Not your typical parent/teacher conference

Posted on November 21, 2014 by mommabear0208

Today was my first parent/teacher conference! I feel like I went through a rite of passage and am now REALLY, fully an adult.

The meeting was only supposed to be 20 minutes long. But when there are 14 people in the room, all of whom have something to report, that timeframe becomes a joke.

And I’m not exaggerating. 14 people were in the room – therapists, psychologists, social workers, paras, parents. Each and every one of these people discussed how much potential L has, how very smart she is, how sweet and loving she is.

Turns out she creates a bit of crowd everywhere she goes at school – and not just because she is rarely without at least two adults by her side throughout the day. Kids flock to her – they want to hug her, help her, play with her. Young children are drawn to her. I’m not surprised to hear this as I see it happen everywhere – at the laundromat the other week, two girls started following Lily around as she wandered aimlessly from washer to dryer and back again. They wanted to touch her hair, sing to her, interact with her. Lily loves this kind of attention. And she usually reciprocates the hugs and kisses.

This kid is walking love. Pure and simple.

Back to the parent/teacher conference where we discussed all things Lily. The therapists informed me of her progress, of her ups and downs (which are constant, unfortunately, and part of what is expected of her diagnosis), of her struggle to communicate, her struggle to sometimes swallow or walk a straight line or climb a stair. But she’s a trooper and even though she may be frustrated and/or tired, she tries and tries. I updated everyone in the room on the numerous doctors appointments we’ve recently had – what the swallow specialist, neurologist, Rett specialist, dentist, and gastroenterologist had to say about sweet L.

And we were only supposed to meet for 20 minutes?! Ha. We were in there for an hour and a half and could have kept going.

I walked away from that meeting confident that my sweet kid has a loving, supportive, hard-working and extremely knowledgable group of people teaching her. And felt so grateful.

Pizza!

Posted on October 18, 2014 by mommabear0208

As many of you know, my child is highly motivated by food.

Well, when she started preschool, I was faced with a dilemma. The school has pizza Fridays and Lily’s diet is so restrictive (she’s on the GAPS diet for those unaware), that pizza is a BIG no-no for her. Her dad and I both hemmed and hawed it for a while but agreed that it would be a great experience for her to fully participate in this sacred meal. She is VERY curious about what other people are eating (oftentimes, after she finishes her dinner, she starts to pick on mine) and she has so many restrictions in her day to day life that giving her this one – easy – thing would help her feel more of a part of something, rather than being on the sidelines – like she is with so much else.

So pizza Fridays have begun. Here is an excerpt regarding the first pizza Friday from the communication book her teachers and I pass back and forth each day:

Lily LOVED pizza Friday. She ate consistently for a half hour. Lily loved it so much she was saying ‘give me’ and ‘more’… I was so proud of how much she was talking.

Miss Susan (her teacher)

Lily said more words in one day than she has in an entire month!

So, yesterday was Friday and she didn’t have school so I decided to take her out for dinner and we had pizza! Again, she loved it. Again, she said more words at that meal than I had heard throughout the week.

I wish every day were pizza Friday!

Fresh meat

Posted on October 14, 2014 by mommabear0208

Lily + preschool + germs = a very sick kid.

Within the first month of school, she had to stay home three separate times because she was ill.

Fevers and stomach bugs seem to be her thing.

She most definitely is fresh meat, a phrase I am borrowing from my cousin Miriam. It perfectly describes my sweet Lily. For the first 3 1/2 years of her life she didn’t spend a lot of time with other children. She was so busy with one on one therapy (30 hours a week of it) that she was shielded from many of the germs that children pass on to each other.

Not any longer. She is making up for lost time.

The heartbreak I feel as a parent not knowing exactly how to console her, not knowing exactly what is wrong is indescribable.

I know she wants to tell me that her head hurts her, that her tummy hurts, that can you rub my back mommy? But those words don’t come out. So I have to act as a mind reader. And I do the best that I can but I’m always second-guessing myself and I’m always feeling like I’m not doing enough for her.

Today we both stayed home from school and work. Both of us are sick now. But I know we are on the mend and our immune systems will bounce back and be even stronger going forward.

Love,

C and L

Talking tools

Posted on August 26, 2014 by mommabear0208

So…. it’s been quite a whirlwind lately. Boxes and Ikea runs and back and forth to Montefiore Children’s Hospital (me, thankfully not L)… the summer is slipping by.

But so many good things are on the horizon. Tomorrow is the big move. My dear friend Michael is orchestrating the move for me (and he’s handled my kitchen renovation as well). He’s been a godsend. And he’s packing us off for a few days so he can settle the apartment for us while we take a mini vacation to the burbs, courtesy of my cousin Miriam!!! How lucky are we?!

So, why have I been back and forth to the Children’s Hospital? Well… the first visit was to take a workshop with Lily’s new speech therapist who is specializes in teaching girls with Rett Syndrome. I knew she was kind of a rock star, but I really had no idea how much of a rock star until I took this workshop. Lily is going to be in such great hands. And she’ll be communicating with us (and I mean REALLY communicating) in no time at all.

The second trip to the hospital was to get trained on how to adminster testing to Lily via eye gaze tracking ‘games’. I was put in touch (via the rockstar speech therapist) with a neuroscience team at Cambridge University, in conjunction with the Einstein School of Medicine, who are working on cutting edge communication and cognition tools for infants and toddlers with language impairments. So, for the next few days, while we are on vacation, and then settling into our new home, I will be running code and taking time based on Lily’s interaction and interest in these games. Which means that I’m carting approximately $50,000 worth of machinery around. But Lily, and the machinery will be in good hands.

What they’re hoping is that the findings from Lily’s and other Rett sweeties results, the team can get further funding to expand their program. What I’m hoping is that Lily will sit still long enough to provide meaningful results!

Never a dull moment.

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