Scenes from a beach vacation

Holy cow have we been having fun! From the Cape to Shelter Island, Lily and I have been surrounded by laughter and love – from old friends to new.

Here are a few photos which capture some of our adventures. If you want to see more, let me know. As usual, I took too many pictures of this sweet kiddo.

Our first full day in the Cape (with the Bernsteins!) was your typical romantic New England weather: chilly and gray! We spent the day reading books at the beach house and in the library. Hint: the Wellfleet library has an amazing kids section that rivals the old FAO Schwartz on 5th Ave – complete with costumes and stuffed animals.

We also had a lot of fun using the Snapchat filters once all the books were read.

The next day, the clouds parted and we went to the beach. While we didn’t find any mermaids, we did see some seals!

And the following day was more of the same: perfect company, perfect weather and perfect waves! The ocean was too cold for Lily to go in and it was almost too cold for me. But I braved it and jumped in.

The next day, we embarked on the second part of our beach vacation: Shelter Island!! Lily and I had the most fun time riding the Cross Island Ferry on our journey. I think we ran around that big boat at least 3 times. And of course, Lily made a bunch of new friends on the ferry.

We spent a week in total at Shelter (thanks to the Nelsons!!!). The weather was beautiful and the beaches were lovely.

Our first day out there we met up with the Rogers family in New Suffolk to watch the boat races, which has become an annual tradition. This year we had the addition of Elaine, Lily’s SLP and our family friend.

Lily and I took a much needed break from the sun on Friday and met up with Stephen (who came out for the weekend) to ride the carousel in Greenport. We also had the opportunity to see our friends Maren and Ben DeSantis too.

On Saturday and Sunday we hit the beach with the Nelson-Dollar clan. We spent both days searching for mermaids but only found mermaid toenails (i.e. magical looking shells that come in all colors of the rainbow).

And on Monday, Lily and I watched the eclipse, borrowing eclipse sunglasses from our newfound friends. I’m telling you – this kid is super social.

Lily is now on the second part of her vacation – the Poconos with her dad. I’m also on the second part of my time-off – the Sivananda yoga ranch upstate. I’m going to miss my sweetie so much but I’m looking forward to getting some down-time. I’ve got some big decisions to make about Lily and need to process it. Though we had a great trip, her appetite was a big struggle. And even when she was hungry and wanting to eat, it would take upwards of an hour for her to have a meal. It’s not been heartening. But I’m grateful to have had the time to get to learn as much as I can about my kids struggles, and her abilities.

Om Namah Sivaya.

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The Master

imageWhile at my yoga retreat this past weekend, I came across the above maxim.  It immediately resonated with me.  And it got me to thinking….

I recently read an article entitled ‘Pity the Parents of Special Needs Children.’  Almost EVERYTHING written in this article was spot on.  But the title?  The use of the word pity?  Well, that most definitely did not resonate.  Empathy, understanding and support – not pity – are what parents of special needs children want.

That article was part one of a series of articles on parenting a child with special needs.  Supposedly the second article is to focus on the positive aspects of it.  Well, that hasn’t been published yet.  I’m impatient.  So I’m going to write it.  Right here.  Right now.  Here goes:

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Parenting a special needs child is both heartbreaking and magnificent.  There is so much fear, so many doctors appointments, so much bureaucracy.  But there is also so much beauty, joy and laughter. I try to focus on the magnificence of it.

This is not an exhaustive list of all of the magical things that come with this role, and I’m hopeful that my friends who are on a similar journey will help me add to the below:

  1. You learn to focus on what’s REALLY important.
    I’m completely out of the loop on the latest tv shows, music and fashion trends.  I don’t really care.  Things I once obsessed over (like Ferragamo shoes!) are secondary, or even tertiary in terms of what I think about on a daily basis.  And it saves me money, and time.
  2. You learn to be mindful, and fully present.
    Well, most of the time.  We’re all human after all.  But when you have a child with disabilities, you are so very present – while you’re playing with them, when you’re advocating for them, when you’re at the hospital talking to the doctors, when you’re strapping them in to their equipment.  I try to carry this over into my non-mommy time as well.  When I’m at work, I focus on work.  When I’m doing the dishes, I focus on doing the dishes.  And if I start to worry, I bring myself back to the task at hand.  I’ve not perfected mindfulness outside of my mommabear role, but I’m getting better at it every day.  And I’m becoming a better person because of it.
  3. You recognize that each and every day is full of miracles – small and large.
    Or as Albert Einstein so eloquently stated, “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Every day that my daughter wakes up and gets out of bed and runs to the kitchen patiently waiting for her breakfast – that is a miracle.  When she communicates with me through her Tobii – that is a miracle.  When she puts her hand out to caress my face and give me kisses – that is a miracle.
  4. You pay attention to your child and help them foster their interests.
    Here, in New York City, I often hear about parents putting their kids in a foreign language class or ballet – all at the ripe old age of 2 – to help them get a competitive edge for their future.  They’re so busy trying to position their kids for their version of success, that they forget about enjoying their child and learning what their kid is actually interested in.  I, and L’s army of therapists celebrate, and encourage, all of the things she shows interest in.  Whether it’s planting and growing blue flowers, playing dress-up, or reading her favorite books.
  5. You are much less judgmental.
    When I see a kid having a meltdown in the grocery store, I don’t immediately go to ‘that parent is raising a spoiled brat’.  I have compassion.  Deep compassion.  And if it seems appropriate, and I’m able, I offer a helping hand.  Because I’ve been there before, and I know what that feels like.  Practicing compassion, moving away from a ‘me vs. them’ mentality’ makes us feel better as human beings and makes us feel more connected to others around us.   And I think that’s pretty cool.

I am the student.   And I continue to learn.

C

L playing dress-up as Doc McStuffins

L, the Master, playing dress-up as Doc McStuffins

A bit of respite

So… Lily is with her dad for 10 days. He’s taken her to Connecticut (where his folks live). I already miss her like crazy (she was picked up yesterday) but I know I need a break. I need to regroup, sleep, remember who else I am (other than mommy and boss). Last night I went out and had a blast.  And today I’m heading out of town for 3 days to go on a yoga retreat (which I try to do every few months).

The rest of the time she’s away, I’m going to work (arrive on time, take a lunch break and go to the gym after work), sleep, and be social (when I’m not sleeping). I feel so lucky that I have some breathing space. But wow. I’m missing my sweetie!!!!!!

The sweetest!

The sweetest!

Exhaustion

I was brought to sobbing tears this evening on my commute home.

As I was exiting the subway, a little girl (likely around L’s age) and her dad were in front of me on the stairwell. The little girl was singing as she was effortlessly climbing the stairs while holding her dad’s hands. Once they got to the top of the stairs, she turned to her father and said, “Daddy, aren’t you proud of me? I made up that song all by myself!”

It was a sweet, intimate moment that people in crowded cities are privy to overhearing.

At that point, all I wanted to do was get home after a long day at the office.

But there I was, inadvertently eavesdropping on  a ‘typical’ exchange between a daughter and her father. And it flooded me with grief, and jealousy. Not about the father part – that wasn’t even a thought. But about this little girl’s ability to sing and make up lyrics and walk up the stairs. And talk.

I want my child to talk. And to walk up stairs effortlessly. And to sing. And to verbalize her silliness. And to not have to work so hard at everything.

But until that happens, I have to continue working on managing this grief that I carry around with me. It’s always there. And most times, I’m in a strong enough space to not let it engulf me. Lately I’ve been finding this harder to manage. Maybe because sleep has become elusive in our home again or because we spent the weekend with neurotypical kids her age and younger who were doing things I only dream about for L.

Living in a state of grief is not an option for me.  Who wants to be depressed all the time?  Especially when there is so much to be grateful for.  I’m so lucky that my sweet L is healthy and ambulatory and is learning how to communicate through nonverbal means.  So I will follow her lead – when I fall, I will climb my way up and be proud that I made it back to standing.

Retreat

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.

Blue Cliff MonasteryI 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.

Spring Break!

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Our tans are fading but our memories are still strong! Lily and I had the best time in Puerto Rico. She was the perfect resort mate – her goal for the week was to laugh and relax as much as possible. Going for long walks on the beach, lounging by the water, making friends and flirting with boys… This girl was in her element.

I’ve said this before and I’ll say it again – Lily is a social butterfly. I most definitely am not. But I’m so grateful for this sweet butterfly – we met some wonderful people on our vacation – because of Lily. We were treated like royalty – because of Lily. We even got offered a free dinner by a handsome guy – because of Lily!!!

I can’t wait to plan our next beach getaway!!!

A new year, a new start

Even though 2014 was the hardest, most challenging year of my life, it was also a beautiful year full of love and giggles. Life can be brutal. But also beautiful. Sometimes at the same time. I choose to focus on the beauty.

2015 will be a year of physical, spiritual, emotional, and financial recovery for me. And relentless research and fundraising for a cure for Rett Syndrome.  And lots and lots of giggles.

And now… I want to share some articles I’ve been touched by (it seems that some fellow mommy bloggers have been reading my thoughts)… and some good news about a new legislation which will help me save for Lily’s future….

A Cliche

“It could be worse.”  “Somebody else always has it worse than you.”  I think it is so unfortunate that these two statements, essentially just different versions of the same sentiment, have become a cliche. Regardless of their cliche status, I say one or both of them to myself almost daily. Rett Syndrome is bad, I am not denying that, but it could be worse……

…I’ve heard people complain about how much their children talk. I have heard any number of similar gripes come out of other parents’ mouths, but I never say, “It could be worse.” That will invite a look of pity, shame, embarrassment, maybe annoyance. But what I wish is that more people in the world would just remember on their own how good they’ve got it. Read more here.

How I Navigate the Stormy Waters of My Daughter’s Diagnosis

I never really know the cause of the storms. Sometimes it’s just seeing the gap grow between her and her similarly aged friends. Sometimes it’s a phone call from a specialist, sometimes it’s making a phone call to a specialist. Sometimes it’s nothing.  Read more here.

ABLE Act: For people with disabilities, a tax-free way to save

President Barack Obama on Friday signed into law a bill that will allow families with children with disabilities to save for college and other expenses in tax-deferred accounts.  Read more here.

Thank you for supporting me and Lily in this beautiful life.

New Year's brunch with my favorite person!

New Year’s brunch with my favorite person!