Wednesday, February 23, 2011

Mama On The Road

I've said it before, but traveling is definitely one of my least favorite parts of my job. I hate that my work not only takes me away from my family during the regular work-week (and some weekends) but also sometimes for days at a time. Right now I'm at a required four-day training (that doesn't count for my billable hour requirement, but that's another post) AND I have a TON of "real" work to do, including a draft expert report due Friday. So basically, I'm holed up in my room working non-stop every second that I'm not at the actual training, nevermind the fact that we are supposed to be doing tons of training prep work. I'm an unhappy camper. Although I generally love my firm and have sang its praises in terms of being 'BigLaw' but still supporting me in my alternative schedule, these are the times I secretly want to get my resume ready for recruiters (as if I have time to do that). This training is supposed to be a top priority for my firm and the partners are supposed to respect it by not giving associates so much work that they can't focus on the training. So, I'm annoyed, but at the same time, I understand that the partner I'm working with can't change a court-imposed deadline just because the firm's annual associate training is happening. Still though, it sucks.

Anyway, when I travel for work, unlike many of my single or childless colleagues, I rarely get out and see the cities I'm in. I always figure, if I have to be away from Sammie B and Mr. B, I might as well "make it count" and just work, work, work. That way, I can take a breather when I'm home, and have the opportunity to do what I want to do most -- hang with my two favorite people. So, I work much, sleep little, and just bide my time till I get to go home to them! (As an upside though, remember Joe? Well, his mom and I are meeting for dinner, along with another DD mama so I'm going to venture out one time on this little business trip!) I'm super excited to see Lia again and to meet a new friend as well!

In the meantime, in between work work and more work, I keep going through the pictures of my sweet girl in my phone . . . thinking about her magical smile, her magical personality, and all the fabulous things she is doing these days. And I remind myself -- it is the "minute simple moments" (as my dear friend H says) -- the everyday moments - that define our Sammie B and our family. Not the evaluations or the anger or the worry. Those are just distractions. The real stuff is in the everyday moments of reading stories, taking naps, smiling, giggling, hugging and whispering new words. The fabulous everyday moments.

I literally ache for her when I'm away from her -- which is probably the part of my journey in motherhood that has surprised me the most -- that it is possible to love someone so much that your heart HURTS when you are away from them.

After my last post about how I've been feeling so angry, I finally poured my heart out to B a little too. Said the things I haven't been able to say out loud. That I'm mad. That I sobbed on his shoulder. He let me. And I told him . . . that no matter how angry I am (at the universe), I look at my sweet girl, and the anger dissipates. And that there's no one else in the world other than him that I'd rather be on this journey with. That our little family of three is what makes me feel complete and whole.

Just as Max's mom promised it would, Sammie B's magical little smile really does heal me, every single day.

Sweet Bee . . . you heal me. You are magic. Magically wonderfully amazingly you.

And now for some pictures of the magical little Bee, and the everyday moments that melt me.

These moments are what I live for.

Thursday, February 17, 2011

Unloading It

When I go for awhile with no real post, or few with any major substance, it usually means that I have so much swimming in my head that I'm overwhelmed by the mere thought of writing it out. But, in those times, what I probably NEED to do most for my own mental health is the very thing I'm struggling to do . . . write it out, unload, get it out. So, since this is -- no doubt -- one of those times, here goes.

- Evaluations/Doctor's Appointments

B and I agree . . . every time we start to feel comfortable in our place of acceptance, on our "new normal," we have some other doctors appointment or evaluation to think about and to cause us anxiety. This month, it was our bi-annual speech assessment/progress report, a physiatrist appointment, and our first appointment with a developmental pediatrician, who we are seeing to gear up for Sam's transition from the Regional Center to the school district for services when she turns three (and who we are also required to have an evaluation from every 6 months as part of Sam's center-based therapy/preschool program). I can't help it. No matter how "good" or "right" things feel, leading up to these types of appointments, I struggle. A lot. I've likened it to being pricked with something pokey over and over just when I've gotten comfortable. And it sucks. Big time. Evaluations - they suck most of all.

When I start thinking about the suckiness of it all, I get mad. So very very angry. I try to fight it, I try to stuff it, but I end up having some pretty nasty internal dialogue. I just feel angry that things are so hard for MY girl. Angry that the most know-it-all-smuggest of our acquaintances seem to be living life with all just falling so smoothly into place. Like they have the marriage, the parenting, the working . . . all of it just figured out. So then I start thinking things like, "Oh, you think you've got it all figured out? Well, I DARE you to sit in a tiny room for two hours having your child 'evaluated' and not fall into a weeping mess on the floor or throw up. Dare you." "I dare you to go through evaluation after evaluation and NOT want to just run home, crawl in bed, under the covers with your little family and just escape from all the madness. To not want to just run away (with your family) to a deserted island free from therapies, evaluations, etc. to just 'be.'" OR "oh so you've got balance, well, try eight therapy appointments a week . . . balance that b*$%ch!" I wish I was making that last one up, but I'm not. I'm not proud of these thoughts. And, I know I need to move past them, but I think owning them (here I am, owning them!) may be the only way to start to get past them.

The thing is . . . the evaluations have gone well as of late. Her speech therapy report said (again, same as six months ago) that her receptive language is age-appropriate and she's made incredible gains in expressive language as well. She says new words all the time that make me and B go "did she just say ___?" It's really quite amazing. Articulation (that's speech, not language) needs work, which we are all working on.

And the developmental pediatrician's evaluation also went well. When we walked in, I actually thought "ohmygod this is going to be a disaster." We walked into a tiny room where Sam had never been before (with an evaluator she'd never met), they plopped her in a chair, put some blocks in front of her, and told her to stack them. She promptly picked up two blocks, handed them to me, and said, "Mama!" She wanted me to stack them. That's pretty classically Sammie B if you know her. Pretty stinking cute, but not what the evaluators were looking for ;o)

Anyway, though, she warmed up. Quickly. And frankly, wowed them (and me) with what she knew. Every six months Sam goes through ANOTHER evaluation -- with her OT --for her EI services. The assessment tool they use is the Bayley Developmental Assessment, and she always scores with a slight cognitive delay, even though every doctor we've seen has said "cognitively, she's age-appropriate." So, even though they've told us that, it has been worrisome. I've thought she "gets" everything. But I wondered if I was just in denial, or if the doctors were wrong b/c admittedly, they made those assessments from short visits with her, not true developmental evaluations. But, the thing with the Bayley Assessment is that the supposed "cognitive" tests all involve motor skills or vision issues - like putting together puzzles, shape sorters, etc. And, I was convinced that that was why Sam scored how she did, and that the scores weren't truly reflective of her cognitive abilities. As I've mentioned before, when I ask Sam where each piece to one of her puzzles goes or where each shape goes in a shape sorter, she can always show ME where it goes, but she can't always put the piece where it goes herself . . . her clumsy little hands can't do it. That's a part of this journey that just stinks. To know she knows absolutely what to do, but her clumsy little hands (or vision? both?) keeps her from being able to (yet). It just stinks.

Well, the developmental pediatrician first assured me that I was right on that front - the Bayley is notoriously a test that fails to account for (or remove from the equation) motor limitations when assessing cognitive abilities. He used a different tool - one designed more for kids like Sam who have motor skills issues, and guess what? We don't have the actual scores yet, but he said she will likely score slightly ahead of her age on cognitive abilities. Ahead. I'll take it.

She is, of course, severely delayed in the motor skills department. While this isn't news to us, it still "stings." I had a long conversation with the developmental pediatrician about what this means (his approach is one of 'how do we best get this child into the educational environment she'll need to succeed?' sort of thinking) . . . and its going to be a challenge. A challenge to make sure that Sam's "cant's" (or not yets!) don't inhibit her "cans." To make sure she's not underestimated mentally because of her physical limitations. To have her in a place where her educators realize that if her processing time seems slower, it is not because she doesn't "get" it, it is because she's using so much of her brain power/energy to do the things the rest of us take for granted . . . like holding our bodies steady in space, focusing our eyes, etc. So there you have it. To the people I've felt like have underestimated her in the past - damn you. To the people that likely will in the future - damn you too. And damn it that my sweet bean has to work so stinking hard to do what others take for granted. So there you have it. Right now, I'm just a little mad at the universe.

The developmental pediatrician agreed with me . . . Sammie B is both a complicated and magical little girl. Our complicated and magical little girl.

- And so then there's this . . . Hopkins Test Results

Remember how the doctor at Hopkins was oh-so-confident that none of the tests would show anything? I walked away so sure he'd be right. But he wasn't. One small group of tests came back "inconclusive," so we have to have those re-done. They were some of the metabolic ones, but she had the same tests at 18 months old and they were normal. So, the Hopkins doctor thinks the "inconclusive" ones this time were probably just a fluke - a product of her diet being a little "off" while we were traveling (no doubt it was . . . she's such a picky eater and with the gluten-free thing, its pretty much all-cookies-all-day when we travel).

And, Sammie B has a chromosomal abnormality. Two of them. Each of which is so small that it is on the border of what would even be reported as an "abnormality," and one that is on a spot on her chromosome (not telling you which one! the geneticist specifically told me that because the variation is so small, nothing on google would possibly be applicable. So there.) where there aren't even any genes. And there are no other reported cases of either abnormality, so really, no clue what they mean. The genetic counselor explained that the testing we did on Sam is so new, and so very very detailed, that it could capture an "abnormality" on unaffected people. Like if you go digging enough, you could find something "abnormal" on anyone. And, because the testing is so detailed and new, doctors don't always even know what the abnormalities found actually mean. These abnormalities could be what is causing Sam's delays, but probably not. They could just be flukes. Actually, the counselor said she's 99% sure the first abnormality is not what's causing anything (since there are no genes on that spot of the chromosome anyway), and nearly that sure on the other one, but wants to see mine and B's results first.

Surprisingly, when we got the genetic results, I felt so at peace. Like, okay, so that's how she was made. No biggie, and not life-threatening.

So, plan of action: we (me and B) have genetic testing done and sent to Hopkins. If either of us has the same abnormality(ies), we chalk it up to a fluke thing passed down and assume its NOT causing her delays. If we don't, then we just move ahead . . . we still won't know if that is what is causing her delays and it doesn't matter. AFTER we've gotten those results, we will also re-do the metabolic tests on Sam with a lab here. So, a little disappointing. Disappointing that the visit to Hopkins has, at least for now, created more questions than answers. More worry. More stress. When I spoke with them regarding the results (and after googling myself into a frenzy), I asked them if it changed the prognosis. They were so positive and optimistic about Sam's future when we were there . . . so I said, "if either of these tests turns out to mean something, does that change the prognosis?" And she said, unequivocally, "no."

So, I'm not really angry about the Hopkins tests. Angry that we have to re-do some (and have Sammie B poked again). Angry that this has to be part of her story, but otherwise, nothing changes. We just keep on keeping on. I guess part of me, if this is a chromosomal thing(which really, we may never know) feels a little angry with myself that I've wasted energy wondering if I did something while I was pregnant that caused Sam's delays, or wondering if I had done something, anything, differently, if things would be easier for her. Angry that some people in our lives fueled those worries in me unnecessarily. Everyone is a damn expert, right?! Damn that too!

- Work

Work is busy, and that doesn't change just b/c I'm in a difficult spot personally. It is hard to work 15 hour days (which is literally what would be required if I wanted to get it all done) when my heart feels so heavy, but I'm doing my best. I like the case I'm working on, and the people I'm working with, so like with other things, I'm just going to keep on keeping on. But, I do (often) wish I could just leave work in the middle of the day, go home, grab Sammie B and Mr. B and crawl into bed and hide from the world.

- Marriage is hard.

Have you ever read the divorce statistics? Dismal, right? How about the divorce statistics for parents of special needs kids? Staggering. I want B and I to beat those odds more than anything else in the world, but that doesn't mean it is going to be easy. Life is not easy. And I'm angry about that too.

-Our New Nephew!

My brother and his wife had a baby two weeks ago - Christian. He's worthy of his own post, but that will have to wait. I haven't met him yet, but he's super super cute, and I already love him. Unfortunately, he hasn't gotten to go home yet :o( and my brother and his wife are on the same NICU roller coaster ride we were on ourselves two years ago. It brings back so many memories -- long, tense days, intense ups and downs. Intense worry. Feeling like those damn doctors and nurses are holding your baby hostage . . . . and just wanting to go HOME. I remember coming home each night and sitting in the rocking chair in Sammie B's room and just sobbing. Wanting my little girl to be in my arms, in that chair, in HER room, more than anything. So, keep that little man in your thoughts, and hope for some good news soon. We need good news around here. And my mom - my mom deserves some good news. It's been an intense couple of weeks for her.

* * *

I guess more than anything, even more than the anger, . . . I'm just tired. Ahead, Behind, Delayed, Advanced. None of it really matters. Happy, safe and loved, that is what matters. Sammie B is so so happy. So so loved. But, I just feel like we deserve a break. A break from all the worrying, a break from having to work oh so hard for things. That's the part that gets me down. Wishing there was a reprieve from the therapies, the evaluating, the assessing. The worrying.

Unloaded. Now, moving on . . .

Thursday, February 3, 2011

Photo Shoot Thursday

My little ham. My little poser. My little WALL STANDER! (That's PT lingo for those of you not in the know).

My magical little girl (who happens to be kind of dressed like a boy today, but still looks magic and delicious).

And a quote that happened to be on the back of a business card I was given today. A quote I needed to read and think about.

"Success is the sum of small efforts, repeated day after day." - Robert Collier

I like that.

Wednesday, February 2, 2011

Mama Monday

When Sam first started physical and occupational therapy, we scheduled them so that I could go to one appointment of each every week. As we added things to her life (hippotherapy, her preschool program) that became harder and harder. Her hippotherapy is not close by, so we scheduled that on my day off work so that I could take her, and we had to rearrange the other appointments. As a result, I haven't gotten to go to her PT/OT appointments in quite awhile. It is a bummer, and it KILLS me not to be there with her, but it is our life (if I had my way, I'd be at every appointment, but there's only one of me and I HAVE to work to keep a roof over our heads!).

Anyway, Monday, our nanny took the day off, so I spent the entire day with Sammie B. She has THREE appointments on Mondays now, so I got to go to all of them. And, she was a rockstar at all 3. It was good for me . . . to see the progress. To see that we are now working on things in therapy that wouldn't have even been a possibility six months ago. To see how much more she enjoys therapy now that she's stronger, more confident (not a single tear in ANY of the appointments; PT used to be nearly all tears, which just broke my heart every single time).

It was a WONDERFUL day of love and smiles and LOTS and LOTS of hard work, and it was just what I needed.

Exhibits A, B, C, and D of things that were either impossible or much much more difficult six months ago . . .

Seriously, Sammie B, I don't know any little girl who works as hard as you. And does it with a rockstar smile. You light up my world. Every second of every day.

I often think about my "wishes" for Sammie B (these are like my prayers, but in a more secular sense I suppose . . . ). There was a time when my wishes were just "please please let her be able to sit independently." Then we got there. Then, I just wanted her to have SOME form of mobility. Then we got there (hello ROLL! hello butt scootch!). I wanted MORE words. And they came. Thinking of the wishes I've had for her that have now come true feels so so good. It is a good reminder that the progress and the inchstones are happening. Every single day. But, I hate that when I think of those things, I instantly start thinking about my next "wishes." Because, the truth is, I still have lots of worries and lots of wishes (one of my greatest ones continues to be her balance - on top of her low-tone, Sammie B has terrible balance, and I worry that this is her greatest obstacle to standing independently and walking) . . . but I keep reminding myself . . . "I wished for X, and then we got there."

I hate that I feel like I'm constantly wishing for "more," like what Sammie B is doing RIGHT now isn't enough. I fear that she could read this one day and feel like I was never satisfied with her IN THE MOMENT. I'm not even sure how to articulate this fear. It is more of that wanting-to-be-happy-and-content-RIGHT-NOW feeling, to not feel like I'm always wishing and hoping for the next smilestone.

The truth is, my sweet girl, you are enough. You are more than enough. You are more love, more smiles, more light, more joy, more happiness, more magic than I ever ever ever could have imagined. Mama just worries. I never want you to struggle. I want you to have a life where things come easily to you. But, I know that "your life, your path" isn't of my choosing. You are writing an amazing story, and it is yours to write. So while it may not be my strong suit, I am really going to try to sit back and let you write it. I can't wait to see where you will take us, and I promise to always note how far we've come. Because my girl, you are doing so so well. So well. You are a magical little girl. I'm lucky to be your mama.