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

Monday, February 24, 2014

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.  

Sunday, February 16, 2014


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.