Retreat

Posted on May 25, 2015 by mommabear0208

Every few months I try to leave town and head to the mountains. It helps keep me grounded and sane. I haven’t had much time to do this in the past year or so as I’ve been busy with getting Lily the services she needs for her Rett Syndrome, moving homes and settling in, searching and finding the right preschool, fighting the DOE, fighting the bus company, oh, and working full time.

In the past, when I had a free weekend, I would head up to the Sivananda ashram in the Catskills. I have an affinity for Sivananda as I did my yoga teacher training at one of their ashrams near Trivandrum, India in 2008. But I never fully connected with their heavy emphasis on Hinduism, which is a beautiful, but highly complex religion. So many deities, so many rituals, so much Sanskrit!

Also I’m nursing an injured shoulder (or I should say re-injured shoulder) so I wouldn’t have been able to participate in the 4 hours of yoga asana which is part of the daily schedule at the ashram.

But I wanted, no – needed, to get out of town and go on a retreat. I knew there were other spiritual places in the Catskills I could visit. And I remember my friend Wagner (thanks Wags!) sending me a NYTimes article on ashrams and monasteries in the Catskills yeas ago… So I looked up that article and came across Blue Cliff, which is a Buddhist Monastery. It immediately resonated with me. So I booked it.

I’m not new to Buddhism – I’ve studied the religion and have gone many times to the Shambala meditation center in Chelsea. And though I’m not a practicing Buddhist (I’m no longer a vegetarian), I know that in my heart the simplicity of the Buddhist message – developing qualities of awareness, kindness and wisdom through meditation and mindful living – resonates strongly with me.

I found a new home. The drive was less than 2 hours from Brooklyn and when I arrived, I took a 3 hour nap. The Monastery was so peaceful, so tranquil. And the people were all lovely (well, at least for the most part – more soon on that). When I wasn’t sleeping, I spent my time in group meditation, listening to beautiful dharma talks by one of the head monks, did a semi-guided relaxation session as one of the brothers serenaded us (who was an accomplished musician with the voice of an angel) and celebrated the Buddha’s 2559th birthday.

How did we celebrate his birthday? Well – there were numerous activities; my favorite of which was sitting around a bonfire and singing songs (mostly led by the musician/brother), listening to stories and dancing. It was kind of like an open-mic night. And guess what? I recited/shared ‘Pete the Cat’ with this group of awesome people. It has a very dharmic storyline and it’s also participatory so it was perfect for a bonfire singalong with a bunch of Buddhists. The monks loved it!

And the food? Oh the food… I’d easily be able to follow the Buddhist diet (vegan) if just one of those monks cooked for me every day. Wow.

While there, I met people from all walks of life. Young and old, hippie and conformist, and everything in between. And I made friends with so many. Sharing our stories, sharing how we got to find this little oasis of a place; everyone was so welcoming. But I had conversations with two women while there (both were older, likely old enough to be my mother) which keep repeating on me, like a bad meal.

What it whittles down to is this: both of these women – both of them! – said the following after I shared a bit of my story (i.e., being a single parent raising a child with special needs and working full time):

I’m so glad that I don’t have your life.

It felt like a blow to the gut. What I wanted to say in return to them (but I was doing my best to stay open and accepting) was this:

I don’t want your life either.

Instead, I assured them that my life is happy and full of miracles and I choose to live focusing on the positive, on the possibilities. On all the things that Buddhism purports. These women were Buddhists after all, right?

I guess not fully…

And I guess I forgive them; but not fully.

My daughter has Rett Syndrome

Posted on May 18, 2015 by mommabear0208

Up until today, there were only three people – in the past 16 months – who understood the gravity of these words when I spoke them: ‘my daughter has Rett Syndrome’. Two were dear friends who happen to be doctors (though don’t assume that all doctors know what Rett is) and another had a close friend whose daughter has it.

Otherwise, I got a ‘um, wow. that sucks.’ or a ‘I don’t know what that is’ or – for the most part – I didn’t even get a response to an email when I was reaching out to someone to tell them.

I’m not upset at anyone about their lack of response. Rett Syndrome? Huh? What is that?

But today these words ‘my daughter has Rett Syndrome’ brought a stranger to tears.

I was sitting there watching Lily at her Sunday morning horseback-riding class in Prospect Park, proud that she wasn’t having a complete meltdown on the horse (she’s been known to totally lose it on Cinnamon, the sweetest, oldest horse I have ever seen) when a woman sitting next to me asked if the stables were close to Prospect Park. I told her that these stables are in Prospect Park!

I then asked her where she was from, as it was pretty obvious she wasn’t from Brooklyn. She’s from Long Island and came down to Brooklyn with her son to volunteer at GallopNYC through a program with JPMorgan, where she works.

We got to talking about corporate volunteer programs (which is something I know a lot about) and how grateful I was that she, and her teenage son, were here to volunteer to help kids and adults with disabilities ride horses.

Her son was one of the 5 people who were supporting Lily on Cinnamon that day.

So I began to tell her about Lily and I mentioned her Rett diagnosis. She grabbed my knee, started crying and said, ‘I had no idea.’

She was shocked – she couldn’t believe how well Lily was doing. This lovely woman then went on to tell me that she had a niece with Rett Syndrome. Eventually, she told me that she signed up to volunteer at GallopNYC to honor the memory of her sweet niece who recently passed away at 5 years old due to complications from Rett Syndrome (it sounds like it this sweetie had a very severe case).

I think this woman walked away from our conversation with hope – that Rett Syndrome isn’t always the prison sentence it’s made out to be. I walked away humbled, as always, by how well my kid is doing.

And it brought me to tears.

Yes/No

Posted on May 15, 2015 by mommabear0208

This kid keeps blowing me away!

Last week, I asked L if she wanted to come to the office with mommy and she moved her head up and down. I’d never seen her do that before so I asked her again as I was confused. Again, she moved her head up and down. It eventually set in that she was saying ‘yes!’! Holy cow.

And yesterday I was on the phone with one of L’s therapists at school and she told me that Lily not only loves numbers (which I already knew) but that she can identify them and put them in order. How did they figure this out? In her therapy sessions she has a numbers puzzle and Lily would get really upset any time the therapist would recommend starting with a number that wasn’t zero or one. Talk about another holy cow!

I am so very proud of this sweet, amazing, hard-working, beautiful, determined little girl. So very proud.

Visiting mommy at work

‘High Five!’

Posted on April 28, 2015 by mommabear0208

She did it again.

Last night when I got home (it was after Lily had gone to sleep) the nanny told me that Lily did a few really amazing things when she got home from school.

1. Shamekia (her nanny) was reading her ‘Brown Bear’ and using the Tobii/PODD to communicate with Lily when reading to her. When it got to the page ‘I see the children looking at me’, Shamekia said, ‘I see the….’ and Lily finished her sentence by pointing correctly on her Tobii to a photo of children! Unprompted.

2. The other thing Shamekia does is ask Lily for a ‘high five’ after they read a page in the book. Well, last night Shamekia mistakenly said ‘Say high five’ instead of ‘Give me high five’. Well my supposedly nonverbal child called out – clear as day – ‘High Five!’ She’s just so literal.

Shamekia is usually unflappable. But she told me that she even teared up when Lily spoke to her!

“Play it again please!”

Posted on April 27, 2015 by mommabear0208

”Play it again please!”

She said this to me. While we were getting ready for school, and work this morning. It sounded jarbled like when you hear someone trying to speak to you under water. But the intonation was perfect as well as the pitch. And the timing of her request was appropriate (the song was about to end).