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.

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!

A better than normal life

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.

The bay in Wellfleet

 

The ‘bruty’ of life

A few months ago when I was in London, I had a chance to catch up with a dear friend who has had her fair share of struggles.  Over tapas and red wine, we talked about how life can be both beautiful and brutal at the same time.  Hence, the word ‘brutiful’.  I can’t take credit for this word.  Another mommy blogger came up with it.  But wow – so fitting.  And so true.

The past few years, and especially months have been both of these things – beautiful and brutal.  Every day I watch my sweet Lily and am amazed at how loving and kind and sweet and smart and resilient she is.  And then I get bogged down with her diagnosis – the seizures (she had her very first seizure last week), the fears of when/if other Rett monster symptoms will poke its head out, the struggles she has to deal with on a daily basis.   It is brutal.  And it knocks the wind right out of me.

But then I look at my little girl and shake myself out of my gloom and remind myself that she has so much potential.  And she is perfect.  Just as she is.

I have been accused of being overly optimistic about my sweet angel.  But this is not the case.  I am well aware of the gravity of this diagnosis.  But I refuse to live my life in a state of brutality.  I choose to focus on the hope, the potential, the beauty.

Cousins - one of the greatest gifts from God.

Cousins – one of the greatest gifts from God.

Her second-most favorite place to be; the first being her mommy's lap.

Her second-most favorite place to be; the first being her mommy’s lap.

Feeling grateful, and sad, but mostly grateful…

Hi family and friends,

Sorry for the long silence.  It’s been a very busy few weeks.  Doctors visits, preschool visits, a quick trip to London (just me, not L), and the general busyness of my job and life with Lily… time seems to slip away.

But at least it’s spring!  (I’m going to ignore that it’s supposed to snow on Tuesday).

Lily has been great.  She is going through a really strong phase where she’s not having any troubles holding her bottle, or pulling herself up to stand (which she did twice yesterday on my friend Stefanie’s cushy sofa – I was awestruck).  She’s trotting around (almost running) and going on long walks with her momma through the park.

To many of you this may sound like silly things to be proud of.  But for Lily, especially given her Rett diagnosis, these inchstones* are miracles.  Truly.

(*This is a commonly used special needs momma phrase.)

On March 7th, we met with Dr. Sasha Dujkic, a neurologist who has dedicated her life to Rett Syndrome research and advocacy.  Dr. D spent three hours with us that day.  Can you believe that?  A doctor who spends hours with you, talking to you, answering your questions, explaining to you this complex genetic disorder…. have you ever heard of such a thing?  (Other than my cousin Ann, of course!)

There was so much to take in that day…  I’m still wrapping my head around it.   Will try to share with you the highlights:

  1. An overwhelming majority of girls with Rett Syndrome can’t walk, talk or use their hands in a meaningful way.  Most need feeding tubes and many have respiratory issues.
  2. After Dr. D evaluated Lily, she said that Lily is likely done with the major regressive phase and that she will continue to walk (horrah!) and that her overall health looks great.  There is a list of about 10 specialists who work at the Rett Center (from orthopedic surgeons to cardiologists) and Dr. D said that Lily won’t need to see the majority of them.  HUGE sigh of relief.
  3. I asked about Lily’s specific mutation and if Dr. D could read anything into it (I had heard from other Rett mommas that you could get a better understanding the impact of the disorder on your girl from the actual genetic mutation) and Dr. D said that this is pretty inconclusive.  And then explained that Lily has the more severe form of the mutation which for all intents and purposes would mean that she would have the ‘classic Rett’ (no walking, talking, meaningful hand use) but it hasn’t presented that way with Lily.  Theory squashed.
  4. Dr. D said Lily will likely never talk or write.  This is where the doctor and I disagree.  This little girl is going to talk and she is going to write (you should see some of the art she’s been creating lately!).  Dr. D doesn’t know me…  Obviously.
  5. The big struggle with all girls with Rett, including Lily, is the issue of apraxia.  Whole body apraxia.  What is apraxia you ask?  A very good question, and here is the answer:
    Apraxia (from Greek praxis, an act, work, or deed) is the inability to execute learned purposeful movements, despite having the desire and the physical capacity to perform the movements. Apraxia is an acquired disorder of motor planning, but is not caused by incoordination, sensory loss, or failure to comprehend simple commands. It is caused by damage to specific areas of the cerebrum.
  6. Apraxia impacts everything from her ability to form words to her ability to poop, and everything in between. She has the desire to do it all and actually has all of the ‘hardware’ to do it, but her brain and body aren’t talking to each other effectively.  It’s more of a ‘software’ issue, to use computer terminology.
  7. Girls with Rett Syndrome are literally trapped in their own bodies.  They often have overly intelligent minds. And Lily is  just so smart.  I’m not just saying this because I’m her mom.  Therapists and doctors have said this from the very beginning about her.
    So how do we tap into this brilliant mind of hers?  Well, assistive eye gaze technology is something she was exposed to at the hospital visit, which she took to quite quickly.  My cousin Maria (who graciously came with us to the appointment) told me that within 5 minutes, Lily was asking for blueberries, using her eyes!  Pretty amazing.

Next steps with the Rett doctor – schedule a visit with the following specialists – GI doc (for Lily’s chronic constipation which is typical of Rett sweeties), dentist (she needs a cleaning and they have a dentist on staff there as dental issues can arise for these sweet girls), and speech therapist (to learn more about the eye gaze technology and other forms of communication).  Also Dr. D has offered to speak to the directors of the preschools Lily may attend.  It will be very important for Lily to be in a setting with verbal, social kids.  Lastly, we will have a follow-up appointment with her in 6 months.

In the meantime, Lily and I will continue to learn, giggle and eat lots of berries!

Love,

C and L

Springtime 2014