MARCO ISLAND — Our community is rich with ordinary women dealing with extraordinary challenges. Among them are two mothers — Hari Jacobsen and Janet Stapleton; one Jewish, the other Catholic. Both sing at their houses of worship. Jacobsen is the Jewish Congregation of Marco Island’s cantorial soloist and Stapleton serves as one of the cantors at San Marco Catholic Church.
Both have gone through trials that have strengthened their faith. The women have never met but the phrases “roller coaster ride” and “one step forward and two steps back” frequently sprang to their lips when they spoke to the Church Lady, as well as references to angels as special people who God sent their way, faith and prayer. The angels were people who generously gave their time, treasure and talents to encourage and support the families.
Jacobsen’s 27-year-old daughter Lia has a rare genetic disorder that first affected her eyes and then her kidneys. Despite her eye problems Lia graduated with a bachelor’s degree in political science from Middlebury College in Vermont. She currently serves as special assistant to the Peace Corps’ director of gifts and grants management in Washington, D.C.
Lia’s kidneys began to seriously fail this fall. She and her mother were both tested for compatibility. Unlike the television medical and crime dramas, test results take many agonizing weeks to complete and frequently have to be repeated.
For several months before Lia’s successful surgery, her mother said over and over again, “take my kidneys, take my heart, take my eyes, I have lived a good life just make her better.”
Meanwhile, all was sunny and bright for Janet Stapleton’s granddaughter Harper Marie Stapleton, the daughter of Tara and Billy Stapleton.
The energetic toddler had a high fever and tremors and her parents took her to Children’s Hospital in Baltimore. She then developed unexplained and severe seizures and suffered respiratory distress. In February she was flown to Children’s Hospital of Philadelphia. Tests and more tests were done and redone, including several painful spinal taps; some critical results took more than 70 days.
And still the family does not know what is afflicting the child. She has been on and off a respirator, has a feeding tube and is being treated with numerous drugs. The possible diagnoses range from a rare genetic mitochondria disorder to post infectious autoimmune encephalitis.
The Stapletons’ wish they could take every germ in little Harper’s body if it would make her better.
In a recent meeting with Hari, she looked radiant. Was it the new hairdo or was it the relief that the transplant was a success and her daughter was back at the job she loved, contributing to society?
Hari clearly sees God’s hand in her and Lia’s life. Through a series of coincidences early in Lia’s life, the family was lead to a researcher in Miami who first tested Lia’s blood and then her family. The researcher discovered that Lia had a rare genetic disorder that caused her eye problems. The researcher later discovered decades later that the same gene lead to kidney failure.
For Lia it was difficult to find a match, and eventually was matched successfully to a young man. And her mother’s kidney was destined to go to someone else. As with Harper Marie, the medical progress was always two steps forward and one step back.
Hari was found to have kidney cancer, but it was encapsulated and did not spread. She thought the recipient was going to be a 70-year-old man but it was a mother of two. The recipient was given the choice to wait for a match or to accept Hari’s kidney. The surgeons assured everyone that the cancer could be “scooped out” and would most likely not be a problem, but there were no guarantees. Hari and Lia have met the woman and her husband and received beautiful homemade cards from her two children. It was a tearful meeting.
If Hari had not pressed on to donate a kidney she would be walking around today with cancer. Meanwhile as a complication of surgery Hari’s diaphragm was cut. Not good, especially for a singer. However, Hari just relies on the microphone a bit more and hopes for the best.
“Science is based on fact and religion is based on faith but they are not unrelated,” said Hari. She had once read a piece of fiction in which the heroine described her husband and son: one as her breath, the other as her heart. Each was an equally essential part of her existence. That is how she sees science and religion. If it were not for a combination of science and faith two people would be on still their knees, on dialysis, waiting for a kidney.
The roller coaster ride still continues for the Stapleton family. A woman in an online support group shared with Janet the importance of finding one thing to be thankful for every day. “Some days are harder than others,” she said.
Janet ends each entry on her Caringbridge blog with something she is thankful for: the times when Harper breathes on her own; the generous support of many whose donations will allow Harper’s mother stay at her bedside; prayers of friends; and most recently Harper’s fleeting smiles.
Although the two women have never met, Janet admires Hari’s grit because Hari gave of her body twice for her daughter; once when she gave birth and again when she donated a kidney.
“You have to lean on your faith and prayer support of others,” said Stapleton. “The news wants to focus on the negative in people but this experience has shown me the amazing goodness and generosity of people and how God’s love for us is shown through the care and concern of people.”
To read more about Harper Marie go to: http://www.caringbridge.org/visit/harpermariestapleton.