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.

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.

A correspondence I never wanted to write

Hi Dr. Djukic,

I hope you’re well.

I wanted to check in with you because a few things have been going on with Lily lately. And I think we may need to schedule an EEG to have her monitored.

Two weeks ago she had what I would describe as three Rett episodes in a row. She was present but shaking and frozen uncontrollably, at the same time. If that makes sense.

Last week I believe she had two seizures and they were very close to each other in timing. These look different from the Rett episodes in that Lily wasn’t as present and she was foaming and spitting at the mouth a bit.

Please let me know how you would like to proceed.

Thank you.

Christine Salerno

 

The Impact of Hand Function on Cognitive Development and other things I wish I never knew

I wish I didn’t know:

  • How to apply for a disability parking permit for a child (hint: it’s not easy)
  • That there are no handicapped parking spots in the city of New York
  • What EI, CPSE, CSE, ACC, OWPDD, EEG, and EKG stand for
  • How to fill a syringe with medicine and administer it on your child
  • What a seizure looks like
  • That there was such a thing as a swallow study
  • What depecote, acth, keppra are
  • The difference between grand mal, petit mal and absence seizures
  • How important the MECP2 gene is on neurological function and development
  • That there is such a thing as a car seat for a disabled child and that it costs $1200
  • What orphan drug status is
  • That your heart can break into a million pieces every day but then one smile from one amazing little person can make it all better
  • How to pack for a 48 hour long hospital visit for two people (one of them being under the age of 5)
  • The importance of proprioceptive and vestibular function
  • Bruxism
  • Apraxia
  • Rett Syndrome.

But if knowing all of the above means to know this kid, then I am in 100%.

Lily at CHAM March 2015