Differently-abled people are still abled-people doing things differently

Posted on November 12, 2014 by mommabear0208

I read the above line while perusing blogs written by people with dis-abilities (primarily autism). I’m always on a quest to better understand my sweetie and what motivates her, what makes her feel comfortable in her own skin, what makes her feel confident.

I remember getting one of the best pieces of advice from Lily’s very first ABA therapist, Ann, shortly after Lily got the autism diagnosis. She told me something along these lines… “Lily needs time to be Lily. If she wants to flap her arms or stim in any other way, give her the freedom to do that. It is a part of her and you want her to feel completely accepted.”

I completely accept my child, stims and all. I see her as an asset – not just to me, but to everyone she touches. She has made my life so much more meaningful. And I’m so very proud of her.

I’m also lucky that she’s surrounded by amazing therapists who see past the Rett and the stims. They all see a smart, sassy little girl with a great sense of humor who loves to be tickled, sung to and danced with. They see a child who is quick to learn, and they realize that there are some days when L just doesn’t have the capacity to do certain things, even though she really, really wants to. I know that one day, she will be able to do anything she wants. She is THAT determined. (So am I.)

Supergirl!

Awareness Raising

Posted on November 5, 2014 by mommabear0208

I was a busy lady in October. Ok, I’m always busy. But October was especially crazy as it was Rett Syndrome Awareness Month.

From articles in the NY Daily News to Facebook posts and participating in the Strollathon with my amazing family and friends, I was on a mission to provide a voice for all the girls who don’t have one. Below are some of the clips I wrote in October about this monster of a disorder.

Facebook Post October 1:

Today marks the beginning of Rett Syndrome Awareness Month. I will try to post daily on this topic.

First post is about my Lily, who developed normally, if not a bit advanced, until she was about 14 months old. Then she started regressing.

After almost two years of getting incorrect diagnoses – from autism to a rare form of epilepsy, we finally got an answer as to what was happening to this sweet kid, shortly before her 3rd birthday.

Lily had so many words for a baby. The words are gone now but I know that they will come back.

Facebook post October 4

Don’t ever again take for granted your ability to hold a cup, use a fork, tie your shoes or speak your mind. These are just some of the things Rett Syndrome steals from our girls.

Facebook post October 5

Team Lily – top fundraiser for the NJ event!!! $10,000+ raised by my amazing friends and family. Thank you all for making this day so special for me and Lily.

FB post October 7

Something to keep in mind about parenting Rett Syndrome or any other developmentally diferently-abled sweeties, these kids give us just as much joy, if not MORE joy, than the neuro-typical child. We parents of special needs kids revel in every inchstone they accomplish. We are their cheerleaders, their advocates, their biggest fans. I’m truly amazed – every day – by my sweet little girl. She is so strong, so kind, so smart. It blows me away.

FB post October 11

Girls with Rett Syndrome work HARD. Physical, Occupational, Speech, Behavioral, Augmentative – you name a therapy, Rett girls rock it. Lily goes to an all-day preschool where she receives numerous therapies throughout the day. And as that’s not enough, she has after school therapies from 4-7pm – every day. She’s the hardest working 3 year old I’ve ever met. And she does this all with joy and grace (well, most of the time at least). Here she is below, working with her OT, Lynda… Lily and Lynda

FB post October 16

Rett syndrome is spectrum disorder – some girls are only mildly affected. But most girls cannot walk, talk or use their hands in a meaningful way. My Lily walks (and even runs), has some language (which comes and goes) and some hand function. I guess you would say her symptoms are on the milder side of the spectrum. But it is still devastating.

FB post October 26

The odds of having a child with Rett Syndrome are 1 in 10,000. The odds were the same for you as they were for me. What does 1 in 10,000 mean? It means a girl with Rett is born every 90 minutes. It means today alone 16 girls with Rett will be born. And most of their parents won’t begin to suspect something is wrong until sometime between April 2015 and April 2016.

Let’s find a cure for this monster.

FB post October 27

Parents and researchers (now) know that most children with Rett Syndrome have greater receptive language (what they hear and understand) than expressive language (spoken language). Parents consistently report that their daughters understand far more than they are able to communicate. They see their girls laugh appropriately at jokes or things which happen to other family members. They see her eyes briefly turn toward something being discussed or a movement in response to a question.

Here are pics of Lily in which she’s telling me – with her eyes – to ‘keep singing Mommy!’ in photo 1. Photo 2 is her ‘saying’, ‘phew, I’m glad you’re singing a song I like.’

FB post October 28

Rett girls know how to keep their parents busy. At last count, Lily currently has 9 different therapists, a one-on-one para-professional (to help her at school) and at least 12 specialist doctors. Tomorrow she is seeing a swallow specialist. Next week she has a follow-up with her neurologist. And the week after is her check in with the Rett specialist. All of this is on top of her daily therapies and school activities

FB post October 30

Every stage of development brings a new set of health issues and concerns for the Rett girl. From loss of hand function and scoliosis to everything (I mean everything) in between, it is a never ending feeling of worry and anxiety for their parents.

Click here to see the 4 stages of Rett. Warning: It is not an easy read, especially if you have children.
http://www.rettaustralia.com/about-rett-syndrome/what-are-the-stages-of-rett-syndrome/

For those of you on FaceBook, apologies for the redundancy. For those of you who aren’t, I hope you found this enligtening.

Lastly, here is my pumpkin on Halloween. She may have Rett Syndrome, but Rett Syndrome does NOT have her.

It takes a village

Posted on October 9, 2014 by mommabear0208

I just wish the village in this photo lived a little bit closer to me and L…

This past Sunday, friends and family from all over the country joined me and Lily – and countless other Rett families – to raise awareness, and funds for Rett Syndrome. I kept telling people this was like the wedding reception I never had. Except it wasn’t a wedding reception. And we came together for something I wish never existed. But wow was I glad we came together. There was so much love. So much laughter. So much acceptance.

I was overwhelmed. Lily was overwhelmed. We both cried that day. For different reasons. Though L loves the outdoors (you should see how she stares up at the leaves on the trees during our evening walks), I think she didn’t love the crowds. And wow, our family is a crowd. So she needed a lot of consoling throughout the walk. She cried a bit. And sometimes, when she’s overwhelmed, she falls asleep.

For me, the tears came from seeing all those Rett sweeties, knowing full well the struggles that these girls, and their families go through, the fears that I have for Lily’s future, the loss of what I thought Lily’s life would be like. But there were equal amounts happy tears – family reunion! There were people there that I hadn’t seen in YEARS. People who flew in from Florida, drove up to 6 hours to be there. For me. For Lily. For us.

Thank you all.

Sending love,

C and L

It’s my party and I’ll sleep if I want to.

Team Lily NJ Strollathon 2014 – Top Fundraisers!!

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

A better than normal life

Posted on July 15, 2014 by mommabear0208

In my world, life these days is far from normal.

Last week, Lily and I went on vacation. It was the first real vacation this sweetie pie has had in well over a year. It was such a treat, on so many levels. Spending an entire week straight with my daughter is a rare occurrence. Not having my daughter at home with me every day breaks my heart. But I can’t walk around heartbroken. It won’t do either of us good. So instead, I cherish every moment I have with her. Better than normal.

We started our vacation in New Jersey with our cousins and then drove up to the Cape to spend the week with friends. Perfect weather. Perfect company. Amazing hospitality. Getting handed a hot cup of coffee every morning, not having to think about what to eat for lunch or dinner (wow, did they feed me well) and hanging out with Lily so that I could swim a few laps – this is what I call luxury. And love. We were both so loved and cared for that week. Better than normal.

I told myself before we left for our holiday that I would NOT stress out about the upcoming apartment hunt, that I would not check my work email, that I would not worry about the future. And you know what? Looking back, I did a pretty fantastic job of not worrying about any of these things. But this is mainly because everything got trumped by one big, scary event that happened on the day we were driving up to the Cape. My mother fell gravely ill while on vacation in Italy and had almost died.

Even as I write now – a week later, my mother is still in Italy, in a hospital. Thankfully she is recovering and has finally been able to eat something today. My sister (who was in Italy with her) has been taking great care of her; my brother Matt is heading out tomorrow to take over. And me? Well, the guilt I feel of not being able to drop everything and go over there is palpable. But I am doing what I can from here. And once I find us a new home, I’m on the next plane to Italy. (I may dedicate my next post to the soul-sucking experience of apartment hunting in NYC.)

But this post is about a better than normal life… So actually, it’s amazing to me that my mother – the fighter that she is – survived. It’s amazing to me that she is getting better day by day. It’s amazing to me that she has so much love and support from her family and friends.

What else is better than normal? Watching my silly Lily run and giggle up and down the beach at the Cape while making friends with everyone she came across, and knowing that things could have been very different for her.