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:

————————————————–

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

Advertisements

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!

Screw that

 

Running

Running to the Farmers Market with Mommy

Upon further reflection, I’m going to tell the PTs, OTs and the social worker at Lily’s preschool to stuff it.

My kid is NOT going to arrive at school every day (when she starts kindergarten next year)  in her adaptive stroller. Don’t get me wrong, I’m not in denial that she should have one. But she does not need one for school.

#1 concern: They see her arrive in that and they’ll keep her in it. I’ve heard from numerous parents that this is a REAL issue. And even the Rett specialist agreed when I pressed her on the subject.

#2 concern: How will it make HER feel? I don’t want her to get used to being ushered around. I want her to feel as independent as possible. She’s a strong-willed kid. I want to continue fostering that.

So she might be slower than the average kid, and klutzier (which may or may not have to do with Rett Syndrome – if you know me, you know what a klutz I am), but she walks. And she walks well.  And she will continue to do so.

Now I have to figure out how to get her to and from school every day. But I have a year to figure that out. Wish me luck.

Guess who chose these beauties out at the farmers market?

Guess who picked these beauties out at the farmers market?

Impatient

It’s not coming soon enough. The cure. It has to happen. Soon.

Lily’s hand function is worsening. And believe me when I say it’s not from lack of effort (from her part, or mine).

Another blow: I was called in to a special meeting at school last week from Lily’s physical therapist to learn that Lily needs an ‘adaptive stroller’ for when she transitions into grade school. It’s for safety reasons – the bus starting in K doesn’t have the 5 point seatbelt which she will need (confirmed by the Rett specialist when we were in the hospital on Friday).

Imagine this: a small therapy room at Lily’s preschool where her two PT’s, her two OT’s, her social worker, and I (huddled around a kid sized table in tiny preschool chairs) are going through a catalogue of wheelchairs. Fucking heartbreaking.

So you see, a cure needs to happen. And soon. I don’t know if I can handle watching my child get lifted into a school bus next year.