Blueberries and Giggles!

Posted on September 15, 2014 by mommabear0208

It’s been a while, I know. But we’ve been busy ladies. Vacationing, moving, starting school, getting internet finally installed in the new place… the past few weeks have been a whirlwind of activities.

As usual, Lily is taking it all in stride. And I’ve had my fair share of help getting things done. My cousin Maria and friend Jill helped me pack up the old place. My friend Michael completely renovated my kitchen and designed the new place (from living room to patio) to make it feel cozy and welcoming for me and my sweet girl. Miriam and Don (and Maya and Evan) were kind enough to host us on a vacation in the ‘burbs, Angela and Bruce and Peter helped me unpack and set up (and I have to mention that Michael unpacked more than half of my boxes before I even officially moved in). I guess you can say I’m taking it all in stride too, with a little help from my friends!

Lily loves her new home. We were both nervous walking in the door as Michael wouldn’t let me take a peek at the progress. But when we arrived, we were both blown away. I think L was especially excited because he greeted us at the door with her two favorite things: blueberries and Billy Joel’s ‘just the way you are’ playing on the stereo.

Blueberries and giggles and Michael Conti!

L’s first day of preschool went off without a hitch (though the days leading up were fraught with calls to the DOE and the school ensuring all of her paperwork was in place). She was/is such a brave little munchie!

Waiting for the bus! Day ONE of preschool.

And today is another first! She’s home sick with a bit of a cold. Those preschool germs have infiltrated our home.

Still pretty when she’s sick

Cha-cha-cha-cha-changes….!

Posted on August 17, 2014 by mommabear0208

David Bowie knows what he’s talking about. ‘Turn and face the strain.’ And boxes, upon boxes… And sore backs (hence, the strain). And sleepless nights.

But it’s all good. Change is inevitable. It happens every day. And if you don’t embrace it, it can destroy you.

I guess I’m also pretty excited about this new chapter. For many reasons.

1. It somewhat fulfills my wanderlust. Prior to having L, I moved approximately every two years – to a different country, or city. I did this for about a decade. Italy, Switzerland, England, Singapore, DC, New York (this is not in sequential order). Every time I moved, I sucked in my breath, closed my eyes and hoped for the best.

Of course I didn’t. I’m too strategic to be so thoughtless. But there IS a part of the unknown, the new, which is thrilling. And I’m looking forward to it.

We’re not moving countries, or even cities. But we are moving to a different neighborhood. I’m not sure if I can say I’ll miss living in Greenpoint (I always commented that L and I were the only two people in the neighborhood without tattoos). I think our next neighborhood will be a much better fit for us girls. Who knew I’d become a brooklynite?

2. It’s TRULY a new beginning for me and L. Having her with me (almost) full-time, getting to giggle with her almost each and every day… Wow. I don’t think I allowed myself to think about how much I missed her when she wasn’t home with me as much.

3. Lily is starting school! I just read through a bunch of Rett sweetie’s profiles on the site http://www.girlpower2cure.org and it filled me with so much inspiration. Reading about how these girls are enjoying preschool, making friends, learning and playing gave me a boost of confidence about this milestone.

4. I get to throw a ton of stuff out and/or donate it or give it away. There’s something really fulfilling about getting rid of the clutter. It is cathartic. 20 huge bags went to Goodwill. And I’m not finished…

We are moving in two batches. I’m trying to minimize the disruption in L’s life so the boxes are going first (likely this coming Thursday) and then the furniture is heading out on the 27th. This gives L an extra week and a half with her beloved therapists.

I’ll write a post next week about the therapists. These amazing people who have dedicated their lives to helping children, I didn’t even know that this world, that these people existed prior to needing them in our lives.

That’s all for now.

Love,
C and L

Decorating boxes with L’s artwork

Preschool Jitters

Posted on August 13, 2014 by mommabear0208

Below is an email I sent earlier today to the Brooklyn Speical Needs Parents group, which is an amazing support group.

Hi parents,

I’m starting to freak out about my daughter starting preschool in a few weeks. She is preverbal and has a rare disorder (Rett Syndrome) which presents a slew of challenges for her.

Her EI therapists have been like family and they’ve created so many successful programs for her and know how to work with her, challenge her (ever so gently – when she’s in the mood), calm her down, and, most importantly, mitigate her continuous physical and cognitive regressions (one of the many challenges of Rett). We are sad to see them go.

I’m planning on sending the school (WOC Midwood) an overview of her likes/dislikes, things to help calm her down if she gets agitated and an overview of key programs her therapists have been working with her on. I’m going to mail this in with her registration form.

I’m confident with the choice of the school. I’m just less confident about the first few weeks and how she will adjust.

Any advice, tips, tricks that you could share?

Additionally we are moving shortly before school starts so that’s going to be an adjustment in itself.

Many thanks in advance,
C, mom to L (who is likely less stressed about preschool than her mother)

How is it that she’s old enough to go to preschool already?!

Heavy

Posted on August 11, 2014 by mommabear0208

We were at a family party this past weekend and one of my cousins, upon picking up L, commented to me on how big and heavy she is getting. She is growing. Leaps and bounds. And this is a great sign for many reasons – one being that she’s getting adequate nutrition (many Rett sweeties have growth issues, due to feeding issues, and though we aren’t out of the zone of fear on this – it’s a crap-shoot until she reaches about 15 or whenever you stop growing physically – it’s definitely a sigh a relief at this point, for this momma).

I’m going to have to start stregnth training. A very smart Rett momma gave me a piece of advice shortly after we got the diagnosis – she recommended that I start lifting weights as the physical toll of having a child, then young adult, then adult, with Rett, is very real. And I’m already feeling some pain. My left shoulder. My back. My neck. I always say that L is my walking gym. But I do need to invest in myself so I can maintain the physical stamina needed to care for her.

It’s just one of the many things on my to-do list. Actually, it’s not quite on my to-do list. It’s on my ‘once everything from my to-do list is done, I can then start on this and a slew of other things’ list.

What is front of mind right now is moving L from a crib to a big-girl bed. She is outgrowing that crib. But we can’t make any switches until she gets herself settled into our new home. Eventually I’m likely going to put her mattress on the floor and create a pillow barrier around the entirety of it. Oh, I’ve spent many unslept nights thinking about, and researching this. But this is likely not of interest to you, dear reader.

Oh, but back to this big girl – she is so happy and full of joy, and is loving the long summer evenings when she and her momma go on strolls and get caressed by her friend, the wind.