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.]
I love looking back at the "first day" pictures from past years. Our girl just keeps getting more and more amazing every single day. Each year brings more magic, and I know this year is going to bring more than I can possibly imagine.
I cannot wait to tell you how amazing these two weeks have been. And it's only been two weeks!
|December 2010 - Sam's first day of her Early Intervention Center-Based program at UCLA (oh how we miss that place!); she'd just turned 2|
|October 2011 - Sam's first day of preschool - She'd just turned three (and little did we know when I took this picture that just hours later, I'd be in labor with Mia!)|
|August 2012 - Sam's second year of preschool - Not quite four. And the biggest smile yet! (She was mostly excited about her snazzy new dress -- this is EXACTLY around the time that Sammie started having some real opinions on fashion!)|
|September 9, 2013 - Sam's first day at her brand new school, in a pre-k class for 4 and 5 year olds. So very proud of her new princess lunch box from Gigi.|
That evening, we celebrated just as we have every year (and just as my mom did for me each first day of school for my academic career) -- with a small present and a mini-party (cupcakes this year!).
It is a tradition that I LOVE and one that I am so thankful that my mom did for me.
Here's to an amazing new year for my big girl.
I can't wait to watch your year unfold, Sammie B.
Sunday, September 8, 2013
Everything about this picture makes my heart smile. Everything. Certainly, if you'd told me four years ago that today I'd accept delivery of my girl's first wheelchair, I might have wound up in a heap of tears on the floor. But here's the thing . . . while Sammie has done amazing in her gait trainer/walker and is still making strides toward independent walking, those things aren't practical for long distances for her right now (imagine being four years old and trying to maneuver Disneyland in a walker), and we've pushed and pulled her in strollers and wagons and on tricycles for nearly five years. She's dependent on us for her mobility. Those options, while fine sometimes, are no longer age-appropriate. Her peers see a stroller, and they think "baby" or "toddler," and she is neither of those things.
The first time we put her in a manual chair, she was a natural. Moving the wheels like she'd been doing it her whole life. See, I thought the first time I saw her in a wheelchair, I'd cry. And I did. But they were tears of joy and I truly felt like my heart was going to burst with pride. I know B felt the same. The lump in his throat was obvious.
This chair (and the power one to come in a few months provided the insurance company doesn't make us jump through endless hoops) has so much to offer our girl. An age-appropriate means of mobility. Independence. Amazing.
I look at her, and I see an amazing little girl sitting taller and prouder than I've ever seen before. My girl. One of the most magical little beings that ever lived.
But I also can't help but look and worry that the rest of the world will look and see a chair first, little girl second, and that hurts my heart. Before I posted these pictures, I also wondered if people (our friends and family included) would see the chair and wonder if this meant we were giving up on other forms of mobility, like independent walking. It does not.
It does mean, though, that we accept our girl (what's not to love and accept?! have you met her?!) exactly as she is -- right now -- and we want her to have every single tool she needs to navigate her world in as age-appropriate and independent way as possible.
So look at this picture. Smile. Marvel at how cute my family is. And promise me that you'll look in a way that you see my family first, the chair second.
I hope that little by little, we (along with our girl and all our amazing little friends on wheels) will change perceptions.
For Sammie B is one amazing little girl. The chair is but a part of her. Maybe a "forever" part. Maybe not. This is her story, and we are just lucky to be part of it. And, I know, with all that I am, that her form of mobility in this life will not determine the richness of it.
Cheer on, Team Sammie B. Cheer on!
* * *
The next day, Sammie's nanny took her (in her new outfit, of course) to the Science Center. During the day, she sent me a video of Sammie maneuvering herself up to the exhibits to look. All by herself. And I sat in my office and watched that video over and over and cried some of the happiest tears of my life. I called my friend into my office to watch the video with me again. I said, "do you know how big this is to me?" And she said, "I do. Right now, I see a little girl whose body is finally being as independent as her mind and spirit have always been."
And with that, I cried some more.
Saturday, August 31, 2013
|So very, very Sammie.|
|Her happiest of places.|
|Fearless Sammie B after just (literally) marching across this river/falls with her daddy's help. Sometimes, it takes two. Screaming with joy and glee all the way across.|
Mia's love for our dog ("Dude") knows no bounds. If he's in the room, she wants to be with him, even though he'd prefer that not to be the case. We are trying so hard to help her understand that Dude doesn't want to be touched all the time, and it breaks her heart when he doesn't want her love. When he "warns" her (as we say) with a little grumpy growl, she starts patting him and saying "it's okay Dude buddy, it's okay." She wants him to follow her everywhere, and is always saying "Come on, buddy!" When she has something she's proud of, she always shows each one of us, including Dude. ("Look, Mama, it's a ____. Look, Dada (or B-------), it's a ____! Look Nammie, it's a ____! Look, Dude, it's a _____.") Poor Dude has been a fabulous sport, even though he's getting older and would rather be left alone most of the time (though he gets paid for his patience in dropped food and little faces to lick).
|Possibly the cover of her first album? Funny hair day at day care; she was not thrilled with her pink hair nor amused by me with the camera. This is Mia doing "irritated" in her big, big Mia way.|
|This is at my dear friend Melissa's birthday party. Mia doing party girl in her big, big Mia way.|
|Little timid at the beach. The closest we could get her to go to the water was about 15 feet away . . .|
|Mia's famous messy tresses. We do brush her hair. Almost every day.|
I am in awe of them. I was born to be their mother.
|Sammie B-approved outfits for all of us!|
Wednesday, August 14, 2013
Sunday, August 11, 2013
|At California Adventure|
|Hotel pool/splash pad|
|Water show at California Adventure while we waited for lunch with the princesses|
|Downtown Disney - Classic Mia face|
|She didn't pick the ride, and didn't want to ride it (Mia picked) so we told her you don't have to look then, so she didn't. (Except check out that peep hole!).|
|Mesmerized during the parade|
|Best part about mini-vacations? Snuggling with my girls till 10 am!|
|So much fun!|
Monday, July 15, 2013
Tuesday, July 9, 2013
|CME - Climbing stairs with just support around her knees (Day 1)|
|CME - Walking into (and out of a box) with just support around her thighs|
|CME - Standing on a balance board with NO support|
|More box walking, just supported on one thigh|
|CME - Walking, with just a "saddle" of support between her legs.|
|Oh, just standing around on this board (this one takes some major therapist skill!) (CME)|
|Standing around, holding a ball|
|Treadmill in the neurosuit|
|On this vibrating thing that she loved|
|Standing and swinging|
|In the spider cage, bungeed in and ready to jump|
|Suit is off, session done, ready for Disney and big smiles!|