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.]

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.  

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. 

Billable Hours with Someone Special

For the past few months, I've worked far more than my "reduced-schedule" commitment, but the last month took it to entirely new proportions as I was in pre-trial mode.  (Any illusion that making partner means less work can be thrown out the window).

Anyway, I'm an adult, and I've done this all before -- I know the slammed times always pass and give way to some amazing days/weeks at home with the work/life balance swinging in the other direction -- so while being away from my family so much stank, I knew it was "just for a season."  But Sammie really, really struggled with it.  One day, she started crying at school (a first) and said it was because she "missed her mommy."  (My heart broke upon hearing that, though I felt a little better that night when she told me it was just a rough day because (1) she missed me and (2) I sent a hot dog for lunch when she really wanted a waffle.).  

But, when Sammie hits phases where she's whinier than normal, misbehaving more than her normal (which is hardly at all), I know that it's because something is bothering her, and it never, ever fails that instituting some "special time" with just her and I always seems to really help.  We've done this since Mia was born -- a date out for Sammie with me while B has a date with Mia, or vice versa, and we label it as our date/special time.  And somehow, at the end, we all feel magically refreshed.  I knew this was all just a season, and she just needed us to "love her through it" and we are doing just that.  

Sammie has also pretty much stopped napping so I've used Mia's naptime as a way to squeeze in some time with my big girl, and lo and behold, she's rebounding.  

Today, when asked "where do you want to go during our special time?" she picked, of all places, my office.  So off we went.   I think it helps her to see what I do there, and for "mama is at work" to not just be some abstract idea.  We've talked about how I work hard all week, she works hard at school and in her therapies, and on the weekends, we get to relax and be together (which is of course, complicated when I have to work weekends, but I've managed lately to work minimally during the girls' awake time on the weekends by just never sleeping myself but it's a sacrifice that is well worth it).

Anyway, she had a blast at my work.  She loves to type and tell me what letters she's typing and then have me print it so she can bring it home to show B.

When I took the middle picture, she said, "I'm pretending I'm a lawyer." 

I hope she always sees my office as an exciting place and not one that she resents.  I so want her to come to understand, appreciate and respect that I work so hard . . . and not to resent my work as a reason why I'm not always home when she gets home, why I don't send the home-baked cupcakes to school, etc. (hey, I do buy from a fantastic bakery!).  

I hope she knows if given a choice, I'd pick being with her (and her sister) every.single.time while at the same time understands that my work has tons of value, and brings tons of value and enjoyment and satisfaction to me. (and pays the bills so brings value to our family!!)   Just not as much as she and her sister bring!

Being a working mom, particularly the higher-earning spouse/mom and working in a demanding career that sometimes feels like I'm on call 24/7 is no easy balance.  It is not.  But it does bring value, and allows us to do so much extra stuff for the girls that we otherwise couldn't, and well, it is what it is, and I love it (most of the time).   I am just not sure I know how to instill in my girls that mama's work is not something to resent . . . I know I all too often use language like "mama has to go to work, I'm so sorry," and I'm trying to turn those statements around into "mama has a challenging and fun project to finish at work, but I'll go work hard and then we can have some special time later -- let's both work hard today, okay?"   But the messaging is not easy . . .

I hope, hope, hope I'm getting this part of the journey right, and doing right by my girls in this regard. 

I miss them when I'm not with them.  Heart-aching, longing to be home with them, miss them.   But I'm also blessed to have a career I find exciting and one that brings so much value to me and us.  Oh how I wish I didn't feel like the two are so often at odds. 

Work-life balance-schmalance.  Sometimes you just do what you gotta do.   And take the slow-times and seize them with all that I am.  Which is exactly my plan for this week.  

Sisters

Last night, I read "Rolling Along, The Story of Taylor and His Wheelchair" to the girls at bedtime.  (Of all the kids' books about CP that I've bought, this one is my favorite.  I've purchased multiple copies and will give it to Sammie's new classroom teacher every year to share with the class).   As we went through it, Sammie B smiled (as she always does) when I read the parts that also pertain to her like "each week, I see a physical therapist."  Mia (a child who rarely sits for an entire story, at least at home, particularly one as wordy as this one) sat and listened intently to every word.  At the end, I said (to both of them) "do you know anyone who has cerebral palsy?"  Sam said, "me!" and Mia said "and me!"  I then said, "Mia, you don't have cerebral palsy, but Sammie does.  That's what makes it hard for her to do some things, like walk."

And with that, my sweet two-year-old did something that showed a compassion, empathy and understanding far beyond her years . . .

She looked so sad, and so concerned, and leaned over, hugged Sammie, and said, "Oh Nammie. It okay, Nammie.  It okay" and patted her big sister on the leg.  It was as if she had never even noticed that Sammie doesn't walk, and she was learning this all for the first time.  I explained that it was okay, and we didn't need to be sad about it, it just is.  That we are all different, so Sammie would do things in a different way.  And within seconds, we were back to giggles and play.  

And inside, my heart was both melting and swelling with pride.

No question, my sweet Mia Mia is blessed to be Sammie's sister, and Sammie is blessed to have her Mia Mia.  And me?  Well, I'm as lucky as they come getting to be their mama.

Mia came with us to Sammie's hippotherapy session last week, and ran around the outside of the ring alongside Sammie and Fancy the whole time.  They were absolutely delighted to have this experience together.  My heart my heart. 

Tickled Pink

I'm determined to post more in this new year than I have the past few months.  I think I've had an epiphany the last few weeks (home! no work! down time! do you hear the angels singing?! our nanny needed two weeks off and the stars aligned that I was able to stay home and barely work at all.  It was everything that I needed). 

In the downtime, I've realized something that I hope will serve me well in 2014 and beyond . . .

I keep waiting for things to get less complicated.  For it -- life -- to get easier.  For there to be less to do.  Less to worry about.  For my to-do list to not overwhelm me (or for a day without one).  For marriage to feel easy and breezy, and not like a constant work-in-progress.  Waiting and waiting and waiting.  I'll have some future deadline or event in my head and think "after x, things will be easier" or "after x, I'll be able to get y done, and then, it'll be easier."  After the new school year starts, after I make partner, after after after.  But the event or my artificial deadline comes and goes, and nothing is really any easier, and the to-do list never, ever seems to shrink.  (P.S. Big news - I made partner in my law firm in 2013, but guess what?!  I still work my rear off.  Not easier.).  

Or just as things feel less complicated or even a little easier for some brief time, something happens that adds to my to-do list or gives me some new worry (and let's be real, "worry" is practically my middle name, it is who I am).  A therapist suggests some new "thing" for me to research, I have an unexpected trip out of town for work, someone mentions another school to check out, we get an insurance denial for something (that winds up costing us a fortune), etc. etc. etc.  Something always needs tweaking.  I see glimpses of friends' lives via social media or whatever, and somehow, it looks like their lives are so easy and effortless.  You know, friends with just as many (or more) kids than I have, made up, dressed up, having dates nights, their kids' hair looking neater than mine, their houses bigger or more perfect, whatever, and I think "when is it going to get easier? when will it be less complicated? when will it be our turn for 'easy'?"

But here's the thing (the epiphany).  Things aren't getting easier. But every single day, the joy and the love in this house, this family, this life, multiples.  I didn't know it was possible to love these two girls anymore than I did, but yet, every day, they amaze me with their giggles, their love for each other, the things they say (oh!!! the things they say!!!), all of it.  I must smile hundreds of times each day, because of them.  And every single day, my heart seems to grow 1000x times.  I never, ever, ever could have guessed this story would be ours.  Never could have dreamed it.  Couldn't have fathomed the amount of love and joy and giggles and goodness this life would bring.  Or that it would just grow and grow and grow and grow and multiply 1000x a day.  

Couldn't have dreamed it.  So, even in the midst of complicated, and endless to-do lists, it just keeps getting better.  Not easier, but better.  And that's what matters. 

I wouldn't trade this life for anything in the world. 

So, my New Year's resolution?  To stop waiting for the "easier," and instead, just relish in what is.  Because what "is" is pretty stinking fabulous. 

Couldn't have guessed this life.  Couldn't have dreamed this life.  Wouldn't trade this life.  For anything. 

For this little family of mine?   I am so lucky to be theirs.   So, so lucky.  They tickle me pink.  

This life of mine is a blessed one.  This family amazing.  And I wouldn't trade it for all the "easy" in the world.  Not a chance.  I'm one lucky mama, and these two little girls make me a better person every single day, and even on the days I'm not the mama I strive to be, I fall asleep full of so much love and joy and determined to do even better the next day.  For they deserve no less.

So forget coveting or dreaming about easy, for I'll take this.  I'll take them.  Over and over and over.  

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And these pictures?! Could anyone have captured our family any better?

Do you see the love in these pictures?  The melt-my-heart, I wouldn't trade this life for anything, love?  Captured by my sweet friend H, from Capturing Motherhood.  Another sweet blessing.   (You can see some higher resolution versions of these images if you click on the link because, well, H does fancier stuff with her blog than I know how to do!)

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Forgive my lapse in posting, and please, please keep coming back.  I think 2014 has a lot in store for this little family, and I can't wait to share it with you.

xo