Sunday, December 8, 2013

Overwhelmed

I'm not sure why I haven't come back to this little space to write for so long.  I can't believe how long it has been, or how many "post-worthy" moments I've not written about.  I think I've let the must-do posts pile up so much that I'm overwhelmed by the need to get caught up.  My annual birthday posts to the girls, birthday letters to them, Halloween, Thanksgiving, their birthday party, the annual neurologist appointment . . . all these things passed me by that I have always posted about, but I've been drowning in work, and living, and doing, and just didn't post.   But we are still here.  We are good.  We are great even.  The girls couldn't be better.  Sammie is still absolutely thriving at school, and I cry happy tears at least once a week from some story of some way that she's "shared" who she is at school.  Something that wasn't happening last year.  This new place has set the bar high though and I'm absolutely overwhelmed by the "well what now?" that next year entails.  This school only goes up to age 5. . . so we are back to square one for next year except that we've seen the difference between our girl in the "right" environment for her versus the "not right" environment.  Finding this "right" environment again is proving to be no easy task.  On top of all the other usual to-do's I have11 school tours to go on in the next month and a half.  Yeah.  I'm overwhelmed to say the least. 

My work-life balance has pretty much sucked lately -- so all my late-night time that I used to spend blogging or catching up with friends or sleeping has been spent working.  I've managed to keep some semblance of normalcy for the girls; I still come home for dinner/bath/bedtime 95% of the time (I only miss it when I'm on a work trip or have a filing that keeps me in the office, but then we face time "goodnight" and they love it), but even on the nights I make it home, the second the girls are in bed, I start the "third shift" so to speak.  I don't know when the last time I slept a full-night's sleep was.  Most nights I'm so dog-tired that I nap from 9- 10 pm or so after the girls are in bed, and then I get up and work for 3 or 4 more hours before sneaking in another quick nap before the girls wake up at 7.   I look beat up at work most days, and I feel it.  I know this pace isn't sustainable, and I just keep hoping things slow down soon so I can sleep, and blog, and get my hair highlighted, or blow dry it at least for goodness sake, and well, just have free time and don't constantly feel like I'm suffocating by work.  Overwhelmed. 

Not the rosiest of posts, but it is what it is.  

Good news:  I haven't thrown myself out my office window yet, mostly because (1) they don't open, but also because (2) of these two.   They are my heart.   They carry me even on my worst days.   I find myself, daily, thinking about how they are now "2" and "5" and that sends me spinning.  It's almost as if I feel overwhelmed by how quickly they've become little girls and not babies, and how fast this whole life thing seems to go.  Overwhelmed by how much I love them, how much I want for them.   How amazing they are.

I cannot wrap my head around it, and I wish I could slow down time.   I do.  Because it feels like time is moving at warp speed all the time, and I want to savor every moment with them. . . . every giggle, every "mama, hold you" from Mia, every little joke or inquisitive question from Sammie B, every single time one of them wraps their arms around me.  Every single moment (okay, except maybe not Mia's tantrums, because those moments are rocking.my.world. That stuff is uncharted territory for us, and well, I'm not savoring it.). 



My heart. 

I hope that somehow I can convey to them, through both actions and words, that hard work pays off, that I work *this* hard so that I can give them the life I want for them, and that they won't look at me, my job, my work, and grow to resent it all.   I hope.  I hope they won't see the "overwhelmed" nearly as often as I feel it, but that they'll feel the love every time I feel it, which is of course, all the time. 

I hope they will both grow to know that the *best* part of my days, my every day, are the moments I'm with them.   No question. 





Thursday, September 26, 2013

She's Five.

I cannot even wrap my head around it, but it is true.  Five amazing years.  Five years of beautiful, delightful, joyful, magical, stubborn, wonderful, giggly, inquisitive, amazing Sammie B.


Five couldn't be any cuter, any more joyous, or any more magical.

If I had searched the universe for a little girl to make me a mama, I couldn't have picked a more perfect one than her.   I love her.  With all that I am.

** More details on her big day (and parties) to come when I kick this cold that's kicking me. **

Monday, September 23, 2013

This New School

Two weeks ago, our big girl started a new school.   I’ve written a lot about our struggle to find the right placement this year (here, here, and here for instance.).   Sammie B was in our district’s special education preschool (in a class for kids with mild to moderate delays) for the last two years, and while we always said it was “fine” we knew there were issues.  We knew it was "fine" for now, but we knew a similar placement wouldn't be "fine" enough for kindergarten or beyond.  She was the only kid with real mobility challenges in the classroom; many had cognitive disabilities as well; she was one of the few not on the autism spectrum.  Just not a great fit.   And there were no typical peer models.  Not even an ounce of inclusion.  We sat in IEP meetings and felt like the people at that table weren’t “getting her” (and that most of team wasn’t even really trying . . . the speech therapist (the only one with any one on one time with her) seemed to “get her” but not the others, and in particular not her teacher).  Because we sent our nanny as Sammie's one:one aide (as a result of an informal due process issue), we had "eyes" in the classroom.  And we knew that Sammie's class consisted of several kids with serious behavior challenges, and she was getting lost in the fray.  A quiet, cautious little girl content to sit on the sidelines to watch was doing just that . . . watching.  A spectator.  We knew that wasn’t enough. 

In the spring, before her "transition IEP" (for kindergarten) I toured the classroom the district was recommending for her for this year and suffice it to say we walked out of there and knew we had to figure something else out, and that we'd likely need a special education attorney.  My exact words: “over my dead body will Sammie B be in that classroom.”  It was not a place where learning was happening.  During our (very very short tour), one child was running madly around the room while an aide chased, one child was trying to stab himself with scissors while an aide tried to keep him from doing so.  It was mayhem.  When I asked the teacher if she'd ever had a kid with a physical disability like CP, she said she hadn't.  Nor did she seem particularly excited about the prospect.  She seemed put out.  Annoyed.  No thank you. 

Other than that classroom (the "oh hell no" classroom as I started calling it), the only other option the district gave us was to put Sammie B in a mainstream kindergarten class with 25 - 30 kids, and one teacher.  We knew that wasn't right either, particularly since Sammie B meets the kindergarten cutoff by only 6 days, and would be the youngest in her class.

Sammie’s teacher had always said Sammie seemed to shut down in the group.  They told us at her IEP that she was mostly speaking in one word utterances at school (while at home, she was saying things like “I need a stethoscope to listen to your heart!”) and that she wasn’t participating in the group, just watching and didn’t seem that interested in the other kids.  The speech therapist (who spent one:one time with her as part of her IEP), however, said she was "bright, inquisitive" and had a "sense of humor beyond her years" and that she really "shined in one on one settings."  At her IEP though, the OT said something that made a light bulb go off for me . . . when talking about Sam’s interest in the other kids, B and I said, “we don’t understand what’s holding her back at school.  We see her approach other kids at the pool and in other contexts,” and the OT said, “well it is important to remember she’s in a classroom of kids mostly on the autism spectrum, so while she may be interested, they aren’t reciprocating and she has no typical peer models.”   And then, I started thinking . . . maybe she's not trying because many of her peers are not reciprocating.  Maybe she needs to be with typical peers modeling typical social behavior.  And I thought about how they said she "shut down" and I wondered if it was simply the group size, or the chaos. I struggled. I tossed and turned and tried to figure it out. 
We saw a developmental pediatrician who again confirmed that cognitively, Sammie belongs in an inclusive setting.  He gave us tons of ideas of how to best support her in that environment, some of which I raised at the IEP and the team dismissed (you know, like ideas about how to be proactive -- like working with her to learn to type since handwriting will likely be a challenge; they said we needed to wait until it is actually a problem . . . you know, like wait until she's struggled and failed . . . before we could get technology assessment . . .bullshit I tell you).  We tossed around the idea of selective mutism, trying to figure out why Sammie is such a chatterbox at home but would barely say anything at school, and knowing that it stems, at least in part (probably HUGE part) from a confidence issue.  She knows she's hard to understand.  She knows in a classroom of loud kids (or any sort of chaotic environment) she can't say what she needs fast enough and clearly enough for her voice to be heard (at least not all the time).  And that holds her back.  It keeps her from trying. 
After a lot of struggling, thinking, exploring, talking to her developmental pediatrician (who also happens to be a friend we trust implicitly), we knew.   This program that we had deemed “fine” (and to be fair, the school program was only 2 hours and 20 minutes a day and we’d decided for now, that was okay because it allowed us to do a lot of private therapies and activities outside of school) no longer was.  It was holding her back, in ways we didn't completely understand, but it was. 
And so, I did what I do, and I went into intense mama mode.  Researching.  Figuring out alternatives (particularly after we didn’t get into the amazing charter school lotteries).  I cried a lot.  My mom listened to lots of crying and volunteered to fly out and tour schools with me or to pay for a lawyer (God Bless Gigi!) 

I lost sleep.  Trying to figure out where she would thrive.  Trying, as I often do, to "figure her out" so we could find the place and environment where she would thrive.  I called school after school, mostly to learn that the campuses weren't accessible.  The private schools in our area that are focused on special needs cater to a (largely) autism population, and we knew that wasn't necessarily the right fit.  Most other private schools (particularly religious ones) are in old buildings with stairs.  A little Lutheran school near us sounded PERFECT on the phone.  They said they only had one step up, but they could put a ramp up (!), and they'd love to have her (!).  Then I drove by.  And the entire playground was mulch.  No way could I sent my child to a school where she can't play on the playground. So, defeated, I sat in my car in the Lutheran school parking lot, and I cried. 
And then, we went out for ice cream one night.  We always ask Sam if she wants to take her walker places, and she usually (okay, always) refuses.   That night, she didn’t.  She said yes.  So we loaded it into the van and off we went.  When we got to the ice cream place, we put her in it, and she proudly started walking to the store, but then spotted a family with two little boys outside and stopped in her tracks (this has been a theme; she wants to use the walker, but freezes when she sees new people; we don’t know what this trepidation is, it just is).   We encouraged her to keep going, and she did.  And then one of the little boys ran over to say “cool! your wheels light up!” and they LOVED her walker.  The dad struck up a conversation with us and said, “where does she go to school?”  That question came at a time when I was struggling and crying and talking to lawyers and had no idea where Sam would be in school, and I sort of said that in a nutshell and told him we were really struggling.   And he said, “oh you should call [his son’s school].   Really.”   It was an amazing moment . . . because he didn’t assume that because my child was in a walker that she belonged at some other school.   That we should call his son's school.  There’s so much beauty in that.
The next day, I called.  I’ve always said we want Sammie in the classroom or at the school that wants her.  With the educators who see the gifts that SHE has to offer not just the extra ‘work’ her challenges might bring to them.  And guess what?  They wanted her.  The director explained to me that she founded the school on a model of inclusion, and while the few special needs kids they’ve had over the years have mostly been kids with mild ADHD or speech issues, having Sam would be a wonderful opportunity for her staff and the other kids to grow and learn.  That Sam would offer so, so much to the school. 
We toured.  We loved it.  We made the decision - a hard one - to pull Sammie out of public school and send her to this private one (which sadly, is only for one year -- she’s in a class for 4 and 5 year olds who wanted an extra year before kindergarten, they don’t have kindergarten, so next year we are back at square one).  There are 18 kids and 3 teachers, and our nanny still goes as Sammie’s aide. 
A week before school started, we took Sammie in to meet the teachers, see the school, and drop off her equipment.  The night before, I had a panic attack.   We were pulling her out of a public school with “experts” like physical and occupational therapists, and putting her in a program with none of those experts.  It may sound silly, but I laid in bed, panicking, and thinking “no one will help her with scissors!  They aren’t trained to do that!  She needs an OT there. . . . etc. etc. etc.”  Panic panic panic. 

But we suited up (Sammie in a her "fancy white dress") and we headed to meet the teachers. 

Mia is the cutest photobomber EVER.  She rarely lets us take a picture of just her.
 

That meeting was everything I needed it to be to quiet my panic.  Sammie played while B and I sat with the teachers for an hour and a half and just talked.  I told them about Sammie.  Her journey, her challenges, her quirks, her gifts, her talents.  They asked me what our goals for her were, and I explained everything about last year and how we knew something was holding her back because she was a different child at school than at home, and I said, “so our goals for this year are (1) confidence and (2) friends.  the rest is just icing on the cake.”   It was a beautiful conversation, there were tears (not just mine). They asked what she was interested in, and listened.  One of them said she'd go home and drag out some old princess costumes in her garage to add to the pretend play area for Sammie. They listened.  Really, really listened.  Not just to what Sam can or can't do, but to who she is and what she has to offer. I walked away knowing this was the perfect place for Sammie. 

This Sammie. 

Crazy, funny, silly, magical Sammie. 

Here’s the thing.  We find ourselves on this special needs journey without warning and we feel lost, at least in the beginning.  And we trust the experts because, well, we know or feel that we know nothing.  We need them to guide us.  We expect the PTs and OTs and STs to tell us what we need to do.  But somewhere along the way, we learn that WE are the experts in our kid, and that no amount of expertise or training can replace what (at least for us) we’ve found Sammie really needs. . . an environment of community, empathy, and love. 
We've spent entire DAYS in her IEP meetings, spelling out objective goals and listening to all the things our girl struggles with.  But we accomplished more in that hour and a half sitting on the circle time carpet in the floor of that classroom with Sammie’s three new teachers, just talking about who she is, not what she can or can’t do, and what our hopes and dreams for her are, not our objective goals (like accurately drawing a circle in 4/5 attempts . . . . seriously).   We walked away knowing this was going to be a great year.
I don’t know what next year will bring, but I know that I am so, so excited about this year.  So far, she is thriving.  I had warned our nanny that she might be ridiculously quiet at first.  She wasn’t with Sammie at school last year, so mostly just knows the chatterbox from at home (Hannah started with us in June).  I wanted her to be prepared to really need to draw Sammie out to participate.
And then, they came home after Day 1 and Hannah’s first words to me were, “that was amazing.  It honestly exceeded any expectations I could have had for the entire year.”
Sam loves it.  Loves it.  She’s thriving.  She belongs in exactly this type of setting.  Some snippets from her days (Hannah is writing notes to me every day so I know things they do, and she’s having Sammie help her by telling her the things about her day she wants me to know!):
[I cannot tell you how many tears of joy I’ve shed reading these notes each night.]

On the first day, they went around for each child to say her/his name and favorite food [mind you last year, Sammie did not ever speak ONCE in the group, other than “yes/no” answers].   What did our girl do?  She said, “I'm Sammie B.  I like hamburger happy meals!” [Bless her soul!]  That same day, she wheeled herself up to the sink and washed her hands all by herself.  She asked the other kids what was on their lunch boxes, and showed off her new princess one.  She worked on spelling her name and did really well! 

Snazzy First Day of School Outfit
 
[And after hearing this account from Hannah, I sent B an update and said, “how are we going to afford private school forever?!!!” I'd literally sat home watching the clock all morning, waiting for them to get home; silently panicking some more (again thinking "there's no therapies! no therapists!  what have we done?!") But Hannah came home, shared those stories, and again, my panic -- gone.]
That night, in the bath tub, Sammie said to B, “do you want to hear all about my new school?”  (of course he said yes).  And then she said (without taking a breath), “I washed my hands!  I went outside for snack! I played with letters!  I dressed up as a princess!”   The most she’s ever said about a school day, ever.  B asked her about the other kids, and she said, "they are really really really nice.  And fun!"

Hannah is finding that she’s standing back and observing much more than she thought she would because Sam is really doing so well with the other kids and her teachers.  She’s raising her hand and sharing and answering questions.  (my heart!  my heart!) 
She’s carrying on conversations with her teachers, she’s asking friends to play with her (my favorite note from Hannah:  “She wheeled herself right up to a group of girls and said, “Do you want to play princesses with me?” (they said yes!) then she said, “Good.  Can we all be friends?”) (my heart!  my heart!).  She and one of the little girls also had a pretend “princess ball” one day.
 
She’s mostly wheeling herself around the classroom in her chair but also scooting a lot when they do floor play (her teachers are amazed by her speed and increased confidence when allowed to scoot).   One of her teachers told her she’d scoot around with her, and did.  Hannah texted me a picture in the middle of their day of Sammie and her teacher, scooting on the floor, together.  Other kids are choosing to scoot when they play with Sammie.  (My heart! My heart!)  A little boy planted a big kiss on her!  (he asked first, and she said “yes!” and pointed to her cheek!) 
Thursday was Pirate Day at school (National Pirate Day actually) and on Wednesday, she told me, “Tomorrow is Pirate Day, I should dress like a pirate.”  And so . . . . you now where this mom headed . . . to the costume store.  Her wish is my command.


Sammie B taking participation to a whole new level.  (She told me, "my friends will laugh when they see me and say 'oh look!'")  She’s officially talked and shared more in two weeks at her new school than in the two years at the old school.  Her love for learning has taken off (again).
See, back before Mia was born, I used to work with Sammie a lot on letters and numbers. She loved it and would sit and “work/learn” with me for big chunks of time.  In the last year though, she’d seemed to lose interest. I blamed myself for not doing as much one on one with her, and beat myself up.  But guess what?  It’s back. Frankly, I think the “letter of the week” approach at her old school (which I now know research doesn’t really back up) and the very static curriculum bored her, and that instead, the way that the new school is teaching things more through play and experience and in context . . . has renewed her interest in it all.  I’m loving it.  As we pulled up to the costume store, for instance, we had this conversation:
Sammie:  What is the name of this store?
Me:  Party City.
Sammie:  Tell me the name one more time, mama.
Me:  Party City.
Sammie:  What letter does it start with?
Me:  A “P”
Sammie:  When we get out of the car, can you show me the sign and the “P?”
(My heart!  My heart!)
While I know hindsight is 20/20 and there’s no sense in playing the Monday morning quarterback game, there’s part of me that wishes we’d done this sooner.  That we’d realized that having “experts” isn’t all its cracked up to be (particularly when you live in massive school district where your child is just one of hundreds, if not thousands with an IEP, and the experts are, um, in many instances, sub-par) . . . but I’m not going there.  Not today.  Instead, I’m just going to soak in the joy over the reports I’m getting from Hannah and the joy I see in my girl everytime we talk about school.   The joy in her eyes, her smile, her voice. 
(My heart! My heart!)
Our girl is thriving.
Thriving. 
Here's to this new year.
(And to a little girl that turns five tomorrow . . . . something MY heart isn't quite ready for.)

[After typing this out, hitting post, re-reading it (twice) and thinking about it a lot, I feel the need to say . . . I don't mean to be so hard on Sammie's teacher last year.  It just wasn't a good fit.  It wasn't.  The curriculum was static, the class chaotic, and, legally, what the district offered, was not a fair and appropriate education for Sammie in the least restrictive environment.  It just wasn't.  Sammie wasn't thriving, Sammie wasn't fully accessing the curriculum, and the teacher didn't seem to have the ability to make that happen.  We didn't even fully understand it.  We didn't even fully understand what was missing  until now, when we can see what could be.   The difference.  It hurts me that we have to be such trailblazers along this path, but I'm astounded that educators (even those in special education) seem so perplexed by a child like Sammie.  Why are we blazing trails?  The teacher may not deserve all my harshness, but to be sure, the district does.  What they offered was inadequate.   And the IEP team, that pretended to be so very vested in my daughter, changed their tunes so very, very quickly when we didn't agree with their recommendation.  It wasn't a team decision.  It was crap.   We got a bunch of company (district) lines [like (after acknowledging that Sammie seemed to shut down when the bigger behavior problems from other kids were occurring, "but don't you think any preschool class would be chaotic?  Don't you think she'd be overwhelmed in any class?"  (imagine that in the most condescending, "you're just a mom, we're the experts!" voice you can imagine], and although they'd acknowledged their feelings about how the "oh hell no" class wasn't appropriate for Sammie verbally in the IEP, the second we indicated we were not going to sign that IEP, everyone acted like a bunch of assholes and wouldn't "own" any of their comments during what we thought was a "team" meeting.  A crappy, disappointing, and upsetting situation.  One that left a horrible taste in my mouth as Sammie wrapped up the rest of that school year (May and June) in that classroom.   In any event, the proof is in the pudding.   She's thriving.]
 
 

Four Years of First Days!

Two weeks ago, Sammie B started a new school (more on that to follow! It's going amazingly well!)

I love looking back at the "first day" pictures from past years.  Our girl just keeps getting more and more amazing every single day.   Each year brings more magic, and I know this year is going to bring more than I can possibly imagine. 

I cannot wait to tell you how amazing these two weeks have been. And it's only been two weeks!

December 2010 - Sam's first day of her Early Intervention Center-Based program at UCLA (oh how we miss that place!); she'd just turned 2

October 2011 - Sam's first day of preschool - She'd just turned three (and little did we know when I took this picture that just hours later, I'd be in labor with Mia!)

August 2012 - Sam's second year of preschool - Not quite four.  And the biggest smile yet!  (She was mostly excited about her snazzy new dress -- this is EXACTLY around the time that Sammie started having some real opinions on fashion!)
September 9, 2013 - Sam's first day at her brand new school, in a pre-k class for 4 and 5 year olds.  So very proud of her new princess lunch box from Gigi. 
Not to be left out, little sister Mia was excited to see Sammie off on her first day (and also wanted to wear something special!).  




That evening, we celebrated just as we have every year (and just as my mom did for me each first day of school for my academic career) -- with a small present and a mini-party (cupcakes this year!). 

It is a tradition that I LOVE and one that I am so thankful that my mom did for me.

Here's to an amazing new year for my big girl.

I can't wait to watch your year unfold, Sammie B. 


Sunday, September 8, 2013

New Wheels New World

Two weeks ago, Sammie B got new wheels.  We proudly took those wheels out for a family walk that night, and I posted this picture on Facebook, with the comments below (yep, if you are Facebook friends with me, much of this is old news to you . . . but not all of it!).


Sammie's New Wheels. Some thoughts worth sharing . . . 

Everything about this picture makes my heart smile. Everything. Certainly, if you'd told me four years ago that today I'd accept delivery of my girl's first wheelchair, I might have wound up in a heap of tears on the floor. But here's the thing . . . while Sammie has done amazing in her gait trainer/walker and is still making strides toward independent walking, those things aren't practical for long distances for her right now (imagine being four years old and trying to maneuver Disneyland in a walker), and we've pushed and pulled her in strollers and wagons and on tricycles for nearly five years. She's dependent on us for her mobility. Those options, while fine sometimes, are no longer age-appropriate. Her peers see a stroller, and they think "baby" or "toddler," and she is neither of those things.

The first time we put her in a manual chair, she was a natural. Moving the wheels like she'd been doing it her whole life. See, I thought the first time I saw her in a wheelchair, I'd cry. And I did. But they were tears of joy and I truly felt like my heart was going to burst with pride. I know B felt the same. The lump in his throat was obvious.

This chair (and the power one to come in a few months provided the insurance company doesn't make us jump through endless hoops) has so much to offer our girl. An age-appropriate means of mobility. Independence. Amazing.

I look at her, and I see an amazing little girl sitting taller and prouder than I've ever seen before. My girl. One of the most magical little beings that ever lived.

But I also can't help but look and worry that the rest of the world will look and see a chair first, little girl second, and that hurts my heart. Before I posted these pictures, I also wondered if people (our friends and family included) would see the chair and wonder if this meant we were giving up on other forms of mobility, like independent walking. It does not.

It does mean, though, that we accept our girl (what's not to love and accept?! have you met her?!) exactly as she is -- right now -- and we want her to have every single tool she needs to navigate her world in as age-appropriate and independent way as possible.

So look at this picture. Smile. Marvel at how cute my family is.  And promise me that you'll look in a way that you see my family first, the chair second.

I hope that little by little, we (along with our girl and all our amazing little friends on wheels) will change perceptions.

For Sammie B is one amazing little girl. The chair is but a part of her. Maybe a "forever" part. Maybe not. This is her story, and we are just lucky to be part of it. And, I know, with all that I am, that her form of mobility in this life will not determine the richness of it.

Cheer on, Team Sammie B. Cheer on! 


* * * 
As we walked around the block that night, Sammie yelling "where are the neighbors? I wanted to show everyone my new wheelchair?!" and B and I just bursting with pride, I thought back to a day nearly 5 years ago.  Sammie B was just 20 days old, and freshly home from the NICU.  We'd packed up the stroller and headed out for our first walk around the neighborhood (for bagels and coffee) as a family of three.  As we pushed her, B and I laughed at how proud we were.  B said each time we passed someone, he wanted to say, "hey, look at us!  we have a new baby! I'm a dad!!"  There was an undeniable bounce in our steps.  We were beaming.  We fought over who would push the stroller (ultimately, I got to push to the bagel place, he pushed home).   We have both remembered that first walk fondly and laughed about it when we've seen other new parents doing a similar "pride walk" with their fresh little babies.   We were so, so proud. 



And here's the thing . . . this first walk with Sammie and her new wheels?  It felt the same.  My girl was sitting tall and proud, and B and I were thrilled for her and with her.  There was an undeniable bounce in both of our steps, and we were beaming.  And once again, we both wanted to push our girl, and took turns. Even Mia took a turn at pushing. 

We are just as proud of our Sammie B today as we ever were.  She's amazing.  

***
For those following along on Facebook, you also know that the chair as delivered had some problems and we had to send it back.  Fortunately, they were (we *think*) resolved easily, and we have the chair back and are just waiting on one new part to come in.  I was devastated when we had to send it back.  So angry and sad.  I felt like we'd given our girl this amazing gift of mobility and then taken it away.  I stayed up that night and researched and researched trying to figure out what was going on with the frame and what needed to be done. I wrote a scathing email to the sales rep who ordered the wrong parts and allowed the chair to be delivered when it was so clearly not put together correctly, and begged him to just fix it now.  And alas, we got it back, adjusted, and working, within a week . . . . 

After picking it up, Sammie and I had some time to kill before another appointment and happened to drive by a Kohls.  I asked her if she wanted to go in and buy school clothes, and she was game.  And guess what? My girl was a maniac in there.  I was both exasperated with her and elated.  See, Sammie's never been able to run away from me in a store . . . and here she was, wheeling away, and me chasing.  Wheeling over to stacks of shirts and saying, "I want this one.  It is purple, my favorite color!  Do they have my size?  Look for a 5!"  She picked out a ton of clothes, moved freely in the store, and had me giggling the entire time.   We walked past the men's department where the suits were and she yelled, "They sell prince suits! We should get a new one for Dada!"  As I was paying, she wheeled away and I looked over and she was opening a chocolate bar and said, "Mama!  Look what I found!"   (Later that night when B asked her if she'd had fun shopping, she said, "I was out of my mind in there!" Indeed she was.)  

That shopping trip will easily go down in my favorite memories of all time.  

The first time I chased my Sammie B through a store.  

The first time I said to her, "NO! Sam, put that back and stop wondering off!"

The first outfit she picked out all on her own, when given free reign of the store. 



Girl has style.

* * *

The next day, Sammie's nanny took her (in her new outfit, of course) to the Science Center.  During the day, she sent me a video of Sammie maneuvering herself up to the exhibits to look.  All by herself.  And I sat in my office and watched that video over and over and cried some of the happiest tears of my life.  I called my friend into my office to watch the video with me again.  I said, "do you know how big this is to me?"  And she said, "I do.  Right now, I see a little girl whose body is finally being as independent as her mind and spirit have always been."

And with that, I cried some more.  

* * * 

These new wheels are a beautiful thing.  More beautiful than I ever, ever could have imagined. 

So here I am, sitting in my living room, with the cutest, tiniest purple wheelchair parked next to me.  It has pink and purple princess crowns on the backrest, and it is so, so cute.  So now, looking at my girl's first wheelchair, while she sleeps soundly in another room, all I can think of is how very, very proud I am to be her mama, and how very, very much promise and possibility comes with this little chair.  And how very, very Sammie B it all is. 

So very Sammie B.  

Full of style and possibility.  


Cheer on Team Sammie B, Cheer On!!!

And tomorrow, I send this big girl off to a brand new school, with her brand new wheels.  Be still my heart. 




Saturday, August 31, 2013

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!


Wednesday, August 14, 2013

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.   

Sunday, August 11, 2013

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.   

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.