Monday, January 31, 2011

Thank you!!!

To our Dearest Friends,

So, here we go again.

As we have done for the past five years, we are again taking to the streets and running with Team Lifeline to raise money for Camp Simcha and Camp Simcha Special. The experiences we have had being a part of Team Lifeline in Miami have been beyond compare and this year will be no exception. Running with Team Lifeline in Miami has become our way of giving back to Chai Lifeline for all that they have done and continue to do for our Dovi.

This year however is a little different. Living in Chicago you would think that there would be no place we would rather be during the long cold winter than South Florida. To be honest we assumed all along that that is where we would go.

Then Team Lifeline announced that this year they would be participating in the first ever Jerusalem Marathon.


With that announcement our decision was made. On March 25th 2011 we will be joining Team Lifeline in Israel in support of all of the special children of Chai Lifeline.

In order to make this possible we are turning to you, our nearest and dearest friends and family. Words alone do no tell the story of just how important Chai Lifeline and Camp Simcha special are to Dovi. Camp has enabled Dovi to put aside all of his daily challenges and just be a kid. At Camp he is no longer the only kid with a G-Tube who can’t put his face in the water.

In addition to running for Dovi, we are dedicating this year’s marathon to the amazing counselors and kids of Bunk 17.

Yakov, Raphi, Yoeli, Nachman, and Shimon are the best counselors an FD kid could hope for!

This year, we are running for them as well as Dovi and his wonderful friends Ezra, Ben, and Eli.

The incredible experience that is Camp Simcha and Camp Simcha Special are a result of the tireless love and devotion of the counselors and staff. Please join us in making sure that Dovi, along with all of his friends will always have Camp Simcha and Camp Simcha Special to look forward to.

Our goal this year is to raise $10,000.

To learn more about all the amazing things that go on at Camp Simcha Special please click here.

To see a little more of Camp Simcha Special, watch these videos!

To see more about Team Lifeline, watch this video! Ooh look! My brother, Dovi, and I are at 0:27!

To sponsor us please click here

Thank you from the bottom of our hearts.

Love, Benjie and Sara

Wednesday, January 26, 2011

Team Lifeline ISRAEL!!!!!

I cannot speak.

I am so excited.

I am so terrified.

I cannot believe what I am about to tell you.

If all goes well, Benjie and I will be going to ISRAEL!

I haven't been in 11 years.

I'm one of those people who wants to lay down and kiss the earth when they arrive.

I haven't been since Dovi was 2.

How/Why are we going?

Well look at my title for this post!

Yes, Team Lifeline will be participating in the First Annual Jerusalem Marathon.


Obviously, we did not run Miami this year (it's this coming Sunday...sniff sniff). We didn't run because there was no way to train what with Dovi's Bar Mitzvah occupying every moment of our lives.

But now I am free! Free!

So I am training.

And training.

I am watching shows on Dovi's iPad as I run (Modern Family? OMG hysterical, thanks Shosh) and trying to envision the amazingness of running for Dovi. In Israel.

Excuse me while I go weep now.

So. Hey? Anyone want to sponsor me?

Click here and enter my name.

I'm going to go faint now.

Monday, January 24, 2011

In Which Sara Gets Deep

Even though I feel like I've been talking to myself recently, I've been thinking about this and want to write it down before I forget it.

I heard a shiur recently where the Rav was speaking about when Yosef HaTzaddik was sold to by his brothers and was taken down to Mitzrayim.

I'm sure most people know the story, but to sum up, in Bereishis, Genesis, Yosef, Joseph, was sold by his brothers as a slave down to Mitzrayim, Egypt. He was sold to a caravan of Yishmaelim who then sold him again and again, until he ended up in Mitzrayim and the whole story of how he rose in power began.

Yosef was sold to Yishmaelim, and it says in the Chumash that they were "bearing spices and balsam" (N'chos, Tzri, and Lot). Now we all know that the Torah does not use any superfluous words. So why on earth are three words "wasted" on telling us what the caravan carried? Who cares?

Rashi says that the Yishamaelim generally carried petroleum and resin, foul smelling items, in their caravans. But since Yosef was a Tzaddik, a righteous man, HaShem made the Yishmaelim carry sweet smelling spices "so that he should not be harmed by the foul odor".

When you read this Rashi, it seems kind of odd. Yosef was just sold by his brothers into slavery, and the miracle that HaShem chose to do was for him to not smell foul odors on his way down to Mitzrayim? How about a miracle that he not be sold? Or that he escape somehow? Why on earth was THIS the miracle?

So the answer, said the Rav that I heard speak, was this. It was predestined that Yosef should go down to Mitzrayim to set into motion the years of slavery and redemption, culminating in the Jewish people receiving the Torah. Yosef's years of servitude and anguish in Mitzrayim, for reasons that we do not understand, had to occur. But G-d gave him a blessing, a sign on his way down to those years of darkness. Yes, you will experience pain and servitude. You will not be with your family. But I will send you down to this experience with a sweet smelling accompaniment. I, G-d, will be with you all the time. Look how I made you comfortable for this hard, hard journey.

This got me thinking about the journey that I have been on with my Dovi. Yes, it is often a journey of darkness. Of pain. Of anguish, watching Dovi struggle to do all that his peers do effortlessly. To run down the street. To climb the stairs. FD is not all bad, but it IS a kind of servitude, servitude to Dovi's body that does not do what it is supposed to do.

But look!

Look at the beautiful b'sammim, spices that we have been given. Dovi has the most wonderful, beautiful personality. I often say that Dovi lacks a Yetzer HaRah, an evil inclination. Everyone who meets Dovi loves him. He is beautiful, both inside and out.

His demeanor is so amazing and enjoyable-how can you not just marvel at the beautiful N'chos, Tzri, and Lot that we have been blessed with along the journey.

HaShem has given us such a blessing. We truly have a sweet accompaniment. We have been made comfortable for this long, hard journey.

and He is with us every step of the way.

Thursday, January 20, 2011

Finally, at long last

I was able to upload the videos of Dovi skiing.

I tip my hat to Raphi for being able to both ski down a mountain and video Dovi at the same time. If I did that I would have two broken legs.


Tuesday, January 18, 2011

This is what it's all about.

If you had ever told me that my profoundly disabled son would have been able to do this:

and this:

and this:

and this:

I would never have believed you.

Dovi's ski trip with Kids of Courage last weekend was truly a dream come true.

Dovi conquered his illness with adventure.

Thank you!

Thursday, January 13, 2011

Oops. Forgot to Warn You.

It's a little dirty. Like bad words. But we're all adults here, right?

Never In My Life

Have I laughed this hard.

I'm sure I'm majorly late on the bandwagon here, but if you need a laugh, click here.

I am crying.

From Laughter.

Oh and if I could figure out why my videos keep erroring I would be able to share video of Dovi skiing this past weekend.

He is awesome.

Wednesday, January 5, 2011

An open letter to "the counselors"

Hi guys. How are you all doing? I know. It's been a terrible three weeks for you guys. It's madness-four campers lost in under three weeks? If I, as a parent, who didn't even know them, is reeling, I cannot imagine what you guys are going through.

I know that there was another letter like this written to you guys, but I think the more you hear it, the better.

Do you have any idea? Any at all? How you have changed not only Dovi's life, but our entire family's? FD is a terrible, fatal, insidious disease. FD takes over not only the body of the affected child, but the heart and soul of the parents. I would literally do anything, anything at all in the entire world to take a small amount of Dovi's daily suffering. But Dovi always has a smile on his face. He has joy and simchas hachaim. And I truly, in my heart of hearts, believe that a large amount of that joy comes directly from you.

You have given Dovi back his childhood and us back our lives. We have amazing help and support from our family and friends, but this is just different. When Dovi goes away with you, whether to camp or on a trip, we know that not only is Dovi safe, he will have an amazing time and most probably not want to come home. You've taught him to scream "FD Drools" and to respond "I have F......D!" like it's the best thing in the world. You've given him pride in who he is and helped him cultivate his most meaningful relationships.

You come and visit us in far away Chicago and are infinitely patient with our other kids. You make them feel like a million bucks and like they are special-look at all these guys who love them! Who play with them! They are special because of Dovi's FD.

I said at Dovi's Bar Mitzvah that because of Dovi having FD we have met people that we would have never met. I was talking mostly about you guys and the life and joy that you have brought into our lives.

You have changed our lives. You have brought joy and brightness where there is darkness. You cannot imagine the impact that each and every one of you have on us.

I know it's hard. I cannot wait to hand Dovi off tomorrow and get a break from the endless meds, treatments, and feedings. I do it with love because Dovi is my son. You do it with love by choice. This is how you choose to spend your vacations, your free time, and your days. It truly boggles my mind. When I was you age, well when I was all your age Dovi was 3, so let's backtrack to when I was in high school, I was spending my days at the mall and chatting on the phone. What you do by choice has changed our lives.

I know that sometimes it becomes unbearable, when a child is lost. And you guys have been hit four times now in three weeks. It's hard, so hard. I cannot imagine dealing with this at your age. It must be tempting sometimes to walk away, to protect yourselves from the pain. I would. It's unfathomable. But know, please, in your heart of hearts know, that what you have done for Dovi, for our family, for all the kids and their families is the most wonderful gift you can give a suffering family.

Our appreciation and respect for all of you is boundless. Thank you from the bottom of our hearts.

Monday, January 3, 2011

Because I know you all love it

here is a fun couponing post.

Yesterday, Shosh and I got in the saddle again. She had a better excuse than me-she had her cutie patootie baby. I have just been lazy recently (OMG I spent $83 at Jewel on Friday. Excuse me while I go faint and vomit simultaneously)

There are some nice deal this week (hello Chobani for $1!) at Dominicks so we got ourselves organized, clipped our coupons, and headed out together. We looked like lunatics in the aisle-we literally had our coupons spread out over some shelves getting organized before checkout.

Yes. We've seen the Extreme Couponing show on TLC. That lady with the wall of toilet paper that makes her feel joy? A whole lotta crazy. The lady in the dumpster with her son? A whole lotta irresponsible. No. I've never gone into a dumpster. I will pay the $1 for the coupons on eBay.

OK so back to our grand re-entry to the coupon universe.

I spent:

$34.63 of my own money
and $17.78 on a prepaid debit card that I got for a rebate so I'm not sure I'm counting that.

I got:

10 boxes of Natures Valley Granola Bars
12 boxes of Morningstar Farms veggie products
2 bags of pretzels
1 bottle diet Dr. Pepper
2 bottles Cascade rinse aid
18 eggs
1/2 gallon chocolate milk
1 huge bottle coffeemate (Peppermint Mocha, only the most divine flavor ever created)
2 gallons milk
1 box yogurt tubes
2 chobani yogurts
1 kids' body wash
30 boxes of fruit snacks (Gushers, fruit rolls, etc) - hey all my Dominicks friends. Go to Dominicks. Buy 5 boxes of fruit snacks for $4.95. You will get back a $3 Catalina coupon at checkout, so it will be like you paid $1.95 for 5 boxes of fruit snacks. And yes, there are printable coupons out there for said fruit snacks. But even without coupons? Awesome deal.

So that is 66 items for around $50, or $34 if you don't count my pretend money. And I still have a $3 Catalina in my wallet for a future purchase

I'm contemplating taking everything out again and taking pictures of the haul. But then again, I'm kinda lazy that way.

So I'm thinking not.

But it's good to be back!