December 24, 2012

Words are a gift

Ahhhhhhh just had to share this wonderful gift I got today. Obviously things have slowed down with this old blog which is great in that it's a reflection of the slowing down of medical drama. As our Ben is getting older I've become increasingly conscious of his privacy and have considered modifying this blog, taking it down or password protecting it. But I usually get distracted by life (or can't remember my password for settings here) and haven't actually done anything. 

Just when I was having another bout of blog-privacy-itis Mike and I received an email from a mom.

And as I read her message to us the world stopped turning just like it did on May 9, 2007. She is the first time mom of a little baby newborn with VACTERL Association. We know the birth story, the excitement, the chaos and the world-stopping fear. We relive that indescribable experience just a little whenever we meet a new VACTERL family. We know the endless questions and heartbreaking concerns for his future (and the really dark times of outright begging he gets to have a future). 

As you know we started writing it down. At first it mostly served the purpose of relaying information because we really had a hard time talking about it. Then it became mostly adoration of every little thing he did; much like "normal" parents. And it was therapeutic. And has also served as a medical history of sorts. I even go back and read through past posts when I need to remember what exactly it was this or that doctor said.

Well, here we are years later and we get a gift of words in return. We get to find out that our journey means something to someone else, that our experience matters, and that our words here weren't just self-serving...

(Names changed)

Begin forwarded message:

From: Debbie
Date: December 24, 2012, 4:27:08 PM EST
Subject: Merry Christmas!

Merry Christmas to the Fradin family!

Bob is working today, so I'm at home with Sam baking and packing to head down to my folks tomorrow. As I'm thinking over all the things for which I am grateful this past year I thought of you all. Although, I'd never wish VACTERLS on anyone, I'm so grateful to you and your family for your openness and all the fantastic information- not to mention your encouragements. It was a dark few weeks coming home from the hospital and we did not know how we would manage or what Sam's future would be. I had MANY inconsolable moments as I anticipated that he would not be able to have a quality of life. I knew from my own experience that googling one's sydrome can be a VERY depressing venture---so, I'm sooooo glad that you were open enough to blog about such a personal journey. It gave me great hope!! And not only that but to respond to my MANY inquiries as well. Can't tell you what a difference it made for us. I felt so much more informed at all Sam's appointments. Anyway, I know nothing can make up for all the difficulties that you've endured, but perhaps it is helpful to know that you have given us such hope this Christmas! We enjoy Sam so much every day and sometimes I even forget that he is different. Wouldn't trade him for the world! Anyway, just wanted to voice my thanks to you and your family.
Merry Christmas,
Debbie

If you have a Christmas wish to spare, send it out there to baby "Sam" and his family. :)

Happy Holidays friends! 

December 23, 2012

Library

Ben was jazzed this morning about "building a library"...yep, he's a Fradin!

December 05, 2012

Sunchoke

Yep, this is our kids crunching down on carrots, peapods, and sunchokes with hummus. Sunchokes? Yeah, they were curious why there were "potatoes" on their veggie plate. I told them this is kinda what is in season and available locally at the farmers' market. Somehow I was able to drag out of the fog of mommybrain that they are also called Jerusalem Artichokes. And I couldn't have been more shocked by a pail of cold water in the face than when Ben said, "Oh, so it's for Hanukkah then!"

Bwaaaahahahahaaa! How I love that little mind...