Sunday, May 11, 2014

Just Doing It - Part II: The Mia Mia Edition


I started this blog as a way of chronicling our life as we navigated the world of physical, occupational, etc. etc. therapy with our Sammie B, who has cerebral palsy.  So, understandably so, the Sammie B-emphasis is heavy here . . .  but then Mia came into our lives, and while she may not be the focus of as many posts, she is, just as much as her big sister, the focus of our lives.  Mia is the perfect little fourth puzzle piece to our family.  We couldn't have picked a more perfect fit for our family than this girl.  Really. 

Mia Mia, from four months until now (center picture).  Growing up.  

So, here's an update on all things Mia.

First, as I think was evident in my "Part I" post about Sammie, Mia Mia so looks up to her big sister.  She finds her sister hilarious (and the feeling is mutual).  While, like any siblings, they bicker (what feels like non-stop some days) over toys, and Sammie sometimes does things that she knows irritates her sister, there are so, so many moments where Mia just leans in and gives Sammie a big hug and kiss, and moments where they tell the other one "I love you" and those moments make all the bickering seem so insignificant.

Mia loves music and dancing.  She turns everything into songs, and indeed, her voice even has a sing-song quality to it.  When they lay in bed talking at night, and Sammie fades off first (as is usually the case; Sammie rarely naps, Mia always does), Mia just sings to herself.  About everything.  Last night she was singing about how when she woke up, Mama would come in and she'd drink milk and it'd be so nice and yummy.  

She's learning and understanding feelings, and expressing herself so well.  When she cries, she will throw herself on the floor and say "I'm so sad because I'm not happy!"  She feels sadness for others (like when B was traveling for work - "I'm so sad dada is not here"). 

She once asked me what B was doing on a work trip (it was a conference) and I said, "he's going to talk to people," so now she always says B "talks to people" at work, and one day, she grabbed her own little bag, and said, "Bye, I'm going to work.  I have to talk to the people."   I adore her.

I especially love when phrases and words come out of her mouth in the exact way Sammie says them, with the same intonation and everything, like "I have an idea!" or "I'm just having a rough time" and "Don't be mean to me!" (When she's told "no" by one parent, she'll usually come running to the other one saying, "I'm so sad.  Dada's being mean.  Dada told me no!")  

I love to watch her with her baby dolls.  I love to watch her imitate the things in her life - the things I say, her teachers say, etc.  I once heard her with her baby doll saying "it's okay baby, your mama will be back, I promise.  Your mama is going to work, and then she will come back."   That made me feel so good about Mia's daycare.  Watching her nurture her babies tells me my girl is getting enough nurturing herself.  She's modeling it.  Just by the virtue of our life circumstances (and the fact that Sammie needs my arms a little more) I have worried that I haven't held Mia enough, that she's been forced to be more independent at such a young age -- though my hunch is she would be any way -- but watching her with those babies, watching her rock them and soothe them and talk to them just as I talk to her when she's upset, or watching her run to another kid at the park or at school if they are hurt, to ask them if they are okay, to kneel next to them and try to comfort them, then I know . . . she's getting enough.  As much as I - and most mothers - worry that we are not enough, on this page, I think I am.  And my proof has come in watching her model me.

The girls want each other all the time.  We often run an errand with just one of them, and call it special time, but usually, they ask for the other one to come too.  And if given a choice, they would always pick for all four of us to go everywhere.  I love that.

When Mia was one, I wrote that she did everything in a big, big way.  She still is.  Big tantrums, big giggles, big fun, big drama, big love and big joy.  And I wouldn't change that for anything.  My hope for her is she keeps doing life in her big, big Mia way.   

Just enjoying a little post-cupcake-making cake batter.

I've gotten a total kick out of the fact that Mia prefers t-shirts to dresses and nightgowns (polar opposite to Sammie) and she makes it known.  At night, Sammie insists on a nightgown, Mia insists on a t-shirt.  The few times we can get them in matching nightgowns have made Sammie's entire week, but for now, Mia is mostly a t-shirt girl.  (Sammie also wants Mia to dress up as princesses with her all the time, and that's just not Mia's thing.  She LOVES princesses, but dressing up as a princess, not so much).

But when MiaMia does dress up (though rare), it's her own way.  Her own style.  And we all dig it.

MiaMia marches to the beat of her own drum; outfit styled by her.
Speaking of princesses, we've now taken Mia to Disneyland several times and she goes crazy over meeting the princesses.  She pops out of her chair, screams the princess's name to call them over to her and then proceeds to talk the princess's ears off.  Showing them her shirt, her band-aids (that's an obsession all in its self).   During her last trip, we overheard her telling Snow White it was her birthday, and then changing her story to "it's almost my birthday" (it was not).  

After telling Snow White the whopping birthday lie.
The band-aids and boo boos.  Oh my goodness.  If Mia falls, she is a mess.  She needs a band-aid immediately and after skinning her knee a bit, she will, I kid you not, limp for days.  Days.  And sob over the thought of getting in the bath for fear her band aid will come off.  Mostly, B and I try to be compassionate here, but it's tough.  We can't let the kid go weeks without a bath because she skinned her knee.  We went and bought these HUGE waterproof bandages that we now tell her are magic bandages just for the bath, and that's helping.  There was even a morning when Mia was still limping around after a not-serious-at-all fall the day before that Sammie B said with all the seriousness in the world, "maybe Mia could use my wheelchair today."   (The skinned knees, by the way, are new territory for us, and what they represent is not lost on me.  My littlest girl who has the freedom to climb, explore, run, jump, etc. Skinned knees.).

MiaMia is a bit of a daddy's girl but I'm the first person she runs to when she's having a rough time, and in the moments when she's really struggling, she'll just look at me and say "I'm having a rough time.  Rock me!" and I do.  MiaMia, in those moments, you own me.  Really.   You are growing so fast.  So fast.  And I want you to want me to rock you forever.  

I've worked hard not to compare my two girls' journeys.  I find myself silently marveling at Mia running ten-feet ahead of me.  In those moments, it's not like I'm sad at all; I'm not even thinking "I wish Sammie could walk."  I'm not.  (Remember that now, Sammie now gets to dart off ten feet ahead too).   But because of the journey we are on, the ease with which Mia darts ahead is just not lost on me.  I must have 30 pictures of just that -- Mia running ten feet ahead of me.  I'm chasing and then it hits me -- the beauty of the moment, and I stop to take a picture, to appreciate the beauty in her running, with ease.



A friend posted on Facebook that her littlest one had started walking, and she said, "there's nothing like watching the miracle of new mobility as our baby took his first steps, though we've witnessed just as many miracles through his big brother, who's never taken a step at all."  So true.  Their stories are their own, but our stories are intertwined, and of course the way in which I take in Mia's experiences is affected by our journey with Sam.  But "affected' in beautiful ways.  Our stories are meant to be intertwined, and their stories -- each of them -- are made more beautiful by that very fact.

I am constantly watching and listening as Mia makes sense of how her sister has a hard time doing some things, but mostly, I've marveled at the fact that Mia hasn't seemed to notice.  One night, when we were listening to them on the monitor at bedtime, Mia was telling Sammie "stand up Sammie! stand up!" and my heart leapt a little, waiting for Sammie's response, wondering if Sammie would be upset.  Wanting to protect her feelings.  But Sammie just said with such grace and so matter-of-factly, "Mia, I can't.  I don't know how to stand up."  Mia repeated her demand, Sammie repeated her answer, and they moved on.  But my heart was still fluttering.  Tears came streaming down my cheeks, having that "I wish it were easier" feeling, but B wisely and so simply said, "Sammie wasn't upset.  They've already moved on to telling funny stories."  And so, I too, wiped my tears, and I moved on.  

Last night, during their bedtime chatter, Sammie told Mia "stand up in your crib," and Mia did.  And then Sammie said, "Mia you can stand up all by yourself.  I can't do that.  Good job!"  Again, my heart leapt a little.  But they moved on.  Or in moments when I'm carrying Sammie in from the car, and Mia wants to be held too, and I have to say "baby, I can't carry you both, but will you hold my hand?" and Sammie says so gracefully (99% of the time), so matter-of-factly, "Mia, you can walk, I can't, so Mama will carry me, and you walk."  My heart leaps, but they move on.  Sammie's simple explanations, told with such grace, and Mia's simple acceptance of those explanations.  Sammie is so acutely aware of her differences, and I'm fascinated, marveling at these two girls, and learning from them, as Mia is taking it all in, and making sense of it.   Their beautifully intertwined stories.

I watch as Mia hops into Sammie's wheelchair and propels herself around the house, giggling, or climbs into Sammie's walker.  As she uses a medicine syringe and pretends to inject something into her stomach and says "I'm eating like [M]" (one of our little buds with CP who has a feeding tube) and I marvel at her perspective.  Or how she runs to my friend's little boy, who is (for the most part) hooked up to machines and non-verbal, and she just runs over and says "hi" to him and starts telling him about what's on television or showing him toys.  Her story, her view of the world, is being shaped by kids like M, and kids like Sammie, and the beauty in that is something that takes my breath away.  Beautifully intertwined stories.



I've giggled as I realize that to Mia, our normal just is "normal" (whatever "normal" means).  For years, I've taken "wall pictures" of Sammie in outfits, and very early on, when I asked Mia if I could take her picture, and she would immediately run to and stand against the nearest wall, the way I would position Sammie for a picture.  Never occurred to Mia that we do the pictures that way with Sammie because that's what Sammie needs to stand.  To her, the wall is just where we do pictures.  Beautifully intertwined stories.  

Wall picture of a snazzy new-to-her outfit, with some dancing thrown in.

Another new-to-her outfit, wall picture. 

No words needed.  She was feeling so glam in this rain coat.  This picture so captures our MiaMia.
We've had a lot of fun firsts with Mia lately.  Her first time trying out a big girl bike (at a birthday party) (which ended in a scraped knee, two days of limping and three days of no bath).  It honestly just hadn't even occurred to me to TRY a big bike for her.  But she saw it and wanted on.  And when she got on, and pedaled, with B trailing along, I watched, and I marveled, and my eyes filled with tears.  Happy ones.  I delighted in it all.  I was so proud.  And Sammie B, sitting next to me, marveled.  And cheered her sister on with utter and total glee.  Beautifully intertwined stories.  



Her first ballet classes, and her first ballet recital.  As I stood and watched her, I felt nothing but pride.  Such intense pride and happiness.  Such joy watching her do new things and her feel joy in doing them.  Such surprise when instead of running off the stage or being timid, she walked right onto the stage and danced during her first performance (even though later, she did run down a few times to stay "hi" before running back onstage to dance some more!).  

Leotard on, ready for first ballet class.  

Oops.  Was she supposed to wear pink?  Mia's first ballet class. 

And their first public performance (at the mall).
If I'm being honest, and this is a hard thing for me to admit, but I worried, early on, that when Mia crawled and walked and rode a bike and did ballet and chased a soccer ball and all of these things for the first time, that I'd be sad.  Sad for Sammie.  But in those moments, there's been no sadness. I've stood, and I've marveled, and I've felt nothing but pride in my littlest as she grows and does new things.  As she writes her story, which is, of course beautifully intertwined with her sister's story.  Her sister who, without exception, in these moments is always Mia's biggest cheerleader.  Her sister who asks to wear a tutu to Mia's ballet class ("so I can look like a ballerina like Mia") and insists on sitting front and center to watch Mia do ballet, and who asks Mia at home to do her ballet moves.  Her sister who cheered louder than anyone when Mia crawled for the first time, and took her first steps, and learned to jump.  A big sister who is so, so proud of her little sister.  A big sister who is just delighting in what her little sister can do, while at the same time, keenly aware that many of those same things are things she can't do.  Yet accepting it all with grace.  Beautifully intertwined stories. 

And that makes me prouder of both of them than I could ever, ever possibly convey.

Two beautiful stories, so beautifully intertwined.  How lucky am I to be a part of (and help shape) those stories.   Their individual stories, their intertwined stories, and our family story.  Beautifully intertwined



MiaMia, I love you so.  I could not have designed a better little girl to be our littlest one.  I hope I can always be the mama you need me to be.  I love you with all that I am.  And the pride I've felt for your firsts  - your unique firsts -- is a pride that is just too big for words.  I want you to always know that.   I'm so lucky to call myself your mama.  


























Friday, May 9, 2014

On "Typical"

I guess this might the be the Part I.B edition, because I was thinking of a few more things I wanted to add to yesterday's post about our Sammie B right now.  So, here's the thing.  As Sammie gets older, sometimes, her differences seem more pronounced.  It isn't just that her peers are walking and she's not, which is where we were three years ago.  They are running.  And jumping.  And starting to ride bikes without training wheels.  And trading in bikes for scooters.  And writing letters and numbers and she's still struggling with straight lines and circles (though she's getting it, ya'll, she is!).   It stinks that her little body doesn't cooperate with her brain.  And so it frustrates me for her that she's this little girl who recognizes her letters, gets the idea of writing them, gets it when I write them, recognizes some words, but whose little hands just won't cooperate in writing those same letters herself.  If only I could give her the "easy" she deserves, right?   (Yes, yes, I say that often). 

Anyway, a few more snippets of thoughts I just had to add . . . .

One morning, not long after she started this school this year, she was sitting at the table coloring -- something she now really LOVES to do (which thrilled us because there was a long time when it didn't hold her interest for long and she wasn't even really confident enough to TRY).  Anyway, she was sitting and coloring and she said to me, "I just color.  I don't draw anything.  I'm not good at drawing."  And, my heart crumbled a little.  I don't like to hear her say "I'm not good at . . . " and that was the first time I'd heard that.  There were a few times after that that she told me her friends draw pictures of rainbows and "I don't draw anything, I just color."  I told her "just coloring is fine, and she's really good at that and always picks the prettiest colors."  My heart hurt as I had this conversation with her, and I asked her aide if any of the kids had ever told Sammie she wasn't good at drawing.  I wanted to know and understand where that thought was coming from.  Her aide said they hadn't, but that they often ask "what are you drawing?" to each other, and that Sam's answer is always "nothing, I'm just coloring."  

One of her genius therapists suggested buying her some abstract art books for kids and taking some art museum trips -- to show her that a drawing doesn't have to be of "something" to be good or celebrated.  I can't wait to do that with her. 

I've also been marveling at some other very "typical" milestones with Sammie.  Given her love of fashion, it is no surprise that Sammie LOVES the mall.  It is one of the few places I never, ever have to encourage her to propel herself in her wheelchair (rather than having me push her).  She takes off.  I always notice people looking our way and smiling as they see this sassy little thing zipping by in her wheelchair, giggling and saying to me, "I'm running away!" and I think to myself, "FOR FIVE YEARS I WAITED TO 'CHASE' THIS CHILD THROUGH A STORE! AND HERE WE GO!'"  I've said that to a few people - like a young'ish guy at the mall that was really laughing and talking with her.   She had wheeled over to him in a store and said "what's your name?  I'm here to buy a shirt for my dad.  His favorite color is blue."   I encouraged her to let the guy just shop in peace, but he was laughing and helping her find a blue shirt!  And she kept telling me - "I'm running away from you mama!"  I looked at the young guy, and said, "I waited five years for this little girl to be able to run away from me in stores!" and he got tears in his eyes.  I'm not kidding.  You know what?  This little girl is changing perceptions, everywhere she goes.  And I dig it.  There've been a few times in the mall or stores where I look away for one minute and then hear her, an aisle away saying "look what I found, mama!"  I will never.ever.ever take those moments for granted.  I even texted B from the mall one night and said, "I just had to talk to Sammie about strangers and not wheeling away from me in places."  As I typed that to him, happy tears filled my eyes.

Running away from me.  Typical.

There's more.   She makes poop jokes.  All things "poop" are funny.   She's learned that at school, and it's so typical and age-appropriate that I have a hard time reprimanding her.   Poop is funny.

And finally, mischief.   Sammie B was always so obedient and rarely got into trouble.  But lately, she tests her limits.  Typical.  Age-appropriate.  Frustrating (yes!), but I still dig it.  Case in point:  last night, the girls were in bed, and I heard Sammie tell Mia to open the sock drawer (close enough to Mia's bed for her to reach) and throw socks all around.  I went in there just as Mia was executing said directions, and told them to stop.  I told them I didn't like having to clean up that mess, and they needed to lay down.  Sam looked at me, then looked right back at Mia and said, "I want you to see if you can throw them all the way to me."  I told Sammie to please not tell her sister to disobey me, and I walked out.  As I was closing the door, I heard Sammie say "Mia, just do it!" with a total little giggle in her voice, and even though I knew I had to go back in and reprimand her, in my heart, I was smiling. 

Typical.  Age-appropriate.  She's just another 5 year-old little girl, and a really stinking cool one at that.  I dig her. 

Don't worry -- the Just Doing It:  Part II - MiaMia Edition is coming soon.  Can't leave that littlest one out - she deserves her own post! 

Wednesday, May 7, 2014

Just Doing It (Part I: The Sammie B Edition)

Sit down for a bit, if anyone is still checking in.  This is going to be a long one.  For weeks, I've had a folder of pictures saved on my computer for a blog post; I've had a draft blog post and "finish blog post" has been on my to-do list that I carry with me everywhere.  But that list also includes things like "call Dr. x and reschedule," "read list of iPad apps," (from developmental optometrist); "check on insurance for power chair," "review IEP goals," "IEP meeting," "send marriage certificate to insurance" (which for some unknown reason suddenly has questioned whether I should be on B's insurance) along with a million work to-dos, and for whatever reason, I've been unable to tick off the to-do list the way I usually can/do.  Sure, I've made all the phone calls, I've been to all the appointments, I've done the work that has had to be done, but the optional things on the list, or the "can wait until later" things, haven't gotten done. Sometimes, it feels like I can never do enough, and I fall into these schlumps where that "I can't do enough" feeling overwhelms me, and makes the weight of the day seem like too much.  I know that about myself, but it never makes the schlump any easier to climb out of.  But tonight, after a stressful evening and a few days of being solo with both girls (B is traveling for a conference), some rough bed times (our every night lately) and one little girl (whose name starts with an "M") who always has a rough time when B travels, I  know that right now, I need to sit and finish this post.  I need to write about all the every day, amazing, wonderful moments that make my heart feel like its going to burst with love and joy when I think of them.   I need to focus on those.  Not the overwhelming to-do list, the brief that needs to be written, or the bed time drama.   Tonight, I need to focus on the magic.  And writing about it always helps me do that.  

So . . . .

These two girls.  My Sammie B and MiaMia.  They rock my socks off.  Cliché as it may be, it is utterly surreal to me that I have these two girls, these two little people with opinions and ideas and stories and experiences and such amazing perspectives on the world.  Both of them talk non-stop, and the things that come out of their mouths blow me away.  Not a single day goes by that I don't think to myself, "I never even knew it was possible to love someone else as much as I love these little girls."   The two of them absolutely delight in each other, and I delight in them.  We delight in them. 

In their Easter Best . . .
And here's a little bit about what's been going on with us, and a little bit of the magic I'm delighting in, day in and day out.  I couldn't possibly capture it all, but I do have a little list of things I jot down (that were in my draft blog entry) because I want to remember them always.   (I warned you, this is going to be long . . . much of this little chronicle of our lives is for my own purposes; I want to remember them, exactly as they are, always, but I also love sharing with you.  I love sharing this journey, and while my lack of blog posts has made me think maybe I should just hang it up, I'm not ready.  Because this world -- the internet and community of mothers I've met on here -- the sharing of our stories, our children's stories, and our lives, in particular on this "special needs" road less traveled, has brought me so much sunshine.  I'm not ready to not do this, however infrequent my posts have been.  Psstt.  Leave a comment, let me know you are still there!).   Anyway, a long post is long overdue, and so I'm breaking it up into parts.  Starting with my biggest girl:

My Sammie B . . .
  • At five-and-a-half, Sammie B has an intense need to know what we are going to do each day.  I am a planner by nature (and I always joke that social plans with us can't happen unless you get on the calendar weeks in advance; not because we are so popular, but because, I am a Planner; spur of the moment is not my style, though I've been working on that (and finding joy in it!)).   Anyway, I wonder where this comes from with Sammie -- is she too just a planner?  A little Type A?  Is it because her world is so full of appointments (some of which are no fun for her) that she has anxiety and needs to know what's next?  Is it just who she is?  Is it just a typical kid thing?  Her first question, everyday, is "what are we going to do today?" and then "what about tomorrow?"  and "the next day?"   I patiently go through each day with her.  I get it.  The girl likes to know what to expect.  I can also totally understand that if your world is filled with appointments, some of which move around week-to-week, it's nice to know what to expect, and when to expect it.  I'd made an awesome pinterest-worthy picture calendar for her, but like many things, we weren't consistently remembering to use it each day (something I loathe about myself, but I'm going to ride the "self-forgiveness" train tonight and not beat myself up).   We do a lot.  Routine is not always our strongest suit.  
  • Sammie is the first to tell her sister when she's misbehaving (with a "MIA, NO.  We do NOT do [fill in the blank]!" (which sends Mia immediately into tears, saying "Sammie told me no! I'm so sad!"), but Sammie is also the first to tell her sister that she loves her when Mia is sad.  When Mia cries at bedtime, Sammie always says, "It's okay, Mia, I'm here.   I love you, Mia."  and I melt.    They really, really love each other. 
  • The other night in the bathtub, Sammie sat between Mia's legs, and Mia combed Sammie's hair, and Sammie called out to me, "Mama, I feel so happy! Mia is making me happy!"  That made me the happiest.
  • I recently told Sammie that my mom (a teacher) might have a little girl in her class next year who has cerebral palsy, and I said, "You can teach Gigi about CP.  Is there anything you think Gigi should know about CP?" and she said, "it makes you tumble!"   Well said, my girl.  I still look at this child, at how hard she works, at how she perseveres, and I feel such intense pride, but also a wistfulness that I can't completely explain.  While Sammie B, exactly as she is, has enriched our world -- not just OUR world -- but THE world -- in immeasurable ways, I still wish she didn't have to work so damn hard.  Oh if only I could give her "easy." 
  • Sammie B has such an incredibly sweet and cool connection with my mom.  When my mom visits, Sammie lights up.   One of my own shortcomings is that I don't just sit and play well . . . I'm restless, and in general, don't do "just sitting" all that well.  I sit to play games with the girls, or to draw, or play with play-dough, and I am constantly up and down doing other things.  But my mom.  She can sit and play with my girls for hours on end.  And they love it.  She must have sat for HOURS playing with Sammie's new Frozen princess castle at Christmas time.  And the "teacher" in my mom is just incredible with Sammie.  Patiently teaching her new things, giving her the confidence to "just try" and celebrating like a crazy lady when she does.  Playing tic-tac-toe, helping Sammie make "O's," talking to her in the most magical of ways.  I love sharing my girls with my mama.  It might just be one of my favorite things ever.  When my mom visits, Sammie B insists that my mom sit next to her in the car, she asks for her the second she wakes up, and she recently asked to call my mom and then said, "I wish you could visit everyday."  Oh Sammie.  (Gigi agrees!).   Their bond is just something special.    The last time my mom visited, Sammie B played sick at school for the first time ever!  I got a text message saying "Sammie says she doesn't feel well and wants to come home," and then moments later, "Never mind, I pressed her a bit, and she said, 'I'm not really sick, I just want to go home because mama's mama is visiting and I want to be with her!'"   Sweet lover. 

  • Speaking of my mom, she taught Sammie to play "I spy" on car rides, and now every where we go, Sammie wants to play it.  Mia has learned it too, and the way they say "I spy with my little eye" is so cute.  Neither one of them quite "get" that you have to actually SPY something before you name it (rather than just naming a random color and saying "no" to everything the person names) or it is sort of NOT FAIR to the people you are playing with, but we have fun.  (Well, to be fair, Sammie does "get" that, but she thinks it is hilarious anyway).  
  • Playing dress-up remains a constant favorite for Sammie.  "#costumeoftheday" is a frequent instagram label for me.  Sammie would be dressed "in character" all the time if she could, whether as a doctor, princess (mostly princesses), pirate, or chef.  She loves it.  I love her imagination.
Tinkerbelle, possibly over-accessorized

Mermaid Barbie
  • Sammie B is a girly girl that loves clothes.  Every single day she asks me to wear a dress, and every single time we go to a store, she asks for a new dress.  I love this about her.  Last week, we had an unexpected afternoon, just the two of us (one of her appointments was cancelled) and she chose to go shopping.  But the entire time we were looking for a new shirt for B, she was declaring "I'm so bored!  This store is boring!" and then asked, "Can I have a new dress?"  When I said, "Sammie you have tons of dresses!," she said, "but they are all dirty!  [not true, by the way] I have nothing new to wear to school!"   How old is this child?!  I'm just happy she's thrilled with a sassy new dress or shirt from Target, so her love of fashion isn't a huge financial hardship. 
A new dress Santa brought + a little sister photo-bomber

New spring duds!  thank you, Target. 

A new dress picked by Sammie on the way to checkout at Target - I'm a sucker. 
  • Our only real Easter tradition is that we let Sammie (and this year, Mia) pick out their own Easter dresses.  Since Sammie B loves poof and lace and all things sparkly, Easter is really her season.  This year, after she saw the Easter Dora special, she was also convinced she needed an Easter hat.  So, B took her to pick one out.  She also got one for Mia, because Sammie B never, ever picks out anything for herself without getting one for Mia too (melt!). 
More Easter fanciness - for an egg hunt at Mia's school

Officially my favorite photo "shoot" ever.  Photos by B. 

My new phone wallpaper, and a picture that makes me smile at least 8,000 times a day. 

Easter at home (we had an egg hunt with friends here, and mimosas. It was a perfect day!)  PS.  Another favorite picture.  No words for the way Mia looks up to her sister. 
  • Sammie B's confidence has exploded this year, and that makes me happier than words could say.  We attribute a ton of this to her new school.   Sammie's personality is just such that we often worry that her fear of failure is keeping her from trying new things (she's her mother's child), so we made "confidence" our number 1 goal for her this year, and are over the moon with joy.  She swims up to other kids at the pool, asks their name, what they like, how old are they, etc.  After one of those times, she swam back to me and said with utter and total glee, "mama, I made a new friend!".   I was (and am) so, so proud of her.  School this year has exceeded our wildest expectations.  It's been, in short, amazing. 
  • We decided to start giving Sammie B an allowance -- if she cooperates and works hard all week at all the things she has to do, if she chooses good behavior, etc., she gets $5 on Sundays.  (MiaMia gets $1).  If she chooses bad behavior during the week, we have something we can take away.  She has a sparkly purple wallet, and she loves it.  Except she won't take it anywhere with us.  "Why?" you ask.   Because, as she so clearly explained to me, she would rather have me spend my money and her save hers.  Well, bless her honesty.  Really.  That child.  (PS. at school, they were talking about mother's day and they were sharing nice things about their mom.  Sammie B raised her hand and said, "my mom buys me nice things! I like that!"  Yes, she does.  And she's lucky her mama is a sucker for a sparkly purple wallet too.)
  • Sammie B loves dinner time.  She likes for all of us to sit around the "big table" (in our dining room) and chat.  She isn't a big eater (a source of much arguing and bribing all the time) except for when it comes to dessert, but she loves dinner time.  She loves for each of us to talk about our day, and she always asks Mia, "what did you do at school today, Mia?"   The other night, it was just the three of us (B's conference), and I came up with a new dinnertime game --- the "I love you game" where we each took turns telling each other something we love about the other person.  Sammie told Mia she loves when Mia helps her do things that are hard for her (I melt!) and she said she loves when I let her sleep on my shoulder, and when I pick her up at school.  (I melt!).  [At two, Mia didn't quite get the game, but she said she loves when we roar like lions, so we did, she giggled in delight and we all had a blast.]
  • Bedtime at our house is . . . exhausting.  We give the girls ten minutes of talking, but they call us back in there no less than 8 zillion times every night.  But still, despite sometimes wanting to bust down the door and tell them to JUST GO TO SLEEP, it is a charming time.  Some nights, for an hour or more, the two of them just talk and talk and talk.  B always says it is "their time" and it is true.  They take turns telling each other what to do, they perform for each other, Sammie makes up stories and tells Mia, they show each other pictures in their books, they get into mischief.  I love it.  I also love that when they are doing things they aren't supposed to do in there at night, and I either talk over the monitor or go in there to tell them to stop and go to sleep, Sammie knows she's been busted and immediately flops down and pretends to sleep, while Mia just stands there smiling.  That makes me giggle.  Big time.  They make me giggle.   
Nothing  makes Sammie happier than matching nightgowns. Much to her chagrin, MiaMia is often more of a t-shirt girl, but occasionally, we convince her to wear one of the MANY matching nightgowns Sammie has picked out for them. 


  • They love each other, and Mia also gives Sammie the confidence to try new things.  Sammie can be (though much less so these days!) so timid and shy about trying new things, or even new words, but there's something about laying in bed, with her sister in the bed next to her, that gives my girl so much confidence to share.  They talk and talk and talk, and we listen, and we (mostly) laugh.  We delight in it.  When I was pregnant with Mia, I feared that by adding a new kid to the mix, we'd be taking something away from Sammie. That we wouldn't have the resources or time to do all that we were able to do for her, simply because we'd have a new little person needing our resources and time.  In a moment of panic, I cried, and made B promise me we wouldn't let that happen.  That we would still make sure we did everything we could for Sammie, everything she needed.   And now, thinking back to that moment, and those fears, and looking at our right now, I can say, with so much confidence, that Mia gives her sister so much more than she could ever take away.  So much more.  They give each other so, so  much, and I love it.   Love them.  The duo.  What a gift they each are to the other. 
 
  • Last night, I was just sitting down to start working (or procrastinating work, which is more accurate and honest) and the girls were in their room talking.  Suddenly, it was quiet, and then Sammie B started laughing so hard.  Like belly laughs.  And then Mia burst into tears.  I went in, and there was Mia, standing in the middle of the bedroom floor.  Sammie could barely get the words out she was laughing so hard:  "Mia just climbed out of her crib all by herself."  Thankfully, other than having bit her tongue when she landed, Mia was okay (but my plan to keep her in a crib until college is now foiled; we'll be converting the crib to bed this weekend), but crying.  I told Sammie, "Sammie, stop laughing!  Mia is hurt, and that's not funny!"  And Sammie said, "but it was funny when she climbed out of her bed!  And I'm going to tell her to do that again!"  We had a talk about safety, I marveled at how Mia accomplished it, and asked Sammie to explain how Mia got out of her bed, and Sammie kindly gave me a play-by-play.  Mia promised she wouldn't do it again.  Today, Sammie told everyone about it.  Such a highlight of her week.   (I also recently read a blog about things you'll learn from your second-born child, and one of them was something about how you will learn that the youngest child will do anything again if it makes the older one laugh, and the older one does not laugh at good behavior. . . . so very true in our home!)
  • Back in the fall, we hit a wall in physical therapy with the therapist we've worked with for the last two years.  In short, Sammie B was over it.  And in my head, I get it.  She deserved to be feeling over it, to be burnt out.  For four and a half years, Sammie B has had up to 8 therapy appointments a week.  She's been told what to do, how to play, and what to play with far too much.  She is, as our developmental pediatrician put it, a little "over-therapized."   Add to that her cognitive abilities -- Sam KNOWS what the therapists want her body to do; she knows what she wants her body to do, but her body doesn't cooperate.  And she resents the efforts to try to "trick" her into doing things her body just can't do.  That makes for a frustrating therapy session (for all involved).   She'd become so complacent, so despondent in therapy.  She said "no" to everything, there was little joy, it wasn't play.  Not at all.  She was done.  She couldn't be tricked into working anymore.  And so, that was when our PT (who I trust implicitly) suggested we take a PT break.  I cried.  I felt like our PT was "giving up," and it just felt like one of those punches in the gut that come along with this journey (that have the power to knock us over if we let them).  But a sweet (and smart) friend reminded me that Sammie was getting so much stronger in CME therapy, that it was just "traditional PT" that had little to offer Sammie right now.  And I knew that was right.  So, we pulled back from traditional PT (just seeing her once a month for a "check-in" and equipment consults), and have instead focused our PT efforts this year on CME (which we'd first done with Sammie last year during an intensive therapy session).  That method of therapy just works so well for Sammie.  There's no tricking her.  There's no "work" under the guise of "play."  Just work and honesty and transparency and clear expectations.  It's just "we are going to exercise your body;" "we need to do 5 of these and then we will do something else."  Honestly, I believe it works so well with Sammie because we aren't trying to trick her into thinking we are just "playing".  We are just leveling with her.  Talking to her like an adult.  And as a result, she's really doing it, and I'm so, so proud.  We find Sammie using her dolls and blocks and making them do CME (and she's tough, she says things like "nope, that one didn't count, start over!" just as her therapist does).   

Standing, with heel support only.   (On wooden disks that allow the therapist to provide additional balance/gravity input.  This method of therapy is amazing). 

Standing PROUDLY on blocks, with NO ONE touching her!!!!  Again, the therapist has the ability to offer correction for balance when needed. 
Walking with head support in CME.   The most natural gait I've ever seen from her.  I sat, photographed, cried, and kept saying "Sammie!"

Walking with B supporting only her thighs.  A CME-exercise.
  • At the therapy center where Sammie does her CME therapy, they hosted a family day on the weekend after they opened their new facility, and Sammie was SO proud to take B and Mia and show them.  She said, "daddy will love it so much, he will cry!"  And she insisted her little sister do some exercises before we could leave . . .
MiaMia doing CME while Sammie B directed.
  • I also recently joined a gym, and have started working out.  We tell Sammie B how important it is to exercise her body, and she does.  Oh does she.  Hardest working little girl I know.  And I've known for a long time that I needed to lead by example.  She should know I exercise too.  So, anyway, I took her to the gym, and showed her where I work out, and her first question was "do you have a PT here?" and my heart . . . oh my heart.  The perspective this little girl has.  Incredible.  Perseverance.  Perspective.  I could learn a few lessons from her in both of those things, no question.  And as I push myself to exercise even when it's hard, even when I don't want to, I close my eyes or I look down to my purple! running shoes, and I hear my own voice telling Sammie in a PT session, "come on babe, I know it's hard, just push through and we'll be done!"  Sammie B always pushes on.   I need to as well. 
  • At the same time that we cut back on traditional PT, we also found an adaptive gymnastics place for Sammie B and so she's doing "tumbling" once a week and LOVES it.  It is incredible.  Everything they do with her there is very PT-like (like climbing over tumble form things, standing at parallel bars, etc. - which she would flat refuse to do in PT) but she's more intrinsically motivated because, well, it's not PT.  It's tumbling. And she's surrounded by other kids, big and small doing the same thing.  She's doing gymnastics, and wearing a fancy leotard, and that makes her confidence soar too.  I'm so enchanted with her.
Day 1 of gymnastics, her new leotard picked out by HER of course.  Purple and sparkly, what else?

  • While the "break" or cutting back of PT was a hard pill to swallow, that's part of this journey. I know my fellow special needs mamas will understand this . . . that feeling like something always needs adjusting, tweaking, and little tweaks make big differences.  But for someone who herself finds change a little uncomfortable (ME!), this can be hard.  But if ever there were a girl worth this - it's Sammie B.  And the tweaking always leads us to new and exciting and things and opportunities.  Always.  Like the gymnastics. 
  • Sammie B cannot be tricked.  That's also made therapy challenging.  The "oh you want to color, okay, then let's walk over and get that marker" business isn't going to work on this kid.  I sometimes laugh when I hear adults tell Sammie B the kinds of things we all say to placate kids (the empty things, the "because I said so" kind of things) and she immediately calls them out on it.  Makes therapy hard, yes, but I'm certain that spirit is going to take her further in life than any PT session ever could.  She's a cool kid.  No question.
  • Sammie B is a mama's girl.  She still begs to sleep with me, and while I don't often indulge that (mostly because I can't sneak out of her bed in the mornings to get ready without waking her), when I do, she crawls onto me, puts her head on my shoulder, and I melt.  Still.  I love this little mama's girl.  With all that I am.  And when her head is on my shoulder, and she's softly breathing in and out and sleeping, all the worries, and to-dos and thoughts of tweaking and planning and adjusting really do melt away.  And in those moments, even the longest of to-do lists seem insignificant. 
Whew.  Knocked this blog off the to-do list and am glad I did (well, knocked 1/2 of it off my to-do list - stay tuned for Part II - the MiaMia edition).  There's nothing I like spending time sitting and thinking about than my sweet moments with my girls. 

To my two girls, I delight in you.  Each of you, and both of you.  You are amazing.  I am so, so lucky to be yours.  I love you with all that I am. 

One of my greatest wishes for each of you is that you will always delight in each other the way you do now.  That you will always look for ways to help the other feel a little more confident, a little more brave, and a lot more joy.  


Turned around in the car and saw this, and you guessed it, I melted (and grabbed my phone to take a picture).  

 May they always reach for each other.  


[I hate that the formatting of this post is all messed up and pictures are not aligned.  Some day, I'll find the time and technical know-how to get off of blogspot.  I've aligned every single picture the same, and it looks right in my drafting window, but not in the actual blog.  Same with the formatting for the bullet point about Sammie not being able to be tricked.  Just randomly appears messed up.   Am I the only one that has blogger formatting problems OFTEN lately?  Hate that, blogspot!  I was near the pounding-on-they-keyboard point, and lest I lose my zen moment post-blog, I gave up.]


Tuesday, April 15, 2014

We won the lottery!

Okay, not that kind of lottery, but it feels like it.  After so much worry and wonder about where Sammie B would be next year for Kindergarten (if you've been following this blog for long, this worry and wonder is no news to you), we found out that this year we got into the charter that was our top pick!  A charter that is founded on a model of inclusion, designed to teach all children in the same classroom.  A school with general education and special education teachers there to serve every student, a school with tons of "typically-developing" kids learning right alongside those with challenges, a school with PTs, OTs, and STs there to lend their expertise.  A public school committed to making sure that my little girl's physical challenges don't impede her ability to learn and thrive.  I truly cannot even have designed a more perfect school for our vision for Sammie, and we are thrilled. 

Beyond thrilled.

The worry and wonder leading up to this year's IEP was consuming me.  Absolutely consuming me in a way I'm not proud of (because I wish I didn't let that stuff consume me, but it is who I am), and after last year's IEP and all that led to our decision to pull Sammie out of the district's program, I guess my worry was justified.  But now . . . . relief.  

I honestly feel like a 10,000 pound weight has been lifted from me, and while I stand by my sentiments about how horribly unfair it is that this kind of education isn't the norm, and that my kiddo getting into this school had to be determined by her random number being drawn out of a hat, right now, I couldn't be happier or more relieved!

Happy, relieved, and freaking out a little that she's really going to start Kindergarten?!!!! 

Where has the time gone?!

When did she become such a little lady? 

One of our "this outfit is too stinking cute not to be photographed" pictures.  Thank you, Target!
I think she's ready for next steps, but I'm not so sure I am!  But I'm just really glad the next steps are leading us to the right school.  

Thursday, February 27, 2014

A Punch in the Mama Gut

If you've been following the blog for awhile, you know what a struggle finding a great school for Sammie has been.  We made what felt like a massive leap of faith and pulled her out of public school -- away from the supposed "experts" -- and put her in a private school with no PTs, no OTs, no special education specialists, and she has thrived.  (You can read a little background here).   The problem is, the school is a preschool, that just happened to have a classroom for 4 and 5 year olds, like Sammie, whose parents wanted an extra year before kindergarten.  So, now that this amazing year is nearing an end, we are back to square one.  Back to charter school lotteries, crossed fingers, prayers, IEPs, assessments, and worry.  Back to hoping beyond hope we can find another good fit.  Though at least now, we are armed with a better idea of what works, and what works well, but the bar is set high.  This new school has set the bar amazingly high.  I cannot even put into words how wonderful it has been.  That our little girl's confidence has exploded, that she's made friends.  A best friend even.  One whose hand she holds while they watch their favorite princess movies.  And for the first time, I left a parent-teacher conference crying happy tears because I knew those teachers were taking the time to get my girl (they shared stories of her asking great questions, remembering everything, occasionally "interrupting," (and this from the little girl who the IEP team last year said wouldn't talk in the group) her silliness, her joy, her magic).   It has been an amazing year.

A year that gave us the confidence to seek out private schools for next year, even in this crazy town of pretentiousness and private schools that get hundreds of applications for 50-60 spots.  So that if the charter lotteries don't work out (again), we'd have a plan B.  I called school after school.  I toured school after school.  I looked for schools with missions and environments that promoted community, empathy, and diversity, and we applied.  I was very forthcoming on the applications, about Sammie's cerebral palsy.  I encouraged them to call me to chat ahead of time.  We spent a lot of time investigating our options.  We had a top choice, and it seemed like such a great extension of the school where Sammie is now.  Sammie even did the "student interview," and nailed it.   The psychologist who did the interview/informal assessment remarked about how "astute" and "clever" our girl is, how she was an absolute gift, and said she had no concerns about Sammie succeeding there.  We were so, so optimistic.  So much so that I abandoned a few other private school applications.  

There were a few things that put me "off" a little during the process.   A principal who referred to the "issue of whether they could 'entertain' the idea of having Sammie there."  The probing financial questions.  But I sort of chalked that up to him being an old fart who isn't very PC, and the school being a slightly pretentious southern California private school, like the rest of them.  The thing is - we could afford it.  Yes, it would mean we would be incredibly strapped (because we'd also be funding our own one:one aide, as we have been for years now).  But we could.

And today, I got a call.  The admissions committee met and they decided not to offer Sammie a spot.  She fed me some bullshit company lines about how they were just thinking of Sammie's best interests and thought she'd be better served in a public school because they have the types of resources Sammie might need.  You mean the resources we said we'd provide at our cost?  And "what Sammie needs?"  You mean you don't have good teachers and a caring and nurturing environment?  (And yes, I said that to her).  Because that's what Sammie needs.  I also told her that Sammie would have been an asset to their school who could have taught them all some invaluable lessons in empathy and community and compassion and that it was their loss.  And then I hung up.  Shell shocked.

And then I cried.  I felt punched.  And yes, it truly, truly is their loss.  But the thing is, this was a punch.  And I think I've been so comfortable in our world lately.  With school this year just going so smoothly (not just smoothly but really truly fabulously well), that I haven't felt punched like this in awhile.  And what hurts the most is that this time, I got to take the punch.  I took it, and Sammie doesn't even know that this happened.  But I won't always be able to take the punches for her, and I hate that.  I hate it.  I hate that her best friend, the one she holds hands with and giggles with and is learning right alongside this year, gets to go to this stupid pretentious school (that we were in love with) and Sammie can't.  And for no good reason other than a bunch of close-minded, pretentious assholes.

And I hate that I can't protect her from close-minded pretentious assholes.  I hate that I can't take every single punch for her.

I hate that I can't even count on a school that says its "mission is to create a community of lifelong learners that nurtures students from diverse backgrounds to reach their full potential and inspires them to contribute to the world with confidence, creativity, curiosity, conscience and compassion," will accept my girl.   I call bullshit.  Conscience and compassion, my arse.

I am just so angry.   And sad.  And disappointed.  I hate it.  It was a punch in the gut, and I sobbed all the way home today.  Then I came home, had dinner with my two magical girls (and B) and sat and laughed and giggled and wished I could wish away the pain and disappointment and worry in the pit of my stomach.  Then, I called my mom, and cried some more.  Then I talked to one of my dearest, wisest friends, and she said exactly what I needed to hear:

It's not fair.  The world is full of assholes.  But Sammie is surrounded by loving people who know her value and worth, and she will share those gifts with the world and live a life with purpose.  She already is.  Some people will miss out on that.  Their loss.

Indeed, their loss.  I just wish it didn't sting so much.

The other night, I was laying in my bed with Sammie, and I told her I was tired and frustrated and a little crabby (because Mia had thrown a hundred, I mean, a few, tantrums that night) and Sammie said, "would it help if I lay on you and snuggle you?"  And she did, and it helped.  The crabbiness melted away.

So tonight, I'm going to do what I usually do when those old, familiar, nagging worries or the pissed off "it's not fairs" creep in.  I'm going to go climb into bed with my big girl, let her lay her head on me, and I know . . . it will help.

And for tonight, I'm not going to think about what the loss of "Plan B" means.  I won't think about how this means we are right back into a world of IEPs and stupid formulaic goals and measures and assessments that tell me nothing about my girl's magic.  Nothing. 

Tonight, I'm just going to hold her.  And be glad that this time, I got to take the punch.

Sammie B, there will always be assholes in the world.  There will be people who underestimate you, or who just don't "get" you.  But my girl, know this -- you are amazing, wonderful, incredible you.  You are magic.  And for anyone that doesn't get that, or see that, it is their loss.  For those that see you, that get you, that get to walk this journey with you, we are the most blessed people on earth my love.  And baby, if I could somehow take every disappointment and punch in the gut for you and your sister in life, I would.  In a heartbeat.  That's just part of being a mama.  And I'm lucky to be yours. 




Sneaking into their room in the middle of the night, watching them both sleep so soundly and sweetly, sometimes, that heals me in ways I never knew possible.  And tonight, I hope it will melt away a little of the pain and sting and disappointment and anger over what is truly, truly just not fair