Brave

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

So, so brave. 

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

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

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

Our girl was so, so brave. 

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

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

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

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

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

And she really has been mostly herself all day. 

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

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

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

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

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

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

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

This surgery is behind us.

I remain inspired by her.   

Twas The Night Before and Mama Is a Wreck

After what was a perfect 34th birthday and weekend trip away with my little family, tonight, we  took Sammie B to buy a new princess nightgown (Cinderella!) and a new princess dress (Merida, from Brave . . . appropriate) and then we told Sammie B she was going to sleep with us tonight so we could talk to her.  We tucked Mia into bed, and then we explained to Sammie B that tomorrow morning, we are going to go to the hospital, they will put her to sleep and then while she is sleeping, her doctor will try to make her eye muscles work better.

When we told her, there were giggles (when she said, "will you buy me things?", to which I responded, "my girl, this week, we will pretty much buy you anything you want!"), there were questions, and there were tears (when we explained her eyes might hurt a little bit). 

And there were more questions  . . . . 

Had we ever had surgery?  (Yes, though B's only one has been having wisdom teeth out, yet this fascinated Sammie B beyond words . . . "Are you still missing those teeth?" "Let me see!").   

Will we be with her the whole time?

What will be on the gown they make her wear?

. . . 

We've been down this road before.  This is her second strabismus surgery, so we do know what to expect, though doing this at 4 and a half is much harder than it was at 8 months old.  Much harder. Because of the questions, her awareness, everything. 

Of all of Sammie B's struggles, her vision is the thing that hits my heart the hardest.  That she has to work so stinking hard just to keep her eyes focused and still . . . and when things move or her head moves, that she has to again . . . work so stinking hard to get them refocused, and get them still, again.   And, we know for her, that fixing the eye muscles won't make all of this easier.  We know that part of the problem is her brain's ability to coordinate her eye movements . . . but we also know that right now, the muscles that were operated on before (to keep her eyes from crossing) have loosened, and now, her eyes turn out, ever so slightly, and that she's constantly trying to refocus them and bring them in.   She's constantly working to do what you and I take for granted . . . to point both of her eyes at the same thing, and to focus.  Her vision issues are complex, and while we know this likely won't eliminate all of the difficulties for her (it isn't intended too -- there isn't anything that can eliminate it all), we are hopeful that it will allow her to focus with less work.   

I hate it.   I hate it for her.  

And so, tonight, I will be begging and pleading with the universe that this little surgery goes smoothly.  That my girl rebounds quickly.  That she feels little discomfort and little pain (none would be even better) and that . . . it helps.  That it helps make this so very basic thing -- focusing -- easier.  And, tomorrow, while this amazing little creature is back in the operating room, I will again be pleading with the universe, my stomach and heart in absolute knots until I can hold her again, see her eyes, look at her, talk to her, be with her.  

I'd trade my eyes (and eye muscles and whatever else she needs) for hers in a heartbeat if only I could. 

Oh how I wish our Monday looked different. 

Oh how I wish we were not headed into surgery tomorrow.  

Oh how I wish I could give her the easiness she deserves in this life. 

Oh how I love her.  

Knock-me-over, take-my-breath-away love her.  

Oh universe, take care of my girl tomorrow.   And, please, please, please let this surgery be effective and helpful. 

Please.   I beg.  

And may I be as brave as she is through this.  

Perfectly Imperfect: Guilt

My sweet (and genius) friend H hosts a weekly "link-up" for bloggers to share the "Picture Me {Im}Perfectly" moments of their lives.

Here's the thing -- I am constantly (we all are probably) reading blog posts and facebook status updates that describe friends'/acquaintances'/blog land strangers' lives in such an idealistic way that it makes me stop and wonder why is it so easy for her/him/them?  Why do they have it all figured out when I'm struggling? Case-in-point:  I read a blog post today from a blogger who said (essentially):  "I've never understood when people talk about 'guilt' associated with mothering; I do the best I can . . . ."  I remember another post from the same blogger saying "I've never understood why people say marriage is hard."

So yeah . . . obviously, some people have it all figured out.

I can tell you, hands down, however, that I do not, and I celebrate my friend H for encouraging women to share their "imperfect" moments, to encourage and inspire and remind other women that NONE of us have it all together all the time.

With that background, let me tell you this:

Lately, I am held together by a string.  A very, very fragile string.  I am working a lot.  On cases that I love and I am getting great opportunities and really, really growing as a professional.  I've argued (and won!) multiple motions in court in the last few weeks, I'm taking and defending depositions, I'm really, really lawyering.  In a fun, and amazing way that makes me feel good about myself . . . most of the time.  The pressure is also intense.  That feeling of worrying that I'm going to screw something up, of knowing the partners' exceedingly high expectations.  And then there's the issue of my reduced schedule which has NOT been reduced as of late (but I know this is cyclical).

While I'm almost always able to leave work and make it home for bath and bedtime and to spend some time with the girls, there's been not-so-infrequent travel (though I do a lot of red-eyes to avoid to much time away even if that means sheer exhaustion for me), and some late nights.   While B is handling this all like a champ, and I KNOW that the girls are fine, fine, fine (better than fine), there are moments when I just feel stretched so, so thin.

And moments that I really, really hate that during bath or bed time, I'm watching B play and have fun with the girls in a much more easy, breezy way than I do, because I'm fretting over the work that awaits me while the rest of the world is sleeping.

Guilt.

There is nothing - nothing - in this world more important to me than being mama, and I want my girls to always know that.  I also hope that they understand someday that in the moments when I say things like "hold on sweetie, mama has to just take this one work call," that they will someday understand.  That they will know it wasn't me choosing work over them.  That they will know that it was just part of my attempt to "do it all. . . . " to manage to still be a great mama while working, and that they will respect me for it.  I hope so.

The constant "bleed" of my work/life balance is exhausting.  While I'm lucky to have a job as flexible as it is (that allows me to work from home pretty much whenever I need to, which in turn allows me to be at doctor's appointments, school events, etc., which B's less flexible job -- while having the benefit of less hours and more regular hours -- doesn't allow), the thing that has me just feeling beat up lately is that . . . it isn't like I'm taking time "off" to do these things. It just means that I'm sitting in the neuro-ophthamologist's office at Sammie B's pre-op appointment, trying to keep her entertained while listening to the doctor explain how he's going to be cutting into her eye muscles on Monday and trying not to have a complete mama-meltdown over that (Sammie B is, unfortunately, having to have repeat strabismus surgery next week, which we've known was a possibility for a long time), while getting emails asking me if I can defend a deposition next week in another country instead of getting on my flight that very night for that other country as scheduled and freaking out about how that is not going to work because I am going to be home next week with my sweet girl as she recovers.  

That moment pretty much sums up the "work/life" bleed in my life and the guilt that I feel lately.

Because in those moments, I do not not not feel like a mom that is "doing it all" or balancing anything.  I feel like a big, fat, failure as a mother.

Guilt.

And there's more.

When I'm alone with both girls, I always feel like at every given moment, I should be giving each of them 100% of me.   Which is (obviously) impossible.  But, I feel like they each deserve that and even though I KNOW it is impossible, it doesn't stop me from trying, or feeling guilty when I can't do it.  When there's only 100% total of me to give.

Guilt.

And feeling like at the end of all of this -- at the end of a day where I bill 15 hours, spend as much time as possible loving my girls, and way too little time sleeping  -- that I also have a husband who I should be celebrating more -- for all the things he IS doing to make this balance work.  And, it is not just that I "should" be, I want to be.  (So to B, thank you for all you do.  Really.  Thank you for keeping this ship afloat!).

More guilt.

I forgot to get my own mother a mother's day gift (but I wrote her a lovely blog post).   And I'm dog-tired.

Dog-tired.

And guilty.

I just feel stretched.  So thin.  And so guilty.   Like there's not enough of me to do everything.  (and let's not even talk about the things that I'd "like" to get done . . . e.g.., finishing unpacking).

I HAVE managed to get most of the "living space" in the house unpacked.  Because I hate boxes.  But, the living room, which we don't use . . . . well, it looks like this.   

The thing is, I know, in my heart of hearts, that I'm doing a good job at all of this.  I know that work ebbs and flows and after these cases are over, I'll take time off and it will be fabulous and my work/life balance will sway back the other way.  And I know, in my heart of hearts, that I am giving enough (more than enough even, I hope) to each of my girls.

But my desire for perfection at everything I do -- no doubt fueled by that feeling that somehow everyone else has it all figured out -- leads to some pretty intense guilt at times.  And, truly, I just love my girls with such intensity that I want to give them perfection all the time.  They deserve that.  But I can't.  It isn't possible, and I know that.

So there you have it.

Picture me (and my house) {im}perfectly.  But celebrate me just the same.

Mama's Day

There is absolutely no one on earth I'd rather be than "mama" to these two little girls.  No one.  May they always know that my love for them is fierce, unconditional, and unending.  Knock-me-to-my-knees and take-my-breath-away kind of love.  Unending.  Powerful.  Amazing.  

Who doesn't love a zerbert?

I'm so lucky to be their mama.  

Happy Mother's Day to MY mom too -- the lady that showed me how to be a mom -- who modeled "fierce" and "unconditional" love for me and my brother day after day.   A woman who showed me how to be an advocate.  A woman from whom I could still stand to learn a little bit about advocating "gracefully" rather than "bullishly."   A woman who has shown me how to be a mom and friend all at the same time.   A woman I could not live without.   I love you, Gigi.  We all do.  

Gigi and Mia, Fall 2011

Gigi, PawPaw and Sammie, Summer 2011

Did you ever wonder how a child ended up with a specific mother? According to Sufi mysticism, the soul of the child looks down at the world and sees every soul that resides in every woman. When she finds the one that will be able to help her fulfill his life's purpose, she makes her choice.

I picked a good soul, no question.  I only hope my girls grow up to love and adore me as much as I do her (and to know how very deeply I adore them, to know that they knock my socks off, every single day, just by being exaclty who they are.).  

New Walls, New Memories

Three weeks ago, we said good-bye to the only house our little girls had ever known as "home," and moved to a new one.  Saying good-bye was tough.  That other house was the one we bought when I was pregnant with Sam, just me and B, so so excited to become parents.  We were so proud of ourselves.  So proud that we'd (as we saw it) "made it" -- that we could afford to buy in this crazy, crazy city (that had felt like such an impossibility just three years before when we moved out here).  Proud and ecstatic that we had found the "perfect" house for our family to grow.  And, that's just it:  we thought we'd found the "perfect" house for the family we were about to have.  And it was.  For a little while.

And then it wasn't.  It was no longer the perfect house for our family, because it was limiting our girl.   As Sammie B has gotten more and more mobile in scooting and using her gait trainer, the stairs in that old house (a split-level town house with four different flights of stairs) limited her, and we hated it.  We knew it was time to move on, though admittedly it was bittersweet.  We thought we'd lose a ton of money (or ruin our credit) but we didn't care . . .well-meaning (I think) family and friends said "why don't you wait and see what happens with the market?"  But we knew: it was time.  Those family and friends weren't living our lives, seeing on a daily basis how that other house was holding our girl back, limiting her.  B and I had a hard talk one night.   One of us said, "she's going to be 'limited' by her world in so many unfair ways, we can't let her home limit her too."  And that was it . . . we put the house on the market.  We knew we might take a huge hit (and when we put it on the market, hardly anything in our neighborhood had sold for even close to what we owed -- we bought in 2008, just before the market crash).   It was a cost we were willing to pay.  But, then, the stars aligned.  We had multiple offers in just a few days, a bidding war, and then . . . it sold.  No ruined credit, not a huge loss.  I was traveling a ton for work, B scouted for rental homes non-stop, he looked at a lot of doozies and a few good ones that got snatched up by others in seconds, and then he found "the one."  I was out of town, he knew it was going to get snatched up quickly, and he did a brave, brave thing. . . he put down the deposit and said, "we'll take it" without me ever seeing it!  He was right -- it is the perfect house for our family as we are, right now.  NO stairs!  Not even from the inside to the outside!  Hardwood floors to make it easy to maneuver in a gait trainer!  A little concrete "backyard" that we adore . . . so so much to offer.  On my first tour of the house, I was ecstatic. . . as were the girls.  Sammie B scooted everywhere, saying "I'm just exploring!!!" while Mia opened and closed every door in the house 83 times each (I think it is no coincidence that the owners later installed door stoppers to protect their walls before we moved in ;o)).

Saying "good-bye" to that old house was hard, as I knew it would be. Watching everything get packed up, watching the movers empty our home . . . hurt.  Everywhere I turned, it was as if I could see some "memory" before me - in a still shot.

During my last time in the house, I went up to Sammie B's lavender room, and I sat on the floor, and I cried.  When I was pregnant and on bed rest with Sammie B, I used to sit in the glider chair in that room and talk to her.   When she was in the NICU, I used to sit in that same glider chair and sob.  Sob because I was home, but my baby wasn't.  For months, I rocked that same little baby to sleep in that glider, and a few years later, rocked her little sister to sleep in it too.  I walked slowly around the house, letting myself remember . . . everything.  Bringing each of our girls home for the first time, the Christmas mornings, the dance parties in the den, the Easter Egg hunt and first birthday parties in the courtyard, the many, many weekend days spent in the community pool. . . . without question, the best memories of my life had been made in that home.   That house is where I "became mama."   That house is where we grew our family.

As hard as it was to walk away, here's the thing . . .

In the three weeks since we moved, I haven't looked back.  Not even for a second.  You know why?  Because we've got this amazing little girl, and we pop her in her gait trainer, and she goes.  Tonight, I helped her into it on the patio (a patio that Sammie B wants to spend every spare second on!) and she said, "I'm free as a bird! I can go anywhere I want!"  Neither B nor I have a clue where she learned that saying, but it is so, so fitting.   Free as a bird.  

I worried that I'd feel like a failure if we rented.  Because we were so so proud to buy in this market.  We saw that as a huge sign of success, but until we figure out where we want to be (mostly because of the school situation) and save more for a down payment, we are renting . . . and I worried that I'd feel like it was a step back.  But you know what?  It is pretty darn free'ing too.

All around, it feels good.  Just right.  Perfect even.

And you know what?  Sammie B is making mischief like never before.  I joked to B that I'd reprimanded her more in the three weeks in this house than I had in first three years of her life . . . because it is not just that the independent mobility is giving her freedom -- it is giving her independence and confidence and incredible opportunities to explore (and get into trouble!).  I love love love hearing her say things like, "I'm going to go in there!" and "I'm going to wonder around!"  Saturday, we were out in the driveway and for the first time in her life, I had to say "Don't go in the street!" because she was headed that way . . .   And, with that warning -- my heart soared.   Imagine what this freedom and independence is doing for our girl's self-esteem.  Imagine what feeling "free as a bird" would feel like if you'd previously not known that freedom.   Oh so wonderful.

So that other perfect house?  It was once our "perfect house," but it wasn't perfect anymore.  Not for our family, exactly as we are.  But this one is.   And I know, without question, that some of the happiest memories of my life will happen in these walls too.

Where Mia's former pink room and Sam's former purple room have become "one" -- sisters sharing a room (and waking each other up, but we'll get past that one (I hope!)).  Sammie B wanted their room to be pink and purple and she wanted a yellow playroom.  Her wish is (usually) our command.   Mia seemed down with Sammie's plans.  

Openness!  Hardwood!

One of my favorite parts of the house -- it is SO nice to be in the kitchen, spying on the girls playing outside.   One of my favorite moments thus far was when I was throwing something together for dinner while they conspired together to carry all my (empty) planters from one end of the patio to the other . . . and the effort was a joint one!

Our first family dinner at the new house -- KFC because we hadn't yet unpacked dishes, etc. 

These little ladies love their new backyard . . . how perfect is it that the whole thing is concrete so that Sammie can easily maneuver in the kidwalk?!

My Whole Heart

I love them.  With all that I am. 

And, right now, I'm too, too far away from them for my liking.  I flew into Toronto tonight for a day of witness preparation tomorrow and then two days of depositions.  I'll fly back to LA on Friday night (right after the second deposition) and we move next Tuesday, a week from today.  So, so much blog fodder in our lives (yet so little time). 

Good stuff, rich stuff.

After the last post (thank you for your comments!), I went into the "fix it" "do something" "grizzly mama bear" mode that I often go into when I feel like Sammie B isn't getting what she needs or being offered what she needs or we aren't getting what we want/need for her.   I've managed to cram 4 school tours into my looooong work days and it has payed off.  We have a Plan A.  We have a Plan B.  We may even have a Plan C.  All have their plusses and minuses, of course.  Lots to think about.  Weigh.  We're now struggling not just with making sure there are options and that Sammie B doesn't get tossed into a certain class just because its the school district's only real option, not just about how in the world we'll scrounge together money to pay for private school if we need to (that's somewhat less of a concern because . . . well, my own mama went into "grandmama bear" mode if you will and said, "by God, if you need money to help with a private school for "MY Sammie B", we'll figure it out together . . . ) but also with harder questions . . . about inclusion, about large classes versus small classes, about finding a school where she could stay for many grade levels and make friends and have consistency versus a small, intimate setting that seems just perfect NOW but only goes to the end of first grade.  So much to think about.   Heavy stuff that I could go on and on about for days (I may have done just that in a voice mail to a very good listening friend today . . . ).    There have been so many, many phone calls to schools, principals, etc.  Some that made me want to punch people (like the idiot montessori director who seemed surprised that I'd ask her to consider taking a child with CP (go read about the finder of your educational philosophy bitch! -- Dr. Montessori FOUNDED the principle of montessori education based on her work with special needs kiddos) and our local neighborhood school for being a great school in all respects except that its not an accessible campus and the secretary actually said, "I don't know if we can have kids with cerebral palsy here," when I called to talk about what programs they had and started to tell her a little about Sam - after that conversation, I was sort of through, over them, done), and others that made me want to just cry with joy that there truly are such embracing, loving people in the world.    Rememer I mentioned the hippy dippy pre-school as a back-up?   Emailed them, got a message from the director within moments:  "Of course I remember you and of course we'll make room for Sammie B if you need us to next year!"   Toured there (again).  They have a ramp.  It is accessible.  I asked him if it was accessible when they purchased the property.   He said no.  I said, "you made it accessible?"   He said "yes."  I said, "have you had a kid in a wheelchair or walker here before?"  He said, "no, Sammie would be our first, but it was important to me that if we were going to have a preschool that purported to promote an empathy-based, bias-free educational setting that we be an accessible place where everyone can learn together."   Tears in my eyes - big ones.  I almost hugged and kissed him ON THE SPOT, but I knew that would be weird.   You see --- there are so many amazing people in this world, and because of this journey, the richness that walks into our lives is sometimes astounding.   Lots of ups and downs, yes, but the richness keeps coming.   The ups and downs will no doubt keep coming too, but the good news is -- we have options.

There are, of course, mixed feelings about packing up our house -- the house we bought for our growing family -- the house we were so proud of.   But, mostly joy and optimism are outweighing the other feelings (and a little panic about logistics of moving when nothing is packed and I'm in Toronto for the next three days, ya'll!).   We've found the perfect new house for our family.  A beautiful house with so much light and just so very, very open.   Our current house, while it felt like the "perfect" house at one time, just isn't.  Not anymore.  It isn't the perfect house for our family, as we are.  But right now . . . this new house is, and I am overflowing with optimism and joy and excitement about the new chapter.  No stairs.  Not even to go from inside to outside (the last owners had made it accessible for them as they were getting older).   Mostly hard wood floors.  Perfect for a little girl who's primary modes of moving and grooving involve the butt scootch or a walker.  PERFECT for her.  And, she's been overjoyed both times we've visited, saying "I'm going exploring . . . " and she's done just that.   On her own.  Excitement, optimism, a new chapter.

There was Easter, which was perfect.   We've been so overwhelmed with selling the house, finding a new one, school issues, my work, etc., that we really didn't plan anything, but Sammie B really, really wanted to go on an Egg Hunt.  So, we dyed eggs, just the four of us, put the girls in their "fancy dresses" Sam had picked out all by herself, and did a mini-egg hunt in our front yard.  It was a perfect kind of holiday.  And just the kind we needed. 

They are my whole heart.   And the moments that define us are the ones like these.   I am so blessed to belong to this little family, exactly as we are. 

[Insert Profanities Here]

Okay, so there's a ton of good stuff going on over here (like the absolutely perfect new house we found, that we will be moving to in less than a month.  A house that Sammie B can navigate completely by scooting, using her gait trainer, or using a power chair if we go in that direction . . . perfect), but there's also a lot of, um, shitty, and tonight, I'm allowing myself to linger in the shitty and just be mad and disappointed.

We didn't get into either of the great charter schools we wanted to.  Our lottery numbers weren't picked.   For one, we don't yet know where we fall on the wait list (so still some hope), but for the other we are pretty stinking far down.  Honest to God, I'd move mountains if that's what it took to get Sammie B into a great school that's just right for her, but I don't think our district has it.  I really don't.  I think they either have special education-only placements that are inappropriate for a number of reasons or mainstream kindergarten classes where the class sizes are ridiculous and she'd get lost in the mix.   We KNOW that she's been lost in the mix in her current preschool class, because the mix is one where the majority of the kids are there for speech/behavioral issues and they demand much of the teachers' attention.  Our girl, who can't move around and cause trouble and is content to just sit quietly and look around, is stuck doing JUST THAT, and she so often shuts down.  She barely talks at school even though at home she's rarely quiet.  I honestly don't know where we go from here.  Her birthday is 6 days before the kindergarten cutoff, and while I'm pretty sure we want her to have an extra year before starting actual kindergarten, I know the district is going to push for kindergarten, and I'm not sure another year in preschool is the answer anyway . . . that's why I wanted one of the two transitional/developmental kindergarten programs (that last two years).   So, now what?  I have no idea.   I've set up tours of two private schools (including one that told me they likely won't have spots but I can come look anyway) that are geared toward kids with special needs, though not really toward kids with physical challenges, more toward kids with autism and sensory issues.  But, we'll look at them.  I've toyed with the idea of pulling her out and just sending her to a small, nurturing preschool for a year (private) but we'd have to send our nanny as a one:one, and the cost (of both private preschool + full-time nanny) is no joke.  And, with a private preschool, there's no PT, no OT, no one to support her physically at school.  They won't have adaptive seating.  They won't have adaptive PE.  It'll be on us to forge that path, and hope that they follow our lead.  I honestly am at a loss.  I am going to make an appointment with a developmental pediatrician that we saw prior to preschool, because we need someone else to weigh in and help us on this one.  

I've realized that my girl progressed more in the ONE year she was at her little UCLA program than the two years she's been at this public preschool.  I've realized that when we sit down for IEPs and conferences, they tell us in such dry black & white terms what goals she hasn't met and what goals she has, but most of them don't seem all that vested in her (with the exception of the OT, Bless Her!) or her progress.  She's just another kid to them.  And so that makes me want to RUN to another, smaller district, but that would have consequences too (less PTs, less OTs, less equipment . . . less special education experience . . . though I'm starting to wonder if that's all bad.  Being vested in a child is far more important than experience, but there's no guarantee we would get that "investment" anywhere).    

On top of that, we are having doubts about our new nanny's level of engagement -- there's a lot of sitting Sammie B in a chair and putting one game after another in front of her, and not nearly enough active play or engagement.  There's been no planned activities (which is literally why we chose this nanny over another -- her prior preschool experience -- we thought she'd be fabulous at being proactive and planning art projects, lessons, etc. and she's done zero of that).  I'm going to talk to her this week when we find a chance without Sammie B around, but the thing is . . . I'm pissed that I have to.  

I'm sad.  My girl deserves the best -- both for school and childcare, and I can't help but just be pissed tonight that I feel like right now, everything about her daytime existence -- school, the nanny --  is just mediocre at best, and that her progress will be hampered by others' mediocrity.   It's just not acceptable. I hate it. 

I'm working more than I've worked since 2010, and that's stinking a bunch too.  I'm overwhelmed.  I'm tired.  I need sleep.  I have a raging sinus infection.   I like my cases right now a lot, and I said this was my year . . . my year to kill it at work right before I go up for partner . . . but killing it is killing me, and there's not even a semblance of balance in my life right now.  Mia wakes up now in the mornings (oh and at night because she's also teething . . . and so on top of working 16 hour days, I'm waking up at least once a night with that little bug) and she asks for B first, not me, and that hurts.  I had big plans to leave work early yesterday to try to make it to Mia's Easter Egg hunt at school, which started at 3:30 and (of course) at 10 am, a partner asked to meet with me about our case and her only availability was . . . at 3:30.   I'd already planned to be out of the office today for an appointment with Sam (and to finally drag my own ass to the doctor for above-mentioned sinus infection), so I couldn't tell the partner "no."   So, as 3:15 rolled around, and I prepared for the meeting instead of being en route to Mia's day care, I sat at my desk and cried.  I still leave work (most nights) in time to be home for the last part of dinner, bath and bedtime, but I feel like I'm rushing through all of it because of the pile of work that awaits me when the girls are sleeping, or checking my emails while doing all those other things because the rest of my case team is still in the office and I don't want to be perceived as "less than" any of them in terms of importance to the team.   I'm barely sleeping at all.  It's exhausting.  I know this work is cyclical.  I know a not-busy time will come, but right now. . . . I'm exhausted.  

And as I sit here, I just wrote my non-work to do list for the week -- pay bills, get movers, apply for permit to waive out of our school district, apply for permit to waive into every other surrounding district (having no idea right now if that's what we even want, but the deadlines are the end of April so even if there's a chance we want to do that, need to get the wheels moving), set up meetings with special education people in those other districts to find out which ones we might even want to be waived into, tour two private transitional kindergarten programs, call lovely hippy dippy private preschool that I put Sammie B on the wait list for when she was 6 months old that has been holding us a spot for two years "just in case," . . . . go tour there.   See if we could make that work for a year while we figure out kindergarten.  (It is a LOVELY little preschool, and the outside play area is a garden, water table, etc. . . . all stuff my girl would love so much . . . so maybe this is what we do.   But then, we lose PT/OT support at school, we lose the benefit of adaptive equipment at school . . . the thing is though all those services through our district have proven to be mediocre at best, and we continue to do our private therapies anyway . . . so maybe not such a big loss?  But the equipment thing is a big deal.  We could try to purchase some of it ourselves, but we are talking expensive stuff. . . .)  My head is swimming.   Swimming.   

I'm tired.  I'm mad.  I'm really, really disappointed.  And, I hate when things are so damn out of my control.   And, I hate mediocrity.  Especially when it comes to services and care and stuff for my girls.   Hate it.  

And, you  know what?  I'm hitting "publish" without even proofreading.  Because it is that kind of night.