Them - Right Now

It is amazing what good sleep can do for a girl (me).  Mia seems to have gotten over the hump of bad sleep, and thus, we are all sleeping better.  After an amazing work win at the beginning of the month, I enjoyed a couple of weeks of being mostly at home, and it was awesome.  I cannot tell you how many times this month (or how many times a day) I look at one of my girls and think, "I want to memorize every single thing about her.  About us.  About this.  About our right now."  I do.  I want to drink them up and memorize everything about them, just as they are right now.  So perfectly right now. 

Sammie is still (as she has been for over a year now) obsessed with princesses.  Every single day, at some point, she requests to dress like a princess.  And we let her.  Any time she earns a reward for something, and gets to pick, she generally requests a new princess dress.  She wears one every day, and most days, there are costume changes.  She is in costume about 80% of the time.  And I absolutely love that about her.  At therapy, at home, out shopping, sleeping, it doesn't matter.  The girl likes to be in costume.  I've written before about how Sammie B is shy, and how we often feel like lack of confidence holds her back,  . . . but we notice when she's in costume, she's bolder, louder, more confident.  I adore her imagination.  I adore that even though 70% of the time she insists on a princess or fairy costume, she also loves the doctor, vet, police officer, and chef costumes we've bought, and once dressed up, immediately goes into role (as a doctor, "What seems to be the problem?" she asks. Oh Sammie!).  When we went to Disneyland, she asked to take her entire trunk full of princess dress-up clothes because she knew the princesses there would like to see them.  We let her take two and she had a tough time choosing (ultimately, Minnie and Cinderella).  

When not wearing a costume, she wants to be wearing a dress. Every day.  And, she wants Mia wearing a dress.  And me.  And if I pick out shorts for Sammie but a dress for Mia?  Or shorts for her and a dress for me?  Much disappointment ("But I really, really want to wear a dress too!")  I've gotten good at finding leggings and shorts to go under dresses so that we can still go to PT in attire she approves of and feels good in.  She's my girl, there's no question. Mia is not yet into playing dress up, and Sammie so, so wants her to be.  She was so disappointed when Mia refused to wear her Minnie dress to Disneyland.  When we buy new princess dresses, she always picks one for Mia but we can rarely get Mia to wear one, so Sammie usually ends up with both of the new dresses (and as I type this, I'm thinking . . . hmmmmmmm . . . . well executed, Sammie B!).  

Sammie is also obsessed with happy meals.  "Plain hamburger, nothing on it, nothing in it!"  She answers "hamburger happy meal" absolutely any time we ask her what she wants for a meal, and I'm ashamed to say, we probably give in far more than we should.  But whatever.  We've amassed an insane amount of the smurfs they are giving out with happy meals in the last month, and Sam loves them (she also loved the movie).  She sleeps with about 12 of them every night, and as she's falling asleep, she makes them talk to each other. (Prior to the smurf collection, she made her two Doras and Diego talk, and every night before bed, she said, "I'm going to make "Dora, Dora and Diego talk!")  B and I often sit with the monitor, listening at night, and just laugh and laugh.  The other night, this is what we heard the smurfs say:

I have a great idea!!

What's your idea?!

Maybe tomorrow we can all go on a picnic!

Yes, that would be very, very fun!

And maybe we could swim in a river!

That is a very fun idea!

I want to go on a boat ride. 

Maybe we can find a boat.  That is a very, very fun idea!

The thing is, during the day, Sammie will NOT make the smurfs or any of her other characters talk to each other in front of us -- other than maybe saying hi, but she demands that we make the characters talk (all day).  At night though, in the dark of her room, she makes them talk and talk and talk, and we fall in love with her over and over and over again listening to the conversations and her ideas.  

We've gotten to spend several full days together this month, just me and Sammie.  We've mostly been running from appointment to appointment, but I've been amazed by how grown up she suddenly is. She tells me she "really, really" wants things and how she's going to do something "forever and ever and ever" and she makes "promises" and the other day even used the word "otherwise" correctly.  She asked me for permission to do something one afternoon and I said no, and then she waited and asked B later when I wasn't around and he said yes, and she immediately said, "yay!  dada said 'yes' and I cannot wait to tell mama!"  When she's happy, the joy spreads throughout her entire body.  She radiates with a joyful glee that I cannot get enough of.  As our conversations become more and more grown up, I am so keenly aware that time is passing too quickly, and those are the moments I really, really wish I could just bottle it all up. Memorize every detail. 

I am completely and totally in awe of Sammie B.  Everything about her.  I was born to be her mother. 

So very, very Sammie.  

Radiating Joy. 

Her happiest of places.  

Fearless Sammie B after just (literally) marching across this river/falls with her daddy's help.  Sometimes, it takes two.  Screaming with joy and glee all the way across.  

And then there's my littlest girl.  I wrote to Mia after her first birthday describing how Mia just did everything big, and she still is. Doing life in big, big Mia way.  She's got big personality, gives big loves, throws big fits. She has blessed us and challenged us in so many new and funny ways.  She loves Dora and Strawberry Shortcake ("Berry cake!") and her big sister.  She repeats after Sammie all the time, and when Sammie wakes up in the morning after Mia or after nap, Mia greets her with such enthusiasm it is as if they've been apart for weeks ("Nammie! Nammie!" Nammie!  Mantha! Nammie B!" all while running to her sister to hug her.  Truly, the best).  She's the most independent little thing I've ever seen and loses her cool if we dare do something for her that she'd wanted to do for herself.  Getting her into the car seat each morning is always a challenge ("my do it! my do it!") and I try, try, try to be patient while waiting for her to buckle herself in her car seat.  Because if I don't let her . . . well then there's a big Mia fit to contend with.  And if I do let her buckle herself, she does (eventually) and then her proud smile and "I do it!" most definitely make it worth the wait.  

With all her independence, she has this delightfully timid side too. The second we go some place new or a new person approaches her, she slows down, reaches for mine or B's hand, and proceeds with caution.  I love that about her.  Love it.  I also love that she's started calling B by his first name, and the look of defeat on his face when she does so is equally endearing.

Mia's love for our dog ("Dude") knows no bounds.  If he's in the room, she wants to be with him, even though he'd prefer that not to be the case.  We are trying so hard to help her understand that Dude doesn't want to be touched all the time, and it breaks her heart when he doesn't want her love.  When he "warns" her (as we say) with a little grumpy growl, she starts patting him and saying "it's okay Dude buddy, it's okay."  She wants him to follow her everywhere, and is always saying "Come on, buddy!" When she has something she's proud of, she always shows each one of us, including Dude.  ("Look, Mama, it's a ____.  Look, Dada (or B-------), it's a ____! Look Nammie, it's a ____!  Look, Dude, it's a _____.")   Poor Dude has been a fabulous sport, even though he's getting older and would rather be left alone most of the time (though he gets paid for his patience in dropped food and little faces to lick).   

In an absolutely classic Mia story, last week, we were outside on the patio eating dinner, with the back door open.  Mia walked into the house, and I followed.  But just as I was about to walk in, she turned around, slammed the door, and locked it.  And then, did this:

I looked at B and said, "she just locked the door."  Somehow, I stayed calm, while B tried to talk her into unlocking the door (she tried, but said, "it's stuck!" (it was not)).  Fortunately, she stayed in the den where we could see her, and she stayed calm (she started getting out toys and sat down and played).  I called a locksmith while B went to work trying to get in a window . . . locksmith was only 15 minutes away so we weren't too freaked out, then B managed to get in a window so the entire crisis lasted under 20 minutes . . . and provided us with a funny story we'll remember forever.  The entire time, Sammie was laughing and asking "whose going to get us in the house?!"  When I told the story a few days later, Sammie chimed in "you were freaking out!" . . . and to add insult to injury, Mia pooped in her pants while we were outside, so when we came in, we also had to change her.  Good story.  

Mia is an amazing little sister to Sammie, an amazing little girl to have as our littlest.  She has charisma and charm and so much more. She too is growing up way too fast and even though it just keeps getting more and more fun, I wish I could stop time just for a little while and memorize every detail of her right now. Everything about her.  

I am completely and totally in awe of my Mia.  Everything about her.  I was born to be her mother.  

Possibly the cover of her first album?  Funny hair day at day care; she was not thrilled with her pink hair nor amused by me with the camera.  This is Mia doing "irritated" in her big, big Mia way.  

This is at my dear friend Melissa's birthday party.  Mia doing party girl in her big, big Mia way.  

Little timid at the beach.  The closest we could get her to go to the water was about 15 feet away . . . 

Mia's famous messy tresses.  We do brush her hair.  Almost every day.  

We aren't great about taking videos.  We take tons of pictures, but rarely print them.  I have loads of pictures on my phone, on the computer and even more etched in my mind.  I want to memorize them.  Fifty years from now, I want to be able to recall their voices, their giggles, their mannerisms.  Just as they are right now.

I am in awe of them.  I was born to be their mother. 

Sammie B-approved outfits for all of us!

Our Nights

Just as work finally eased up and I was looking so, so forward to catching up on sleep, sleep "issues" fell upon us.  I don't know what's going on, really, but Mia is having a hard time going to sleep at night and is waking up at least once a night screaming and the only thing that soothes her is laying with me or B.  We've been playing a lot of musical beds around here. 

This is all complicated by the fact that when we moved into our new house, we decided to let the girls share a room (at Sammie B's request).  All was sweet and cute with the shared pink & purple room (also Sammie's request) for months . . . . we would listen over the monitor to Sammie tell her sister what to do at bed time with such authority ("Do NOT stand up in your bed.  Lay down.  Right now! Right Now Mia!") and we'd giggle . . . but then sleep issues.  Suddenly, the shared room seemed like not such a perfect idea.  

There were a couple of nights where Mia was screaming until 10 pm and then screaming again at 4 am and Sammie would yell "NO crying Mia, NO CRYING!" with such tired desperation (I felt her pain!) that I felt terrible for her.  I talked to Sammie about showing compassion and not getting so mad because something was bothering Mia, and the next time Mia woke screaming, I laid in bed and listened over the monitor as Sammie whispered to her sister, "it's okay, Mia.  I'm right here.  It's okay."   Often, one of us would go in and get Mia, and the other one of us would lay with Sam in her bed.  But then . . . Sammie B was waking up in the mornings with dark circles under her eyes.  Because of all the wake ups, she wasn't getting enough sleep, and she often has therapies in the mornings.  So, for now, we have a certain almost-five-year-old sleeping in our bed, which allows her to get the zzzzzs she needs, and allows me to go to Mia during the night when she gets up without Sammie waking (or B, seems like everyone is winning here except mama!).   

On top of these sleep issues, I'm finding myself falling into a tailspin of anxiety lately . . . . for many reasons, some little, some not so little.  Thinking about this coming school year, hoping we've made the best decision for Sammie's school (disappointed neither of the charter schools happened for us), anxious about some new "experts" we hope to add to Team Sammie B this year to help us figure out how to best set her up for success in school (more on all of this to come), anxiety about whether I'm giving each girl enough of me, always wishing there was more of me, more patience, more time, more everything.  Feeling like life is whizzing by at warp speed, and that there's all these things we should be doing now (or yesterday or last month) (like potty training).  I just wish that life would slow down.  I wish I could catch my breath.  I wish there were less things to feel like we "should" be doing that we just aren't getting to, or that we aren't getting to give "enough" to.    

In the midst of all this craziness, the sleep issues, the anxiety -- there are actually moments when both of the girls are sleeping, moments I peek in at them and watch them breathe . . . and suddenly all feels right with my world.  As if time is standing still, and the world (and my heart) is overcome with nothing but calm and peace. 

Oh these two.  They own my heart in a way I never knew possible.  They are my heart.   

The Most Magical Place . . .

Work has been . . . intense this summer, to say the least.  I've worked (much, much) more than part-time, but I've now finally got a reprieve.  Finally, finally.   Time to breathe, blog, and just be . . . 

Remember how I promised Sammie B we'd take her to Disneyland after her intensive therapy?  Well, we did.  And, I booked the trip sometime after being stuck in a conference room for 20 hours straight working on a motion.  What better time to book a trip than when you are working on zero sleep, missing your family like crazy, and dreaming of a little mini-vacay?  I knew I had to have something big to look forward to, and I knew my girl deserved a big weekend after her three weeks of intensive therapy.  So, I booked a weekend I might not have otherwise booked, and we went big.  It was so, so worth it.  We stayed in one of the Disney resort hotels, we did the two-day two park hopper passes, and we had an absolute blast.   It was so, so nice to sneak back to the hotel each afternoon for a family nap, to wake up and say "Who wants to go back to Disney?" and have two little girls squealing "Me me me!"  It was so.much.fun.  

It was a full weekend of celebrating and family and it was everything, everything we all needed.  

At California Adventure

Meeting Merida -- one of my favorite parts of this trip is that while Sammie B has long been character and princess-obsessed, this time, Mia was really into it -- both LOVED seeing the princesses, Minnie, Mickey, and all the characters.  (Sammie was so disappointed that Mia refused to wear her Minnie costume).   

Hotel pool/splash pad

Water show at California Adventure while we waited for lunch with the princesses

Downtown Disney - Classic Mia face

One of the 40 inches and up rides :o) she was too short for this one in December.  They also rode the really fast Cars ride and Sam loved it.  After they got off, B said, "that was so fast!  It was like a roller coaster, and Sammie said, "no, it was just a ride."   

She didn't pick the ride, and didn't want to ride it (Mia picked) so we told her you don't have to look then, so she didn't.  (Except check out that peep hole!).   

Carousel 

Mesmerized during the parade

Best part about mini-vacations?  Snuggling with my girls till 10 am! 

So much fun!

There's no one on earth I'd rather spend a weekend with than these three . . . . no one.   Just tonight, after B spent the day out with Sammie B (a date to see a princess puppet show) and I spent the day with just Mia (something we are still trying to do nearly every weekend, giving each girl one-on-one time with one of us; Mia and I went to the park and out to lunch), I told B, "I love my one-on-one time with each of them, but there's something about the four of us coming back together at the end of the day that just feels perfect."  And it did.  As I scrambled in the kitchen to throw dinner together (with Mia whining at my legs saying "hold you hold you hold you") and B out at the grill on the patio, with Sammie B scootching around, collecting rocks (her favorite thing these days), everything felt so blissfully chaotic and wonderful.   I love a weekend.  Love it. Especially the non-office kind.   

And of all the weekends this summer, our Disney weekend was definitely my favorite.   We didn't get to take a "real" vacation away this summer, but have had a few little weekend trips (and a time still for maybe one more before Sammie B starts back to school on September 9!).    

Time seems to be moving at warp speed, and I want to soak in these amazing family moments.  If there was a way to memorize every second of these days, every moment with my two littles, I would. They are both magical.   

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.  

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.  

NOT Funny

I'm exhausted and about to pull a work all-nighter, which I'm most unhappy about (why is it that other associates on my teams send out out-of-office emails that say they are going to be on vacation, with no access to email, and peope respect that, but when I do the same for my child's surgery, but intermittently answer emails to be helpful, boundaries are out the door?  And since when does "I need to take a few days off next week for daughter's surgery mean "I'm not going to be able to work during the days next week, but don't worry, I won't sleep ever and will still do a normal amount of work by just doing it all night while my kiddo sleeps?"), but I digress. 

Just a quick update, in the briefest of ways. 

Good news:  Sammie had a post-op appointment with her surgeon today and all looked good.   We'll see him again in 5 weeks, and see if we can tweak her glasses prescription at all then.   Her little eyes are still so blood-stained, which I just hate.  It's like this visible reminder to me of my girl's discomfort.  Today she complained about pain and itching but that was mostly alleviated via tylenol.  Leaving the appointment with her surgeon, she made me giggle.  A lot.  I told her we needed to get cash for parking and she said, "do they have an ATM here?"  When I told her they did, she told me she wished we had an ATM at home.  Me too, kiddo.  Me too.  One that dispenses free money.

Tonight Sammie B was playing with her little doctor kit and I realized she knows way too much medical terminology.  As I sat and listened to her tell B she needed to "listen to his heart" and then "now let me listen to your back and hear your breathing," and "I'm going to take your blood pressure now," I smiled, but my heart frowned a little.  I wish this child had seen fewer doctors in her day, had her blood pressure taken a little less, and well, just seen less of the "medical."

Playing doctor.  I have no idea where Mia's shirt is. 

Bad news:  Mia has pink eye.  If it weren't so damned unfortunate, it might be funny in that "are you kidding me, universe?" kind of way.   We HAVE to be diligent in NOT letting Sammie get this.  Her pediatrician said the antibiotic eye drops she's already getting post-surgery should prevent it.  Her surgeon suggested keeping the girls completely separated for 7 days.  But, we know it is probably too late; Sam's been exposed. 

Mia couldn't go to day care today and B and I spent the day/evening chasing her around with clorox wipes and hand sanitizer and begging Sammie to NOT touch her own eyes, and making her wash her hands constantly.

Yeah, really effin unfortunate timing and NOT funny. 

When efforts to keep them apart failed, I plopped them both in Sammie's stander (Kitchen Helper from onestepahead.com) and let them play with soap.  Sometimes, I am genius. 

In slightly better news though, this explains why Mia was an absolute bear last night (well, this and the ear infection she also has, which was also discovered today) but after a few doses of antibiotics and tylenol today, she was in better spirits and is now sleeping soundly.  

The whole world is sleeping, except me.  I'm drafting a motion, and none too happy.

Over and out.  Back at it. 

Brave

We made it through strabismus surgery, and my girl has, once again, amazed me with her bravery, perseverance, and grace.

So, so brave. 

We were up bright and early Monday morning, dressed appropriately, and off to the hospital.   

We signed in, and we waited.  Sammie B hadn't been allowed to eat, and she kept telling us she was hungry, but we waited.  We passed the time together, just the three of us (a friend came to our house early and took Mia to daycare for us).  We waited for two hours -- my stomach in knots, pacing a little (and trying not to let my own anxiety show) while Mr. B, (seemingly) calm as a cucumber, entertained our bee, and got oh-so-many giggles.  The deep-belly, pee-your-pants giggles.  Just what my nervous heart needed to hear.  Over and over.  

When it was time for them to take her back, she held Dora in one hand, Diego in the other, we kissed her head and we all said our "I love you's" and they wheeled her away (she'd had some medicine at that point to make her a tad loopy so she didn't get upset when we said good-bye).  I fell apart, B held it together.

Our girl was so, so brave. 

The doctor had told me surgery would take about an hour.  It took two.  In the last half hour, I damn near fell apart.  I paced, watched the screen that showed each surgical case (by number) and their status, and asked three (yes, three) different surgical nurses that happened to walk by to go get updates for me.  One was kind enough to do so.  She said they must be finishing up soon because they'd just asked for a spot in the recovery room for Sam.  My heart stood still.  I just wanted to see my girl.  My heart raced.  I told B, "I don't think there's any worse place to be sitting than in a hospital, waiting to hear that your child is okay.  I hate this."  I did -- I hated it.  

I kept pacing and I caught a glimpse of them wheeling our sleeping girl through the hall to recovery and wanted to just run to her, but I waited, with my heart racing.  The anesthesiologist came in and said she did well, though he couldn't speak to the technical aspect of the surgery, just the sedation.  My heart raced faster; I asked him to please go find our surgeon before I fell apart.  Then, our doctor came in, smiling and said, "she's waking up now, and I want to get you back there -- all is good."

Our girl woke up a mess.  An absolute mess.  Thrashing and screaming and crying that her eyes hurt her.  She was inconsolable.  We held her.  We talked to her.  The doctor said she had woken up from the anesthesia too soon, so confusion and the effects of sedation were making it all worse.  They gave her some morphine in hopes she'd sleep a bit longer and wake up in better shape.  I paced (and cried silently), hating that she was in such pain, and trying to say something to calm or help her.  B held it together, and held her.  We both tried to comfort her as the morphine kicked in and her screams went to soft whimpering of "I'm so so so sad that my eyes are hurting me."  My heart crumbled with her whimpers, and I thought I was going to fall over.  

But then, she fell back asleep and slept soundly for another 45 minutes and indeed . . . woke up in better spirits.  Still a little groggy and confused, but not screaming or complaining of pain.  We came home and laid around in bed, in the dark.  She dozed in and out and listened to a few movies with B while I ran out to pick Mia up and kept Mia (somewhat) entertained.  I'd asked Sammie B if there was anything I could get her at the store to make her happy and she told me "one of those pillows that lights up like I saw on TV."  So, I went hunting, and found one.  Twenty dollars well spent.  That pillow has brought our Sammie B tons of joy.  She's sleeping in our bed right now post-surgery and woke me up three times last night to tell me she loves it. She also asked us all day to please go buy one for Mia (though sweet, I'm not sure this is completely out of generosity, I'm pretty sure it is because she wants Mia to have her own so Mia isn't interested in taking hers!).  

This morning, B took Mia to daycare and let me and Sammie sleep in . . . which we did -- until nearly 10 am!!!  When she woke up, I asked her how she was feeling and she said, ""happy!" and my heart felt such relief.  

And she really has been mostly herself all day. 

B came home from taking Mia to daycare with some little balloons that have kept us all giggling all day (though Elmo unfortunately later floated away to bigger adventures, after Mia took the weights off his feet when no one was looking, much to every one's disappointment).  

It might be awhile before we really know how effective the surgery was -- her brain has to get used to the new position of her eyes and figure out the muscles all over again.  The surgeon did say that once he was inside looking around, he could tell that the muscles he had operated on before had slipped out of place quite a bit.  That's good news, in a way (though we would of course rather that not have happened!) . . . because the "slipping" from prior operations is not uncommon for strabismus surgeries, so now we know that's what happened and not just that something got worse on its own, without any explanation.  

I have (figuratively) exhaled a breath so big I had no idea I was even holding it in or how I was holding it in.  

This surgery - that I've been dreading for months - is behind us.  Behind her.  

She was so, so brave.  She amazes me, every single day.

Tomorrow we take her to her post-op appointment with the surgeon, and we'll also be taking our sweet Mia into the pediatrician -- she got sent home from daycare sick today (life always throws us curve balls and with impeccable timing!), and needed some TLC herself tonight.  I stayed up to get some work done tonight, and am just hoping both of my girls are better tomorrow. 

Thank you for all of your warm wishes, prayers and positive thoughts.

This surgery is behind us.

I remain inspired by her.