Saturday, June 26, 2010


It is a week of goodbyes.  I wasn't prepared to feel the way I do.  All of the people who have helped us navigate through this world on the day to day are staying in New York and we are leaving them. 

Thank you:

  • To our wonderful family -- we would never have been able to make this move without all of your love and support. 
  • To our irreplaceable extended family at UCP, NYC -- you have no idea how important and necessary you have been to us and continue to be.  Thank you, thank you, thank you!
  • To our wonderful therapists -- Amelia has grown so much under your guidance and hard work.
  • The most remarkable preschool, Roosevelt Children's Center through YAI -- I cannot thank you enough for making our kids' world as "normal" as possible.  Amelia's principal, coordinators, teachers, therapists, aids, and everyone else that makes that school run are exceptional!  Your smiles and warmth make it a place we will always cherish!
  •  Our amazing nurses and respite workers -- you have given me space and place to breathe.
  • Our doctors who do what no one else can do for our kids and have made sure that Amelia has all she needs to be as safe and healthy as she can be.
  • To Adaptive Design -- for teaching me how to use my own hands to build - whatever I can dream up for my daughter and so many other children, who have yet to "join in" because they just can't...YET. 
  • To our friends -- ALL of our friends.  That's a broad term, because I don't think you can have a team this incredible around you and not consider each one to be a friend.  
  • To our Jozette -- you are so special to us, like a sister.  You slid right in to our family knowing just what to say and do each step of the way.  You are ambitious and intelligent.  I cannot wait to see what you can do!

It's been too much this week.  So overwhelming.  It's a week of lasts for me.  Each thing I do I say "this is probably the last time I'll be  ____________" and it's too much to comprehend. 

On the 16th, Amelia had her Luau prom at school.  So sweet! Each classroom had a different activity in it and the classes rotated, spending 20 minutes in each room.  One room had necklace making with string and paper rings.  Another had Pina Colada making (virgins, of course) where each child got to help put in the mix and then use a switch to make the blender work.  One class had Hula music and the kids played instruments along to the music.  And another had backgrounds, props (grass skirts and coconuts) and even a Hawaiian catwalk where pictures were taken of the kids.  The last one had water tables and sand tables -- you know, so the kids could go to the "beach".  Then all the classes ended up in the gym for dancing!  It was so cute.  Amelia was absolutely pooped by then. 

 beautiful girl!

waiting for the bus

doing the catwalk with Luiza

playing ocean sounds on her keyboard dude!

playing at "the beach"

The Friday of that week, our unbelievable respite worker, Jozette, threw Amelia, Nestor and I a surprise party at our favorite spot, Cowgirl.  We were blown away!!!  She spent a month scheming this thing out.  Inviting all of our service coordinators, former nurses, our other respite worker - Patricia and all of Amelia's therapists.  Jozette even got us a scrumptious cake (on table) from her cousin's bakery in Brooklyn - OHHH!

Juliana (MSC), Karen (MSC), Carol(SEIT), Patricia, Amelia w/ Jozette, Nestor, Keisha (LPN), Debbie, Elana (SEIT) (from left to right) at our surprise party

  And yesterday, Amelia's school, Roosevelt Children's Center gave Amelia and her nurse, Luiza a "Goodbye" party.  Amelia had a really great time.  Her teachers gave her a beautiful photo album filled with her friends, teachers and therapists at school.  We will truly cherish it and look at it often!  Also, one of the boys in Amelia's class gave her a pretty little purple dress from H&M.  Thanks to him and his Mommy too! 

 enjoying a chocolate cupcake. what?

I came to NYC to go to college at NYU.  I was 18 and thought I would conquer it!  Just like every other 18 year old, right?  But what I learned was that I didn't want to conquer, I wanted to be one of them.  I love this city!  The energy, the beauty, the history, the life -- I love it all!  I never thought I would ever leave it.  But 21 years later, I am sitting in my living room, staring out the window with walls of boxes to the ceiling all around me.  I am leaving the day after tomorrow. 

What I am trying to remind myself is (it's hard when you're living in an episode of "Hoarders") that as many "lasts" as we are experiencing -- there is going to be a whole new world of "firsts" when we get to our new house.  A HOUSE!  That sounds pretty wonderful to a girl who has been living in a 600 square foot apartment (with two other people -- along with countless nurses, therapists and others).

Even if it was in the greatest city in the world.

Tuesday, June 8, 2010


Here's the finished product...along with a pic of the little girl who will be using it!!! Awwww.

Mommy in action:

The castle on a sunny day, with a golden path, front view:

The frog prince, side view:

The princess in her rose garden, side view:

Where she stands:

A view from above:

Amelia, the little girl/love of my life:

Wednesday, June 2, 2010

Stander Update

I've been working furiously to complete the stander that Nestor and I made for Amelia at Adaptive Design.  Loving the painting fun part!  Here's what I have so far.

The front with a not-yet-painted castle:

And these are the two sides.  I'm also working on a rose garden around the bottom.  I'll post the finished product including the little girl who will be using it in the next few days! 

It's been remarkable spending time over at Adaptive Design.  Their mission is to provide equipment for every child that needs it.  If you can dream it, they will build it.  I am overwhelmed by their talent and commitment to the community.   I am hoping to create an Adaptive Design community in our new hometown of  LA.   To bring the simplicity and efforts that have started here to another place will be an adventure indeed! 

Due to our economy, they are having a really hard time keeping their doors open.  Please, if you're looking for a worthwhile place to donate any amount of money, Adaptive Design is above and beyond anything I've seen before.  They are building eco-friendly, kid friendly adaptive equipment out of basically "found" materials.  They use Fresh Direct and Whole Foods boxes, Trader Joe's brown paper bags for sealing the edges of the cardboard.  Their tools of choice are jig saws, steak knives, elmer's glue, dowels and sand paper.  Can it be any more simple???????  This is good for our kids, our wallets and our planet.  You can't imagine how strong and durable their pieces are.  And they're not trying to "give you a fish" but are so happy to teach you "how to fish".  They are offering classes as a model to what you can do yourself.  They're happy to make the equipment for you and get paid -- don't get me wrong (and their prices are a fraction of what most adaptive equipment costs) but they would rather see their model expand globally.  

Adaptive Design's fundraising includes "Perch for a Purpose" and "Caring Chairs." Click on the link above to learn more about them.