Tuesday, December 28, 2010

A Merry, Magical, Wonderful Christmas Indeed!

So far, of all the Christmases of my whole life, this one was my favorite . . . it really is true that experiencing Christmas through the eyes of your child increases the magic exponentially!

We started our official Christmas festivities by celebrating with our much-loved nanny on the 23rd. We had dinner and exchanged gifts. Sammie B most definitely got into the spirit of receiving! Every time we asked, "who should open the next gift?," her answer was "MEEEEE!" Eventually we learned, and when it wasn't her turn, we gave choices, like "who should open the next gift, mama or dada?," and she'd pick one of us. One of my favorite moments of that night was when she opened a new outfit, and immediately grabbed the shirt and held it up to her, and beamed for the camera, like "hey, I know . . . this is a new thing for ME to wear!" Pretty stinking cute!



Then, Christmas Eve morning, Sammie B slept in (B and I decided we weren't going to rush to Disneyland and fight the early morning crowds . . . we'd get there when we got there, and just enjoy our morning and our day) and then opened a few presents from her Nana and Papa on skype.




She also showed them how much she's enjoying taking some (assisted) steps, which I'm pretty sure made their entire day (and week!).

Then, we were off . . . we drove to Disneyland, both commenting how cool it is to live so close AND how fabulous it was after a week and a half of non-stop rain to be wearing short-sleeves and have sunshine on Christmas Eve!!



Everything about our time at the HAPPIEST place on earth was just magical. The funny thing is, several years ago, B and I went to D-Land for a firm event, and we commented (then) on how it seemed so much more fun just the two of us . . . we looked around and saw kids throwing tantrums, whining about lines, begging for expensive souvenirs, and we giggled about how lucky we were to be enjoying D-Land, just the two of us, without all that extra stress . . .

We were so so wrong. Because obviously, something changes when you are there with YOUR child. (Well, and of course, Sammie B is an angel . . . no tantrums or begging!). But truly, seeing everything at Disneyland through Sam's eyes was MAGICAL. I cannot even imagine a better day. I literally had the biggest, goofiest grin on my face the entire day and even on the car ride home (as I thought, "I can't wait to go back!")

My favorite part of the day was probably riding Dumbo with Sam. She kept screaming and saying "whoah!" as we went up and down. I could not stop laughing! So, the second I got off, I said to B (who'd stayed off to take pictures of us), "you HAVE to ride that with her, she loves it!" so we went on Dumbo again, and I could hear B in the elephant behind me laughing as Sam screamed and giggled with absolute glee. The best.




Sammie B also rode the carousel, and hippotherapy must be paying off, because she was able to sit on the horse all by herself, though of course, B stayed CLOSE!!!



(Sometimes the inchstones are in the simple little moments, right?!)

We all bought mouse ears, though Sammie B didn't dig on hers (but enjoyed stealing dada's).



And, let me tell you, there's nothing like glancing over at your husband, seeing him wearing mouse ears (with a Santa hat on top) and pushing a stroller to make you realize you have somehow become not only grown-ups, but those grown-ups . . . the dorky kind you never thought you'd be. Or to make you realize how very much you love him. Because EVERYTHING about this picture makes me smile.



We waited in line to meet Mickey, and just as she'd been promising, Sammie B planted a big kiss on him. (We'd been asking, "what will you say when you meet Mickey Mouse?," and she'd make a kiss). We stayed for the parade, which was so pretty, and to see the D-Land all lit up at night with Christmas lights, and then, our sweet girl CRASHED.



Since Sammie B was oh so tired, we skipped the fireworks, and instead grabbed a quick dinner in downtown Disney, got our girl in her Cmas pjs, and headed home . . . to open ONE present (a Christmas book from Gigi and PawPaw) before Sammie B and B went to bed while I stayed up to get a few things done (and wait for Santa ;o)).



AND Santa DID come. Santa must read (as do I) Ellen's blog at Love That Max, because he brought Sam TWO of the presents Ellen had recommended (some of Max's favorite toys!) - a ball pit and a roller coaster! Santa must not have (as I did not) read the dimensions on these toys before he picked them for Sammie B . . . because we've now lost our living room.



And her face when she saw her new toys?! Made the significantly-reduced amount of space in our living room oh so worth it! (This was after sleeping until 10:15 AM!!! Tired girl after a day at Disney . . . normally I would think of that wake time as a gift, but I was so giddy with excitement for her to see her presents that I literally laid in bed staring at her, waiting for her to wake up!).



So we spent our day just playing and enjoying our new toys (and posing for a few silly Christmas pictures!).






After playing hard all day, we took a glorious Christmas nap, and then (as promised) headed OUT to dinner.



(Another reason to be thankful for where we live - a HOST of restaurants in Chinatown open to cater to those that don't celebrate Christmas, or those (like me) who don't feel like cooking!).

It truly was a magical Christmas. I remember as a kid, I'd fall asleep on Christmas night sad that the holiday was over and I'd have to wait a whole year to experience it again. This year, I fell asleep with a HUGE smile, thinking, "if each year Christmas gets better and better with her, I can't WAIT for next year."

So, thank you my sweet Bean, for all that magic that is YOU . . . on Christmas and every day of the year. Seeing the world through your eyes makes my day. Every day.

Thursday, December 23, 2010

Random Musing and Reflections on My Alternative Work Schedule (Mostly For My Fellow MILPs*)

First, the random. Last night, I had a hair appointment - highlights and a cut, but all me-me-me time. I actually left work thinking there’d be tons of traffic, but there wasn’t, so I made it to the ‘hood where my hair salon is with 45 minutes to spare. In that amount of time, I managed to make a mad dash through two of my favorite stores -- Anthropologie and H&M. The line in Anthropologie was so long that I left, but not without falling in love with a certain purple jacket. I’m going to check after Christmas and see if it is on sale. So, then, with only 20 minutes to spare, I ran into H&M. That store is sort of a new one for me, but I’ve started going there for cute, cheap, trendy pieces that I know I won’t wear that often. I didn’t have time to try anything on, so I bought two sizes in a few things, hoping to wear something new to the office today. Yeah, well, they could learn a few things about vanity sizing. Even though I bought my size AND a size bigger, skin tight. Not office appropriate. Not even leave-the-house appropriate for a thirty-something year old, dignified lady such as myself. So, I’ll have to return all of that stuff. (Trust me, it is H&M, not me . . . I’m actually at my tiniest right now . . . as B JOKINGLY says, “anxiety looks good on [me].”). I read a deposition transcript while getting my hair done, and am finally finally feeling like I have a good grasp on the technology at issue in my case. So, all in all a good night. I’m not wearing anything new today (damn you H&M and your terrible sizing), but my hair looks good, and I’m taking my liberties with business casual (since there’s NO ONE in the office today) -- leggings, a sweater tunic, and ballet flats, a slightly younger, and more casual look than I'd usually do for the office. I think I look so good it is almost a shame there is no one to see ;o) With this upbeat attitude, I’m hoping to knock out some good work before heading home to do our holiday festivities/gift-exchange with our nanny tonight and gear up for the Disneyland festivities tomorrow.

Second, the reflections. As most of my MILP readers know, I’m on a “reduced” or “alternative” work schedule and have been for just over a year. I’m not THAT reduced. Basically, I just took a small percentage paycut to be responsible for a small percentage less of billables at year end.

We all hear stories of BigLaw attorneys who try the alternative work schedules, feel like they are getting reduced pay for full-time hours, and end up disenchanted with the whole thing. I won’t lie . . . there HAVE been times I’ve felt like that. I’ve billed 200+ hour months. But that was in trial, or leading up to trial. For the most part, I’ve managed my schedule well, and at the end of the year . . . billed less than I would have as a full-time, regular-schedule associate. Did I bill over my part-time commitment? Yes. Did I bill less than I would have had I not gone on the alternative/reduced schedule? YES. Has it been worth it to take the pay cut? ABSO-FREAKING-LUTELY.

I think the reason it has worked so well (besides a supportive firm and supportive partners) is that I’ve been flexible, and never lost sight of the fact that reduced-schedule or not, I’m part of a team. When we had deadlines that required working on my “off” day, I’ve tried to not let my reduced schedule lead to MY work being dumped on others, but I’ve also been careful to set clear boundaries when there weren’t deadlines requiring me to do something sooner rather than later, and taken advantage of the opportunity to work from home many days. With partners who never seemed to remember my schedule (and there are a few), I gave frequent reminders, like “sure, I’ll get that done, but remember, Tuesdays are my out-of-office day, so is Wednesday okay?” Yes, I have worked some Tuesdays, but I’ve also taken lots of Mondays, Wednesdays, Thursdays, etc. off when needed. I’ve never had to miss a doctor’s appointment for Sam that I wanted to be at (and if you follow my blog, you know there have been lots of those). I billed over 250 hours in two weeks at trial, but I came home and took a MONTH off. So, while from week to week, my schedule hasn’t always been "reduced," over the course of the year, it most definitely has. And, I just think it would be hard to make a more rigid “reduced” schedule work in the world of litigation, without being demoted to some lesser part of the case team, which I knew I wouldn’t want. One of the greatest challenges to me has been adjusting to the ebb and flow, but that's true for ALL litigators. I fall into a groove where work is at a pretty steady, normal rate, where I feel like I truly am balancing my two worlds, and then BOOM!, a case gets insanely busy, and I have to readjust everything to figure out a new balance.

I have been sure to let the partners who have supported me in this KNOW how much I appreciate it. KNOW that my loyalty to this firm has been increased TEN-FOLD by the fact that they’ve helped me/allowed me to make this schedule work. To make it so that I don't have to be one of the women that "opt-out" of BigLaw to get reduced hours. I'm lucky that my "reduced" schedule hasn’t affected the quality of work I’ve been given, or the opportunities to join new cases. To be truthful, I HAVE turned down some of the opportunities I've been offered, and it hasn't been easy . . . when given the choice between traveling to a hearing or staying back to draft a motion, I chose the motion. In the moment, I worried I was making a silly career move, but at the time, we had a lot going on with Sammie B and so, it was just the right thing for our family. I know as a mom trying to balance it all . . . those moments will happen. I also believe I'll remember those moments far longer than the partners I work with (hope so). I believe that the partner that led that case probably remembers that the motion I stayed back and wrote was a winner, not that I didn't go to the hearing.

I’ve worked hard to make sure that the work that I have done has been my best. Sure, I’ve turned in things at times that weren’t my best (don't we all do that occasionally?) . . . but for the most part, I’ve really tried to make sure the quality of my work made up for the reduced quantity they had to evaluate me on. I’ve worked hard. Very hard, but the flexibility this schedule has allowed me . . . the psychological freedom actually more than anything . . . the amount that it’s allowed me to “let myself off the hook” so to speak in terms of feeling like I have to bill a million hours (both because that's what BigLaw associates do and because that’s who I am) . . . has been priceless. If I’d been a full-time regular schedule associate this last year, I still would have billed MORE than the minimum. It’s who I am. I don’t like to just “slide by.” I like to overachieve. So, I did. I came in above my minimum, which felt do-able to me, while still enjoying life and still being mom. And I feel good about it. Great actually. And most importantly, I feel like my firm has supported me in this, and that is a great relief.

(*MILP = "Moms in the legal profession")

Wednesday, December 22, 2010

Oh Sammie B, The Way You Do The Things You Do

If ever there were a picture that captures exactly who our Sammie B is, right now, this is it:



Sammie B, you are a lover. This sort of moment is a regular thing . . . we'll just be sitting around as a family, and you'll reach over and rest your little hand on one of our shoulders or legs, and just sit there like that. Or we'll be laying in bed at night, and you'll rub one of our backs, while we rub yours. You are a lover.

You are also REALLY into giving kisses right now. To ANY of your favorite book characters, to babies, to your stuffed animals, to us. When we tell you we love you, you usually immediately lean over for a hug and a kiss. Or sometimes, you just lean over and rest your head on our shoulder . . . your way of saying, "I know, I love you too." You are a lover.

You've recently told us that "Mummo" is your favorite person. Dada asked, "Sammie, who is your favorite person?" and you immediately said "Mummo" . . . I said, "that was mama, right?" and your dad laughed and said, "no I think its Elmo," and we asked again, and you shouted "MUMMO!" like "didn't I just tell you people this?" So, Elmo it is. I hope I'm at least second place ;o)

Lately, you just do so many things that amaze, surprise, and (of course) melt me. I'll be sitting at work, and think of some cute little thing you did the night before, and I can't help but smile to myself. Or I'll think of something new that you showed us that you knew, and I'll just beam with pride.

I know I won't possibly be able to remember all of my most recent favorite moments with you, but I'm going to give it my best.

When we were in Baltimore, twice you did signs that I didn't even know, and certainly didn't know you knew -- tree & bus. When we were getting on the shuttle bus at the hospital, you made the sign for "bus," and I looked at your dada and said, "is that bus?" And he said, "yes." You learned this one on your own, just from your videos. Same thing with "tree." We were walking past a Christmas tree in the hotel and you just signed "tree," which I didn't know you knew. See baby girl? You are amazing.

One of my most favorite things you do is that anytime you are "thinking," you put your finger to your chin and say "hmmmm." You learned that from your nanny, and it is 100% hilarious. I'll ask you, "do you want Elmo or your penguin?" or "where's the apple in your book?" or something similar and you immediately put that finger to your chin and say "hmmmmm" while you decide. I usually giggle (I can't help myself) and then, you'll look at me, giggle, and do it again while you finish thinking.

You now say the word "no" A LOT. And the super cute thing is that you have many different versions of no. For instance, a simple question like, "Sammie B, do you want some water?" might get a quiet, "uh, no." But a "do you want to go to sleep?" will get a very very determined "NO NO NO" every time. And the other day, you and I were just laying in bed, and we heard dude (your doggie) trotting up the stairs with something rattling in his mouth. You couldn't see him (nor could I) but you recognized the sound of your baby doll in his mouth, and you immediately screamed the most frantic "NO!" that could possibly come from your little mouth. That one made me laugh all day. And even better, when we were in Baltimore, and your dad had a SLIGHT case of road rage and was yelling at other drivers, you yelled "NO NO NO" right along with him. You are such a little ham, my girl.

You are also such a sensitive little girl. You know the sign for "hurt" and for "sorry" and whenever you need to use them, you do, but sorry always always always comes with tears. The other night, I was reading you a book about a dog named Spot, who got hurt, and needed a band-aid on his knee. On that page, you started crying. Little girl, you melt me. And tonight, when we discovered that Dude had chewed the nose off your Minnie Mouse stuffed animal, you just fell apart. I held you and you cried and I kissed Minnie's noseless face and promised we'd get a new one soon. Because you don't have the words to tell me yet, I'm never totally sure how much you understand, but tonight, my sweet girl, I knew you understood that your Minnie had lost her nose, and you didn't like it one little bit!

New words and word approximations seem to be popping up daily. You've now said "dool" for "school" and "pay" for "play" (which also happens to be your most frequently used sign). You are a quiet little girl who takes some prompting to use the words you do have, but they are coming, and even without words, you are so so communicative with us. There's rarely a moment where you can't tell us what you want, either through signs or words. You really are so so amazing.

As I type this, I'm keenly aware that some of our DD friends haven't yet found their voices, and some have lost them, and I know we are so very very blessed to have heard yours. As the words come, my heart soars, and I can't wait to hear all that you will tell us in your life. For now, you tell your stories with a few words, but mostly with signs, smiles, your many many expressions (you furrow your brow frequently when trying to figure things out, just like your mama!), giggles, hugs and touches, and we love it. Every single bit of it.

If I light up your world just a fraction of the amount you do mine, then I feel good about myself as a mama.

And Sammie B, from the tons and tons of messages, calls and texts we got before, during and after the big Hopkins appointment, it is so very clear (as it has been for awhile actually) that your fan club is widespread and huge. With your magical smile and loving personality, you have won the hearts of many. It is what you do. It is part of your magic. And I know, my girl, that as you add new words and new skills, your fan club members are beaming right along with me and your Dada.

Love,
Mama

Tuesday, December 21, 2010

Back to the Holiday Cheer

As it usually does, the "ship" has sort of righted itself. I'm feeling better, trying to stay on top of things at work (or I guess, get on top of things, because "stay on top" sort of assumes I'm already on top, and I'm not), and Sammie B is recovering from her cold too. We all had a better night of sleep last night. The "simplify" the holidays plan is also still in force, and we are indeed dining out for Christmas. We will, however, be doing something SUPER fun on Cmas Eve, assuming the weather cooperates -- DISNEY LAND!!! We realize its going to be insanely busy, but Sam really is enjoying characters and Christmas and all that jazz this year, AND its the last year she'll qualify for free admission so we are going to go for it. I've never seen the Land decorated for the holidays, so we are all pretty stoked.

Eventually, I'll finish the draft posts I have started, but can't seem to finish, but for now, Christmas cheer in photos . . . three years worth!

2010 (with a smile!)



2009 (completely frozen, like "maybe if I don't move, this red guy won't notice my parents just plopped me on his lap")



and 2008 . . . barely a pea on Santa's lap



Sam knows what Santa says this year, "Ho Ho Ho!" and has been enjoying handing off presents to her therapists, so it truly has been a fun season. She LOVES Christmas trees, and both signs and says "chi" every time she sees one, including ours. When we saw Santa, we asked her what she wanted to tell Santa she wanted for Christmas, and she signed "tree" immediately. So, she's in the spirit. Mama's getting there.

Monday, December 20, 2010

Irritability, Insomnia, Blech.

I have NEVER in my life been one who couldn't sleep. Like ever. I consider it a talent that I can fall asleep anywhere, anytime. Concrete floor? 15 minute power nap? Done. Even when I'm really worried about something, sleep is my escape. I'm a stress sleeper, not non-sleeper.

So, I've been completely thrown by the fact that for the last several nights, I have NOT been able to sleep. It is not like I've been worried about Sam. I haven't. The Hopkins trip left me in a good place, and I've been feeling so hopeful and optimistic. But, for several nights, I've just been laying in bed with my wheels spinning until like 4 am.

Part of it is the holidays. So much to do. Shopping, meals, etc. B was raised Jewish and just LOVES Christmas (he says he was "cheated" out of it his whole life) so we always make a big deal out of it. This year, its just the three of us, and I didn't want to disappoint, so I planned on making a Christmas meal just for the three of us. But then I realized, B is all about the "joy" of the holiday, but I take on all the work. I did all the shopping, all the gift-selecting, all the wrapping, etc. etc. And I'm stressed. Work HAS picked up (as promised) and I have a lot on my plate. I lay in bed thinking about all I have to do, thinking I should just get up and DO it (since I'm not sleeping anyway) but I don't. Because really, who wants to get up at 1 am and read patent file histories?

But two nights ago, sometime in the wee hours of the morning, I realized I have to simplify this holiday for myself. Because something has to give. So, there will be no Christmas dinner at our house. We'll be going out (for Chinese!). We'll have a big New Years Day meal when my mom is here the following week, and that's enough. I can't do it all, and there's no reason to try.

Sweet Sammie B also came down with a cold, and hasn't been sleeping well. She's been a congested little hot mess, and wakes up crying during the night. And B is NO help in the middle of the night. He says really helpful things like, "SAM, you are fine," and rolls over and goes back to sleep while I comfort and soothe. The problem is, I know that part of it is that in those moments, she ONLY wants me. He'll try to comfort her and she'll say "no" and roll over for me. So, he gives up and lets me do it. And the thing is, my heart melts that she wants me. Me. That I'm the one she goes to for comfort. That's "mom." I work with women whose kids could care less whether it is their mom, dad or nanny comforting them in those kinds of times (and even some where the moms readily admit they play second fiddle to dada in those moments) and I know that wouldn't be enough for me as a mom. Pre-baby, I might have thought so. I would have thought that's what equality and co-parenting is all about in a dual-income family. Post-baby, post-Sammie B, it would kill me if she didn't want me. So, its sort of a double-edged sword . . . I want her to want me more than anyone else in those moments, but I'm tired as hell the next day, and resentful that B gets to sleep through it all. And, I'm not really sure what the answer is. (This is where I'm hoping for comments, advice, some commiserating). I do know that laying in bed wanting to clobber B in his sleep is probably NOT the healthiest way to deal.

I remember in law school I attended a symposium about work-life balance, and a sociologist presented findings from a study that showed that even in non-traditional families (where the moms were the sole or primary breadwinners), moms still did more than 50% of the family management, child-rearing type of stuff. I definitely do. I pay the bills, I "manage" Sam's services, I'm the one that does most doctors appointments with her, etc. Part of this is because my job, while requiring many many more hours than B's does, is more flexible, but I think part of it is just being "mom." I wouldn't be happy if I couldn't do those things. I'd feel like a failure. Because I WANT to be the one at doctors appointments, etc. I want to be the one sitting in the waiting room at the doctor's office with my sick kiddo, not waiting at work to get a call from someone else with the results. B says that I do more than my share because I'm a control freak and won't let anyone else help. I know that there may be some truth to that, but other times, I think it is just a shitty cop out.

Anyway, that's how I'm feeling today. I haven't blogged in a while, but before I get back to my regularly scheduled programming (I have drafts! with Christmas cheer! and pictures!), I needed to get this off my chest.

And, Sammie B seems to be recovering from her little cold - we did go to the doctor today, I missed half a day of work because there was an hour and a half wait, even though we made an appointment - just a cold/congestion with an irritated throat, we got an antibiotic and she's on the mend. Oh, but I looked up side effects for the prednizone my own doctor prescribed me last week to hopefully (once and for all) get rid of the horrendous cough I've had for 4 weeks, and "insomnia" and "irritability" were at the top of the list. Hmmmm. Maybe that's why I can't sleep and want to clobber my husband while he does.

Sunday, December 12, 2010

Medical Mumbo-Jumbo and the JH Visit



As expected, I was a nervous wreck before our appointment at the Hypotonia Clinic at Johns Hopkins Thursday morning. Like sweating bullets nervous. Scared to death that would be the day we'd get *bad* news. But we didn't. It was generally a very encouraging and optimistic appointment.

We spent about 30 minutes with the genetic counselor who asked us what our biggest concerns are, asked what Sam is and isn't doing, and talked about what tests she'd already had. It was clear that she'd already read Sam's medical records, which was reassuring. Then, we spent about 45 minutes with the doctor, who was equally kind, compassionate, and thorough (also clear he'd read Sam's records). Sam even showed off some of her newest skills . . . the butt scootching and the transition (that's right, she's taken it bi-coastal now!) and he did all the usual geneticist super-super detailed exam stuff.

In the months leading up to this appointment, I'd painted several catastrophic scenarios . . . talked myself into and practically diagnosed Sam with several different disorders, and just generally, freaked myself out over and over. I'd kept a list of the various things I'd come across and worried that Sam had, and most of them, the doctor shut down instantly. There goes my google-ologist degree. This appointment was a good lesson to me that just because my child sort of-kind of sounds like another kiddo I've read about online or sort of-kind of fits the symptoms of some various "thing," not to diagnose her with it. That sort of thinking . . . the catastrophic thinking that is sort of part of who I am . . . is only hurting me, and robbing me of my ability to enjoy life, day by day. My new goal: Stop catastrophizing (a word I'm stealing from a friend). A lofty goal for me, but necessary.

Back to the appointment. One of the diagnoses I'd had many a panic attack about is Rett Syndrome, which is a devastating developmental disorder affecting females, where the girls generally regress fairly seriously and lose even the skills they have at one time . . . i.e. losing speech, losing ability to use hands, etc. . . pretty terrifying. On my board for mamas of delayed darlings, I recently posted about Sam not yet walking and us thinking about gait trainers. One of the moms posted back, "Your Sam sounds just like my ___." And then her darling was diagnosed with Rett Syndrome just a few days later. That shook me. To my core. I hated that I made that moment about me and my fears, but I did. And ever since, the thought has occurred to me over and over, and every time, I'd feel like I couldn't breathe. So, along with my other possible diagnoses, I raised this one with the geneticist at Hopkins. He said that he's rarely this certain about anything, and almost never speaks in absolutes, but that he could tell me he is 100% certain Sam DOES NOT have Rett Syndrome. He said he'd test for it if I wanted it for peace of mind but that he really thinks its a waste of money because he's that sure. So, crossing that one off my list of things that keep me up at night.

I also asked about mitochondrial dysfunctions, which are also terrifying. There are sort of groups of things that can cause low-tone, and we've already looked at Sam's brain (via her MRI in January, which was normal) and run metabolic tests (normal) but "mitochondrial" is another of those groups. The problem is mitochondrial disorders are nearly impossible to test for and diagnose. And, as the doctor at Hopkins said, can present in many many different ways. Fortunately, he doesn't think that Sam exhibits the major red flags for mitochondrial dysfunction (other than low-tone and balance issues, which are symptoms of so many things; she doesn't get frequent infections, she's literally only had like two colds in her lifetime and bounced back super fast both times; her muscles are actually strong, she's just lacking in tone, etc.) . . . . so he again feels pretty confident that's not the issue. That said, he's ordered blood work for various indicators of such dysfunctions, just to be more confident that that's not an avenue we need to be pursuing. I asked him if having a mitochondrial "dysfunction" necessarily = mitochondrial disease (which kids often die from :o() and he said no. His words, "there's absolutely nothing about your child that makes me think she's not going to live a long normal life span." Whew. So, while that one is a little harder to totally cross off the list of things that keep me up at night, simply because there are few ways to even definitely eliminate it as a medical possibility, I do feel better. Though I can't promise its totally off the list of things to keep me up at night . . .

He is running a genetic microarray on Sam to look for deletions, duplications, etc., but he said he really doesn't expect to find anything.

We discussed a few of his theories/possible root causes of Sam's hypotonia and developmental delays.

He suspects a connective tissue disorder, which would explain her super low tone and balance issues and her hypermobility (and thereby, her gross motor and expressive speech delays). Connective tissue disorders aren't that serious and are actually pretty common, and he said this isn't something that would prevent her from walking, running, etc., it just means its going to happen on a different time line, and that those things will come harder to her.

He also said he sees quite a few kids that share Sam's major "symptoms" but have no diagnosis -- low-tone, balance issues (which we'd attributed to low-tone, but he thinks the balance issues are separate -- all low-tone kids don't have the same bad balance she has -- though he said she's not ataxic), hypermobility, and a slightly big head. (She's 25th percentile for weight/height but 75th - 90th for head.) Those kids that fall into that category also usually have some part (neither me nor B can remember what part, but its small) of the heart that's slightly enlarged. Again, nothing serious, but something we'd need to monitor. Because he sees that so much, and she has the OTHER characteristics, he sent us for an echo of her heart; but that came back normal (always good!). He said that the medical community is pretty sure that this group of kids with those features share some sort of common syndrome or diagnosis, but that science just hasn't yet isolated the gene or mutation or whatever is causing it . . . he thinks that's probably two to three years away, but will eventually happen. In any event, the prognosis is still good . . . and the kids that he's followed with these characteristics do well, and he's never known of any to need any intervention regarding the heart issue.

Sam was an angel throughout all of the appointments. During the echocardiagram, she laid perfectly still, holding her dada's hand (I get so nervous during these things, I can never sit still; B is always the calm one, holding and soothing, which I'm so grateful for); and even the bloodwork went fairly smoothly. They sent us to their infusion nurses that regularly poke kiddos, they got it on the first try, and we had minimal tears and screams (from me and her!).

All in all . . . a very good visit. The doctor was so very very optimistic and encouraging about Sam and her long-term prognosis. And because I'm sure many will come across this post when googling the clinic, I just want to say that it was definitely worth our travels and waiting for the appointment. The thing is, all of Sam's doctors at home see some low-tone kids. Some. But I'd bet her general pediatrician sees very few as low-tone as she is, and even her neurologist doesn't see that many JUST like Sam. But this doctor? Low-tone is his area of research. Expertise. He sees TONS of low-tone kids that haven't yet been diagnosed. So, he gets it. And that's super comforting. He mentioned connective tissue disorders, which none of the other ologists have . . . so even if it doesn't turn out to be that, I just felt like he's in a better place to help us and Sam than any of the other experts we've met. He also will stay in touch with us, and if later, science finds something that fits Sam, he'll let us know so we can decide whether to pursue testing or not.

While having the blood tests pending is of course a little stressful and worrisome, we feel better. I'm sure over the next 8 or so weeks while we wait on results, I'll have my moments of panic, moments where I feel like someone sucked the breath out of me, but I'm truly going to try not to.

It was a stressful week. An EXHAUSTING week. After the appointments, B and I just hugged and hugged and talked about how *this* (Baltimore) certainly wasn't a stop on our journey we'd ever imagined, but that we both knew it was well-worth it and it was the right thing to do for us and for Sam. And on the way home on the flight, we again talked about how optimistic the doctor had seemed. That she'd walk someday. Run someday. And while that makes us very very happy to think about, B looked at me and said, "and if she doesn't, so what?!" and I said, "right." and for the very first time, I know we both meant it. Usually those conversations end in me crying and saying, "but she will. I know she will. The doctors think she will," and getting mad at B for even making such a suggestion. But the truth is . . . it doesn't matter. Yes, we hope she will. But, its her story. So, finding myself in this place of peace, with my husband, with so much optimism and promise, feels better than anything has in a long, long time.

We found love in Baltimore!



The details of the much-anticipated, long-awaited, super nerve-inducing appointment at JH are following, but for now I just had to post some pics of Sammie B and her main man, Joe.




Joe's mama and I connected on one of my online forums for delayed kiddos, and when we decided we were going to Hopkins, she said she'd drive THREE hours to meet us! So glad she did -- it was a wonderful day, and a great way to spend our pre-appointment day. It is SO very very refreshing to meet *new* friends that just get it . . . and that was just the case, L and I chatted for hours about our sweet beans and what their delays and therapy schedules and everything under the sun means for our lives. With no lengthy explanations needed, just chatter. Without skipping a beat. I'm now trying my best to convince her to join me for BlogHer 2011 in San Diego!!!

Oh, and true to form, Mr. Joe was actually way more into me than he was to Sammie B. I tried to explain "cougar" to him . . .



The second he could get away from Sammie B's hand-holding forwardness, he made a bee line for me.

I'm so glad we got to meet this little dude (and his mama) in person. We've been big fans for a long time, and now we're even bigger. Here's to two magical little kiddos!

Sunday, December 5, 2010

Scared

Last week was an amazing week for Sammie B (and for me and B!). I literally felt like I was walking on sunshine all week. We had several more transitions :o) She's still not doing it 100% by herself everytime, but sometimes she is, and the other times, she just needs a teeny tiny big of help. And her pride in herself when the transition is done is PRICELESS. And days 2 and 3 of school were just as fabulous as day 1. It was just the week I needed . . . leading up to this week, which is sure to be filled with some anxiety.

This week, on Thursday, is our long-awaited appointment at the Center for Hypotonia at Johns Hopkins in Baltimore. I'm nervous, though the "walking on sunshine" feeling has sort of kept me calmer than I'd expected. But, I'm not excited, and frankly I wish people would stop asking if I am. Hm... Excited that I have a reason to fly across the country to take my daughter to a doctor? NO. Excited that she likely will have blood work, etc.? NO. So, excited is NOT one of the emotions I'd describe leading up to this appointment, and I'm shocked that that is the first question everyone asks when they realize the appointment is this week.

Sam LOVES planes. Loves them. She's flown so much that when we pull up to the airport, she immediately knows where we are and starts signing "airplane." But all of her previous trips have been FUN ones, and my heart will be a bit heavy as we board this plane, knowing that it is taking us to a doctor appointment (where needles are likely). So, not excited. Quite frankly, it stinks.

There are parts of the trip that I AM excited about . . . Wednesday, Samantha has a date planned with another four-eyed cutie, Joe. Joe's mom and I are going to take our sweet beans to lunch, to see the harbor and then to a children's museum. (B is headed into DC for the day to lunch with an old friend of his). Friday, we are going to take Sam to the Baltimore acquarium. So, exciting things sandwiching the OTHER day of our trip - appointment day - Thursday, which I'm just not excited about.

I'm scared. See, part of me wants to know 'why' certain things are just not coming easily to Sam, why she's so very very low-tone, but the other part of me (a much bigger part) is just content and COMFORTABLE in our grey area of no diagnosis (particularly since we have seen neurologists, geneticists, etc. -- so its not like I'm content with not knowing and have been just blindly going along and not looking for an answer, we have, but didn't find one, and settled into our "no answer" comfort zone). Without a label or diagnosis, I've finally finally (most days) reached a place of peace. But of course, (and our sole reason for going to Hopkins) we don't want to stop our search for answers prematurely and have there be something we are missing that might be treatable. So, we go.

I guess what I'm most terrified is getting an "answer" at Hopkins that somehow turns our world upside down. I can remember SO very very clearly the feeling after Sam's first PT evaluation when the PT said, "have you seen a neurologist?" I felt like my entire world had turned upside down. I could not function during the period it took for us to get an appointment with a neurologist . . . and even though the neurologist never found anything going on other than Sam's low-tone, we've had many periods of worry and panic over the last year and a half. But lately, lately, I just feel like the ship (that is our life) has righted itself. Like we've found our new normal, and we are just at peace. Not every second of every day, but most of the time. Peace. And, I don't want to go back. Back to that feeling of having my world literally turned upside down.

B's cousin sent us the sweetest message, which (quite insightfully) recognized that this is not a trip we are likely "excited" about . . . he said he just hopes that the trip goes as smoothly as possible and that the people we meet there are compassionate, intelligent and insightful. I hope those wishes for this trip come true. And, more than anything, if there is an "answer" to come out of all this, I hope it is one we can find peace with . . . and one that won't prevent our sweet girl from living the long, full, healthy, magical life she deserves.



She fills my world with such magic and sweetness.

Thursday, December 2, 2010

A Step-by-Step Guide to THE TRANSITION (By Sammie B!)

In case my post earlier didn't adquately describe the infamous TRANSITION, here you go, in picture form :o) (captured via blackberry by our ever-loving nanny while I work late :o( because sometimes, that's what balance requires!)

STEP ONE: Lay on your tummy, looking super cute.



STEP TWO: Get your bum in the air, wave it like you don't care, and PUSH with your arms. (Now is NOT the time to worry about your messy hair!)



STEP THREE: Keep PUSHING with those strong arms, ease back onto your cute little bum, and then (with some great effort) wriggle those leggies out from under yo bad self!



TADA!

STEP FOUR: Finish that OT session and go out and party like the rockstar you are!

Our Bee - Sammie Bee



"Bee" is one of Sammie B's many nicknames. Her PT always always calls her "the Bee" even in emails to me, which I just love. And to me and B, the "Bee" has started to symbolize hope for all that is ahead for OUR BEE. I wore one of those "make a wish" string necklaces with a bumble bee on it, until THE BEE yanked it off on Monday (but promptly signed "sorry!"); I love to find little bumble bee t-shirts and onesies for the Bee, etc. And I didn't even know that there's this whole notion that most human engineers do not understand HOW bumble bees fly; they just do. Pretty neat. Even if it just a myth (may be!), I like it.

Aerodynamically the bumblebee shouldn't be able to fly, but the bumblebee doesn't know that so it goes on flying anyway. ~Mary Kay Ash

On Balance - A MILP Kind of Post

This blog runs in three little circles -- (1) SN mamas who read it because we share some aspects of our journeys as mothers (well and because who doesn't love to read about a magical rockstar?!); (2) people who know us who I've shared the link with to get updates on us and Sammie B; and (3) MILPS. That last one is "Moms in the Legal Profession" -- I'm part of a weekly "round-up" of lawyer-mama blogs. But I realize that the last sort of "sector" of my life gets little airtime here . . . at least lately. Part of that is because writing about work isn't as fun as writing about Sam, but its also (more so) because I come here to write about my struggles and challenges, and well, work hasn't really been much of one lately. My hours have been low low low for three months. After trial in June (three weeks out of state away from my fam; billing hours like a MAD WOMEN), I took nearly a month off, and getting back into the groove has been hard. I've had the luxury in my three years as a lawyer of mostly working on one HUGE case at a time (like 200+++ hours a month for 6+ attorneys huge, or for me, a little less because of my alternative schedule).

After trial though, it seems like every case I get on seems to settle, so then I'm back on the market looking for another case . . . and as a result, I've spent much of the last few months working on three or so smaller cases, which makes managing my work load a newer challenge. Trying to figure out if the cases I have are enough to amount to a full work plate, and upon realizing they are not, trying to find aNOTHER case to add that won't result in a plate that is WAY too full . . . and, it gets tricky saying to a partner, "I can't jump on X case, because . . . " when your hours are low, but at the same time, I can't take on a case that will require tooo much of my time b/c I DO have to remain committed/able to work on the smaller ones I'm already committed to, and I AM a reduced schedule attorney. Navigating all of this is tricky at times (My firm doesn't have work load coordinators; we are our own work load coordinators). But one of my cases IS going to get super busy, and so I don't want to commit myself to things I can't handle. This is a new challenge for me.

The low hours has also allowed me to focus on Sam the last few months --After celebrating her September birthday, I spent well over a month dealing with her annual reviews, etc. with the regional center, preparing for those, advocating (read: fighting like mad) to get her into the center-based program (preschool), getting all of her medical records for our upcoming JH trip (which is next week! As an aside, I'm surprisingly calm about it, though I know the freakout will set in soon), etc. So, it was nice to be able to do what I NEEDED to do anyway . . . sit at my desk and manage my personal life a bit without a million deadlines looming.

But, at some point I KNOW I have to get more hours in, or I will screw myself for the year (our billable year is August - August, so those billing-like-mad-trial-hours counted for last year). I also billed more than my part-time commitment last year . . . and sort of want to see if I'm compensated for that come bonus time. I think that will, rightfully so, help me measure my loyalty to my firm (which I have to say is pretty darn high -- I can't imagine a group being more supportive of my schedule, my Sam-stuff, me traveling when I need to, working from home when I need to, etc).

Although I worry that some partners are looking at my last three months hours and raising eyebrows, I'm confident that the ones that know me aren't. If I hadn't already proven it, my pre-trial and trial work proved that when necessary, I kick my ass into the highest of gears, and work as hard and as much as I need to do good work, even when that means working on my days off, weekends, etc.

I of course deserved some down time post trial (partners TOLD me to take it); but I just worry I've stretched it too long . . . and I think on the flipside, I'm ready to be super busy and challenged again, which I think is just around the corner. My favorite partner (who is also in charge of one of my three cases now) called last week to tell me that three of our team members will be at trial on another case in January, and thus that he'll need me to spend more of my time on the case (yay!) . . . including taking over some of the tasks from the partner that's going to be out. The partner that's WAY senior to me. His tasks -- to me. Yep, a little bit overwhelming, but also a huge vote of confidence from said partners. I'm glad. I think one of my weaknesses is that I work my hardest when I'm under "the case is about to implode" types of deadlines, and other times, when things just sort of-kind of need to get done soonish, I have a VERY hard time motivating myself to do them (and not instead focusing on Sammie B and that sector of my life). . . so I'm excited to know that I'll have depositions, expert reports, etc. on my plate . . . big deal stuff that will require me to focus and work hard and challenge myself.

Anyway, so "work-life balance" hasn't been a big topic on here lately because I haven't really been struggling with balance all that much. But I know litigation is cyclical, and the crazy cycle is about to start, so balancing work and life is going to be a challenge again in the coming months, but I think I'm ready for it. Glad I was able to get Sammie B in her new preschool, on her new schedule, so so grateful that my schedule allowed me to focus on that, and now that we have yet another "new normal," I'm ready to juggle. I think.

Wednesday, December 1, 2010

A BIG DAY . . . so BIG

Yesterday was a big day for Sammie B (and for me!) . . . a day worthy of a letter. So here goes . . .



My DEAR Sammie B:

Yesterday was a big day for you. A big and busy day (so busy in fact, I'm not sure who was more tired, you or me!). You started "school" for the first time! And I got to go with you!!! It was a VERY special day.

I had to wake you up early -- after you practiced your new quadriped skills in my bed until 10 pm the night before! You (like your mama) are NOT a morning person, so you didn't appreciate being woken up early, and didn't smile too much in our "first day" pictures. But, I took them anyway!



You wore a sassy new outfit that I picked out and your Nana bought for you (skinny pink cordoroys friends!) and you had a special new backback that says "Sammie B" on it that your Gigi bought :o) Special gifts for a special girl. And yes, this begins for you -- in the tradition your Gigi started (and continued) for me (for more years than she thought possible) -- the "new first day of school outfit" tradition! (Gigi says she wouldn't have made such a big deal out of my first days of school if she'd known I would stay in school for TWENTY-THREE YEARS).

We got to your school early, so we could put your things in your cubby and get acclimated a bit. . . (and snap a few more pictures). You'd already seen your classroom, so you seemed comfortable right away, and you were happy to sit in the tiny little chair (just as I was to see your cuteness in it!).



Then the other kiddos and parents/caregivers arrived and we did opening circle time. At your school, the parents/caregivers get to stay for that everyday, which is pretty cool! Through circle time, free play time, snack time, outside play time, activity time, lunch and closing circle, you were amazing. You were you. Amazing little observant Sammie B. I watched you and could tell that you were just taking it all in. Watching you have new experiences is probably my number one most favorite thing in life. It melts me. Every time I asked you if you liked school, you smiled and nodded "yes" with enthusiasm, and you gave your teacher a whole lot of flirtatious Sammie B smiles. I'm pretty sure he's already fallen in love with you. Hard not to. They are all very impressed with your signs (you have "backpack" now!). At closing circle, we sang "Twinkle Twinkle" and I got tears in my eyes. Sappy mama! I'm so glad I got to share that day with you!

I watched the teachers, PT, OT, and teaching assistants with you and with the other kiddos, and it just reinforced what I knew . . . this school is going to be so wonderful with you and for you. So so wonderful. So here's to new adventures my little girl!

After school, we rushed home for a quick celebration (also tradition in my family!) with a cake and some small presents . . . Your loving nanny, her mom, and friend joined us. (There's some things I'm going to do a little different than Gigi did ;o) like buying, not making, the first day treats!).





After our party, it was off to hippotherapy. It is a LONG drive, and you slept the entire way (wish I could have!).



After horses, a quick bite to eat on the way home (pizza, our new Tuesday night tradition) and then the long drive back. I called dada on the way back to tell him all about your day (he's so very sad to be out of town this week of all weeks!).

And when we got home, there was yet another big "happening" in our house. I put you in your bedroom floor while I folded a quick load of laundry and you were just rolling around. I looked over and you were on your tummy, and then up on all fours! THEN I said, "okay, sit up," and you did! FROM FLOOR TO SIT ALL BY YOURSELF. THE EVER-ELUSIVE "TRANSITION". See, we've been working on THAT transition with you for about a year and a half. Our PT kept telling us how important it is for a kiddo to be able to go from belly to all fours to sit. A year and a half ago, that seemed MILES away. We had to do every single step of it for you. You HATED it. Over time, the tears got fewer and the amount of the "work" we did lessened, and you did more of the work yourself. There were times when I secretly thought the stupid transition was just that . . . stupid . . . and wondered why the PT insisted on working on it EVERY session. But we did. We -- you --- worked oh so hard. And yesterday . . . you did it. To see you on all fours, smiling from ear to ear, then working your way back to your bum . . . priceless. My girl -- you worked so hard. I screamed with glee, you laughed and smiled with sheer delight and pride, and I immediately texted your dada, PT and nanny "!!!!!! TRANSITION !!!!! She just did it all by herself; 100% bee, from belly to sit!!!!" I got excited messages back from all three within instants.

And then, (after you practicing your new skill several times in bed) . . . we crashed . . . hard.



A big day indeed. So, my sweet girl, while I can't promise that I won't ever get discouraged with all the hard work, or that I won't ever wish you didn't have to do all these therapies (because I DO wish things were easier for you) I can promise this . . . no matter how much "work" is needed or how much time lapses in between these great smilestones, I'm there. With you. Working with you, smiling with you, giggling with you. Watching you in utter and complete amazement, and screaming with absolute glee when the smilestones happen. And, as one of my friends reminded me, while speed and agility may not come easily to you . . . some things do.

Like sweetness
Style
Spirit
and magical magical rockstar'ishness.

That's you.

Magical rockstar.

Happy first day of school my sweet girl, and here's to new adventures, new smilestones (and the tiny inchstones that get us there), and so so much more.

Your ever lovin' mama.

Monday, November 29, 2010

In a funk . . .

I feel like most of the blogs I read, and everyone I know on facebook, has been listing the things they are most thankful for this month, in the spirit of the holiday. I didn’t. I don’t know why, but those facebook status updates irked me this year. I’m all about being ‘thankful’ but I find it odd to do it on such a public forum. Like, can’t people just be silently grateful for what they have? I feel like too many of those status updates are really just people’s way of shouting to the world all the wonderful things in their life . . . e.g., “My husband is so freaking awesome; my life is so awesome; etc.” I posted once about being thankful that my blackberry allowed me to work remotely and travel to see family, so I guess I’m guilty too, but I got sick of logging into facebook every day only to see/feel like people were just using the month to brag about the awesomeness that is their life.

I may just be being a big fat scrooge. I’m in a funk. I thought about writing a Thanksgiving blog post about how grateful I am that Sam is constantly making progress (she is, lately more than ever) or how grateful I am that we get to start the EI preschool; or how grateful I am that we have such supportive friends and family; how thankful I am that I have a magical little girl (I do!). I AM thankful for all of those things, but truthfully, I wish that my “gratitude” could be a little less delayed-centric, if that makes sense. Somedays (like today) I just wish our world didn’t revolve around measuring and worrying about “progress;” I wish that our circumstances weren’t so that I feel like we are constantly looking for it; that the first things our families tell us or say about Sam is “how far she’s come,” that we didn’t know what a damn EI program is; etc. I mean, yes, I’m grateful we have that program to help her, just like I’m grateful we are able to take her to the Johns Hopkins Hypotonia clinic next week; but frankly, I’m just having the kind of a week where I wish we didn’t have a reason to go.

Sometimes I feel like I just want to live in a bubble of happiness with my family of three . . . where milestones, IFSPs, progress reports, etc. didn’t happen. Because when it is just the three of us? I am so able to focus on the cans. On the right now. But then things happen -- like being around other kids near her age -- or younger -- and as much as I don’t want it to, I feel like I’ve been punched in the gut with reality . . . that things like kneeling, pulling to stand, climbing, etc. are EFFORTLESS to other kids, but not mine. Yes, I’m so very thankful that my child is happy (there’s no doubt she is that), safe, and loved (oh so much); that she’s not on a feeding tube, oxygen, etc. We can always find someone “worse off” to put things in our own lives into perspective, but the truth is, its okay to just be pissed that things aren’t easy sometimes too. And that’s where I am. Pissed off and a little sad that it is my kid that is struggling with the things that come so easily to others. Wishing I could make things easier for her. I’d cut off my left or right leg or any other body part to make it so. That’s how I feel today, and I’m going to let myself feel that way. I’m going to let myself be mad that I did EVERYTHING I was supposed to while pregnant . . . and that my child is still “struggling”. To be pissed and throw the “it’s not fair” card that women can snort cocaine or meth or whatever while pregnant, and yet have “typically developing” kiddos. To just stop and wish for one second that our road were easier. That my sweet Sammie B didn’t have weeks filled with therapies.

I’m very very careful as I write this blog to think about how a 15 year-old or 20 year-old Sammie B might somehow interpret it. I would never ever ever want her to feel like I mourned HER; like I somehow wanted to change her. That’s not it. I don’t mourn her. I adore her with every fiber of my being. But today, today, I am mourning a little bit that she has to do PT, OT, etc., to learn to do the things other kids seemingly learn by osmosis. Today, I’m allowing myself to just sit and think that it just f’in stinks that she’s not running around, effortlessly, like her peers and cousins. I want that for her. For her. Not for me. For her. So badly. So very very badly. And that’s how I feel today.

But tomorrow is a new day. A very big new day. The day that Sammie B goes to “school” for the very first time (her EI preschool). And in line with my family's tradition, I'm planning a small celebration for her first day (cake! presents! and of course, a new outfit). My mama always did that for me, and I'm so excited to do it with my girl! (Even if my cake is from a fancy pants bakery and not homemade :o)).

And this funk? It shall pass. Because I have this sweet face to look at and love and smother with kisses. And that always helps a funk to pass more quickly. Now if only this day would end so I could get home to my sweet girl, her sweet smile and give her a ton of hugs.

Tuesday, November 23, 2010

Wall Standing Rockstar

While I was laying in bed sickie sick yesterday, Sammie B had THREE therapy appointments (I know, what am I whining about, right?! This kid works so stinking hard!). Because of the holiday, we moved appointments around this week so she could still get as much therapy in as possible . . . resulting in a three appointment day. And, despite therapy overload, sweet Sammie B had a rockstar day in therapies! Here's my favorite picture from the day:



Wallstanding! Sammie B can't quite stand by herself yet -- she just doesn't have the balance -- BUT she's now standing with just the wall behind her for support. And as you can tell from the picture, she's not really using the wall to support her weight, its just sort of there for balance. And, look at her knees! Not locked! Weight supported through her entire foot! This is good good posture from my sweet girl! Friends see these pictures and say she's "so close" to walking . . . and sometimes all I see is how far away it still seems (and I feel guilty and hate myself for always being such a negative nelly), but then a picture like this reminds me . . . the progress hasn't stopped. Not at all. Each day (each moment really) we are moving ahead, inchstones at a time. I see this picture and I can tell how FAR she's come. . . which accomodative behaviors she no longer needs to stand (like locked knees) and just what a rockstar she really is.

So, here's to Sammie B and her inchstones. Slow and steady.

And a quote I saw on a friend's facebook status today that I just love love love:

"Toughness is in the soul and spirit, not in muscles."-Alex Karras

I've got a tough little girl, but you already knew that.

Sickie Sick

I hate being sick. I hate admitting defeat, retreating to bed, and missing out on life. It probably sounds silly, but I really really hate being in bed and feeling like "life" is going on without me. I also have a hard time admitting when I need to stop and rest to get better. But this last week has been a bear. I got a cold. It kept getting worse, until I had (have) no voice and an atrocious cough.

B and I had a date night planned Saturday, and though I KNEW I should have cancelled and B kept saying "we can stay home if you want," I didn't. Because I hate admitting defeat. I hate disappointing and I knew B would be disappointed if I cancelled. This was his belated birthday dinner AND our much much loved nanny was going to care for Sam -- its so rare that we have weekend childcare that we love and adore (and someone who I know gets Sam's "essence" as I like to say . . . someone that just "gets" her; knows her signs; her smiles; her laughs; HER), so I went. I probably wasn't much fun. I couldn't talk a lot, but I tried. I really, really tried to rally.

I finally took myself to the doctor Sunday (I can't deal with making appointments, etc. and THOUGHT I'd be back to business and back at work on Monday so I didn't want to wait) and he gave me an antibiotic but said he thought it was a virus so all I could really do was go to bed and sleep it off. And, so now it's Tuesday, and I still feel crappy. I worked from bed yesterday, and plan to today as well. But it stinks.

I don't like handing Sammie B off to our nanny in the morning and going back to bed, hearing them playing downstairs. I don't like sitting in my jammies all day. I just hate feeling like I'm on "pause" while the rest of the world is not. Melodramatic, maybe, but I've always been this way. I'm also very bad at asking for help, and B isn't always the best at just giving it without being asked (this is part of our venus/mars differences, I'm convinced; we've (I've) been working a lot lately on saying what I mean . . . i.e. no subtle hints when I want him to do things and then being mad that he doesn't, but really, just saying, "can you please do x?") and so being sick magnifies that a ton. I really just want someone to say, "go to bed, I've got everything else." And, I want to be better in like 5 seconds flat, but so far, it hasn't happened.

I also have been keeping my fingers crossed Sam doesn't get sick, but she didn't sleep well last night (nor did I as a consequence) so here's to hoping that was just a fluke. Being sick as a mom REALLY sucks because its hard not to think about how crappy you feel and how horrid it will be if your little one catches it and feels just as crappy. I always feel like I CAN'T miss work when I'm sick because chances are, I'll need (and want!) to stay home with sweet girl when she catches whatever I've had. So fingers crossed for a happy, healthy Turkey Day for this little family.

Monday, November 22, 2010

Mischief!

Yesterday, Sammie B discovered a new form of mobility -- the butt scootch. There's a bunch of debate amongst PTs about whether you should encourage or discourage these sorts of non-traditional (i.e. not four-point crawling) forms of mobility, but we are in the "whatever works for her" camp, and well, we'll take it. With huge smiles.

She's been rolling and sort of backward army crawling for awhile, but adding this to her mobility options is pretty cool. Her OT happened to be there when she started doing it and is thrilled. She said this is so good for Sam's confidence, shows that she's motivated to move and motor plan, and will strengthen her arms and body.

The best part is how proud my sweet girl is of herself. The second I suggest doing something (like a diaper change) that she doesn't want to do, she smiles and scootches away. I think she's hilarious.

Last night, I sat in her room and watched her scootch over to her dresser, open the drawer, and take every single thing out. I sent the picture to the grandparents with the caption "mischief," and I think there were a few wet eyes amongst us. See, since Sam has been largely non-mobile, she hasn't had the same opportunities to "get into stuff" that mobile kids have. One of us is almost always right there with her. So, watching her just taking each thing out of her drawer, putting it into her pile, and smiling -- getting into stuff -- made my heart just SOAR.

Of course, being the sweet bug that she is, after she'd made a big mess, she put everything back herself. She truly is magic.

Wednesday, November 17, 2010

Picture Carnival!

Ellen, over at Love That Max, is hosting a "Picture Carnival" today and asking bloggers to post their favorite picture of their kiddo and explain why it is their favorite. I wanted to participate, but truly, I've agonized over what my favorite picture of Sammie B is . . . there are so many fabulous ones that capture her fabulous fabulous smile and magical personality, so choosing one was quite hard. Do I pick one of her rockstar PT moments that made me so proud? One of her tender loving sweet hugs? One of her cuddled up on me or next to me, sound asleep? One of her watching the animals at Sea World on her birthday completely and totally captivated by them?

So hard to choose . . . but I did, and here it is:



Sam's First Christmas, 2008

I love this picture because I think it was one of the first we captured of Sam and I just gazing lovingly at each other and smiling. And it captures that sort of oogly googly love shared between mama and child. I LOVE this picture. My dreams for her on that day were so so big. My heart was so full of love. My first Christmas as a mama. Her mama. My first time being "Santa." What a day. What a wonderful wonderful day.

And if you look closely, you'll see Sammie B has a HUGE band-aid on her tiny tiny finger. Because that morning, when clipping her nails (a scary task for new mamas), I clipped too far down and it bled. She cried. I cried even more. I felt like such an imperfect mother! But we wrapped her wound in a band-aid and went on with our Christmas.

In looking at this picture and thinking back to this day, I also realize how far we've all come as a family . . . and reflect on our journey since this day. This picture was taken before I even knew what a pedicatric PT did, or what "gross motor delays" really even meant, and certainly before we knew we'd go through an eye surgery, so many specialists appointments, so many weekly therapy appointments, and the worry and wonder we've had.

On the day this picture was taken, we'd known Sammie B for exactly 3 months--we were just rookie parents. Still learning just who our little girl was. What her cries meant. What would make her smile and laugh. It seems so long ago. Because now, we just know her. So very very well. And it feels so fabulous. And, though I probably couldn't have though it possible on that day . . . today my heart is even more full of love for her. My dreams for her are just as big as they were that day. That won't ever change. And I've learned so very much about myself as a parent and person since that day. I've learned that I have the ability to love someone so much it hurts. For my heart to rise and fall with that other little being. To worry so intensely I think my heart will explode. To hear the sound of another little creature's giggle and have my heart just soar with happiness. To have her reach for me, and to feel like I'm literally going to melt into a puddle on the floor. That's what she does to me.

I've also learned that I'm more patient than I ever knew possible, and that my only job as a parent is to do everything possible to enable my little girl to be her best self . . . and that only she can define that "best self" for me. That I can't write her story; only she can, but that I'm so very very lucky to be a part of that story. That magical story.

Her magical smile -- captured on this day, is still just as magical, and my love for her (and hers for me!) is just as oogly googly warm and fuzzy as it was that day.

And, I'm still an imperfect mother (Sam's eaten more chicken nuggets for dinner than I care to admit), but I now know "perfect" mother isn't the goal. I wake up everyday and strive to be the best mother I can be, hoping beyond hope that I while I may never be a perfect mother, that I can be the mother THIS little girl needs, and to enable her to be the best Sammie B she can be.

I love her. Oogly Googly Words Can't Even Describe It Kind of Love Her.

Thursday, November 11, 2010

Happy Birthday Maddie!


Had she not been taken from this world way too soon, Madeline Alice Spohr would be three years old today. Please consider donating to Friends of Maddie in her honor. Though our stay in the NICU was a short one (compared to many), it was an experience that changed me forever. I will never forget the feeling of leaving the hospital without Sammie B . . . we are so greatful that she did eventually get to come home to us, and can think of no better cause than supporting families of NICU babies.

For Madeline.

Sunday, November 7, 2010

Perspective



My anxiety is at its worst lately. Our trip to Johns Hopkins is now just about a month away, and I find myself calm one minute, and panicking the next. From smiles to heart-pounding fear in moments. Fear that we'll walk away from the trip with an answer we don't want. But, I keep on keepin' on, and somehow, we'll get through it. And sweet Bean does (and will) keep me smiling.

I realize I don't always write about the tiny everyday kind of inchstones. The progress. I tend to come here . . . to my outlet . . . my blog, when I'm feeling tortured and scared and worried, and so the smilestones get left off. I think sometimes I'm afraid I'll jinx myself or jinx us. With delayed kids, "firsts" are so very very exciting, but sometimes, there's weeks or months in b/t the first and a second, so its scary. I worry that each "first" is a fluke, and that I'll somehow jinx myself if I shout it to the world. Silly.

Anyway, a few things that have given me some perspective this week. Friday, we went to Sam's new pre-school (a center-based developmental program she'll attend 3 mornings a week for 3 hours) to meet her new teacher. It went REALLY well. Really well. She warmed up to her teacher within just a short period, and by the time we left, they were quietly playing with a shape sorter together. We are so very excited for her to start this program, and to (hopefully) watch her just flourish. Before the meeting, I was going through the evaluations of the last few months, gathering the paperwork they needed, and I found her first speech evaluation. From May -- just FIVE months ago -- where we reported she had a "few words" (I think we counted five then, being generous) and two signs. TWO. Now? About thirty signs. And, a "few" more words. The words are coming slowly, but they are coming. This week, we've added some verbal approximations for "more," ("muh") "no," ("no") and "me" ("me"). It is hard sometimes to see the progress when we are with her every day, often thinking about (and unfortunately, focusing on) the therapies and how far we have to go, rather than how far we've come, but looking at reports from five months ago? So encouraging.

Gross motor still is her worst area, and the area that we truly are just inching along on. And the damn evaluations won't "advance" her developmental age there unless she's gaining skills that are measured on the evaluation. Like crawling (army crawling doesn't even count), cruising, etc., so those reports make me cry. Every.single.time. And scare me. Like heart-pounding panic scare me. But, when I look at her, I KNOW the progress is there. The inchstone progress.

The PT that will be in her preschool classroom was also at the meeting Friday, and she pointed out so many wonderful things Sam IS doing, and was encouraging about the rest too . . . we really are excited for people with a fresh perspective to be working with Sam, trying new things, and working collaboratively with us and her other therapists.

No doubt, the progress IS there. She now stands for longer than she previously would, and often with less support than ever before. So slowly slowly, we ARE moving forward, even if on some days it feels like we are at a standstill. Even if those evaluations don't measure the inchstones as "progress." (And this is where I remind myself of one of my promises to Sammie B -- to look at her, not the evaluations. To look at what SHE'S doing.).

Today, I was flipping through the pictures on my blackberry from the last week (I'm sharing the highlights below), and I was just awe struck by my sweet girl. The things she's doing today that she couldn't have a couple months ago. And then? Then I'm sure there's progress. So, here's to the inchstones I have to periodically remind myself of, and here's to making it through the next month before our appointment at Hopkins, and the wait thereafter for any test results, and here's to making it through ALL of that with optimism (something that doesn't come easily to me), perspective, and some smiles along the way.

This little girl amazes me. Every single day. Now, if only I can do a little better at doing what my sweet friend H has reminded me to do . . . living in the right now. Not the yesterdays or the tomorrows. The right now. The RIGHT NOW that makes me smile so much.







(And let me just say, in that standing in the high chair picture, we put her like that to clean her up, and B was standing RIGHT in front of her; no need to worry! But we have been standing her like that and giving her rides around the house, which she enjoys immensely!)