An (Almost) Wordless Thursday ;)

She is . . .

Determination, perseverance, and grace defined. This little girl knows exactly what she WANTS her body to do, and she is so, so determined. If only we all carried ourselves with the grace that she does.

Oh the Games She Plays!

Sammie B hasn't taken off in her walker just yet (just a few steps here and there with some encouragement and cheering!), but we are spending more and more time in it, just letting her get used to how it feels and what she can do in it, with no pressure yet to walk in it. She has, however, mastered the art of dancing in it.

And, when she really wants to make us giggle, she does this:

Right after she does that, she will then straighten her legs to pop back up and stand up tall, giggle, and say "JUMP!" and then repeat.
She's a funny little lady.

(That USED to be her "I'm done with this thing!" move - she'd do that, then say "hep!" for "help!" but I started some tough love and would say, "I'm not going to help, you can stand up yourself," and indeed she can, and she's turned it into the "jump" game which gets way more laughs and smiles from us than the "I'm done" routine ;o))

Here she goes!

Sunday, March 25 is National Cerebral Palsy Awareness Day.

In our house, we are aware of cerebral palsy every single day, even though its only a tiny part of who our girl is.

Because of cerebral palsy, our girl works harder than any other little girl we know (and often to do things that come so easily to others).

Because of cerebral palsy, B and I have learned what it truly means to be determined . . . to "try very hard" even when things are tough (as we tell our sweet girl, and as she does, again and again).

Because of cerebral palsy, we have learned to celebrate the inchstones, to truly truly appreciate the little things. And to never take anything for granted.

Because of cerebral palsy, we've met some truly amazing people - people that love our girl so very, very much (her therapists, doctors, teachers) - the people that make up "Team Sammie B." The other parents that walk this road with us. People we might not have otherwise met, but without whom, our lives wouldn't be the same.

Because of cerebral palsy, we are aware of how much goes into things that might otherwise seem simple, like pedaling a bike.

Because of cerebral palsy, the day our girl pedaled her trike all by herself, this mama cried. The happiest kind of tears!

And, I can't think of anything better to share with you today than these two amazing videos of my girl doing just that . . . pedaling her trike. She makes me so, so proud. You can watch them here and here!

She's on her way.

To the little girl, who just happens to have cerebral palsy, who made me a mama. Who taught me how to be a mama. Who makes me a better person every.single.day. She is amazing. She is magic.

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.” - Shel Silverstein

Confession

A few days ago, I got the following picture message from Sammie B's nanny:

I immediately smiled and my heart just swelled with joy and pride. Do you see her standing there? Playing with that steering wheel with one hand and just supporting herself with her two little legs and ONE hand/arm? Amazement. Wonder. She makes me so, so proud.

And, just a couple hours later, B sent me this picture message:

I immediately smiled and my heart just swelled with joy and pride. Do you see her standing there? Playing with that toy with one hand and just supporting herself with her two little legs and ONE hand/arm? Amazement. Wonder. She makes me so, so proud.

And just as that joy crept in, I felt sadness. Sadness looking at five-month-old Mia just standing there with ease. A sadness for my other girl. My big girl. I let sadness that these things are SO hard for Sammie B taint a moment that was Mia's. NOTHING physical has "just happened" for my Sammie B. She's worked hard for every single inchstone and I hate that she's had to. Hate it.

And, now, with Mia, we are in uncharted territory. She rolled (both ways) for her first time this month, and with little fanfare. One second she was on her back, and the next, her stomach. One second she was on her stomach, and the next, her back. Sam rolled for the first time at one year old, after six months of physical therapy. Dammit. Why her? Why does it have to be so hard for her? I'd give ANYTHING to make it a bit easier. If love were enough to make it so, this little girl would -- no doubt -- know an easiness she hasn't yet gotten to know.

[The first roll DID, however, happen after we'd asked Sammie B to show Mia how to roll, so we told Sammie B that she taught Mia to roll. I'd turned my back and turned back around and Mia had rolled. I said to Sammie B, "did you help her or did she just do it?" and she said, "She just did it!" and then immediately Sammie B broke into applause saying "Yeah Mia!!!!" It was an exciting family moment, indeed, and I hate that I let any amount of sadness taint it].

I don't want these Mia moments -- moments that are just hers -- to be tainted with sadness that things are so stinking hard for Sam. Tainted by this sort of wistful thinking that I JUST WISH I COULD MAKE THINGS EASIER FOR SAM. That's not fair to Mia, and I KNOW that (as I feel these things, and as I type them, the guilt is so very, very intense).

A very wise friend (you know who you are, Kristen!) told me to try to get rid of the "this should have been easier for Sam" thinking (which will just taint my joy in the simple moments every.single.time) and just really and truly focus on who each girl is. Both are magic. Both are perfection. Both are individuals. Magic, amazing little individuals with their own destinies. Their own stories.

I'm slowly, deliberately working on me. Working on the way I react to these moments. Working on letting myself JUST feel the joy. JUST let these moments be theirs and theirs alone.

See, my pride and joy isn't any less because the smilestones may be different or come at different ages. I will continue to be amazed as I watch each of them, taking nothing for granted (surely, that's a lesson my big girl has taught us well).

But I find myself fearful that soon, Sammie B will realize that things are easier for Mia. I worry how that will make her feel and thinking about that hurts my heart, and then I immediately remind myself to not borrow worries from another day. To prepare the child for the path, because I can't (as much as I might like to) prepare either girl's path for her.

I am a work in progress.

To each of my girls -- you amaze me. I love you JUST AS YOU ARE. You are wonderful and amazing and magic. Just for being you. Your "tada" moments are yours and yours alone, and we will celebrate them all . . . big and small . . . as a family. Every time. You deserve no less, my girls. Be patient with your mama, for I am not perfect. I love you both to the moon and back.

Mia Monkey's Fifth Month

My littlest one is five months old. Well, technically, she's five months and a few days . . . I've had a C-R-A-Z-Y week at work so this is a bit belated. I refuse to do those "at x age, you've hit x, y, z milestones" posts because I hate those posts, but I do like that this little blog is sort of a record of our history as a family (and I haven't done baby books or anything like that) so I will, from time to time, do one of these "Who you were at x age" kind of posts and those milestones might creep in . . .

Okay, so here goes it!

Mia, at five months old, you are an absolute joy. Some time between three and four months old, it was like a light switch - you turned the crank off and the smile on. (I promise not to hold those first three months of non-stop crank and tears against you!). You smile ALL the time. You giggle. You squeal (loud!) if no one is paying attention to you, though you don't demand that much. You are content if someone is just looking at you, talking to you. You smile and you "talk"(and squeal with glee)right back.

I returned to work a few weeks ago, and your dad has been home with you this month. The two of you are having so much fun, and you've quickly turned into a "daddy's girl." (Is this the curse of being a mom to only girls? Always being a wee bit less enchanting, less fun than dada?).

You ADORE your sister. She ADORES you. Every night me, you and your sister take a bath together and you just watch her, mesmerized. She's started helping me clean you, and you are so very, very patient (even when she's um, SCRUBBING, more than gently washing). On the rare night that I just give Sammie B and not you a bath, the whole time we are in there, Sammie B says "Mia Sammie B's BATH!" because she wants YOU in her bath. The parts of the day that used to intimidate me during those first few months when you wanted to be held non-stop (see above!) -- like dinner time -- have gotten easier because you are now content to just sit and watch whatever your sister is doing. I love watching the two of you watch each other.

You also LOVE our dog, Dude. You love his kisses. Whenever he gets within your reach, you reach your hands out to him, and open your mouth ready for his kisses . . . (yep, ew. . . . ). When he's moving around the room, you watch with fascination and joy written all over your face.

We can't decide who you look like (most people say your dada) . . . but your big beautiful eyes just amaze me.

We just took you in the pool at Sammie B's swim lesson for the first time this week, and you just stared around, unsure what to think, but liked it. By the end, you were wiggling and kicking in the water.

You've also been to daycare already, but just for a couple hours . . . as we are trying to get you acclimated to it before your dada has to go back to work. He said he left you smiling and looking around from your new teacher's lap, but he returned to find you crying and sad. Apparently, you'd taken a quick nap and were upset to wake up and find we weren't there. When I got the update from your dada, my heart just crumbled. Being a working mama is never easy. I miss you and Sammie B all day, and each day, I am THRILLED when I get to come home to your sweet faces.

Oh Mia, just five months and you've already just made your mark on us. You are part of us. We are four.

Our Vows

For posterity's sake (and because I'm up late waiting on laundry to finish and doing taxes . . . SOOOO ROMANTIC), I'm going to share the vows B and I said six years ago today. We each wrote our own.

* * *
B (on typed, numbered note cards, no doubt written days or weeks in advance):

On this day, we are joined by our friends and family, and I am filled with eager anticipation to continue our journey together that began some time ago. You have given me the feeling that my life is finally mine and that our life together is ours for the making. For this, I can never express how much I am grateful. You have allowed me to feel things I have never felt, see things in myself that I have never seen, and become the man that I am today. And in return, these promises I make to you:

I promise to never take you for granted and to always be inspired by you.
I promise to learn from you but to teach you things as well.
I promise to make mistakes but I also promise to grow from my mistakes.
You, better than anyone, know that life is not always easy for me. As such, I promise to ask for your guidance and support during times when I feel uncertain and unsteady.
I promise to love and respect you.
I promise to remain faithful and steadfast in my love for you in sickness and in health.
I promise to always be myself and to make you fall in love with me every day.
Lastly, I promise, it will always be you and me against the world, kid (an old favorite saying of ours).

Me (handwritten notecards, thought about for weeks in advance, written the morning of our wedding!):
First, you were my friend. Soon, you were my best friend. I knew from the beginning that there was just something special about you. That something special is the reason why, still today, your smile makes my heart flutter. You can make a bad day better and we help each other be better people. Most of all, we laugh together. B, there is just something so speical about you, so special about us, and today is the best day of my life.

I am so lucky to stand here today and say that I am marrying my best friend, the one I laugh with, live with, and love. I will love you all the days of my life.

I promise to support you in your endeavors, to love you in sickness and in health, in good times and in bad, and above all, to never lose sight of the fact that you are my best friend. And today, my best friend is becoming my husband. I am so, so lucky.

* * *
You know what? I think we should say these vows to each other every year. It's so, so easy to get lost in the everyday living and forget the big promises. Isn't it?

I married my best friend. I am so, so lucky.

Our Sixth Year

Six years ago today, B and I said "I do."

We celebrated our anniversary with a "blast from the past" weekend that I planned well in advance (or on Friday morning). B's parents came to town and hung with the girls (thank you Nana & Papa!) and B and I got a hotel room just blocks from our first So-Cal apartment. We had dinner at our old favorite then saw "The Vow" (which I loved, B not so much; he said Tatum Channing was TERRIBLE in it, I agreed, but thought he was cute enough to be forgiven), and the next morning, we started the day at a spa, had a delicious lunch, and then saw another movie, "The Descendents" (awesome movie, a little too sad for my liking, I left there depressed with my stomach in knots), and then came home to our girls! A wonderful weekend. (Shouldn't EVERY day begin with spa treatments? I think so.).

If you'd told me one year and one day ago that this year, we'd celebrate our anniversary with our TWO children, I'd have told you to GET OUT OF TOWN. But, just one year ago today, we found out little Mia would be joining our family.

What a year it has been. Lots and lots of ups, and frankly, some pretty intense downs too (I haven't always written about those downs, because, well, I guess it isn't always fair to tell what is really B's AND my story here . . . but, there've been downs. Bed rest, high risk pregnancy, newborn babies with reflux and gas . . . all things that are just HARD on a marriage, plain and simple.).

But that's not the point. Yes, we've had our share of "hard" (and I'm hoping year seven brings lots and lots of easy, to us and to our girls), but I digress. The point is . . . we made it. Here we are. Celebrating "six" with our two little girls. WHAT.A.YEAR!

Here's to many, many more.

Six years ago, I said, "I do," and now, I still would.

Possibility

To the big girl that made me a mama, and taught me not to take a single "inchstone" for granted . . . and to the littlest one that is growing up so very fast right before my eyes . . .

Two different journeys.

Two different girls.

Both full of possibility.

My two loves.

Here We Are

So, that neurologist appointment happened. And, honestly, I'm still processing it all. The short version is that we are going to see the movement disorder specialist (the one B and I had both been so impressed by) and that referring us to him was literally the neurologist's first suggestion, and it was the first question on my list for her. It will likely take FOREVER to get an appointment with him, but there's nothing pressing that requires an immediate appointment.

Sammie B was a fabulous little patient, as she always is. The neurologist was super impressed by her tone and strength and how far she's come, but . . . something is still holding her back. Something is still keeping her from walking and standing independently. And, now that she's so much stronger and TRYING to move more (and in fact, as demonstrated by the crazy dance parties at our house lately, she IS moving more, just not so much moving to get places), her "quirky" (for lack of a better word) or "irregular" movements are more apparent. I had worried that this meant she had something that was getting worse (the words that have kept me paralyzed with fear along this journey, words that occasionally pop up in my google searches in the middle of the night when I've been trying to find "it" on my own -- "fatal" or "progressive" or "degenerative") but the neurologist said that's NOT what's going on. Nothing is getting "worse," it's just that as Sam gets stronger and is doing more, we can see new symptoms. Whatever "it" is is evolving, not getting worse. We are seeing more of the "quirky" movements as she's trying to use her muscles to do more (and that alone, the trying to do more, is a good thing, to be sure). AND, the eye movements are likely part of the larger movement disorder.

We have a few things we are going to test for but are waiting until after we see the movement disorder specialist so that we can try to minimize pokes and prods on our sweet girl. The good news is that much of what we are testing for, while not "treatable" or "curable," are very much "manageable," (including with some ridiculously specialized diets) and if any of the tests were positive, that knowledge would help us help her. The neurologist seemed confident that whatever "it" is is nothing fatal, nothing progressive, nothing that will keep our girl from living a long, rich life.

I felt encouraged and optimistic walking out of the appointment and as I recapped it for B, then as everything swam in my head, I couldn't help but fall into the "why her?" thinking. I mean, some of these things we are testing for (I lost my battle with myself and googled) are rare. Like 300 people in the WORLD with these disorders. Really? WHY HER? [Though it is believed they are actually more common than that, but that many people with these things have been incorrectly diagnosed as having cerebral palsy, which could be the case with Sammie B].

Anyway, not a negative appointment at all. Not at all. Nothing we didn't already know. I think part of it is that Sam has these sort of "quirky" movements and all along I've thought it was "something," but tried to tell myself it was the low-tone or just her balance, or whatever, and after talking to the neurologist, I know it isn't just low-tone, it is "something," though that "something" doesn't have to be horrible and scary. It's just another clue to whatever "it" is and "it" has been there all along (B said he felt like we were just getting closer and closer to an answer and that that answer will ultimately allow us to help her, and I know that's totally true). But, I'm still just feeling a tad sad and a whole lot of "why her?" I think part of me was still sort of holding onto someday Sam "catching up," not because life is a race or because we need her to be "typical" (we don't, we just want her to be her best self), but because I'd love nothing more than for her to not have to struggle so hard physically, and well, as we move into more testing and discuss these other lifelong "movement disorders," I'm coming to terms with the fact that Sammie B is likely to have a lifelong disability. And, that hurts. So, so much.

Apologies for being vague on WHAT we are testing for, but if I'm going to continue to hold strong and staying off google, I can't have family and friends googling themselves crazy, if that makes sense. And, as I reminded myself umpteen times today, there's no sense googling something that she *may* have. I'd really really come to terms with and accepted and found peace with a cerebral palsy diagnosis, so now, to go back to looking for a more specific cause is just well, more than a little hard. I feel myself sliding into a darkness, and I literally fought the urge not to google myself into a frenzy all day (and that will be particularly hard moving forward now that I'm back at a computer all day!) but I'm determined not to let it overtake me. Not to let the worries of tomorrow (or 15 years from now) rob me of the joys of today. I just won't. And I KNOW that quality of movement will NOT determine her quality of life. It just won't. There's too much else to her and to life than that.

I'm sad to see the little reprieve from testing we've had come to an end, but really, B and I know that these tests are not just for testing's sake, but for information that could help her. In this situation, as much as it will stink to put her through additional testing, knowledge is power. And that is what has gotten me through these last few days whenever I've gone to the "I don't wanna" thinking . . . Knowledge is power, and if there's some piece of knowledge out there that could help us empower and enable her, we have to find it.

Now, many of you know that I'm not religious. I like to believe there's something greater than me in control (I need to believe that) so I have a spiritual side, but not particularly religious. BUT, probably for the last year, every night, I've said the same prayer. Because I was worried and felt guilty for taking the break in testing that we took. Every night, I prayed that IF there was something we were missing, something that we could make worse by ignorance or something we could make better if only we knew, that we'd know. That something would happen to lead us back to testing. And, well, a mom on one of my boards posted something about her daughter that just smacked me in the face. Something about her daughter's eye movements that sounded just like Sam and . . . her daughter's diagnosis was something I'd considered long ago, but a doctor had dismissed. So, I knew. I knew that it was time to go back to the neurologist, and we did. Then we saw this documentary with the movement disorder specialist, and well, whether it is divine intervention or not, I don't know, but things are, I believe, unfolding as they need to. Even if it is all a bit scary. Even if it breaks my heart to have to put my girl through MORE tests.

Knowledge is power. And the knowledge we are looking for now is knowledge that will help us enable and empower her.

And, as the neurologist reminded me, no matter what "it" is . . . Sam has her own trajectory.

The sky is the limit. And we will do anything and everything we can to help her reach her potential. To accomplish everything she was put on this earth to do. To help her reveal her destiny, as only she can.

Sammie B's face of determination as she climbs the stairs to the ball pit at therapy. That face gets me through the darkest moments of this journey.

"Strength does not come from physical capacity, it comes from an indomitable will." - Mahatma Gandhi

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”
- Shel Silverstein