And Sometimes, I Just Need To Write . . .

I haven't written because I've been . . . sort of a mess of emotions these days. Sam's speech, as I said before, has just taken off. New words daily. And, she's willing to repeat everything we ask her to say (and, um, things we don't ask her too . . . like "damn it," which she said to her nanny; when her nanny asked "where did you hear that?," she said, "mama."). I'm so so proud of her speech, and thrilled with the doors it is opening for us. Sometimes, it still takes some encouragement for her to verbalize, but it is so much fun to come home from work and ask her about her day. Yesterday, she went to the zoo with her nanny, and when I asked her what she did, she said "doo." And, I said, "what did you see?," and she said "Animals." I love it. Love it. She's telling us what she wants to do (and doesn't want to do) and clearly showing she has a mind of her own. And this is so so encouraging and exciting. So exciting. I love Sammie B's voice.

But, on the motor skills front, I've been discouraged. I know peaks and plateaus are just part of this journey, and I wish the plateaus didn't worry me so. But they do. The thing is, we aren't even really AT a plateau . . . new things ARE happening, they are just tiny, tiny inchstones. Lots more scootching around on the floor; she's figured out how to turn herself in any direction to get herself aimed at whatever she wants to scootch toward, etc. Her motivation to move IS THERE. All very encouraging, but yet, I find myself feeling discouraged. Discouraged that she has to work so stinking hard for these inchstones. Discouraged that we've been at this therapy business for nearly two years, and that independent walking still feels so far away. Discouraged, defeated, scared. And, I hate it. I hate that I bottle this up, afraid to admit that I feel "discouraged." That I don't want to utter THAT word to anyone. Not B. Not my mom. Not any of the people I usually disclose my inner most feelings to. This feeling -- discouraged -- hits me in the hardest ways (when it hits) and makes me withdraw from everything, even my little blog world.

And, when I think of my blog, and the words I type here, I can't help but envision a twenty or thirty-year old Sammie B reading it, and I wonder what she would think. I would never, ever, ever want her to feel that I was discouraged by her. That her progress wasn't enough for me. She works harder than any toddler should ever ever have to . . . in her SEVEN therapy appointments a week. She amazes me and inspires me on a daily basis. Nothing about HER discourages me . . . it is just THIS. This experience. The appointments. The therapies. The hard work. Her trying so stinking hard to stand, to take steps, and the fact that it is still so hard. I hate it. And, I'd gladly give up my own legs if it meant things could come easily to her.

So, that's where I've been. Hiding. Wallowing in these feelings, and hating them.

And, then there's PT. Sammie B has hit a "no" phase in PT. She doesn't want to do it, and she makes it known. When the PT tries to get her to do anything, she says "no," and flatly refuses, making spaghetti legs so that we can't even make her do anything. I KNOW this is "typical" two-year old behavior, and trust me, that THRILLS me. But, at the same time, I've been at a loss, the PT has been at a loss (which in itself is a little discouraging . . . she's a pediatric PT for goodness sake; she should be able to handle two-year old defiance). Monday, I suggested meeting for PT at the park - the same park we'd gone to on Saturday where Sammie B had a blast, "walked" all over the structure with our assistance, and kept begging for more. I thought it would be a perfect way to shake up the PT routine. But, no. Lots of "no" and lots of spaghetti legs. I left that session and went home feeling . . . defeated. And hating it.

I posted on my Delayed Darlings board and got TONS of great feedback and encouragement. Ideas. (Frankly, ideas the PT should be coming up with on her own). I'm going to sit down and write a long email to the PT with my ideas . . . that it is so important that WE never act discouraged or defeated. That "no" and spaghetti legs doesn't draw the "here we go again" look from the PT (which it has, and that makes me a bit angry). That we start trying a system of rewards for hard work, bribery, giving Sam more choices, etc. Things that I realized, our other therapists already do. And, Sam does better with those other therapists. [Now, in our PT's defense; Sam also probably does better in OT and ST because those skills are NOT as hard for her and because there's so many different ways to work on some of those skills; whereas the PT skills are a little harder to work on in a variety of ways, if that makes sense].

One mom on my board said that her developmental pediatrician said for kids with ambulatory delays, giving them a CHOICE in activities becomes even more important because their choices are otherwise naturally limited by their (im)mobility. Makes sense, right?! So, we have to work harder to let Sammie B make choices in PT. To feel rewarded when she works hard. Because she works so so hard. And, how frustrating it must be to work so hard and have her little body still not working the way she wants it to. No wonder she looks at the PT and squarely says "no."

After that Monday of feeling defeated and worried, I had a fitful night of sleep, and woke up early Tuesday morning, before Sammie B was awake. I went into her room, crawled into her bed, she opened her eyes just long enough to look at me, smile, and grab my arm and snuggle closer and she went back to sleep. I just laid there, watching her sleep, thinking. And in the hour that I laid there, I had some very important "ah hah" moments.



I realized that no matter what sense of panic or urgency I feel about independent walking . . . it won't make it happen any faster. She's going to do things on.her.own.time.

I realized that while she may be refusing to walk assisted in PT, she's still doing it TONS at home, and loving it. Pointing to the ground and saying "me" when I try to carry her. She doesn't want to be carried, she wants to try walking. Making her stuffed animals "walk" and saying "wah-king!" when they do! (Think she has a future as a PT? Maybe!) So, the spaghetti legs in PT are not an indication of this little girl's desires. She's just exerting her strong spirit and strong will -- a strong spirit that will take her so very very far in life. I'm sure of it.



I also realized that PT is only TWO HOURS out of her week that is 168 hours long . . . So what if those two hours aren't the most productive for some period of time while we work through this little "no" phase? That just makes our work with her the REST of the time more important, but it doesn't mean progress stops. Not at all. So with that, some of the "defeated" dissipated.

Sammie B will walk. I believe that with all of my heart. I don't know when. But she will. And in OUR journey to get there, she will continue to inspire and amaze me. But somehow, I have to let go of the urgency, and just "be." Easier said than done.

I also know *why* I'm feeling a lot of this urgency. Sammie B hit two-and-a-half last month. For kids in early intervention, two-and-a-half marks the beginning of the transition to school district services (instead of the EI program). We have our first meeting this month. And, truthfully, I have no idea what to expect. People have such varied experiences. I don't deal well with change (at all) and the prospect that we have to switch ALL of our therapists in six months, and that Sam will leave her safe, wonderful little center-based therapeutic preschool for public special-needs preschool overwhelms me. I hate that this aspect of Early Intervention makes it feel like this ticking clock where we lose the "team" and support network we've formed the last two years. Like a looming deadline where we start anew with new people that don't know our girl like our current people do. I have myself worried about things that I don't even know will happen! That the adult-to-child ratio won't be as low, they will encourage (require?) more adaptive equipment, that we won't get to be as involved in her therapies, etc. I KNOW I have to stop "borrowing" worry from another day, but again, easier said than done.

Two-and-a-half also makes Sam's delays more evident. The gaps between her and her peers - motor-skills-wise - are more obvious. She's not just a "late-walker." She has a mobility disability. I know that's just a label and it means nothing about her magic, but in these moments of discouragement, it stings. It hurts. I want things to be easier. The stories from other parents of other "late-walkers" are less encouraging these days, as most of them are of kids Sam's age now, or younger. So, that feeds the fear, the panic, the worry. (Although, yesterday, I learned that a little girl we know didn't walk until she was 5! I had no idea. And, a little girl who does hippotherapy where Sam does just started walking at 4 and a half! We will get there. And this mama won't give up. Yes, it will take TONS of work to get there, and there will be tears (from both of us!), and "nos" and spaghetti legs, but there's no magic number or age that says "give up.").

I'm just tired of the artificial timelines that make the urgency seem so real. That somehow diminish the progress happening right in front of me.

This journey is not easy. There's the peaks and plateaus; there's the worry and anxiety; there's the nagging feeling like maybe we should be doing more. Sammie B's desire to learn, for instance, is so very very strong. She could sit in her little desk all day, looking at books, letters, numbers, having us help her count, telling her about the alphabet (anytime she sees letters now, she says "ABC!"), etc. And, I love those moments. I love watching her learn. I love teaching my little sponge. And yet, sometimes, I sit there in those wonderful teaching/learning moments, and I think, "okay, we should be doing something more active. We should be standing and walking and working." That the "should be's" take away from those glorious moments stinks.



Life (her life) can't and shouldn't be be all work. I know that. But finding the balance - and feeling comfortable and confident that it is the right balance - is no easy task.

So, there it is. I'm back in the blogging game, and feel much, much lighter having finally owned up to my feelings. Bless you if you read all this!

Absence Makes Your Heart Grow?

It's been quite awhile since I posted. I have posts swirling in my head (like about how we went to see Rachel Coleman of "Baby Signing Times" live and I sobbed through 25% of it . . . yeah . . . you know you are a mom when . . . OR about how (knock on wood) Sammie B is sleeping all night in her own big girl bed these days (despite some regression on my part!)), but I've just been in a fog lately. So, while I wait for the fog to lift (it will, soon, I'm sure), I just wanted to say:

We are here. We are a-okay. We are just working, and playing, and living. And, now I leave you with two of my favorite recent therapy pictures.

Pulling to stand on the famous "Rody":



And, stretching it out . . . .



Stay tuned for more!

From the Mouth of My Babe

In the last 5 months or so, our girl has found.her.voice. In a big way. And we love it. Love it. Just as I'll never wish her still, I'll never wish her quiet. I still find myself surprised when I'm driving and I accelerate fast or (sort of) slam on my breaks (hey, it happens!) and I hear a "WHOAH!" from the back seat. Lately, she's mocked me saying "No Way!" and "Oh My God!" and each time, I practically die inside.

She's also learned quickly that her words can get her exactly.what.she.wants. Like when I tell her "no more" of something and she quietly says, "I wah more pea" (for "I want more please."). And last night, it was "I wah dada pea." We melt. And at night, as I put her to sleep, I usually say, "do you want to hold my hand?" and take one of her hands. Lately, she always says, "TWO!" and reaches for both of my hands. Melt.

It's both fascinating and frustrating to me to learn that Sammie B's low-tone has such an affect on her speech . . . that it affects her ability to motor plan and get the words out, but also to get them out the way she wants them to sound. We've noticed that Sam tends to enunciate each and every syllable of a word (like "BAH-na-na") and to leave consonants off the ends of words too. And I recently learned (from both her PT and ST) that this is likely just because of her low tone. Why you ask? The lower the muscle tone in the trunk, the lower the breath control. You have to have enough muscle tone to (1) hold yourself in an upright position and (2) take in a deep breath and control the release of it in conjunction with the words you are trying to produce. So we keep plugging away at our PT and ST exercises, and just reveling in Sam's new voice.

She's also using her voice to assert herself with some pretty firm "no dudes!" to anything the poor dog tries to do. We were happy when she was doing it to get him to NOT take her food, but now, she may be overusing her authority! Yesterday, B had to tell her, "Dude IS allowed on your bed." She's just asserting pack order, I guess, but the poor dog doesn't know what to do with himself.

Bossing the dog around isn't the only way she's showing she is, after all, two years old. Sweet Sammie B has started getting in trouble! In fact, we've had to cut TWO bathtimes in a row short because she wouldn't listen to me and stop laying down in the water (and giggling like its nobody's business). I struggle not to laugh in those moments as I watch her challenge me, challenge authority, and laugh.

She's showing her stubbornness at therapies too. The PT that does her hippotherapy always tries to get Sam to tell the horse to "go." Lately, all Sam says when asked to tell the horse to go is a very enthusiastic "no." So, last time, the therapist said, "okay, should we just stand here all day?" To which Sammie B replied, with a half-smile and a twinkle in her eye, "yeah!".

Oh my sweet Bean. You make me giggle. Every day.

Friends of ALL Sorts and Sisters

When I'm really in the thick of worrying about Sam, I know it is hard for my friends to know what to say. My closest friends know what I need -- for the most part. I don't want my worries minimized, I don't want them to tell me I shouldn't worry (because most of them are mothers and they know damn well they'd worry too!). I want them to let me worry, but not to pity me. We have a magical little girl that fills our lives (and pretty much EVERYONE who encounters her) with love and joy. Nothing to pity there.

And, I KNOW my close friends have had moments where they felt like they put their foot in their mouths . . . you know like complaining about their kid walking "late" at 18 months or so. But really, that stuff doesn't hurt me. I know that a worry about YOUR kid is the worst worry you could ever have, so I get it. Like, yeah, we could be worse off too, but that doesn't mean I'm not allowed to worry about the stuff WE have. They are, after all, our worries. So, I get it. I get it that sometimes, my friends may have been worried that they couldn't tell me about their own mama worries, though I hope that hasn't happened often.

And, we've had a lot of well-meaning people say things like, "oh you just wait till she starts walking and you'll wish she wasn't." To that I say, "Oh no, as hard as this little girl is working to get there, I will never wish her still. Never." And that is so very true. Likewise, I doubt my friends with non-verbal children would ever wish them quiet.

But then, there's other people in our lives and I swear, I think they just lack empathy or the ability to think about what it would FEEL like to go through what others are going through (whatever it may be). Last weekend, we had a "moment" with a friend that has just left me flabergasted. Utterly and completely flabbergasted. One of our friends said (actually just to B, not to me, but he told me later and was just absolutely stunned, as was I) that her life had gotten so much "harder" now that her 11-month old is crawling and that she was "sort of jealous of [us] that Sam isn't mobile." Now, it is probably a good thing I wasn't there. Out of pure shock, I might have slapped her. But really?

It also makes me realize that this "friend" clearly hasn't listened to us or anything about our journey with Sam's delays over the last two years. Because if she had, if she "got it," even a shred of it, she wouldn't have made such an insensitive, stupid comment.

I wonder if she'd also be jealous of the 7 therapy appointments a week?

Or the number of times we've had to sit while our baby is "evaluated" on what she can and can't do (every six months since she was six months old)?

Or reading the pages-long reports that spend much more time space discussing what she can't yet do than singing the praise about what she can?

That we watch our kid work so freaking hard to do the things that come so easily to other kids? That we look at her WANTING to move toward what she wants, but having her body not work the way her brain wants it to.

The MRI under general anesthesia? (or the 24 hours afterward waiting on the results? when our stomachs churned, our hearts hurt, and our brains kept playing out what-ifs?)

The number of times we've had to hold our sweet girl down so blood could be drawn for testing?

The fact that Sam has seen a neurologist, two geneticists, two opthamolgoists, two developmental optomotrists, a neuro-ophthamologist, a physiatrist, a developmental pediatrician and an orthopedist in her two years of life? All of whom are perplexed by our complicated little girl.

Or the fact that we *got* to spend a ton of money to travel to Baltimore to the Hypotonia Center to see ANOTHER doctor and go through MORE blood work and sit and wonder and worry about the results for months on end?

Or the fact that some of those tests were "inconclusive" so we get to RE-DO them? Have Sam poked again?

Or maybe the fact that our girl will likely be starting a preschool for the disabled in the fall?

Or that sometimes, in spite of all the joy and optimism and hope that our lives are full of, our minds wonder to the worries about when/if the "cant's" will become "cans" and that makes our hearts hurt? Because all we want is for our girl, our sweet girl, to be able to do the things her peers can, without having to work so fucking hard for it.

Or the fact that sometimes, even when we are celebrating how far we've come, we still see the distance in front of us, and it is a tad overwhelming.

As I sit and reflect on that "friendship," I realize that's just not a friend. She doesn't get it. She obviously hasn't even tried. And what I want to do is send her a great big heaping "fuck you," but I won't. This "friend" comes to our lives via B's childhood friend (who she married) and that's a friendship B really values and has a lot of history, so he's asked me not to give her the "fuck you" she deserves, and promised he'll talk to his friend about his wife's lack of sympathy. I HATE sitting on my hands and not saying something to someone who has said something so disgusting. It goes against the core of who I am (which is, as my dad would - and often has - proudly declared, a "don't take shit from anyone" kind of person, exactly like him!). So, instead, I'm writing about it, hoping that the release somehow makes me feel better, because I don't need the negative energy!

So, yeah, I know, sometimes it is hard to know what to say. But it shouldn't be too damn hard to know what not to say, and this "friend" failed miserably. And, I wish it hadn't left ME feeling so crappy. Wishing I hadn't invested as much in that friendship. Wishing we'd just skipped the dinner plans with them Friday evening, so we would have (maybe) been spared that statement.

Thank goodness for my other friends -- the small group of women I think of as "sisters," the ones that love my girl nearly as much as I do (if that's possible), the ones whose hearts soar when they see a great picture of her smile on facebook, see her doing things she couldn't do a month or two ago, or hear her sweet giggle. The friends that, as I like to say (and B likes to laugh at) that just "get my girl's essence." It's a pretty fantastic essence.

Five Years of Us

This weekend (Friday actually) marked five years since B and I said, "I do." Actually, we wrote our own vows, which I wish I had time to hunt down now and weep over, but work is calling. So, I'll keep this short and sweet.

I'm a planner. At my core. I don't like change, and I like to live in a "comfortable" place. B is a dreamer. And in that, he has taught me to dream bigger than I ever would have dared to on my own, and because of that, I've accomplished more than I would have on my own. He's the one who says "everything will be okay," when I can think of a million and one reasons to worry or things that could not go okay. Because my feet are planted firmly on the ground, and he has his head in the clouds, we are a perfect match.

That we compliment each other so well doesn't mean it is always easy (or will ever be easy). We are both strong-willed and fiercely independent. Learning to operate as a team doesn't always come easily for us, but we keep working at it. Life has been intense for us. We both have fairly intense careers, and we've had some intense worry and wonder in our lives, but also a ton of intense joy (in the form of a certain lady in lavender glasses) that we wouldn't trade for ANYTHING in the world. She's pure magic. And she makes our life feel magical too. And so, even when things are hard, there's no one I'd rather share this magical life or magical girl with.

So, here's to the last five years, and to many, many more. With our feet on the ground, our heads in the clouds, and our hearts exploding with love and joy and magic.



[And thanks to Nana, who came to spend the weekend in Cali with Sammie B, B and I got a night away at a spa on our own. We got massages, went out for dinner, laid in bed and watched movies, and only talked about how much we missed that certain-little-someone-in-lavender-glasses about 95% of the time ;o) We even got one blurry picture (blurry is unfortunate since my dress was pretty fab!)]




And, we made it home from our weekend getaway in time for me to snag a two-hour nap with my favorite girl. Glorious. Here's to me and Mr. B and to our fabulous little family. And here's to hoping the gloriousness of the weekend can carry me through what is promised to be a not-so-glorious work week!

Sunday Night Ramblings

I'm having the kind of weekend where work/life balance seems a bit strained. We have expert reports due in my case in two weeks (remember a week ago when I said I had them due in a week? Yep, nope, an extension. Sounds nice in theory, right? EXTRA time to work on them and perfect them . . . but really, all it does is prolong the pain and make for deadlines that never end). Anyway, so I've worked at the dining room table most of the day today while Mr. B and the littlest Bee have played. B is being extra funny, and just cracking Sammie B up. I wish he wouldn't be so stinking funny when I'm stuck at the dining table working! Her giggles are infectious though, and if I have to spend a weekend working, I can't imagine any sound I'd rather have fill the background.

[I'd like to drop a footnote (legal writing much?!) to state that I *know* it is not a competition as to who Sammie B thinks is funnier - me or B - but the thing is, I know I'd lose. So, as I told B tonight, I'm just a teeeeensy bit jealous of the absolute belly busting laughter he gets from our girl. I'm never that funny. But, as he reminded me, I'm the person she wants when she's sad, tired, just waking up, etc. etc. Moral of the story is, I suppose, that our sweet girl is lucky to have the both of us . . . him laugh-out-loud hilarious and me snuggly and comforting mama. Still though? I gotta find something to make her laugh THAT HARD.]

I did steal away for a couple of hours today for a super quick trip to the zoo. Two of my friends and their kids were going, and although I'd initially declined the invite because of work, I decided last night that I was just going to make it work, so I did (sort of, I'll be up till the wee hours of the am, but sometimes, I guess that's how the whole 'balance' thing happens!).

Another friend passed on some amazing words about Sammie B that just resonated with me. I've got a few great phrases to keep in my back pocket, and this is one of them:

"Sammie B is an amazing little girl with her own fate and her own destiny that we can't yet know . . . until she shows us. And she will."

Yes, she will. No doubt.

I'm so lucky to be this little lady's mama. Here's to getting expert reports done, deadlines behind me, and having even more time for snuggles and love. We are headed for trial in just a few short months (another June in Texas is likely), so I know the coming months will be challenging, but we'll make it. We'll make time for the good stuff. We always do. And in the meantime, let the giggles fill the background as I type, type, type. Now, back to it . . .

Inspired

Today, I feel inspired.

By my dear dear friend K, who sent me an email last night that was just.what.I.needed to hear.

By the PT we decided NOT to see just yet, but who still sent me the sweetest email, and the best words of encouragement ever, along with a success story.

By one of our fellow DD friends, who used a gait trainer and walked from the car into his classroom for the first time ever today, and by his mama, who sent the picture to me so I could celebrate with her.

By the most thoughtful handwritten note that I received today (only the most classy of people still do handwritten notes and I dig it).

By my facebook friends, who follow Sam's journey so very closely, pay attention to the bajillions of pictures I post and who cheer her on from near and far. Sammie B has a wide base of support.

But most of all, I feel inspired by this little girl.




Sammie B, you are the hardest working little gal I know. And with your hard-work, loving smile, and heart of gold, you inspire me.

Happiness is elusive. But right now, I am happy. I know myself to be happy.

And, thank you, K for the words to live by my sweet friend.