Thursday, February 27, 2014
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
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
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.
Sunday, January 5, 2014
In the downtime, I've realized something that I hope will serve me well in 2014 and beyond . . .
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.
So forget coveting or dreaming about easy, for I'll take this. I'll take them. Over and over and over.
And these pictures?! Could anyone have captured our family any better?
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.
Sunday, December 8, 2013
My work-life balance has pretty much sucked lately -- so all my late-night time that I used to spend blogging or catching up with friends or sleeping has been spent working. I've managed to keep some semblance of normalcy for the girls; I still come home for dinner/bath/bedtime 95% of the time (I only miss it when I'm on a work trip or have a filing that keeps me in the office, but then we face time "goodnight" and they love it), but even on the nights I make it home, the second the girls are in bed, I start the "third shift" so to speak. I don't know when the last time I slept a full-night's sleep was. Most nights I'm so dog-tired that I nap from 9- 10 pm or so after the girls are in bed, and then I get up and work for 3 or 4 more hours before sneaking in another quick nap before the girls wake up at 7. I look beat up at work most days, and I feel it. I know this pace isn't sustainable, and I just keep hoping things slow down soon so I can sleep, and blog, and get my hair highlighted, or blow dry it at least for goodness sake, and well, just have free time and don't constantly feel like I'm suffocating by work. Overwhelmed.
Not the rosiest of posts, but it is what it is.
Good news: I haven't thrown myself out my office window yet, mostly because (1) they don't open, but also because (2) of these two. They are my heart. They carry me even on my worst days. I find myself, daily, thinking about how they are now "2" and "5" and that sends me spinning. It's almost as if I feel overwhelmed by how quickly they've become little girls and not babies, and how fast this whole life thing seems to go. Overwhelmed by how much I love them, how much I want for them. How amazing they are.
I cannot wrap my head around it, and I wish I could slow down time. I do. Because it feels like time is moving at warp speed all the time, and I want to savor every moment with them. . . . every giggle, every "mama, hold you" from Mia, every little joke or inquisitive question from Sammie B, every single time one of them wraps their arms around me. Every single moment (okay, except maybe not Mia's tantrums, because those moments are rocking.my.world. That stuff is uncharted territory for us, and well, I'm not savoring it.).
I hope that somehow I can convey to them, through both actions and words, that hard work pays off, that I work *this* hard so that I can give them the life I want for them, and that they won't look at me, my job, my work, and grow to resent it all. I hope. I hope they won't see the "overwhelmed" nearly as often as I feel it, but that they'll feel the love every time I feel it, which is of course, all the time.
I hope they will both grow to know that the *best* part of my days, my every day, are the moments I'm with them. No question.
Thursday, September 26, 2013
Five couldn't be any cuter, any more joyous, or any more magical.
If I had searched the universe for a little girl to make me a mama, I couldn't have picked a more perfect one than her. I love her. With all that I am.
** More details on her big day (and parties) to come when I kick this cold that's kicking me. **
Monday, September 23, 2013
In the spring, before her "transition IEP" (for kindergarten) I toured the classroom the district was recommending for her for this year and suffice it to say we walked out of there and knew we had to figure something else out, and that we'd likely need a special education attorney. My exact words: “over my dead body will Sammie B be in that classroom.” It was not a place where learning was happening. During our (very very short tour), one child was running madly around the room while an aide chased, one child was trying to stab himself with scissors while an aide tried to keep him from doing so. It was mayhem. When I asked the teacher if she'd ever had a kid with a physical disability like CP, she said she hadn't. Nor did she seem particularly excited about the prospect. She seemed put out. Annoyed. No thank you.
Other than that classroom (the "oh hell no" classroom as I started calling it), the only other option the district gave us was to put Sammie B in a mainstream kindergarten class with 25 - 30 kids, and one teacher. We knew that wasn't right either, particularly since Sammie B meets the kindergarten cutoff by only 6 days, and would be the youngest in her class.
I lost sleep. Trying to figure out where she would thrive. Trying, as I often do, to "figure her out" so we could find the place and environment where she would thrive. I called school after school, mostly to learn that the campuses weren't accessible. The private schools in our area that are focused on special needs cater to a (largely) autism population, and we knew that wasn't necessarily the right fit. Most other private schools (particularly religious ones) are in old buildings with stairs. A little Lutheran school near us sounded PERFECT on the phone. They said they only had one step up, but they could put a ramp up (!), and they'd love to have her (!). Then I drove by. And the entire playground was mulch. No way could I sent my child to a school where she can't play on the playground. So, defeated, I sat in my car in the Lutheran school parking lot, and I cried.
But we suited up (Sammie in a her "fancy white dress") and we headed to meet the teachers.
|Mia is the cutest photobomber EVER. She rarely lets us take a picture of just her.|
That meeting was everything I needed it to be to quiet my panic. Sammie played while B and I sat with the teachers for an hour and a half and just talked. I told them about Sammie. Her journey, her challenges, her quirks, her gifts, her talents. They asked me what our goals for her were, and I explained everything about last year and how we knew something was holding her back because she was a different child at school than at home, and I said, “so our goals for this year are (1) confidence and (2) friends. the rest is just icing on the cake.” It was a beautiful conversation, there were tears (not just mine). They asked what she was interested in, and listened. One of them said she'd go home and drag out some old princess costumes in her garage to add to the pretend play area for Sammie. They listened. Really, really listened. Not just to what Sam can or can't do, but to who she is and what she has to offer. I walked away knowing this was the perfect place for Sammie.
Crazy, funny, silly, magical Sammie.
Here’s the thing. We find ourselves on this special needs journey without warning and we feel lost, at least in the beginning. And we trust the experts because, well, we know or feel that we know nothing. We need them to guide us. We expect the PTs and OTs and STs to tell us what we need to do. But somewhere along the way, we learn that WE are the experts in our kid, and that no amount of expertise or training can replace what (at least for us) we’ve found Sammie really needs. . . an environment of community, empathy, and love.
|Snazzy First Day of School Outfit|
Sammie B taking participation to a whole new level. (She told me, "my friends will laugh when they see me and say 'oh look!'") She’s officially talked and shared more in two weeks at her new school than in the two years at the old school. Her love for learning has taken off (again).
Here's to this new year.
(And to a little girl that turns five tomorrow . . . . something MY heart isn't quite ready for.)
[After typing this out, hitting post, re-reading it (twice) and thinking about it a lot, I feel the need to say . . . I don't mean to be so hard on Sammie's teacher last year. It just wasn't a good fit. It wasn't. The curriculum was static, the class chaotic, and, legally, what the district offered, was not a fair and appropriate education for Sammie in the least restrictive environment. It just wasn't. Sammie wasn't thriving, Sammie wasn't fully accessing the curriculum, and the teacher didn't seem to have the ability to make that happen. We didn't even fully understand it. We didn't even fully understand what was missing until now, when we can see what could be. The difference. It hurts me that we have to be such trailblazers along this path, but I'm astounded that educators (even those in special education) seem so perplexed by a child like Sammie. Why are we blazing trails? The teacher may not deserve all my harshness, but to be sure, the district does. What they offered was inadequate. And the IEP team, that pretended to be so very vested in my daughter, changed their tunes so very, very quickly when we didn't agree with their recommendation. It wasn't a team decision. It was crap. We got a bunch of company (district) lines [like (after acknowledging that Sammie seemed to shut down when the bigger behavior problems from other kids were occurring, "but don't you think any preschool class would be chaotic? Don't you think she'd be overwhelmed in any class?" (imagine that in the most condescending, "you're just a mom, we're the experts!" voice you can imagine], and although they'd acknowledged their feelings about how the "oh hell no" class wasn't appropriate for Sammie verbally in the IEP, the second we indicated we were not going to sign that IEP, everyone acted like a bunch of assholes and wouldn't "own" any of their comments during what we thought was a "team" meeting. A crappy, disappointing, and upsetting situation. One that left a horrible taste in my mouth as Sammie wrapped up the rest of that school year (May and June) in that classroom. In any event, the proof is in the pudding. She's thriving.]