Settling in

There is so much to say...but this is not that post.  This is just a howdy do, we-haven't-fallen-off-the-planet post.  We're settling in nicely and hosted our first little family dinner here lastnight.  The ribs were a little tough, the boys didn't like the watermelon salad (the girls did tho!), Nestor thought the mac&cheese was gritty (from the parmesan) and the monkey bread took an extra 25 minutes because the oven got turned off...but that's ok!  We had a wonderful meal and everyone -- friends and family have been as generous and helpful as anyone could be. 

So far we're not missing NYC.  The friends and family there...YES! But the lifestyle and teeny tiny apartment...NO!  We are truly living the california lifestyle at it's finest.  We LOVE our house and we have a wonderful nurse, Patricia, who is remarkable with Amelia.  She has worked with lots of kids like Amelia, accompanying them to PT and OT -- therefore, she implements a lot of the techniques she's learned with Amelia each day.  It's wonderful.  They have "school time" where she works on OT and colors/numbers etc. techniques.  We are so lucky to have found her!

I've been working with Amelia with colors too and she's really getting better at sorting her colored boxes. I'm constantly amazed by her.  Today, I showed her pictures of her toys and asked her what she wanted to play with.  I was pretty sure she wanted her sorting boxes, but gave her 4 photos to choose from off the velcro board.  She chose her shape sorter...I was a bit surprised.  When I went into the other room to get the toy, I came back to find that she had put the picture of her shape sorter back onto the velcro board and had taken off the photo of her sorting boxes!!!! I was SHOCKED!!!!  She is so smart and it is so exciting to see her doing things to help herself communicate!!!!

Here are some quick pics I just took to give you a sense of this place.   I'll get more inside the house as we get the pictures up and order a dining room table!!!! 

Amelia enjoying her lunch!

The deck

 The backyard and back of the Guest House

  This is what I see when I wake up each morning

The front patio with jacuzzi

I LOVE NY

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.

Finished!!!!

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:

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. 

The Big Move

 My Mom and I changing Amelia's major diaper, on Mother's Day, out the back of our SUV in the parking lot of a diner in Phillie.  Nestor snapped this without our knowledge...obviously!  Hilarious!!!

We're really doing it!  We're moving to LA.  All the gears are in motion and it's happening.  We are in escrow (and love) with a home in Woodland Hills.  It's charming and we couldn't be happier.  It has a woodsy feel to it which we are very drawn to.  I think we'll be very happy there and I know Amelia will love it.  She's going to have her very own room.  I've been going crazy looking at furniture, paint and accessories (I want to get her one of those little chandeliers from Target and a cozy chair we can snuggle up on and read books...or have a lazy breathing treatment in the middle of the night)...so fun!  I think we're going with a very pale pinky peach color and a shabby chic kinda thing.  Of course the bed is the main focus.  Amelia's been in a crib and now she's going to transition into a big girl bed.  Of course, that's been a bittersweet point for me because it's going to be an adaptive bed.   Our friends have a sleep safe bed which they love.  We went there to visit them and I was happily surprised to see how nice it looked in real life, as opposed to online.  However, at the end of the day, I WANT A PRINCESS BED FOR AMELIA!!!!!  So we're just going to have to adapt Amelia's adaptive bed into a princess bed.  That's all there is to it!

I'm still sorta in a calm denial that our life is about to change dramatically.  We sit on the phone and talk to people out in LA -- making plans, getting referrals, planning for "when we get there" without the reality that this is ACTUALLY HAPPENING.  I think when we actually start to roll up our sleeves and get down to the business of throwing out, donating and packing up, it'll hit us!

One of the many major changes for me will be making real grocery lists.  I make them now.  Puny ones.  Ones that are sufficient for a day -- but in the 'burbs, there's no "daily" lists.  In NYC, if I run out of milk or forget eggs or decide I want to make cookies...I have hundreds of places (well, maybe not hundreds) less than 20 feet from my front door to go get whatever my heart desires at whatever time of the day or night I desire it.  That little party is over.  I better start practicing the fine art of figuring out what I need before I leave to go to the store and not just trying to remember what I need when I get there.

Also, when Amelia comes home from school on a beautiful day, I throw her in the stroller and we hit the streets.   We go to the park and swing, or the grocery store, or to see puppies in the window, or mommy gets frozen yogurt, etc.  Can't do that in LA.  I'll have to pack up, get into a car with her, drive someplace and I can tell you now that the energy in a mall or state park is quite different than the energy in the west village.  

All that to say, we are ready!  Ready for a real house, with real closets and bedrooms.  A place to invite family and friends over to hang out.  SPACE!!!!!  Also, a real backyard with a BBQ, ooh -- and an extra bathroom!  Oh, it will be so nice!

The details have been crazy.   Firstly, we have to make sure the whole house thing even happens -- from personal experience I can say that as sure as you may be about something, there's always that slim chance that something unforeseen happens.  Secondly, we have to sublet our place in NYC, which is well underway and looking good!  Also, we have a POD from our house upstate that we packed up last summer that we need to ship out west and now we have to pack up the NYC apt and get that stuff out there.  Then there's shipping cars and Nestor's motorcycle.   Plane tickets...traveling with Amelia on a plane...transporting medical equipment and supplies.  Then, there's setting up all the new services for her through the North LA Regional Center, CCS (California Children's Services), Medi-Cal, all new Drs. and nurses.  New Team Amelia! 

So the plan is for Amelia to finish school here in NYC at her incredible preschool, Roosevelt Children's Center and then hop a plane out at the end of June and get her into school to start summer session at her new preschool, Sven Lokrantz, by July 7th. 

California here we come!

Among the Giants

Inspiring!



Among The Giants from Adaptive Design on Vimeo.

A Chat at the Park

Today Amelia, Nestor and I went to Bleecker Park as we usually do on beautiful days, after therapy and before her respitory treatment and dinner feeding.  We do the swings...as only we know how and then most times we'll go sit by the sandbox to watch the rascally kids at play.  Amelia loooooves this!  She laughs and plays with her stroller toys.  Jolly good fun.

Today we had a visitor.  Probably about Amelia's age, possibly a little older (like 5):

Boy:  "Does she talk?"
Me:  "No.  Not yet."
Boy:  "Why doesn't she talk?"
Me:  "Well.....her muscles that help her speak aren't strong enough yet for her to talk."
Boy:  he watches Amelia for a moment thoughtfully, then with a proud nod says "You should give her broccoli."
Me & Nestor: "Wow!  That is such a good idea!  We'll have to try that"
Boy:  now beaming with pride "Yeah.  I have a baby sister and she doesn't talk yet either."

At that point we were interrupted by one of the boy's playmates and he was dragged off.  The three of us watched him take off and Nestor and I chuckled to ourselves.

Broccoli.