Wednesday, August 31, 2011

Right Now

On Friday, I hit 30 weeks pregnant, with my cervix still "long and strong." We don't know if those earlier not-so-long-and-strong measurements were a fluke or if it just means that what I've been doing since is working, so I keep doing what I've been doing. Trying to lift minimally, working a reduced schedule, and trying to rest as much as I can.

Heather, at the Spohrs are Multiplying posted a great post on what bed rest is REALLY like today. I'm not on strict bed rest like I was with Sam, but still . . . limited activity is not easy. It is not "restful." And like Heather says, if I had a dime for every person that told me that they wish someone would put them on bed rest, or told me all the things they'd "catch up on" on bed rest, I'd be a rich woman (I'd pay them to do bed rest for me!). It is not restful. It is full of worry and fear and doubt and anger that your body can't just easily do what others' bodies seem to do (grow people). Anyway, enough about that. I just liked the post and thought I'd share.

Here's what I'm looking like these days (okay, on the days that I blow dry my hair and put real clothes on -- this would NOT be today, this was actually about 2 weeks ago):



And, just for kicks, here's what I looked like three years ago, 28 weeks pregnant with Sammie B:



It looks to me like the belly is bigger this time, but it is hard to compare belly size with such different shirts (and the fact that I'm obviously sticking it out further in the more recent picture) BUT my weight gain at this point is about the same as last time.

Most of the time I feel good. I feel restless and I wish I could be doing more. I wish I had more energy to get up and down off the floor and play with Sammie B and was able to be out and about at the park, etc. a little more. And, while I would never wish this baby early and want with EVERYTHING in me to carry this girl to term and be at 40 weeks hoping for an induction, I have to say . . . I'm uncomfortable. I think because I was on strict bedrest by this point with my Sammie B pregnancy, I didn't realize how hard these extra pounds make getting around. I'm out of breath after coming up stairs, particularly if I'm carrying Sammie B. I have heart burn non-stop, I can't sleep at night, my feet are swollen, I'm hot, my thighs rub together when I walk (EW!), and well . . . I feel like a fat beast. But, I will happily take every day of this pregnancy, discomfort and all.

I'm simultaneously giddy with excitement about another little girl, and terrified of how we will make it all work -- with another little person in our chaotic lives. I know that our new little wonderful will fold into our lives, but I also know it will be an adjustment. But, it is sort of like I simultaneously want to hit fast forward and pause all at the same time.

Our right now is pretty darn magical and wonderful. Sometimes, when I'm alone with Sammie B, I think about how perfect it is -- our mommy and daughter moments -- and I worry about adding another little being to our mix. I worry about going from a family of 3 to one of 4 and taking something away from Sammie B. But just as I'm scared, I'm excited for Sammie B to have a sister. I'm excited to be "mama" to another, and to watch two girls grow and learn together.

To my sweet Sammie B - sometimes I feel a little sad thinking about this "family of three" chapter in our lives coming to a close. You've brought more magic and wonder and love to us than I ever thought possible (and I know you'll teach your younger sister those same amazing things). And, of course, I never, ever, ever want you to feel like you are missing out because you may have to share mama with your sister. I hope if grown-up Sammie B reads this someday, you'll laugh and look at me and tell me I'm crazy -- that YOUR life wouldn't have been complete without your sister, and neither would our family. That you learned from her, she learned from you, and that she's your best friend. Sisters.

Finally, to close on a lighter note, as I said we would, we got out our heavy duty backpack carrier for the first time this weekend and Sammie B got to be in B's backpack. She LOVED it. He took her to the zoo in it and she loved her view from up there, and B loved being Sammie B's legs :o) That carrier holds kids up to 50 lbs, so Sammie B, as long as Dada keeps working out, he can be your legs for awhile, my girl.



And her (priceless) impression of the prairie dogs they encountered at the zoo:



She makes us giggle.



Tuesday, August 30, 2011

Listen. And Melt.

Okay, my last attempt to post this here was a big fat fail (link worked for me, but not for anyone else). Thanks to a much more tech-savvy friend, I'm giving it another go!

Here you have it. Sammie B's fabulous rendition of "Tomorrow" from Annie. You can tell our applause emboldens her when you hear the excitement in her second run-through.

This little girl is pure awesome.

And, if are my facebook friend, you've probably already heard this (I posted there too) but seriously, it is cute enough for a second or third or fourth or fifth listen. For real.

Enjoy:



And, if that little player didn't work for you, just click on this link!


Friday, August 26, 2011

Glimpses of HER Magic

If you made it through my last post, thank you! And your reward . . . some cute new pictures of the one and only Sammie B unloaded fresh from my blackberry :o)

If a picture is worth a thousand words, then this picture post is ALMOST the word equivalent of that last post I think!

These smiles? These are the moments that matter. The moments that define my girl, and our family. I'm so lucky to be her mama.

The many faces of . . .





Whenever she sees a camera, she flashes a big, cheesy grin (I'm not always fast enough to catch it though, and she doesn't quite get the whole "shutter speed" concept yet) UNLESS I tell her it is a picture for dada. Then, you get funny faces. She loves to make funny faces for her dada. (The three above were from a day when he was working late and we took a few over dinner to send to him.).

Because her dada is a sucker and can't go to the mall without letting her choose a new "Ah-nee-mal" from the Disney Store:



Perfection: (Weekend naps are always in mama's bed!)



Teamwork. Pushing her bear (and bee, who is squashed UNDER the bear) in her stroller with a little help from her dada:



An outfit of her choosing. This girl is pure sass.



A rare occasion where mama has her contacts in, hair blow-dried, and make-up on. Photo-worthy indeed:



Waiting patiently for her swim lesson:



A little at-home PT in the evening:



Riding her trike in PT all.by.herself (via some groovy hand pedals)!



And more funny faces from sweet Sammie B





A few other recent Sammie B magic moments that I'm so, so grateful for:

- The other night, she was sitting on my bed and suddenly started singing oh-so-quietly, I listend for a second and realized Sammie B was singing her ABCs. She realized I'd noticed and was listening, and she got embarassed and stopped. After a little bit, she started up again, and I ignored her, and she sang the whole song!!! She's known her ABC's for awhile (she'd fill in the letters if we were singing and stopped at a letter) but this was her first time singing them on her own.
- She's now regulularly saying "Oh my God! What are you doing?" which she learned from her nanny. It's kind of the funniest.
- Her other favorite song is "Tomorrow Tomorrow" from Annie and I have a voice note on my phone of her singing it and I can't get enough of it. Cutest thing ever. I will eventually figure out how to post that here!
- Annie is her movie of choice, every time.
- She's officially addicted to ice cream. She requests "ice keem" every.time.we.leave.the.house or drive by any establishment where she's ever had ice cream. ever. She's her father's daughter, that's for sure.
-This next one is a little embarassing, but too stinking funny and cute not to share. The other night, B was watching TV while Sammie B and I played in the floor. She looked over at the TV and said "Obama." I looked over and it was just an e-harmony commercial with an African American guy on it. B was like, "um, did she just say Obama?" Um, yeah . . .

She's magic. For sure.

Wednesday, August 24, 2011

It's Going to Be a Long One

I've had a draft post sitting in my drafts folder since August 3, and as we've had new appointments and developments, I've just added bullet points to it so I'd remember to update. I've been exhausted and haven't had the time or energy or drive (or something) to finish it, and truthfully, I'm too tired to now, but it just needs to be done. Because it is getting in the way of me blogging about the magical little moments of our days, and that's the stuff that matters. Not the heavy stuff. Not all the damn appointments. But every time I think of something to post about, my first thought is, "Gah! I need to finish that draft." So, all day today, I told myself, "tonight is the night! it will get finished." Tired as I am, here goes.

As I've mentioned, August has been an exhausting (have I said I'm tired?) month. B's boss was out for three weeks and left B in charge, and so he worked a ton, which isn't the norm. Our nanny got a free (yes, free!) trip to Hawaii and we couldn't dare tell her to pass that one up, so she was gone for several days. I've had my weekly progesterone shots, high-risk OB appointments, and regular OB appointments (all going well - still "long and strong" in the cervix department, still on light activity/modified bed rest, same old same old); I'm "on" a case going to trial, so I've had a lot of work to do, but have tried to keep to the bed rest rules (while simultaneously feeling crappy about not being able to be a full member of the trial team, and slightly jealous of those who are -- which is a good sign -- that I MISS being engaged and invested in my career at that level), and Sammie B has just had a TON of appointments, a TON of evaluations (okay, 2 but it felt like a ton), AND we switched physical therapists.

Can you say, "exhausted?" What a freaking month!

So, with that background, the updating part is going to have to happen in bullet-points, but please, please stay with me . . . remember, this is a post that's been brewing for weeks. I've got a lot of important stuff to tell you! ;)

- Sammie B had two doctor's appointments at the beginning of the month -- a physiatrist appointment and a developmental pediatrician appointment/developmental assessment.

- Physiatrist appointment went "eh." Nothing negative, I'm just not so sure what he adds to the mix at this point. He's a good person to bounce ideas off of for alternative treatments, to talk about what our PT is working on, to write prescriptions for the equipment we need, but the appointments themselves are sort of "eh." He wants Sam to perform like a monkey, she doesn't want to. She won't show him her best stuff, so he tries to engage her while simultaneously drilling me about what she is or isn't doing. (More on those questions later). But, that's behind us, and we'll follow up in six months. We did walk away with some ideas for some alternative type treatments that we may try -- some supplements to help with muscle tone and some new PT methods -- but of course, none of those are covered by insurance, so we need to do some research before moving ahead with that.

- Developmental pediatrician appointment went phenomenally well. Sam is required to have a full developmental assessment every six months by the developmental pediatrician who is the director of her little center-based school program. Before she started there, we hadn't yet seen a developmental pediatrician, mostly because I didn't think we could possibly need another MD on Team Sammie B - we have so many, but I am so so glad that the program forced us to see one . . . because honestly, this is the first of the MD disciplines that I've felt like is really just there to help us UNDERSTAND Sammie B and enable US to enable HER to be the best Sammie B she can be. Sam did so well with the last developmental pediatrician assessment, but that particular doctor left the program, so I was nervous about seeing a new one. But, it went very well. As I've said over and over, one of my greatest concerns is that because of Sam's physical limitations (which affect ALL her motor skills, including her fine and gross motor skills and her speech/articulation), that people will assume she doesn't "get it," or that she'll be lumped into a category -- particularly as we transition to the public school system -- where she cognitively doesn't belong. So, getting these independent assessments (not from the school district) is important for us, and of course, we want Sammie B to show all that she knows, but it is always a worry that she won't feel comfortable with the evaluator, that she won't be in the mood to perform (she is, after all, only 2), etc.

Anyway, in short, the appointment went phenomenally well. She warmed up even faster than last time, and she blew me away. There were little "tasks" that I saw them pull out of their bag of tricks, and I thought, "oh this is not going to go well - she can't do that!" and guess what . . . she can. Her cognitive scores really reflect what my hunch has been all along -- she's a smart little girl whose body just doesn't always allow her to show everything she knows. I talked a lot with the developmental pediatrician about my fears for Sam's education. The pediatrician feels very strongly that Sam needs to be in a mainstream environment where she will be cognitively (and verbally) challenged and that they (the school) need to bring the physical supports to HER -- not do what's easiest for the school -- to put her in a special education environment where the physical supports are already there . . . because that's not appropriate for her cognitively. That's also been my "vision" all along, so it felt good to hear an expert agree -- after her own assessment.

She also sort of just gave me permission that I desperately needed to NOT worry about a few things. Did you know that stacking blocks is an important "cognitive" milestone for 24 month old kids? Well, it is. And, on most of the developmental assessments done by Sam's OTs, once a kid "misses" a skill in a particular area, the assessment stops. So, because Sam won't stack blocks, she's scored at "23 months" cognitively on those tests for quite a while. Anyway, the developmental pediatrians are much better at adaptiving the developmental assessments to control for motor limitations . . . and so when Sam refuses to stack blocks (she literally says, "No!" and pushes them away or smiles shyly at me and hands them to me and says, "Mama!" for me to stack), the developmental pediatrician tries to get at the same skill from another angle, or moves on. Anyway, Sam refused to stack blocks. I swear to you, in these assessments, when I see those stupid blocks coming out of the bag, I START SWEATING. She handed them to Sam, Sam said "no," and pushed them away, and the developmental pediatrian moved on. Then, she said to me, "I wouldn't worry about the stacking thing." And I said, "oh thank you! I have tried and tried to work on it at home; we've bought every set of blocks out there, and she just doesn't want to do it." The developmental pediatrician said, "well, it is clearly NOT a cognitive thing, it is a motor thing . . . she knows what you want her to do, but she knows herself well enough to know that it is going to be hard for her and she'd rather not." She went on to talk about how Sam has a very "mature" sense of herself . . .and that the block thing is most definitely NOT a cognitive thing.

We talked about playdates . . . she asked if I schedule them for Sam with "typical peers," and I answered truthfully. I've tried. But it is hard. It is hard sometimes to see "typically developing" right in front of my face. From my friend's kids who were born just days or weeks or months before or after Sam. It's hard to see MY child struggle while their children aren't. And, logistically, well, playdates in the park are the norm around here, and that's hard. Usually, the kiddos run off and play together, the moms congregate together and chat, and Sammie B, who can't just run off and play without me, is left sitting and playing with me. So, it's just been easier not to go there . . . but the developmental pediatrician suggested planning playdates that are a little more Sammie B-friendly. Art playdates, movies, play dough, sitting and watching Dora, etc., and I'm really making an effort to do that. (Just a few days after the appointment, we did a beach date with my friend and her little girl and all sat in the sand and played together).

These are long bullet points, I know. The short story is that the appointment went well, and I was so, so glad to feel like someone "gets" my girl. Sam's teacher was there too, and the fabulous thing is that when we talked about all the stuff Sam knows and can do, he wasn't blown away, he knows it. He sees it. He agrees with what the developmental pediatrician said, he has the same visions for Sam's education. And that feels good. Thank God for this little program - for Sam's teacher, for everyone there, and all that it has done for Sammie B (and as I type this, my eyes fill up with tears thinking about her finishing the program in a month when she turns three . . . ).

- We bid farewell to Sam's PT she's been working with since she was 8 months old and started with a new PT at Children's Hospital near us. The initial appointment/assessment (does this child get assessed enough you think?) was a little overwhelming . . . it was evident to us that our PT should have been working on things that she wasn't . . . and also that Sammie B has a little further to go before independent walking than we probably thought. That was hard to hear and hard to think about, but after a few days of thinking about it (and some supportive mamas giving me great advice), I was reminded that working more on the "in between" stuff (like the pre-walking stuff) would just give us more to celebrate on our way to the big one . . . and I so hope that proves to be true.

Each appointment after that initial one has gone so very, very well, and I actually think Sam has surprised her new PT. I don't think she really realized at that initial assessment all that Sam CAN do, and I see her being encouraged and surprised each time. (In fact, when she showed me her list of treatment goals after the initial assessment, there were some that Sam can already do -- so she was pleasantly surprised, and we came up with some new goals!) There's definitely a warming up and getting-to-know-each-other period for Sam and her new therapist, but so far so good. We are excited to have the positive perspective, a huge amazing clinic with so much great equipment, and to be trying out new tools (like gait trainers and walkers) to help Sam be more independent. B and I are both kicking ourselves for not moving on from the old PT sooner, who had NOT been trying new things and had NOT been a "breath of fresh air" in a LONG time, but we are trying to just move forward and not wonder what we "could" have done differently.

The new environment, new ideas, and fresh perspective has also given B and I some much-needed fresh ideas about working with Sam at home. I think we were ALL just burnt out on the old PT routine, but now, we are getting some fun new ways to work on things, and each evening, B and I feel more motivated to try to mix a little "work" in with Sammie B's play. Good for all of us.

- Sammie B is likely going to be acquiring some new equipment, like a gait trainer (which is like a granny-style walker, but with more support for her trunk). While I wish my girl didn't need a gait trainer (I so wish for her an easiness she hasn't yet known), I'm in a place where I see this equipment as a wonderful tool to allow her to explore her world - to give her some independence, and less as a reminder that my girl struggles where other kiddos do not. I'm angry that our old PT was so narrow-minded on the gait trainer thing . . . I feel like she discounted OTHER areas of Sam's development and what these adaptive devices can do for her cognitively and socially (allow her to be up and exploring with her peers) and I'm pissed to learn that her theory (that once you give a low-tone kid supportive devices, it just makes it harder to teach them to do things independently because they've become comfortable with the supports) is not really supported by the most current research, but again, no looking back, only forward. Picking equipment is overwhelming. It's a heavy desicion. At first, it felt like we were giving up on independent walking . . . but that's not so. One piece of equipment - no matter what equipment it is - is not the final word. Just a step along the way. A step in her story. And, a step that will help HER grow and learn and live. It's all about perspective. And I'm looking forward to my little girl blooming with a new - mobile - perspective herself.

We put Sammie B in a gait trainer at her last PT session, and B and I both were lucky enough to be there, and my heart almost lept out of my chest as our girl started taking tiny steps and moving herself toward her dada. To see her moving . . . with no adult assistance . . . just her own motivation and some equipment . . . made my heart melt. There's still a huge learning curve for her to learn how to move it (it is heavy) along with her body, and how to truly navigate in it, but it will certainly be a valuable tool for her. One that we are excited about.

We've also implemented a reward system for PT appointments. PT is by far the therapy that is the hardest for Sam, and the one where she most often doesn't want to cooperate (can we blame her?). So, we've been talking to her a lot about trying even when things are hard, and after each session, she gets to pick a small surprise out of a basket in my car. She loves it. I've also told her that when her PT asks her to do something, she can say "yeah! yeah!" instead of "no!" and she thinks it is funny. So now, when we are met with resistance from our girl in PT, we say "Sam, let's just try okay?" and she says, "yeah! yeah!" and then when we get to our car, she immediately says "surprise!" and waits to pick. And, to our new PT's credit, she is WORLDS better than our old PT at dealing with the resistance. When Sam says "no" or "all done" during a hard activity, the PT just says, "okay we are going to do it one more time and then we'll be all done and you can pick what we do next, okay?" And, it is working. I know what works and what doesn't will change many, many times, but our old PT's defeatist attitude sure as hell wasn't working, so this is refreshing and encouraging and wonderful. And, I think we are all enjoying reasoning with Sammie B . . . her included.

- We had Sam's assessment with the school district too. That one was overwhelming to say the least. Five adults (OT, PT, ST, adaptive PE, psychologist) all with their own agendas, firing questions at me, at B, at Sammie B, asking her to perform, etc. OVERWHELMING. (And, yes, they brought the effin blocks out.). Short story -- Sam did amazing on the cognitive portion again, and well, the physical stuff . . . we know where she is. So, that's what I kept telling myself "nothing they tell me is going to be a surprise." And, it wasn't. The truly wonderful thing is that I know that the psychologist agreed with me that Sam ultimately belongs in a mainstream classroom with supports. I've had multiple conversations with the transition coordinator since the assessment, and we all SEEM to be on the same page. District funds are limited, so figuring out how to make our "vision" for Sam's education a reality will take some working out (and we already know we may have to initiate due process if we want a one-on-one aide for Sam to help with mobility because right now the district will only give those to kids who are a danger to OTHER kids) but all in all . . . I'm cautiously optimistic. As always, I just wanted to feel like our team "got" my girl, and I do. I didn't want her to be underestimated, and I don't think she was.

Funny story about the evaluation (you deserve a laugh if you're still with me). Before we went that morning, I told Sam we'd be meeting some "new friends" that would ask her (and us) a bunch of questions and want to see all the cool things she can do and all that she knows. I told her it might be hard, but that if she tried really hard, even at the hard things, that afterward, we'd go get ice cream. Well, the SECOND the assessment team started packing up their bags at the end (of the TWO HOURS), Sam looked at me and said, "all done. Ice cream." We went straight to get ice cream and skipped lunch altogether. She deserved it. And about halfway through our lunch, a man that had been sitting near us came over to tell me that he'd been watching us, and quote "what a magical little girl" I had. I got tears in my eyes and told him he had no idea what his comment meant to me and that we'd had a very intense morning. He said, "well, she's amazing, and you are doing a fantastic job," and walked away.

Another positive, I think, that came from the school district assessment is that B went, and I think, kind of realized how much he's insulated himself from the "needs" and "services" part of the journey. He's kind of taken for granted that I take care of that stuff . . . but the assessment overwhelmed him a bit. He hasn't been at the others, and I think this helped him realize why I'm such a nervous wreck before them, why I hate them, why I cry and sob and say "I wish she didn't have to do all this . . . " etc. B's story on this journey isn't mine to tell, but I KNOW the assessment shook him a bit. I KNOW he was wowed and amazed by what our girl did during the cognitive testing, and so so proud of her, but I think (and perhaps, truthfully, for the first time) he also really felt what an uphill battle we may have in making sure she gets what she needs to fully access her education. We've had lots of healthy talks and heart to hearts and planning and thinking kinds of talks, and I'm feeling a little more like a team again. So, that is, no doubt, a good thing.

- There's something I need to explain. When I report here that Sam did so well on the cognitive stuff, I feel guilty. Like I'm bragging. The thing is, when I tell people this -- even on my support boards for parents of delayed kiddos -- people often say things like "well, at least she doesn't have a cognitive delay," but here's the thing . . . if she did, so what? Would we love her any less? NO. Would it make her any less magic? NO. I report on it here, and I worry so much about THAT apsect of the evaluations because I'm with her all the time and as her mother I KNOW how very much she knows and understands. She blows B and I away all the time with her memory and what she remembers and what she's picked up on. And so, the reason why I feel so relieved when the evaluators see what we see is that I feel then that they "get" her. That they aren't making incorrect assumptions about her based solely on her physical limitatations. That's it. Like any parent, I don't want my girl to be underestimated.

- Have you noticed a pattern in these bullet-points (besides that they are very, very long)? This kid is assessed too.damn.much. More than any two-year-old should EVER be "assessed." I mean, really, would YOU enjoy sitting in a room with five people asking YOU a ton of questions and asking you to do physical tasks that are just plain hard for you and then talking about your every weakness? Sucks. We have to find ways to keep these types of assessments (even doctor's appointments . . . I thought this when the physiatrist was asking me, "does she like drawing? how does she hold a crayon?", etc.) from turning into conversatons about Sam's "can't" right in front of her. The kid gets it. And we cannot talk about her like she's not there. B and I have both resolved ourselves to avoid that and to make a concerted effort in appointments/assessments for one of us to politely excuse ourselves to go play in the waiting room with Sam whenever that stuff starts happening.

- That brings me to my next point. Something I need our friends and our family to know . . . Please don't assess my child. We have enough experts "evaluating" her. More than anyone could ever want or need! Please don't talk about our girl, or ask questions about how she's doing with walking (or whichever of her "not yets" you are wondering about) as if she's not there. Please don't assume she doesn't "get it," because I promise you, that's one quick way to get written out of my life. I KNOW the questions are often well-meaning. I get that. But tilting your head to the side like a sad puppy dog and asking, "how's Sam doing in her therapies?" in the same way that you'd ask someone whose parent just died how they are doing is just not okay. It is not okay. So, if you want to know about "how Sam is doing," look at her. Look at us. We are okay. Evaluate our lives by the moments that matter -- the smiles, the giggles, the love. We are good. Ask me about what she likes to do. Ask her what her favorite ice cream flavor is or what her favorite TV show is, but don't give me that sad, head-tilted, "how's Sam doing?" shit. Don't do it. And, if you want to hear about the therapies and the doctors appointments and the stuff that keeps me and B up at night sometimes, because you care and you want to support us, then ask us. But not in front of her.

And, that, my friends is a finished draft. And now, I'll be free to get back to the other stuff, the magical moments that define my girl, not the boring.schmoring appointment updates that are just a necessary part or our new normal . . . so stay tuned for more.

Monday, August 15, 2011

Words of Wisdom from Other Mamas that Have Been (and Are) THERE

Just a quick post to share some things that have kept me going and inspired me lately.

First, Rachel Coleman - of Baby Signing Times (and Signing Times). I love Rachel not only because her videos literally opened up the world of communication to our Sammie B before the words started coming (she had nearly 60 signs at two years old - rockstar little lady!), but because she's a mom to not only one but two SN children, yet has the most positive, encouraging outlook that she shares with the world. I'm also particularly inspired by her sweet daughter Lucy, who is learning to walk at the age of NINE. Never say never, my friends.

Anyway, I just saw this post on Rachel's blog:

http://www.rachelcoleman.com/2011/08/10/baby-wearing-toddler-wearing-eleven-year-old-wearing/

and I LOVED it. B and I have been having some talks lately about how we can make Sammie B's world accessible to her. We haven't given up on her walking (we won't) but at the same time, we don't want her experiences to be limited in anyway by the fact that she's not yet doing so. So, we've made a promise to ourselves, to each other, and most importantly -- to our sweet girl. We have vowed to do everything we can to be sure that her mobility (or immobility) will not limit her life experiences. This little girl is full of limitless possibilities, as is her life. We are sure of it. We will be her legs when she needs us to be (for as long as she needs us to be, or for as long as she'll let us!).

And on a related note, some wisdom from my friend K that I've been repeating to myself over and over and over:

"Our job isn't to get them walking . . . it is to help them achieve their purpose on this planet, whatever it may be." My girl has a purpose, a destiny all her own, that only SHE can reveal. And, I'm (we're) just here to enable her to do so. Along for the ride.

And, oh what a ride you are taking us on, Sammie B. A magical, magical (and intense) little ride.

Wednesday, August 10, 2011

Better (and Rosier)

After a Big Talk on Sunday night (complete with tears from me), things are better. I truly don't know if B had really "gotten" how this whole bed rest thing affects my psyche. The pressure of feeling like I could be doing too much and putting our unborn daughter at risk, the pressure of not doing enough for our other daughter . . . . etc. But, truly, truly, it has been a better week. (And, I so, so, so appreciated your comments and encouragement!)

(And for those of you who were wondering, B does not read this blog consistently. If I have a post I want him to read -- and sometimes I do because I've somehow put feelings about Sam or our experience into words I'd like to share with him -- he reads, but otherwise, he doesn't. Some of our family reads regularly, including B's dad, and the fact that they read has sometimes given me pause on a post and I've questioned once or twice whether I made a mistake in sharing the address with everyone, but at the end of the day when I'm debating about posting something or not, I usually decide this is my space, my place to pour it out, and I hit "post." I think B purposely doesn't read because he just sort of respects this as "my space," but I'm careful to try to only tell MY story on here (and Sammie B's) and not his. And, by the way, my post on Sunday wasn't anything that I wouldn't have shared with his dad anyway! He knows his son can be a stubborn jackass from time to time ;o))

I've launched into full on party planning mode for Sammie B's third birthday party and that's helping to distract me from the anxiety that surrounds this birthday and the preschool transition for us. We went to the party store and she picked out party supplies (I let her choose between Strawberry Shortcake, Winnie the Pooh, Minnie Mouse and Dora, and she's picked Strawberry, which is super sweet because my own 3d birthday was Strawberry Shortcake-themed!). We've booked the (heated!) pool where she does her swim lessons, and we are going to have a swimming/cake/ice cream party! Not sure that my fat pregnant butt will fit in my maternity swimsuit by then, but otherwise - party plans are underway -- the guest list has been started, I've been planning the menu, and I've found (but not yet ordered) the most adorable Strawberry Shortcake swimsuit ever for Sammie B to wear on the big day.



We've also had a few marathon naps together, and the snuggles do wonders for my soul.





Some other highlights of the week -- the kind of moments that make me melt:

- On Tuesday, as we were getting ready in the morning, Sam held my phone to her ear and said, "dada," so I asked if she wanted to call him, and she said, "yeah," so we did. He wasn't at his desk, so I said, "we have to leave him a message," and she did. She said, with no prompting, "Hello dada, I love dada," and then handed the phone back to me. Pretty sure he melted on the spot when he listened to it, and I know that he played it for his friend at work!

- We also snuggled up and watched Annie on the couch. My FAVORITE movie as a child. I always feel so guilty when I have totally lazy days with Sam, but with this bed rest business, sometimes, we just have to. She LOVED Annie. Loved it. And, afterward, we went out to get lunch (KFC drive-thru. Oh the shame!) and as I was driving, she started singing in the back, "Tomorrow, tomorrow, I love you." Smilestone (most words ever combined together for a song!)



- Her teacher also emailed today to tell me that she sat in the wagon at school (they have this amazing 8-seater wagon) without the adaptive seat support she usually has, and told them she was a "big girl" for doing it. Our big girl.

I still have a post in my drafts folder about our marathon week of appointments last week BUT still just haven't had the energy to finish it. Today was my one day this week in the office, and I have some deadlines Friday, so the rest of this week is going to be work work work (from bed . . . ) (plus a preschool tour tomorrow).

Bed rest stinks. Constantly worrying that I'm doing too much stinks (I'm thankful for the bi-weekly cervix checks for reassurance, next installment this Friday).

Life isn't always easy and rosy. But today -- things feel easier and rosier, and I'll take it.

Monday, August 8, 2011

Not Easy. Not Rosy.

I can't tell you how many blogs I read that make EVERYTHING look rosy and easy . . . parenting, working, balancing life (e.g. the whole work-life balance), marriage, etc. Frankly, I'm not sure why I keep reading them. I think for the pure annoyance factor. Anyway, I KNOW no one has a life of all roses, and that blogs don't always represent the UPS and DOWNS of life, but some blogs might give you the impression that life is all rosy, all easy, all the time.

For me, I really started this blog to help me work through (and share) our journey through this life with Sammie B. That includes juggling all her therapies, the appointments (the magic and giggles too!) in the midst of a life of two working parents (both of whom happen to be fiercely independent and stubborn as all get-out). I tend to blog when (1) things are great and I want to share Sammie B's lateest magic moment or (2) I'm struggling. So, I think you can generally find a good taste of the UPS and DOWNS here. But sometimes, when I blog during the down times, I worry about coming across as a negative nelly. But here's the deal . . . this is my blog. Truly, it is kind of like my therapy. So, "owning" the hard times, when things are far from easy or rosy and talking about them on here, helps me.

So here goes.

I think I've cried more in the last three days than I have since the day (over a month ago) that I got put on bed rest for this pregnancy.

I'm lonely. I feel like I'm on lock down. B has been working non-stop, and while I truly, truly understand what it is like to have to work late and work weekends and wish you didn't and to feel tons of work pressure, the timing is just craptastic. This is a rare turning of the tables for us - usually, it is me that gets slammed with work, and him that has to pick up the slack at home (though that's never happened when he's supposed to be on doctor-ordered "light duty"). So, I get it. I do. But, I kind of feel like he's treating my "light duty/reduced schedule/modified bed rest" as an accomodation for HIS busy schedule. My doctor did NOT sign papers certifying me for medical leave so that I could be home to accomodate B's need to work late. He signed them so I could rest. Because I need to rest. And, frankly, I'm getting very little of that. Dislike.

A LOT of things in our life are a little overwhelming right now . . . the pregnancy, Sam's transition to preschool, B's work load, my own worries about what this bed rest/medical leave thing is going to mean for my career long-term (hopefully nothing). But, I can't help but feel like because he's working all the time, EVERYTHING is falling on me, and that all he's got to worry about (or all he is worrying about) is work. And, it sucks. As much as I'd like to believe this gestating business (and getting this baby to full-term) is a "team" thing, it isn't feeling that way right now. I'm the one with the uterus after all.

He's still going to work every day. And, I feel like I'm on some weird pseudo-lock down. Where I'm only supposed to work 20 hours a week, but that's not enough time to do a good job on anything that's on my work plate, so I feel like I'm having to choose between feeling like a constant failure at my job or feeling like I'm cheating the "light duty" rules to do better work, and then worrying about the consequences of either . . . I'm doing projects at home, but I miss feeling like part of a "team" at work too.

As I mentioned, we had a crazy week last week with many appointments (updates on those to come) and I did every one of those appointments without B. I tried unloading SOME of the worry about that stuff (and Sam's upcoming IEP) on B, and his reaction was, "she'll get what she needs, from school, from us, from whatever therapies we have to supplement with. She'll get what she needs. I'm not worried." While his "not worried" is generally always comfort to me, this time, truthfully, it infuriated me. Because she'll get what she needs if SOMEONE plans it. It's not going to just happen. NO one is going to hand us the magic schedule of her new therapies or her new schedule. NO one else is going to tour the preschools and try to find the one that fits. And, the school district sure as hell does not have our girl's best interests in mind. They have the bottom line - funding - in mind. So, yeah, she'll get what she needs. If SOMEONE looks into the private therapies, rearranges things, etc. And who is that SOMEONE? ME. So, I feel like while "not worried" is nice and reassuring, and all that jazz, right now, it'd be nice if I wasn't the only one worrying and arranging and scheduling and rearranging and researching and thinking and oh my.

I just feel a tad taken for granted. And lonely.

Sammie B and I had tons of quality time this weekend, which was (of course) fab. And, she's in "mama-mama-mama" mode, which I love. Love.

But, I feel lonely. I miss work. I miss my husband. I miss feeling like part of a team, at work and at home. And this weekend, I kind of just wished - since Sammie B and I were spending the weekend solo (and staying home and NOT doing is NOT my strength)- that we could go DO SOMETHING. Hop a plane to St. Louis to see my mom, hit Disneyland. SOMETHING. But, then, I'd be violating the "light duty" rules, and I can't do that any more than necessary. So, we made the most of our weekend. A quiet morning on Saturday watching "Annie," and then an indoor picnic at home. A quiet morning sitting on the beach with a friend and her daughter on Sunday. Not a bad weekend in all, I KNOW. But still, I just feel a little captive. And alone.

Anyway, so this is a blog post about one of the "not easy, not rosy" times. Right now, life just feels hard. Marriage feels hard. And by admitting that and owning it, I'm not saying my marriage is in trouble (it's not - he did bring me chocolate cake home after he worked all day yesterday, after all). It just means that, well, our right now isn't all roses. That doesn't mean there isn't "rosy" in between. There is. And, I'm hopeful that this week brings more roses, less tears.

Wednesday, August 3, 2011

Weeks like this . . .

wear me the EFF out. For real. I actually have a more substantive post in the works, but I most definitely don't have the energy to finish it tonight. We had our appointment with the new PT on Friday, then a relaxing family weekend, then an appointment with Sam's physiatrist on Tuesday, then I went into the office today (for my one day a week in the office) and got totally bombarded with work and ended up staying three hours longer than my doctor thinks I should (this job is just so hard to do on any predictable, enforced schedule, and truthfully, I'm not sure how to make it work that way during this time when I NEED to for the sake of the miniest B), we have a developmental assessment tomorrow with the developmental pediatrician at Sammie B's school (and unfortunately, its not the one I loved loved loved before, but someone new, so I've got the usual pre-appointment anxiety going on), and our second appointment with the new PT (to finish the intake stuff and assessment and talk more about some treatment goals going forward) on Friday. A whole lot of assessing going on, too much talking about the "can'ts" and the "cans" if you ask me, and this mama is WORN OUT. Honestly, I think a 80-hour work week is less draining than one filled with all these stinking assessments and appointments. Add to that some insomnia (which is so unlike me) and nighttime leg cramps and I'm a walking zombie.

But on the brighter side of things I got a text from Sammie B's nanny after school today that had me giggling ALL afternoon, even though I was upset that I still had hours of work to do, that the partners I'm working with needed everything right.now, and that I felt guilty for staying longer than "doctor's orders," and even guiltier bailing at 7:30 pm and sending the partner an email saying, "here is the draft so far, but I've GOT to go home."

Anyway, the giggles. So apparently, Sammie B's class took a little trip to the market today in their six-seater wagon, and Sam saw her teacher carrying money and she kept saying, "me!" and "I want money!" so he let her hold the money on the way to the market. But, as soon as he gave her the money, she looked at it, and said, "MORE MONEY!" That's my girl. She also insisted on buying bananas at the store, and actually ate one that she picked out. Little stinker won't eat a banana at home for anything. Even though I wasn't with her at school today, when I heard that story, I could just picture my girl demanding "MORE MONEY!" and insisting that they buy bananas at the store (as she does every time we go to the market, but then won't eat them!) and feeling so proud that she got to hold the money for her teacher. That story just captures her spirit, captures the magic and giggles that she is.

I so needed those giggles this afternoon.




Her snazz outfit she wore to school today, complete with sparkly purple converse. Girl's got style and magic.