Wednesday, August 6, 2008

An extra bonus post for today

My faithful readers, you get another post.

I'm realizing that Dovi leaves for Camp Simcha Special...ummmm....a week from tomorrow! I have done....nothing.

Unless you count ordering iron on name tapes, which i have yet to iron on to anything.

So just thinking about it is making me twitchy-we literally fly with 4 suitcases, 2 of them filled to the brim with medical supplies. I shudder to envision what is going to ensue when I try and check through these incredibly overweight suitcases when they have gotten so strict (mean) about luggage. I'm envisioning paying hundreds of dollars in both fees to check the suitcases to start with and overweight. Will update.

So I'm using my blog to make my to-do list. Anyone who would like to help me get it done, feel free to volunteer hahahahahahahahahaha

  1. Target-ziploc bags to hold his "outfits for the day" (yes, I am a tad controlling)
  2. Review his meds, make sure he has everything he needs
  3. Target again to pick up med refills
  4. Iron on name tapes onto every piece of clothing
  5. Type out list of clothing going-I am sick of (a) him coming home missing items and (b) coming home with other people's clothing, including the yearly 1 pair of counselor's underwear.......
  6. Make Mt. St. Medical Supplies in the living room as I collect everything
  7. Begin the packing
  8. Realize the bags are waaaaayyy to heavy, panic, unpack, and start again
  9. Make sure Benjie got me my rental car (I know you read this, so consider this your reminder!)
  10. Print out mapquest directions to and from camp
  11. Consider investing in a radar detector so as not to get caught going 30 miles over the speed limit, thus incurring a $250 speeding ticket

But in contemplating Dovi's fifth year at CSS, I am just filled with such an incredible feeling of gratitude to Chai Lifeline for making this experience available to Dovi. Let's face it. Dovi's life is HARD. He has to do crappy things. His body is seriously. messed. up. He's almost 11 and is still on a training wheel bike while ESJ are zooming like little speed demons without training wheels. (sidebar-must buy new bike. Then will add on this. How freaking cool! Maybe I can get it organized and have it waiting for him when he gets home from camp...). Camp is just...divine for him.

So I'm copying and pasting my speech from last year's marathon when I spoke about how Chai Lifeline/Camp Simcha has touched our lives. Enjoy-and don't forget, I'm running again this year-I'm now hitting you all up to sponsor me. Last year I almost hit $6000-this year I want to surpass it.

BTW you all like how I've figured out the link option? Going a little linkage crazayzay :)

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 is 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 the desire on the part of the moms not to lose touch. From that phone group of about 10 moms 8 years ago we formed an online list group, specialfummoms, 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. The list says “bathrobe”-what type of bathrobe are you sending? Terry? Fleece? Why do they need it? How many pairs of socks are you sending? Hmm I think I’m going to prepackage all of Dovi’s daily outfits in Ziploc bags- I can’t trust those boys to match his clothes! And the other mother worried-who will curl his payos every day? I can’t have him in pictures looking like a ragamuffin! But underneath these seemingly silly concerns, we were beside ourselves with worry-how could we be doing this? Who can take care of our boys as well as we can? How can 19 year old boys be trusted to do what we do? 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, dropping him off. CSS literally is. Heaven. On. Earth. I wish everyone could see the joy on Dovi’s face when he reunited with his counselors and friends. 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, Ezra, and Benjamin have become a little group. How wonderful for my Dovi to have 2 friends, the same age as him, with the same diagnosis as him. They hang out together, play endless card games of war, and have air guitar sing alongs with the IV poles. This year camp and school overlap by a week-but there is no question-camp overrides school. 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”. Feeding tubes are the norm, not the exception-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! Nebulizers, special formulas, and eye drop breaks are just part of the normal day at CSS. And the most amazing part of all is the knowledge on the part of the parents, who have entrusted our most precious, fragile possessions to the staff, is 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?” One night this fall at about 8:30, we heard a knock at the door. It was Dovi’s beloved counselor of 4 years, Nochum Schapiro, who was passing through Chicago with his brother, and had to stop, even for 5 minutes, to see Dovi. He was in shock that Dovi was sleeping! 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.

In 2005, at age 7, Dovi had to have major spinal surgery in New York. We live in Chicago, and at that time, our triplets were 3 years old. We expected a grueling 12 hour surgery, 1-2 week hospital stay and recuperation at my family in New Jersey, and to return home soon after. But as things are with Dovi, life is never simple. Yes, we had a grueling 12 hour surgery. But no, the recuperation was not simple and we did not return soon after. In typical Dovi fashion, he opted to stay in the NYU Hospital PICU almost 2 weeks, and within 3 days of discharge he was right back in with an infection in his sutures for another week and a half with a PICC line and orders for 4 weeks of IV antibiotics. Throughout both hospitalizations, Chai Lifeline was there with delicious hot dinners delivered to us nightly-how did they keep them hot?-visitors in the morning bearing bagels and cream cheese, and treats for Dovi. Chai Lifeline also helped out with our other kids in Chicago, coordinating child care when family was not available and meals when necessary. And when it became clear that we would not be able to return to Chicago for Pesach and would have to stay in NJ (and all my family was out of town!), Chai Lifeline delivered wonderful holiday meals to us, including everything we needed to make a seder.

One time, Dovi was in the hospital and Benjie was staying with him for Shabbos as I stayed home with Elisha, Shana, and Jakie. I took him all the things he had told me he needed for Shabbos. But about ½ an hour before candle lighting, Benjie called me in a panic-“You forgot to send me my siddur!” Well the hospital is 15 minutes away-there is no way that I could have made it there and back with 2 year old triplets in the car in time for Shabbos. (Mo, I’m not sure you even remember this story!)So I called Moshe. “Help!!” Moshe said-“Give me a few minutes”. He called me back “OK-here’s the plan-a prepaid taxi will be coming to your house to pick up a bag with Benjie’s siddur. The driver knows to take it in and drop it off at the information desk and the hospital. Tell Benjie to come down and get it in about ½ an hour”. This is CL-you need something, we’ll get it done, no questions asked.

So all these little anecdotes about our life with Dovi are cute, and touching-they might have made you cry a little-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 (the cutie in the yellow baseball hat on the phone) 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 past 8 years. They have helped us overcome immeasurable obstacles. What better way to give back in some small way to CL than to raise money and awareness by running on Team Lifeline? That’s 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. I can do it. It’s not THAT hard, is it? I’ll get credit for effort even if I don’t finish, right? 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 with 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.


Nahum and Rebecca said...

Very snazzy with the links. Don't forget the phone cards so Dovi can call you from his all expenses paid camp.

Stephanie said...

Sara - I love you to pieces, but the hyperlinks and polka dots on your blog make me feel the need to take dramamine when I scroll quickly!