Monday, July 15, 2013

Will they Know?

Lately, I fall asleep worrying and wake up worrying. I don't know why I do this, or why it comes in such waves -- it is just part of who I am, I guess.  I worry about how much I've been working; I worry about whether my girls know that when I'm not physically with them, my heart aches TO be with them.  That during the day, even when I'm at my desk downtown, I'm still "mama" even when I'm also wearing my lawyer hat. In between work assignments and calls, I'm scheduling appointments, fighting for services, figuring out how we'll make certain things they need happen, texting our nanny to check in, worrying whether Sammie B is enjoying PT and cooperating or not enjoying and not cooperating (on a day where its the latter, my heart sinks as I once again wish my girl didn't have to work so stinking hard, and I want more than anything to bolt from my desk and go home and hold her) and missing them both like crazy.  I worry that I'm always just the day care drop-off person, the legs Mia clings to on her clingy mornings, while B gets to do pick up and be the arms she runs to at the end of her day.  I worry that in the evenings, when I'm playing and have to stop to answer a call or respond quickly to email messages from work that they will think I'm not fully "present" with them, and I so, so want them to know they are my number one.  My absolute number one.  I want them to know that even though my lawyer hat often bleeds into my mama time, being mama is always the hat that matters most.  I worry that they'll someday resent that I wasn't the one coming home every day at a normal time, fun and ready to play.  I'm glad that B is in a position to do that.  I'm glad that we have him.  But at the same time, I worry they won't know that they were my number one. I worry they won't understand that a big (HUGE) part of why I do the job I do, is because it allows me (us) to provide things for them we might not otherwise be able to do.  I wonder if someday they'll understand this, and I hope they feel more proud of me than resentful.  As worry (these and others, new and old) threaten to rob me of my joy and my "presence," I'm struggling to enjoy the minute simple moments (a phrase I'm stealing from my friend H), like these:  

May THESE moments define us. In THIS moment, my heart felt absolutely full and perfect.  May I learn to keep the worry from robbing me of the joys of the moments like these. If I could live in THIS moment, 24 hours a day, I think I would.  Because moments like THIS one are the ones where everything else -- all the worry -- just melt away and my life feels like complete perfection.   

In my extended family, we've had a tragedy in the last few days that has made me really look at the roles everyone plays/has played . . . and here's the thing . . . whenever I think of my own mother, I think of love. Pure, undying, unconditional, intense love.  She has, for 36 years, loved her children with the most unending, unconditional, intense and pure love.  Loved us so hard it hurt her sometimes, I know that.  And even though I might be able to pick some some imperfections in my mom, when I describe her to others, I always say she's the most loving, nurturing, take-care-of-everyone-else-on the planet, genuine person on earth.  And I want, more than anything, to model that same love for my girls.  I want them to grow up and know that their mama loved them to the ends of the earth and back.  Crazy, unending, unconditional, pure, and intense love. The kind of love that takes my breath away. The kind my mama taught me. That's what I want them to know.  That even on my worst days, they still take my breath away.   

These two little ladies are my heart.  I love them with every fiber of my being, every inch of my soul.  

Tuesday, July 9, 2013

Fifty-One Hours of Rockstar

This past Friday, Sammie B completed her first-ever three-week intensive therapy session.   Three hours a day of therapy, five days a week, for three weeks.  We structured it so that she did one hour of CME (Medek) Therapy with a CME-trained PT, then two hours of neurosuit therapy (one hour of OT, one of PT).  I've written before about trying out CME therapy, and how it is targeted at kids like Sammie who have movement and balance disorders.  We tried a few individual sessions before committing to an intensive session.  We loved watching Sam with the CME therapist, and seeing what she could do.  Loved it.  And so, we decided to try a three-week intensive . . . but not without hesitation.

The place we went to (and probably many "intensive" therapy centers) is somewhat known for pushing kids through tears.  That doesn't jive with mine and B's philosophy on parenting, or particularly on therapy for Sam.  One thing we've learned is how much Sam's own recognition of her challenges and her lack of confidence holds her back from trying new things.  We cannot and are not "progress at all costs" parents.  It truly is more important to us that Sam like herself, even if that means she never meets another motor milestone (an extreme and unlikely example, but you get the point).  As I said to B, if we focus too much on therapy and pushing her to do more, more, more physically all the time, how will she ever reconcile that with the message we work so hard to instill in her of self-worth, and acceptance of her body, exactly as it is?   Surely, as her parents, we do have to push her out of her comfort and "easy" zone sometimes (as all parents must), but there has to be a balance, and we are finding that balance a hard one to strike sometimes (and one that keeps me up at night), particularly in this special needs world where there will always be "one more therapy" or "one more therapist" that someone recommends, or another special needs parent that seems to be researching and doing more therapies for their child than we are.  I, of course, never want Sammie to grow up to think we didn't do enough, but even worse, I don't want her to grow up to think we pushed her too hard at the expense of her self-esteem.  No way.  Our only goal for Sam is for her to be her very best self and to live a life filled with love, purpose, and joy, and I mean that with every fiber of my being.  I only hope that she will grow to know and understand that too, and that somehow, we will manage to strike the right balance between pushing and supporting.  

We went into this intensive with open minds, but firm in our conviction that we would draw the line at how hard to push.  That we would always, always follow Sammie B's cues, and while we would push her to challenge herself, we would NOT push her past tears.  I've learned how to tell when the "no's" are just regular four-year old stubbornness.  I've learned when something is just hard for her and she doesn't want to try (and in those moments, sometimes we should push her to try).  But, I've also seen moments where she's asked to do something in therapy or in some assessment and her little cheeks go flush and she says "no" in a way that is a "please don't make me try to do that because I just can't" kind of way, and I am determined that THOSE are the moments we will NOT push past, not now when we've decided that this little girl needs -- more than anything -- to build confidence.  Those are the "no's" we have to respect.  The moments where we say, "okay, then let's do something else."  And, I've seen in those moments, when I say "okay, you don't have to," how the color immediately returns to her little cheeks, and my heart hurts for her.  Those moments are the ones where her fragile self-esteem lies in my hands.  Those are the moments I will guard it with all that I am.  

I went into the intensive session armed with a bag full of new surprises for bribery.  We told Sam all about it in advance, and we told her that after she got through three weeks, as long as she tried her hardest even when things were a little bit hard, we would all go to Disneyland.  I expected tears in the sessions, I expected protests, and I expected to have to bribe her to just keep trying a lot. I expected to be refilling that giant bag of surprises often.  

But, I didn't have to.   My girl rocked those three weeks.  Rocked them.  

The very first day, there were some real, true "no's" and the therapists tried to push her past them, and I said, "nope, she really isn't going to do that, and we aren't going to make her."  I came home, and told B that other than the first hour of CME (more on that in a moment) I was prepared to lose the (large sum of) non-refundable money we paid for this intensive session and pull her out if the next day wasn't better.  But the next day, I talked to the CME therapist about how I was feeling, and explained how strongly we feel about respecting Sam's boundaries and not pushing so hard that she feels bad or doubts herself.  That self-esteem is more important than any milestone in our book.  She was receptive (though the real "issue" wasn't with her) and obviously shared with the other therapists because from that moment on, they really took their lead from me, and they worked to make the time they spent with Sammie fun where they could (and in particular as they got to know Sammie, they worked to incorporate things they thought would motivate her).  We pushed Sam to try hard and do new things, but not to the point that she was upset.  

And in that, some pretty magical stuff happened.  No miraculous new "milestone," but that wasn't what we were looking for.  Better kinds of magic happened.  Sam enjoyed it.  Sam loved seeing what her body could do.  Sam was proud of herself in a new and exciting way.  Sam grew stronger, her balance improved, and she was proud.  

We made videos during the CME sessions to show B at night (I went to the first week every day, my mom flew out for the second week, and B went for the third week.  Sammie B's brand-new nanny went every day but because she literally started the week before the intensive session started, one of us also went each day too, which worked out well!  We didn't want to throw either Sam OR the new nanny into the intensive alone together before they'd had a chance to warm up to each other . . . . our new nanny was an amazing cheerleader to Sammie throughout it and was just, well, amazing in general, so we have high hopes we've finally found a keeper after what has been a six-month crap shoot in the childcare department).   

Anyway, in the evenings, Sammie would ask to watch the videos over and over.  As she watched, she exclaimed (as I reminded her throughout the day) "my body CAN do AMAZING things!"   She was so proud.   

I expected her to be EXHAUSTED each day and need marathon naps, but she didn't.  She came out of there each day tired and quiet, but within an hour or so would rebound and she generally had more energy than we've ever seen from her.  The PT that does her hippotherapy said she had the two best sessions ever, her swimming lessons went amazingly.  Just incredible.   She was, however, really, really wiggly, and sometimes, a bit restless.  The therapists told us that was pretty normal because the kids are getting so much sensory input and their brains are trying to organize it all . . . . the first week, I hated that her irregular movements worsened in the evenings -- it was like she just had so much energy she didn't know what to do with it.  Our girl who could usually sit and watch Dora for hours did not want to sit and watch television at all.  Her body was just excited and "on" and she couldn't turn it off.  That part, truthfully, made me sad.  I didn't want this thing that was supposed to be such a positive thing to cause her any additional challenges . . . but that part got better after the first week, and I recognized all the wiggles were probably a good thing . . . her body was figuring it all out.   We talked about how her body was so excited a lot, and for the first time she seemed to be able to identify when her more irregular movements would happen -- she would tell me, "I'm a little bit wiggly," and we could help her find something to do to control the wiggles (like holding something or focusing on something else).  B and I were proud of her -- I think having a way to describe that feeling, and for us to acknowledge it and talk about it, is a very positive thing.  

I also expected her to hate the CME hour the most.  CME is really just straight balance/movement exercises, and because the therapist is really focused on facilitating balance and movement and exposing the kiddo to gravity (without letting them fall) the therapist isn't entertaining the way a traditional PT might be.  We brought the iPad with movies and songs and books, but still, it isn't like traditional therapy with stickers and markers or more play-based "work."   Surprisingly though, she always did her best in CME, and protested the least.   She seemed fine with the "okay, we are going to do five of these, and then we'll do something else" instructions and as long as we told her what to expect and what was coming next, she just pushed through.  After an exercise, as the therapist made notes and got out equipment for the next thing, Sammie B would scoot over to her and say "what are we going to do next?"  She really just seemed so stinking proud of what she was doing and that made me the happiest. 

Happiest.  When things got hard, we would tell her "Sammie, you've got this.  You are rocking it.  You are a rockstar."    She really just approached it all with such maturity, grace and determination.  It was as if she understood, "this is going to be hard, but I'm going to do it, and then it will be behind me."   Maturity, grace and determination.  

(I'm now going to bombard you with pictures, not just because I'm so stinking proud of this girl, but also because I've received many Facebook messages wanting to know more about the therapy and I think this is definitely an instance where a picture tells a thousand words!)
CME - Climbing stairs with just support around her knees (Day 1)
CME - Walking into (and out of a box) with just support around her thighs

So proud! 
CME - Standing on a balance board with NO support
More box walking, just supported on one thigh
CME - Walking, with just a "saddle" of support between her legs. 
Oh, just standing around on this board (this one takes some major therapist skill!) (CME)
Standing around, holding a ball
Treadmill in the neurosuit 

On this vibrating thing that she loved

Standing and swinging
In the spider cage, bungeed in and ready to jump
Suit is off, session done, ready for Disney and big smiles!
So, the idea behind CME (in my most basic, layman's understanding) is that the goal is to make the child/person responsible for their body in space, and to do exercises that provoke motor responses in people with motor challenges, particularly balance issues/cerebellar dysfunction.  Unlike traditional therapy where the therapists typically provide "proximal" support to facilitate movement, in CME, the therapist's goal is to provide as distal support as they can to still facilitate the same movement.  So, for instance, the therapist might hold Sammie's thigh to help her walk, while a traditional PT (and we) typically provides trunk support.  Then, as Sammie got better/stronger in the therapy, the CME therapist worked on facilitating walking by just holding Sammie's ankles.  Really incredible to watch, and without question, B and I both came away big believers in this method, which says a lot since we have, until this point, not really tried any "alternative" therapies with Sammie but have stuck to the more traditional things.  Unlike traditional therapy, though, it is harder to do at-home exercises -- the therapists are highly-specialized and well-trained, but B was such an over-achiever as a "spotter" that the therapist gave him a few things to work on with Sammie at home.   Also, now that the intensive is over, we are going to continue to do one CME session each week, and reduce (but not eliminate) our traditional PT hours . . . we have a lot of optimism about what CME can do for our girl, and more than anything, we hope it is just one valuable tool to help our girl on her way to becoming her best self.  No expectations, no milestones required, just her best self.  

On the last day (just before we headed to Disneyland as promised!), when she did better on the treadmill than ever before, but things got hard, she said, without prompting, "I've got this.  I'm rocking it.  I'm a rock star."  Indeed, my girl.  Indeed. 

And that is how my girl logged fifty-one hours of therapy in three weeks (we cancelled her regular PT/OT sessions during those weeks, but kept the fun stuff like horses, music therapy and swimming!).  

Grace.  Perseverance.  Hard-work.   My girl.  Inspiring me, amazing me, day after day, moment after moment.  

My sweet, amazing, Sammie,

I learned more from you in these last three weeks than I could possibly teach you in years.  You showed such grace and perseverance through some incredibly intense and hard work.  We are so, so proud of you.   If only you knew how my heart swelled in the moments where I saw pride on YOUR face at what your body was doing. At seeing you grin from ear to ear at night watching the videos of yourself standing, and asking to watch them again and again.  You amaze and inspire me day after day, moment after moment.   And I hope that someday, you will read this and understand . . . we are here, along for the ride - YOUR RIDE - and our only hope is that we are doing all the "right" things to give you the tools you need to be your best self.  But this is your story girl, and we truly do believe you are perfection.  Just as you are.  I hope you grow into a lady that loves yourself as intensely as we love you.   You are amazing.  Amazing you.   You are a rockstar.  

Your oh-so-proud and ever-lovin' mama.