Paul Lebowitz's son James' memory lives on after organ donations
SUSAN AND HER SON JAMES LEBOWITZ. James, just 18 and a freshman at Cal Poly Pomona, passed away Jan. 13 and several of his organs, among them his heart and kidneys, were donated. Services are pending. A permanent endowment is being set up at the university in his name (see info below). Here he is pictured at his high school prom with Susan.
BY PAT McDONELL
Paul and Susan Lebowitz lost their 18-year-old son under the most unimaginable tragedy, yet his sudden death Jan. 13 has made life possible for many others. In a selfless, generous act in the midst of the worst possible family scenario, the Lebowitzs thought of others in desperate need of organ donations after James, a freshman studying computer science at Cal Poly Pomona, died from a brain aneurysm.
As many readers are aware, Paul is an accomplished outdoor writer, wrote a column on kayaking for years, is now editor of KayakFishMagazine and besides being an avid fisherman, he also served in Desert Storm as a U.S. Army linguistic-voice interceptor and represented fishermen in the most thankless job of all time, as one of the SoCal Blue Ribbon Task Force reps during the long, drawn-out MLPA process. He’s an SDSU grad and an avid Aztecs basketball fan.
Like many people whom we think we know, there are parts of Paul’s life I was not aware. He had quit his full-time job as an environmental consultant to stay at home to raise his autistic son who had Asbergers Syndrome. His wife continued to work at Qualcomm while Paul worked from home as a freelance writer.
The loss of his son is devastating. They were so close, and James had come so far.
Despite being an avid reader before 1st grade, he could not write. School so overwhelmed him at first he would curl up under his desk for hours.
“As you might imagine,” said Paul, “there were some teachers and administrators who didn’t appreciate having to deal with that in a classroom,” There were huge battles over the years with officials over whether James could be mainstreamed, but with the help of dedicated occupational therapists and special education staffers in the San Diego Unified School District, he proved many experts wrong.
“He was quiet, that is for sure,” said Paul. “But you would not have known James was autistic. I was so proud of how far he had come. He was going to college, living at the dorm, he had friends and was part of the campus life and community. I don’t think even he knew how far he had come.” On a recent 9-day trip in June, Paul recalls, one of many such summer trips over the years he and James took to amusement parks around the country, he told him how proud he was of him. Such long trips centered around roller coasters and amusement parks. It started at Disneyland.
“There’s just something about Disneyland that appeals to autistic kids,” said Paul. “He loved it. Especially the roller coasters. James was always so sensitive to noises. He loved the sensation of the rides, but hated the noise of the coasters, and would plug his ears with his fingers during every ride. Over the years on all those trips, we’ve ridden 300 roller coasters. I think we were at the point where we had run out of roller coasters to visit in North America.”
On Jan. 13, there was no indication there was anything wrong just hours before in a hour-long phone call from his dorm room at Cal Poly.
“We had just spoken with him on the phone from 8:30 to 9:30, he was happy and joking with his mom,” said Paul. In the middle of the night, a call came from the hospital. His son was unresponsive. They jumped in the car from their home in San Diego. The updates came as they drove two hours north in the darkness.
“The doctor said there was a very serious bleed on the brain and they were prepping him for surgery, but that it was very iffy,” said Paul. Imagine that phone call as a parent. “Then came another call from the neurosurgeon, that the aneurysm was at the brain stem and was catastrophic.” First comes hope. Then reality. Then came deep, unrelenting grief.
The decision to donate his organs was not difficult.
“It wasn’t really a decision the way it was posed in the Facebook posts,” said Paul. “When we arrived, there was our beautiful son who looked like he’s sleeping peacefully. Of course we insisted on a second opinion from a neurosurgeon, but once he confirmed the diagnosis and left, the first surgeon came back in and said, ‘You really should consider an organ donation.’ Of course, we said yes. James was such a generous sort, a really giving, loving kid, and he would have wanted to help others to improve lives. How could we say no to that.”
Doctors left James on life support to protect his organs as it was decided they would take his lungs, heart, liver, two kidneys and pancreas. Paul and Susan had 24 hours to say goodbye “before he was taken, and really gone,” said Paul. James was on a respirator for two days while they began looking for matches on the transplant lists. That is when the agency OneLegacy called. The agency serves hundreds of SoCal hospitals.
Their work ranges from organizing transplant lists, to offering grief counseling for families, helping families deal with the tragedy and organizing the movement of donated organs. Organ donation, Paul found, has many rigid protocols. But this is a new world, and the internet creates a massive circle of friends in the fishing community. Paul is part of that network as a fisherman and writer and sports fan, and OneLegacy made a suggestion.
“They told us one option was to designate specific donations, and that was when I put the call out on Facebook, to tell people to please get in touch with me as soon as possible,” said Paul. “It makes so much sense to try to help people in our circle of fishing, even if that circle of people is with people often once-removed from ours.”
For the two kidneys alone, there were six immediate requests. The key is finding a physical match. It would not be easy, as James was 6-foot-6. Paul said Randy Ladue saw the post and called his friend Tommy Gomes, owner of Catalina Offshore Products, who is also a longtime friend of Paul’s. Their friend George Martinez, an avid fisherman, was in need of a kidney. The circle of Facebook friends was in action.
Martinez was once a lead counselor for those with substance abuse at the San Diego Freedom Rancho Camp. That is how he met a recovering Tommy Gomes who told the Union-Tribune in a story last week that as a counselor Martinez “saved my life.” Martinez now works with ex-prisoners as they transition back to society.
By the next morning, doctors said the kidney was a match. Martinez received James’ kidney on Friday. Before surgery, Martinez posted on Facebook:
“OK, waiting to be wheeled in to surgery. So now I have time to explain how this miracle came about. Unfortunately, James Lebowitz, an 18-year-old kid who from this point on and for the rest of my life I will call him my ‘angel,’ passed away on the morning of the 13th of an aneurysm. His dad, Paul Lebowitz, posted on Facebook about the tragedy and that he wanted his son’s organs to be donated to help others. My friends, Tommy Gomes and Randy Ladue, made contact with Paul and told him about me. Paul called me and we talked for a few minutes. He then made a decision that if his son's kidney was a match they would donate it to me. Please pray for the Lebowitz family.”
After the surgery came this message to the Lebowitz family:
“Paul and Sue, I want to let you know that all is well," Martinez wrote. "This is my second day with my angels present and all is well. As you can see sleeping is hard to come by with all these meds and all testing and checking. I keep thinking that when this is over you will allow me to sit down with you so I can learn more about my angel. Will call you guys soon. Love George."
OneLegacy did much for the Lebowitz family. Grief counseling, arranging for funeral home services. There are group therapy sessions planned. In 45 days OneLegacy will provide information on how the other organ recipients have fared. “So far so good with George,” said Paul, “and the 18-year-old boy who received James’ heart. They have to wait that long to make sure the transplants were successful.”
If one thinks making contact with the recipients would be too emotional over a long period, that is not a remote concern for Paul and Susan. ”It will be painful, but I want to keep the memory of my son alive,” said Paul. “It will be a good thing for me. I want to remember James. I still can’t believe he‘s not going to be with me the rest of my life.”
Two things Paul and Susan want to emphasize. That organ donation is done with compassion and respect. “OneLegacy proved that from the first moment with us and James that they care about their donor families is so many ways.” And they wanted to say how Cal Poly Pomona University treated their son as a member of their family. Paul doubted that talk of “family” at a university of 20,000 students when he first heard it at freshman orientation. But the way his son was cared for in the dorm and at the hospital, and then at the candlelight vigil for his son on campus -- with professors, the university president and students attending, it proved it was not just talk.
“And part of this story is that through various parts of the fishing community and contacts that there really has been an outpouring of love and support that has been so heartwarming,” said Paul. He added that Facebook proved it can be a community link. “Tommy Gomes, who I have so much respect for in how he has made a second life for himself, said it right in a story by outdoor writer Ed Zieralski did a few days ago in the U-T. Tommy said that Facebook is mostly drama and BS, but those social connections really shine through when something like this happens.”
Paul said services are in the planning stages for a remembrance and paddle-out at La Jolla, with an informal shore lunch to follow, sometime in March or April. They will also arrange boats for those who prefer.
“We want to send him off in grand style with family and friends. I hope you'll come help us celebrate our lovely young man,” said Paul. “But if you can't we know your thoughts will be with us. Spreading his ashes there at least I know I will always be out there on the water with him the rest of my life.”
Endowment being set up in James Lebowitz’s name
Paul and Susan Lebowitz are working to endow a permanent annual Cal Poly scholarship in James' name and are asking people, in lieu of cards or flowers, to please consider making a donation in James' name.
In Remembrance Of James Lebowitz
Please hold for a scholarship endowment
California State Polytechnic University, Pomona Gift Processing Department
3801 West Temple Ave., Pomona, CA 91768
For more details about the organ donor agency OneLegacy, see its website at www.onelegacy.org
JAMES LEBOWITZ as a youngster fishing in Big Bear. (Paul Lebowitz photo)