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.


Shosh said...


Anonymous said...

so sorry that you even have to write a post like the families who have lost their shining stars, and to the "guys" - my heart is with you.

npl said...

Sara, you have a true gift with words, and I hope that all those who you addressed in your open letter see and appreciate it really soon.
To the rest of us, who don't live with FD or other life-threatening illnesses, I salute you all (family and counsellors) and stand in awe of your selflessness, courage and dedication!

tanya said...

you are an inspiration!

Anonymous said...

FD drules! Can't wait for simcha 2011

Mom said...

Rafi, Yaakov, and all the counselors, advisors and volunteers, you are all amazing! What you do for Dovi and all the children and their families is beyond words. This baubie thanks you all from the bottom of her heart. May you all continue to go M'chayil el chayil - from strength to strength

Mom of 3 said...

Sara -- you need to pull all this together and write a book about Dovi's life to help other families affected by FD. You really do have a way with words and anything you could possibly talk about would be a good read. Beautifully done! XO Renee

Menachem said...

It is people like you who encourage all of us counselors to keep going. Thank you for your words.

MosheD said...

Amazing, inspirational, and touching.

agent99 said...

Oh, Sara. Only you, at a moment of facing your own worst fears, could write such an eloquent message. I have no idea how you do it, but you are more amazing every day.