad. ruptured brain aneurysm. It was also our kids’ first Christmas without I used twelve 15-inch squares in their dad. Knowing it would be an each quilt. On the back of each extremely difficult “first” for all of quilt I had a label embroidered with Tim’s arms. My favorite square has us, and not really looking forward a message and an eagle, which has a pocket from a flannel shirt that to Christmas, I kept trying to come significant meaning for us. had belonged to my dad, and after up with a special gift idea for the he passed away in 1991, Tim often kids—something that Tim could be Once I had all the quilt tops wore that shirt. part of, if only in spirit. finished, my friend Mary Smith made it her top priority to get them I really miss our quiet moments One day, I realized just how many all quilted for me. together at the end of an ordinary t-shirts Tim used to have! Suddenly day, but even more than that, I it became abundantly clear what Finally, Christmas Day arrived. miss waking up next to Tim every to do for the kids for their special There were lots of tears and hugs as morning to begin another ordinary Christmas gift. There were enough the kids opened their gift bags and day. Now, the memories of all those t-shirts to make quilts for me and realized what was inside. They loved moments bring me comfort and a the quilts and I loved watching as sense of peace that settles over me they unfolded them and touched as I wrap up in the quilt. That is also every square. The love they felt for when I think of Christopher Robin’s their dad was almost tangible. It was words to Winnie the Pooh: “If there very cathartic for me, and a definite is ever a tomorrow when we’re not labor of love that will be treasured together, promise me you’ll always by the kids forever. remember you are braver than you believe, stronger than you seem, I made a quilt for myself too. When and smarter than you think. But I wrap up in it, looking at all the the most important thing is, even squares and feeling so cozy, I if we’re apart, I’ll always be almost feel as if I’m wrapped in with you.”

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For Those Who Give and Grieve is published quarterly by the National Donor Family Council of the National Kidney Foundation (NKF). Opinions expressed in this newsletter do not necessarily represent the position of the NKF. The NKF reserves the right to edit all submissions. Please contact the NKF for article submission guidelines or permission to reprint articles.

Editor-in-ChiEf ProfESSionAl EditorS Rose D'Acquisto (cont’d) St. Paul, MN Benjamin S. Wolfe, MEd, LICSW Duluth, MN ASSiStAnt Editor Charles Corr, PhD Douglas G. Harrell St. Pete Beach, FL Elkton, MD

donor fAmily EditorS tEEn Editor Susan Dillon Mia Lester Downingtown, PA trAnSPlAnt rECiPiEnt Jan Frye-Hill Winston Salem, NC EditorS Judy Grogan Jack Fassnacht, Esq Auburn, WA Chicago, IL Jan O'Bryan-Wilson James Gleason Kansas City, KS Beverly, NJ

ProfESSionAl EditorS orgAnizAtionAl liAiSonS Suzanne Ball AATB Sandie Henderson-Boncore Edison, NJ AOPO Robin Cowherd Elizabeth McNamara EBAA Kara Petry Orchard Park, NY MTF Maggie Coolican EditoriAl offiCE National Donor Family Council NKF, 30 East 33rd Street New York, NY 10016 800.622.9010 • 212.889.2210 Fax: 212.689.9261 www.donorfamily.org E-mail: [email protected] ExECutivE Editor EditoriAl dirECtor Gigi Politoski Jennifer Martin mAnAging Editor dESign dirECtor James McCann Oumaya Abi Saab ProduCtion mAnAgEr Jamie Biegeleisen

WE FONDLY remember…

Dana Dal Santo Lea Ann Hairston 1948 – 2007 January 10, 1979 – November 24, 1996

Gary Jones Tim Ehmke April 16, 1946 – May 17, 1980 – May 25, 2007 March 12, 2007

KC Lani Alii Estabilio Matthew Longsworth May 1983 – May 4, 2002 – October 1998 March 24, 2007 2 For Those Who Give and Grieve, Volume 17, Number 2

DONATED SKIN saves burn victim n what should have been The Pawling family: (left to another lazy summer day right) Kelly, Wendy, Richard, Oin June 2006, the Pawling Nicole and Chad. family was suddenly faced with a life or death situation. his ordeal, Richard’s life is getting back to normal. Making up for lost Richard and his two siblings were time, he was able to graduate high riding dirt bikes when he and his school with his class and begin sister Nicole collided. His gas tank college in the fall. exploded, splashing them both With third degree burns over 65 with burning gasoline. Nicole was percent of his body, Richard’s “Today, my life is back the way burned on her arms, legs and face, recovery was not assured. “I had it was for the most part,” said while most of Richard’s clothes a lot of infection issues,” he said. Richard. “I have a few issues, but were set ablaze. “My kidneys shut down and I I can usually work around them. was on dialysis for a month. My I worked as a farm hand for the “I was not really scared,” said liver was starting to shut down. summer and this really helped Richard. “I remember the pain If people had not donated skin, to build back my muscle tone. In and it was hard to breathe. I was I believe my chances of survival my spare time, I love to ride my wondering if I was going to die.” would have been slim to none. I motorcycle, swim and hang out Richard’s brother Chad came am glad that doctors have figured with my friends.” to their aid, extinguishing the out how to use donated tissue to flames, and his mother Wendy help heal burns, as I am sure this Richard adds, “I try to tell people rushed them to the burn center. helped save my life.” how important it is to donate Wendy recalls, “That is when we organs and tissues. So many people really got the eye opener. The Parents Kelly and Wendy are aren’t aware that skin can be doctor told us Nicole would be justifiably proud of the way their donated. If I could send a message in for a month or two, but that children overcame the difficulties to the family who donated my Richard would be in for three to resulting from the accident. Now tissue, I would say ‘Thanks! You six months, if he made it.” two years and 26 surgeries after helped save my life.’”

WE FONDLY remember…

Haley Eileen Nichols Nathaniel Eugene Piqué December 11, 1989 – April 21, 2005 March 14, 1974 – December 8, 2006

Virgil D. Petrik Ava Marie Schrodes August 12, 1931 – May 18, 1998 August 13, 2007 – August 14, 2007

3 For Those Who Give and Grieve, Volume 17, Number 2 RENEWED grief By Lani Leary, PhD© rief is hard work. While than a sibling, you may feel guilt Each secondary loss requires we work physically, along with renewed grief. An its own set of grief reactions, Gemotionally, mentally experience such as a wedding or from disbelief and anger to the and spiritually to labor through graduation, even if it comes decades exhaustion that comes from our grief, we often come up against after the loss, can trigger waves of sleeplessness and sobbing. This loss sudden, unexpected challenges that grief response. and the renewed grief that you will renew and add to our heartache. feel is a long process, and not one Grief work can feel close, raw and exhausting, but it can be even Additional, subsequent losses can event. No one can expect you to more difficult when we experience exaggerate and compound your move through this at either their additional losses. sense of being alone or left behind. pace or quickly because it is “just” Loss of a job, loss of a home, loss a day or a season or a song or a A sudden, temporary upsurge of of a marriage, loss of mobility or pet. These require an adjustment grief, or “grief burst,” can happen for health, the death of a pet or loss of period. You have to respond to the a number of reasons. Your reaction a dream all remind you that you are conflict between the world that you can come as a response to the vulnerable and suffer cumulative had learned to live in, and one that anniversary of the death, a birthday losses and deaths in many forms. cannot be. or other meaningful holiday. A favorite season that has special For example, when the pet of a Others may not understand your memories may bring back a wave deceased daughter dies, you lose renewed grief. It may be helpful of longing and grief. Or, everyday, more than just a beloved animal. to ask your family and friends to small things—smells, sights, You may experience that as losing respect the disorder and confusion sounds—can bring a surge of grief. an invisible connection to your child of this renewed grief for you. You and a way to remember her. These can ask them to be with you in a Unexpected grief can be triggered additional losses can be devastating supportive, non-judgmental way so when you reach an age that is because of what they mean to that you can feel all of the painful associated with the death. For us—not just the loss of the person emotions that surround whatever example, when celebrating your or object, but also the secondary loss is causing your grief. That will be birthday means living more years of the link to our loved one. your “way through grief.”

4 For Those Who Give and Grieve, Volume 17, Number 2 donor fAmily voices Renewed Grief

CAN YOU REMEMBER AN EvENT OR SITUATION THAT TRIGGERED YOUR GRIEF AGAIN UNExPECTEDLY? Did friends or family members understand or were they baffled by your reaction? What helped you cope with it?

Editor's Note: We asked families these questions on our donor family e-mail list; some of their responses follow. Please visit www.donorfamilyforums.org to read the full responses or to share your own experience. To join the e-mail list, write to [email protected] and ask to “Join the NDFC e-mail list.”

This certainly explains my extreme reaction to the I used to always know when my sons were home death of our old cat. I’ve never reacted that way to a because I could see light under their doors. That’s how death of a pet! Plus, my son Jeremy had named him… I knew they were safe and I could sleep. One night after this cat had lived on after Jeremy died. It is beneficial Brad’s death in 2001, I saw light under his door. (My for people to understand that these “renewed grief husband had been in the room earlier and forgot to turn bursts” are normal. I don’t expect others to understand; the light off.) The grief hit me, like he died yesterday, that takes way too much energy on my part. Instead, I’ll and I cried the rest of the night. These things happen turn to my online group of friends who understand. — Gabrielle Pierce to all of us. Others have been through the same thing, survived and gotten stronger—and we will too. — Sandra Cooper I call them “Bolts from the Blue.” I had always been a nagging mom about getting my son to brush his teeth, and after he died, I dissolved into tears by the tooth- Shortly before his third birthday, my sweet grandson brush display in a store. A sweet elderly lady came to gave the bravest gift of life. Recently, I saw a little statue my rescue, put her arm around me and offered a tissue. of a frog dressed as a pilot and it was suddenly difficult I thanked her and started to explain, but she stopped for me to breathe. In an instant, it seemed the air had me, saying that she just knew I needed a tissue. She been sucked out of the room. This little statue seemed patted me on the back and continued down the aisle. symbolic of the joy we shared. Fighting back the The tissue is in my box of keepsakes today and I will emotions rising inside me, the frog pilot came home always remember her wordless understanding. with me. Somehow, this silly little frog brings great joy — Diedra (Dee) Thompson in remembering all we shared together. — Sheila Murphy My daughter and I were very close. There are many things that will trigger my grief again and again— When I hear our song, “Stardust,” or any big band music, trimming a Christmas tree because we used to do that it brings tears again, as does smelling his shaving lotion together, finding her flip-flops in the attic, driving by her college apartment, going to her church when they have or seeing men in plaid shirts like he used to wear. But chosen to sing one of the songs used at her funeral mass. with the help of God, I’ll continue until we meet again. — Miguel A. DeLeon — Anne Wiener

After four years, these moments continue to happen. I I lost my son to suicide in 2003. When I heard that call them “Tyler moments.” The first birthday after he suicide is one of leading causes of death in the nation, had passed away was an especially hard “Tyler moment.” it made me feel like a “failure” again that I hadn’t been It would have been his 20th birthday and I felt such a able to stop it or see it coming. My biggest comfort is great amount of sadness. These emotions hit, but they a collage that I put together of his life. The National usually don’t last long. I have learned to expect them. Donor Family Council message boards are also Then, I think of the joy that Tyler brought to our lives comforting and make me know I’m not crazy for and I go on. still having these feelings after five years. — Sheila Baxter — Pat Cape 5 For Those Who Give and Grieve, Volume 17, Number 2 TO MY DONOR’S Family This is a long-overdue message of appreciation to you.

ight years ago, I was 35 years to walk without a limp and pain. I that you made a powerful decision old and the mother of a was blessed to receive a gift of bone when you said “yes” to donation at E two-year-old daughter and tissue to bridge the gap in my what I can only imagine was a very a sixth-month-old son when my fractured leg. I received this gift difficult time in your lives. husband and I went out for an early from you and your loved one. morning tee time on Memorial Day. Please know that I honor the I live in the Twin Cities area and am memory of your loved one, my The anticipation of a late spring now in my mid 40s. I work full- donor. My life is better because of morning at the golf course came to time and am happily married to my your gift. My family’s lives are better an abrupt halt when our car was hit husband. Our two children are now because of your gift. The world is by another. Our car was totaled and 10 and 8, healthy and happy. I thank better because of people like you. we were lucky to be alive. I suffered you for the selfless gift you gave at Thank you so very much. a complex fracture of my right leg the time that your loved one died. With appreciation and prayers, and needed to have surgery in order I know nothing about you...except Brenda

Stress! One thing I’ve learned in the five years since my more donor family voices continued from page 5 daughter passed away is that if I let my life get too busy and things start to stress me out, then I relapse into my One day after work, I passed a woman at the end of a grief. To survive on a day-to-day basis since her loss, I driveway holding a toddler. I knew they were waiting have learned to compartmentalize my emotions and for her husband to come home. My wife used to do that life. When one compartment starts to overflow, it causes too. I immediately started to cry. The vision still bothers my “loss compartment” to fill up even fuller and I stop me, months later. My friends understood, but the pain coping with everything else in my life and start grieving is still very real and deep. The love that my wife had all over again. I’ve just learned to say “no” more often for me and our children helps me cope, along with my and keep my personal and business life as uncluttered knowledge that she is watching over us. However, I still as possible. cry every time I pass that driveway. — Jennifer Brown — Jim Baldinger My niece Carmen’s high school graduation triggered My grief is exacerbated with each and every milestone thoughts of my father (her “PopPop”) who passed away that my nephew reaches in life. His mom, my sister, nearly thirteen years ago. As I watched my niece walk died five years ago and it feels like the “elephant on my across the stage to pick up her high school diploma, chest” every time he moves up a grade, gets a report all these memories came flooding over me. My father card, plays an instrument, falls down, learns to skate- played an integral part of those early days of her life. board, swim or even has a new friend. I haven’t found Dad would be so, so proud of Carmen...and I know his the right coping mechanism just yet, but I’m working spirit is beaming with pride. on it. Still coping... — Tina Pierce — Kathleen Hatala It’s been almost 13 years since I lost my 16-year-old I went to the beach, which was my husband’s daughter Tiffany. When I found her bathrobe, I had a favorite place to go. It triggered a response that I did sudden memory of her standing in that robe with not expect—depression, isolation, loneliness. I thought a towel around her head. The shock sent me into a I was going crazy and no one seemed to understand. flood of tears and the old “punched in the stomach” These questions could not have come at a better time… feeling returned. I coped by reminding myself that when I read this it was like, “Ok, you are not alone; you Tiffany doesn’t want me to be sad, and she was a are not going crazy.” recycler who would have told me to get rid of that — Barbara Allen ratty old bathrobe. I keep her in my heart. — Billie Lomonaco 6 For Those Who Give and Grieve, Volume 17, Number 2

PEOPLE LIKE US By Rose D’Acquisto, Donor Wife

t’s hard to believe that it’s been So why, as a donor wife, does When patients are engaged in 11 years since my husband Tony a CDC pilot program for early their health care, it can mean Idied and I became a donor wife. detection of kidney disease matter better outcomes. As a donor In all these years, I still haven’t to me? It’s estimated that 26 family member, it’s important met anyone who’s had to make million adults in our country now to me that everything possible is the decision to donate their loved have CKD and another 20 million done to ensure that patients have one’s organs or tissues—at least more are at increased risk. There’s good outcomes. As donor families, not in my everyday life. But as a strong possibility that one of our our hope is that our loved ones’ a member and volunteer of the friends, co-workers or even a recipients cherish the second National Kidney Foundation (NKF) family member already has kidney chance at life they’ve been given. and the National Donor Family disease—or is at high risk with high Council (NDFC), I’ve had the blood pressure and/or diabetes. Finally, People Like Us advocates opportunity to meet hundreds of are working on legislation for other people like me: other donor immunosuppressive drug coverage. wives, donor husbands, donor Medicare currently only provides parents, donor siblings, children of drug coverage for 36 months donors and donor grandparents. following most kidney transplants. If a recipient isn’t able to pay for That is what I appreciate about anti-rejection drugs after that the NKF’s People Like Us time, they may lose the transplant. grassroots advocacy program. We need to ask our legislators to It empowers people like you and extend coverage for the life of me, our families and our friends, the transplant so that our loved to become advocates on issues that CKD, when detected early, is one’s gift of life is protected from impact donor families, transplant treatable. As much as I believe in possible failure. recipients and kidney patients. organ donation, I also believe that we should be doing everything What I’ve learned in these years This year, on March 13, I was we can to educate people so they of being involved with the NDFC invited to Washington, D.C., to won’t end up needing dialysis or a is that donor families, transplant participate in a People Like Us kidney transplant. This is the first recipients and people with CKD event on World Kidney Day. program by the CDC to focus are all connected—we’ve all been I was one of a group of 25 on early detection of kidney touched by kidney disease, organ advocates made up of kidney disease, rather than end-stage donation and transplantation. patients, transplant recipients kidney failure. By taking a stand together, we have and donor family members who a stronger voice. Through People went to Capitol Hill to meet with Another big issue has been pre- Like Us and its electronic advocacy our Members of Congress. As dialysis education. A six-week tool, the Take Action Network, we each of us met with our Senators program for kidney patients will can make a difference. and Representatives, we shared provide valuable information on our stories. And, we asked nutrition, dialysis options and for their support—namely, to more. This legislation was finally For more information about increase funding for a Centers enacted in July 2008, representing a People Like Us and the Take for Disease Control (CDC) pilot huge victory for NKF and its People Action Network, please visit program that would provide Like Us advocates, thousands of www.nkfpeoplelikeus.org, e-mail early testing for chronic kidney whom had visited, e-mailed and us at [email protected] disease (CKD). called their representatives. or call 800.622.9010.

7 For Those Who Give and Grieve, Volume 17, Number 2

The on Tour Please note: This schedule is subject to change. Call the National Donor Family Council at 800.622.9010 for the most up-to-date information. The entire Quilt is not on display at these events, and not all events are open to the public. Please call the contact person for more information.

2008 October 10 Houston, Tx, The Living Bank, Texas Stars for Life, Lori Roy, 713.961.9431 October 12 Maumee, OH, Life Connection of Ohio, Donor Recognition Program, Tracy Kropp, 419.893.1618

2009

April 4 Modesto, CA, California Transplant Donor Network, Kidney Gift of Life Ball, Trace’e L. Harris, 209.550.0188

One panel of the National Donor Family Quilt is displayed year-round at the National Donor Memorial in Richmond, vA. (This Quilt panel will sometimes be moved for display at other national events.) For more information, contact Marilyn Jones at 800.622.9010.

For information about reserving a Quilt panel, please contact the NDFC for updated information and pricing. The NDFC can be reached by e-mail at [email protected] or by phone toll-free at 800.622.9010. Please notify the NDFC of any special requests, including requests for a specific panel of the Quilt. Arrangements will need to be made to display the Quilt properly and obtain permission from the venue where the Quilt will be displayed.

The mission of the National Donor Family Council is to enhance the sensitivity and effectiveness of the organ and tissue recovery process, to provide opportunities for families to grieve and grow, and to utilize the unique perspective and experiences of these families to increase organ and tissue donation.

National Donor Family Council National Kidney Foundation 30 East 33rd Street New York, NY 10016

Please help us “cut down” our costs by notifying us when your address changes. E-mail us directly at [email protected] It costs 42 cents if you forget.