Tuesday, January 6, 2015

Sun and Moon....and Bow.

This morning we learned of another baby that passed from Cardiomyopathy. It felt like a punch to the chest joined with a weight pulling you down deep into the worst parts of the 'what if' darkness.

Then I remember that there are other things to focus on, deep breaths to take and pictures to share that can bring me back to the here and NOW.  I am holding that Mama and her family in the Light and remembering to celebrate the Light that shines on us now.



It's kind of a seriously amazing Light.
Check out what Simon started yesterday.

Kung Fu and Destiny Arts!

He started even before he got his belt on!





White Belt and Power bracelet


I suspect that he wanted me to stop taking pictures




Kick!


60 minutes of amazing focus!



Learning the bow





Fighting the Dragon!

 Duck!












I can't help picturing...

We have come from this ...................................................................to this.

Thursday, January 1, 2015

Do You See What I See?

Most nights when I am putting Simon to bed, there comes this moment. We begin with him lying on his back and me to his right lying on my side. After the books have been read and the music has been turned down to *fall asleep to this* level, I will think he is asleep and get ready to leave.  He will turn over on to his side facing me and find some part of my face or head to stroke. Tonight it wasthe newly shaved back of my neck.  When this happens I think over and over again *ohhowIloveyou, loveyouloveyouloveyou*

There is nothing sweeter than this moment. It's so simple and elemental.  Everything from the day or tomorrow fades quickly and quietly away and there is nothing. Just my son touching my face or head letting me know in no uncertain terms that I am his.  I am almost sad that there is never anyone around to witness this. It would be hard anyway with how delightfully dark his room gets, but I still sometimes wish that I had someone to witness this and remind me of it later.  Sometimes.  Other times I know this is one of those memories that will last me a lifetime and come in handy when things are a little more complicated.

Like most of the time.  

We are just a few days away from surviving yet another Winter Break, or as I like to call it, no break at all with a healthy dose of chaos thrown in to an already very full and mostly unpredictable life.  We had 3 Chanukah parties in three days, a trip down to Santa Cruz for Therapeutic Horseback Riding camp, a lovely Christmas Eve party, quiet Christmas morning with a Dim Sum lunch, Mamaw sleep overs, PopPop visits from NYC, Aunts and Uncles and Cousins visiting from L.A., more sleepovers with cousins and PopPop, swimming, playing, toys strewn about and movies attended (Big Hero 6 3x!!)

It's busy and joyous and loud and frenetic. It's also full of lovely quiet books read, and walks down the street and hands held.

For those of us with kids with the Special going on, it's also sometimes really really hard.  For Simon and I it's a huge change in routine and support systems. School is on break, ABA therapists go home to celebrate with their own families, therapies are on hold and there are expectations and comparisons as prolific as the pine needles and dreidls that litter the living room floor.  The last two are mine, all mine.  I don't know about what goes on in the minds of visiting relatives or even strangers at holiday parties. 

What I do know is that it's delightful and heart wrenching to watch my 6 3/4 year old connect so beautifully to his newly turned 4 year old cousin (while imagining that the next time we see them, he will have developmentally surpassed my son). 

 It's the tension between hearing over and over again how amazing Simon is doing and watching him need to disappear from social gatherings because they are too crowded. It's exhausting hearing the same out of context call for distress ("you will be arrested" or with his hands buried in his head "I died") when he needs some help or is overwhelmed but at the same time being able to read to the aforementioned cousin while sitting on the couch.

And what do other people see? They see an engaging, charming, very handsome and sometimes very witty little guy that really loves to engage. He talks non-stop. He's mostly easy going and he really really loves attention.

*cue the very small violin right about now*

It's hard to have the child with special needs that talks a mile a minute but can't have more than a 2 count back and forth with you. It's hard to have your almost 7 year old play so beautifully with your 4 year old nephew and immediately see that it's not going to stay that way for long because your nephew is not going to be able to hang for much longer with the delays. It's really not fun getting to a party and needing to sequester yourself with your son 90% of the time because the typical way that the other kids are playing is out of the realm of possibility for your kid. It's both amusing and heartbreaking to see your child get into opening presents for the first time and obsess over the Nerf guns that he got but can't work them correctly because of fine motor skills and attention to instructions.  It's the pat on the back that I can give myself for being that mom that fosters the costume play long after Halloween has ended and but realizes and then forgets the toileting issues that come with Velcro down the length of one's back, delays in potty training, and Simon's inability to ask an individual for help.

It's all of these things and more when we maneuver our way through those two long weeks of vacation. What do other people see? I don't really think about it that much outside of winter break, but it does bring up hard feelings around invisibility and isolation. And I know the grass is always greener and if your child is non-verbal or has different mobility issues, I hear you.

We have a friend whose slightly older daughter has just begun asking the "why am I different?" questions. They are so brutal and wonder-full to work out. The fact that she is asking them at all speaks to an awareness that will both weigh heavy and serve her for the rest of her life.  I do not know that Simon will ever have that awareness.  He is so clearly sure of who he is and barely bothered by the moments when he bumps up against systems, peers, or places that don't easily accommodate.  He was hurt when those boys at Hebrew School didn't want to play the ways that he plays.  He cried hard. He couldn't tell us why but he had the feelings. He was bereft when the Walking with Dinosaurs Live show was over. He couldn't understand why he couldn't watch it again and again and again.  And with both situations, he moved through it with a resilience that I would give my left blinker for.  

Still, there is something that's missing in his ability to connect; in his ability to integrate material, people, places, and events that keep him somehow disengaged or at least it seems that way.  And then all of a sudden he reaches out and draws you in.  He does it when you least expect it and sometimes when no one else is there to witness it.

 I think he takes great delight in his life. I see him as a happy child, one that is grounded and loved by a vast community of people. I see him for his complicated and ever changing self. I see him as unique. I see him as challenged and struggling in a world that is too often looking for the easy/fast way to keep turning round. I see him confused and frustrated and just beginning to wade into some kind of pool of curiosity about the world around him.  I see him.

So when he reaches out to touch my cheek or neck just before he sleeps, I don't mind the darkness or lack of witness. I actually love this vacuum that I get to breathe into. It's such an important 'other' time. For both of us.



Spidey Rides the Mountain Lion



Hang On Tight Mommy!


Just another night of ABA at our house


Friends

Simon Loves him some Sommers!



Protesting and Learning


Reading to cousin Charlie


PopPop in the House!!


Getting Ready for Dim Sum Christmas!


Simon's first real dog love Walter!


Mommy Love


How we bring in the Light!




PopPop and the Grandchildren



Look at that Face!


Family Photo



YouTube is mesmerizing


Taking a break post Little Farm



PopPop is super comfortable!


and a great reader!


Warriors!




Yoga at our house


Cousin love affair


Happy New Year to you all!