A little preview of my speech for the Team Lifeline Marathon

Hi everyone. My name is Sara P, and I’m proud to say that this is my second year running the half marathon with Team Lifeline. We all have our own reasons for taking on the challenge of running a full or half marathon. For me, the reason was very near and dear to my heart. 10 years ago my husband Benjie and I had our first son named Dovi. He was diagnosed at 2 months of age with Familial Dysautonomia, one of the Jewish genetic diseases. I have very hazy memories of the first year of Dovi’s life. I remember a mountain of medical papers and bills on our coffee table. I remember eating Cranberry Almond Crunch cereal for dinner almost every night. I remember yelling at my husband at inopportune times. And I remember Chai Lifeline. I remember Rivka Ginsparg, then the social worker for Chai Lifeline, sitting in my living room, asking me “What can we do for you? How can we help?” And help Chai Lifeline did. I remember the first Chai Lifeline Chanukah party we went to-we literally needed a trash bag to haul home the 8 gifts for Dovi. We had respite workers every week, one to take Dovi to therapy and give me a break from our grueling 13 session per week therapy schedule, and someone to play with Dovi one afternoon per week so I could run an errand or two or just read a book for an hour.

One of the biggest gifts that Chai Lifeline gave me was when Dovi was about two years old. I was invited to join a Chai Line-a monthly conference call for mothers struggling with a child with a chronic illness. What came from that call was both a feeling of “I’m not alone” and our desire not to lose touch. From that phone group of about 10 moms 8 years ago we formed an online list group that now has over 150 members from all walks of life and all types of childhood illness. I’m proud to say that all those original moms are still close today.

When Dovi was 6, Moshe Turk, then the director of CL Midwest, said to me “How about sending Dovi to Camp Simcha Special in the summer?” I said “He’s my baby! He’s only six years old! He hardly talks at all-and he’s so medically involved-How can I do that?” And Moshe said “He’s not the youngest at camp, we’ll find a counselor who is good with non verbal children, and I promise you the camp staff can handle him. You need a break.” I still recall sitting for five hours on the phone with another mother (that I’d met on the Chai Line) as we were both packing our boys the night before their first year at camp. We were beside ourselves with worry-how could we be doing this? But we trusted in CL and sent the boys to camp.

Now you’ve all heard that Camp Simcha is “a little slice of heaven on earth” Now that sounds very sweet and lovely. But here’s the reality-I’ve been to camp every year for the past 4 years Dovi’s gone. CSS literally is. Heaven. On. Earth. When Dovi goes to camp he is no longer that kid with the disease-wait it’s a Jewish one? Are you Sure? I’ve never heard of it? That no one can pronounce. He is just one of the boys. Only at CSS could a skit in the talent show be Dovi and his buddy Ezra, drinking “beer”-water from an empty beer bottle-through their gastrostomy tubes. Dovi’s camp counselors can’t understand that at home, no, he does not stay up until 11 pm and get up ready to go at 7am.

We’ve all heard of the “big” camp events-they ride in a helicopter, in motorcycles, and enjoy concerts with Jewish music stars. Those events are amazing-but the real magic at camp is the little things. The love of the counselors. The dedication of the staff. The camaraderie with the kids who are “just like them”-they say the irony of camp is that they have the best food of all camps and most of the kids don’t even eat it! And most of all, the knowledge on the part of the parents who have entrusted our most precious, fragile possessions, that our children are loved, safe, and most probably don’t want to come home.

What is amazing to me as a parent as well is the desire of the counselors to keep in touch with Dovi. We constantly get calls from random guys “Hi, I was a counselor at CSS. Can I talk to Dovi?” We get visitors “Hi, I was a counselor at camp, and I’m in town for a wedding. Can I come and visit Dovi?” When we went to NY last week to see Dovi’s doctors, who picked us up from the airport when we got diverted to LGA from Newark? None other than Rabbi Wiggles, also known as Simcha Willig, Dovi’s unit head at camp this past summer.

So all these little anecdotes about our life with Dovi are cute, and touching , but how does that get us here in Miami the night before the Marathon? Two years ago, I was at the Chai Lifeline Midwest Young Leadership Board annual family carnival fundraiser. They had set up a table of all the CL literature for people to pick up. I picked up all the different brochures-not to learn more about CL-obviously I knew already the wonderful things CL does-but to look for pictures of Dovi. He’s shown up in other CL publications before and I wanted to look for him. Well as we were walking to the car with our 4 kids, I glanced at the different flyers, among them the Team Lifeline one. I looked at Benjie and said “I should run on Team Lifeline!” To be honest, Benjie burst out laughing. I am more apt to paint a wall than exercise. And at that time, Dovi was 8, and our triplets were 3. When on earth was I going to have time to train? Well as those of you who know me personally know, telling me I cannot do something is all the impetus I need. And I started thinking. CL has been such a part of our lives for the last 8 years. They have helped us overcome immeasurable obstacles. What better of a way to give back in some small way to CL than to raise money and awareness, by running on Team Lifeline? That is all true. But like I said, I was not an exerciser-I’ll leave that to Benjie with his softball and ice hockey. But I kept thinking-I have to do this! I need to give back. And as an added bonus, I’ll get into shape!

And so it began. I laced up my old sneakers, and tried a mile. I thought I would pass out, but I finished. Slowly, one mile turned into two, two into three, and so on, until last year I ran the ½ marathon on Team Lifeline in 2:36:17. And the satisfaction and fulfillment that I got carried over…I ran another ½ marathon this past summer-in my Team Lifeline shirt-actually with Moshe! And this year, even though we have not had an easy six months with Dovi-3 broken legs, one corneal abrasion over 100% of his cornea, I am here to run with Team Lifeline. I won’t be as fast-I’m hoping to finish in under 3 hours. Anyone who’d like to be a slacker runner with me, let me know! But when I finish, I will know that I have overcome the odds, persevered, and done something amazing, both for myself, and for Dovi and all the children of Chai Lifeline as well.

I thank you all from the bottom of my heart for giving of your time, energy, and fundraising skills to help both my family and all the families of Chai Lifeline. Good luck tomorrow, and thank you again.