Teeth grinding, spitting and yelling oh my…

I did not want to be a mommy today.  Today I wanted to sleep in, sip my coffee while reading a book and maybe go for a run in Prospect Park.  But that’s not how life works, is it?

Instead, my alarm clock (i.e., Lily) woke me up at 5.45am, on a Saturday.  I shuffled into her room half asleep and put the computer on her bed for her to watch a movie so I could shuffle back into my bedroom to snooze a bit more.  Don’t judge.  And if you are judging, don’t worry.  It didn’t work.  Lily watched her movie for about 15 minutes and then scooted out of her bed and came looking for me.  Of course I obliged.

She then yelled at me for a good 5 minutes while I was i the kitchen preparing her morning smoothie.  I wasn’t going fast enough for her (as usual)…

Finally after two large bottles full of smoothie, she cracked a bit of a smile.  She’s a temperamental one in the mornings…

Anyway, we had a LOT of time on our hands and so I decided to do a Home Depot run.  I figured it would be relatively empty given that it was 7.30 on a Saturday morning.  I was mistaken.  But thankfully she was a trooper and we found blue flowers!!! to plant in our container garden and a few other things.

When we got home, I unpacked the car.  Living on the second floor of a walk-up has its downside; hauling bags of soil, dozens of flowers, a ginormous package of paper towels and a 33 lb kid up that flight of steps was exhausting.

Once we got settled in, we went out to the patio and she helped me pick rosemary so I could start preparing her lunch: rosemary chicken with fingerling potatoes and rainbow chard.

Blue flowersAround 10am, Lily looked sleepy so I put her down for a nap.  I should have put myself down too but instead I did some major gardening.  I was inspired by my child, who last week told two different people (via the Tobii) that she wants to plant blue flowers on the patio!!!!  Dammit there were going to be blue flowers!

Just as I was about to take a break from gardening to nap, Lily woke up.  It was getting close to lunch time anyway.  And her occupational therapist Katherine was going to be there soon (she was doing a make-up session).

While Katherine worked with Lily, I did more gardening.  I was on a mission.  And once Katherine left, I had Lily help me plant the last of the blue flowers.

Cool kidI failed to mention that all day long Lily was spitting, teeth grinding and yelling.  I’m getting used to the teeth grinding and the yelling but this spitting thing is new.  And it’s messy. I guess it’s a good thing I got that 10-pack of Bounty.

Anyway – all of this to say: it was a long and tiring day (a lot of it was self-inflicted I realize) and regardless of the exhaustion and not wanting to be a mommy, I still managed to have a fun time with my kid.  She’s just so cool.

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When Plan B fails

Last week was one hell of a week. You know those times where everything happens at once? Like your kids stomach issues flare up to a point where you think you now have enough training to become a midwife. Or your kid isn’t sleeping through the night. And it’s the week that you’ve been invited to the board of directors dinner (a bit of an honor at work) and you’re doing your annual 7:30am presentation to them the following morning. It also happens to be the week that your ever reliable and flexible nanny is on vacation… And your nanny back-up plan fails miserably.

Maybe you haven’t had these exact experiences but possibly you’ve experienced something similar. You know, the stuff made for heart attacks.

Well, I thought I got through it all swimmingly well and that my presentation to the board was a success. According to every person in the room it went really well; except my boss didn’t think so. Whomp whomp.

Of course my boss, who knows me the best out of everyone who was there, saw that I wasn’t at 100%. And she asked me why.

I had a choice to make. I could either have brushed it off to just having the jitters or I could have told her about the hell I was dealing with regarding the previously reliable back-up care program that the Company provides. I chose to tell her the truth (or at least most of it; she didn’t need to hear the traumatizing details about my child’s constipation).

But it frustrates me that men rarely ever have to deal with the challenges that I – and other working mothers (single or not) – face in order to be able to show up to work each day. And I know that this is holding me back. And it makes me want to scream.

If you’re interested in knowing just how badly my plan B failed, read the letter I wrote below, at my boss’ recommendation, to the woman who manages the relationship with back-up care program at my office.

I realize now that I need a plan C, D and E. Any suggestions or advice would be most welcome.

Hi A,

I want to give you some recent feedback on the back-up care program.

When I used them last year, I had a fantastic experience.  However this year proved to be a disaster.

Not only were they slow to respond to my initial request regarding finding an in-home caregiver for 4 days even though I gave them over a week’s notice, but they also made numerous other mistakes and mishaps:

*  They did not cancel the caregiver they initially provided me with when I requested a cancellation.  The woman showed up at my house!  (I had cancelled this woman as she seemed dismissive of my daughter’s significant special needs and also because she came across as absentminded when I spoke to her on the phone the evening before she was scheduled to come).  I then had to work from home on the first day I had requested a caregiver to work.
*  When they did find a replacement for the three remaining days, I never received a call from the new caregiver.  I called the back-up care service twice on the evening before the service was to commence (May 19th) and was assured that the caregiver would call me in the morning.  When I didn’t get a call from the caregiver the following morning, I called them again.  I was glad I was persistent because the agency who was placing the caregiver never got in touch with the caregiver to confirm the job.  It was 1.30pm when I found all this out and my daughter was due home from school at 3pm.  Note that it sometimes takes me an hour and a half to get home.  Thankfully the caregiver was notified and arrived at my home in time to care for my child.
*  This caregiver took care of my daughter the evening of the 20th and the morning of the 21st so that I could attend dinner with the Board of Directors and then present to the Board’s CR Committee the following morning.
*  Today was going to be the last day in which I needed a caregiver (thankfully the nanny is coming back tomorrow) and I got a call from the back-up care program last night at 8.45pm notifying me that they had to change caregivers as the person who had initially taken the job (and had already cared for my daughter) couldn’t make it.  So I cancelled it.  I now need to leave the office early again today to meet my child at home.  It is too traumatic on my child, and on me too, to have to train someone new and list out all of my daughter’s disabilities and needs.

I appreciate that there are sometimes hiccups in the system but this was one hiccup after the next.

Attached you will find the email I gave to the caregiver’s agency which I had already written out the previous evening when I didn’t get the required call from the caregiver.  You will see why it is imperative to have one person, and not multiple (which the back-up care program didn’t comply with) care for my daughter.

I know you are not directly responsible for any of this but I did want you to be aware of this experience.

Please call or email if you’d like to discuss further.

Thanks,
 C

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.

My daughter has Rett Syndrome

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

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

Visiting mommy at work