Saturday, April 28, 2012

Our Fourth March for HER

Today, we participated in our fourth March for Babies as "Team Sammie B."  Other family and friends walked in other states (nearly 50 people walking for our girl -- my mom and her St. Louis team, my dad and his Florida team, and even some of our friends from my mama support board that have never even met us in person walked in Sammie B's honor in Texas -- pretty special).  We raised over $4,000 for this cause, and everything about today was perfect.  As I explained to B, it always feels like another birthday.  A day where we just spend the day with people that love and adore our girl, and every second of the day is about her.  There are always a few tears (mine, if you were wondering!), as I reflect on our time in the NICU and as I see other families walking for babies that didn't get to go home from the NICU, but most of all, the day is just filled with this feeling of happiness, because our girl is so, so amazing and has inspired so many people.  Because "Team Sammie B" (today and everyday) is filled with amazing people who, like us, believe in our girl's potential with every ounce of their being.  What an amazing feeling.

Our first March for Babies, in April 2009:

Our second walk, in April of 2010:

Our third walk in 2011:

And today:

After the walk, we usually go out to brunch as a group, and we did that today.

It doesn't take much to transport my mind back to the NICU.  To remember the machines, the beeping, the not being able to hold my girl anytime I wanted to . . . but on days like today, even though those moments -- the NICU moments -- are forever engrained in me, nothing feels better than just being with my little family, and those that love us.  Today, I truly felt so, so blessed.

And, let us not forget the newest, miniest member of Team Sammie B, our sweet Mia.  Mia was born full-term, and while we may never know WHY she made it to full-term and Sammie B didn't, we do know that my pregnancies with both girls were similar (pre-term labor, bed rest) but with Mia, I had weekly progesterone shots, an intervention discovered, in large part, due to research supported by the March of Dimes.  So, for that too, we are grateful.  These two girls just make my world go 'round.  Today and everyday. 

This organization is a part of us, and today, we walked for it.  For the March of Dimes, for Sammie B, and for all the other babies born too soon.

Here's to Team Sammie B!

Thursday, April 26, 2012

Perfectly Her.

Lately, I've been a bit stuck on what to write. I have a bullet-point list of things I want to tell you about, but somehow, I either can't find the time to write, or when I do, the words just aren't coming.

Three years and one day ago, this little blog was born.  Just over three years ago, we took Sammie B to her six-month well baby visit and were told that she seemed "a little behind."  We were first-time parents, and we just hadn't known.  We didn't realize that she "should" have been doing certain things. We didn't know.

Just over three years ago, we took her to her first PT evaluation and were immediately referred to a neurologist.  After that PT appointment where a "neurologist" was mentioned, I stood in the parking lot, clutching my girl, and I sobbed some of the most gut-wrenching sobs of my life.  I later sat on the phone with my dad, hiccuping through tears, and just said, "Dad, I'm so scared."   I sat on the phone with my mom, hiccuping through tears, and just said, "Mom, I'm so scared."  I was so, so scared.

I've been going back through some of my first blog posts, and frankly, it has been a little hard.  Those early posts were all about our beginning PT journey, about my worries, my fears, my anxiety.   But then, they were peppered with a whole lot of "but we saw 'x specialist' and he/she said Sammie B will most likely 'catch up' by the time she's three!".   And there it was.   Back then, each time a specialist uttered that phrase -- that they really thought she'd "catch up," it was like a huge weight had been lifted from me and I could breathe again.   Each time they uttered that phrase, I felt like all was going to be okay.  She was going to be just fine.

As I read those old posts, tears streamed down my cheeks.  I wasn't ready to write here about it, because I didn't yet know how to articulate what I was feeling, but as I often do, I talked through it with a friend, and she helped me find the words.  As I read those old posts, they took my breath away, because I worried that one day, a 20 or 30-year old Sammie B would read those words -- all that "see she's going to catch up" stuff, and she'd feel like if she never had "caught up," (whatever that means), that it was somehow not enough.  That she'd feel like that was the goal and if she hadn't met that arbitrary "caught up" goal, that somehow she was a disappointment.   I kind of wanted to yell at that old me.  The scared one just starting this journey:  "HEY!  IT IS OKAY!  EVEN IF SHE NEVER CATCHES UP, IT IS GOING TO BE OKAY!!!  SHE WILL STILL BE 'JUST FINE!'  MORE THAN FINE!" 

Somewhere along the way on this journey, "catching up" just stopped being our goal, and enabling her to be her best self became the goal.   But, I worry what those old posts convey.   Because, I never, ever, ever, want Sammie B to feel or believe that if she never does "catch up" or do x, y, or z, that her journey or her worth is any less, for it most certainly is not.

Sammie B is exactly as she was made to be.  She is, in a word, magic.  B and I have grown so very much because of her.  She's made me a better person, and truly, truly inspired so many.   If I could say one thing to that mom of three years ago -- the "me" that sobbed in that PT office parking lot, I'd say this . . .

This journey is going to be filled with worry.   Your heart will feel more anxiety than you ever knew possible, but the joy will be so intense you will think it is going to make your heart explode.  There will be times when you are waiting on medical test results that you will sit in your office, nearly unable to breathe, paralyzed by the 'what ifs,' and you will get up and calmly shut your office door so that you can cry.  When those results come back 'normal,' you will close your office door or walk into your bedroom, and you will cry.  There will be times when watching how HARD your girl works for things will make you so mad you want to just punch a wall.  Times that you stand and sob with your husband and just say, 'it's not fair.'   But, there will also be times when you get a text from your girl's nanny that says 'she's totally figuring out the walker,' that you will get up and shut your office door so that you can cry tears of joy.  There will be the times she moves her little body around the pool independently for the first time, kicking her legs like its her job, or sings her first song, or asks her first question, or tells her first knock knock joke that your heart will truly, truly feel like it is going to burst with pride.  You will have crummy days at work and sit and play a video of her riding her little adaptive trike over and over and over, and somehow the 'bad' of the workday will melt away with that little girl's giggles and smile as she pedals (really, really pedals!!!) her trike for the first time.  So, yes, there will be worry.  But the moments of joy will be the defining ones, and they will be so, so amazing.  Your heart will feel more joy and more love than you ever knew possible.   Your little family will not only survive this journey, you will thrive, as will she. 

She is perfectly her. She is mine. And, I truly, truly, truly couldn't have envisioned a more perfect child to be my first-born.  To make me a mama.  I am so, so glad this child chose me to be her mama.  For she is perfectly her.

If 20 or 30-year old Sammie B does read this little blog one day, may she read it and see my undying love, commitment and devotion to her, my never-ending belief in her potential, and my pride in every ounce of her being.  May she see what magic she brought to me.  How happy and proud she made me.  Every single day.  Just by being perfectly her.  I am so, so in love with her. 

Tuesday, April 17, 2012

Perspective + Independence + Hours of Entertainment = Money Well Spent

We ordered this back before Christmas, and it just arrived last month (it was on backorder) and we LOVE LOVE LOVE it.

Sammie B's most favorite thing is to stand in her new "tower" and "wash your hands" (which means washing her hands, she uses "your" and "you" for herself a lot, which is cute). Just about every single weekend, we've baked something together, which has been so very fun (before we bought this, to do baking projects, I used to bring her old highchair into the kitchen, but that's not the same!) We also usually let her play with water or "wash dishes" (which means play with water ;o)) while we are in the kitchen making dinner, which has also been awesome.

The other day, she asked B to "wash your hands" and he told her that she couldn't because he was going to wash bottles (I jokingly tell him he's the "no man" in our house; if my girl is asking to stand, I almost never say no, nor do I worry about conserving water!) and Sammie B said, "How about I wash some bottles?" She won. He let her.

I think she'd stand in this thing in the kitchen ALL day if we'd let her. We've bought a ton of things to encourage more standing -- her play kitchen, her water table -- but NOTHING has inspired this little girl like this kitchen tower has. WE LOVE LOVE LOVE LOVE IT.

This little purchase has offered Sammie B some newfound independence and perspective!

Worth every penny and then some!

Wednesday, April 4, 2012

Wordless Wednesday (Sort of)

I can't be totally wordless, even though this picture sort of speaks for itself.

Lately, I can't stop thinking about how perfect our little Mia fits into our family. How wonderful "being four" feels. I feel like I always read things where people have a baby and then like the next day or the next week, they are saying "I already can't remember my life before him/her," and right after Mia was born, things felt hard. I was exhausted. And, I'd read stuff like that and think, "oh but I do remember life before her. I slept more. I felt pulled in fewer directions. I had more time to devote to Sam, and well, I just felt like I had my life, our life, more under control."  During those first months as a family of four, things felt crazy.  I was overwhelmed.  We were overwhelmed.  I felt guilty admitting that, like it was somehow like saying "I wish we hadn't . . . " and that's not what I meant or felt, but wow.  Things were hard. 

But now, just five point five months later, and you know what?  I remember our lives before her.  As a family of three, we were fabulous.   But, as a family of four . . . we are even moreso.  Because she is part of us.  And these two . . .

These two little girls are sisters.   And, there's nothing I love more than watching them grow. 

Last night, Mia was wearing her tye-dyed onesie and Sammie B requested to put on her matching t-shirt.  When Mia was at day care the other day, Sammie B asked, all day, to go "pick Mia up!"  This morning, I told Sammie B I was going to take Mia to her "baby school" (that's what I've been calling day care) and then go to work and Sammie B said "how about we all go to baby school?"

I'll admit it.  By having another, I worried so much about what that could take away from our Sammie B.  My first-born.  How I'd feel pulled in different directions and whether that would keep me from giving Sammie B all that she needed.  But now?  Now, I get it.  Mia won't "take" anything from Sammie B.  Instead, our girls are amazing gifts to each other.  Sisters. 

2 of My Loves 3ELoving it Up

Remember that one of my (biggest) goals for 2012 is to find as many ways as possible to Enable and Empower my Sammie B?

Well, you can imagine how much I love, love, love these shirts from 3ELove, which we purchased at the Abilities Expo on Saturday. (Mia and I got them too!)

3ELove's motto?

"Embrace diversity. Educate your community. Empower each other. Love life."
- 3E Love Founder, Annie Hopkins (1984-2009).

Yep, I dig it. So, let's do it, ya'll. Embrace, educate, empower, love. What's better than that?!

Sunday, April 1, 2012


I don't have a picture for this post, and I'm going to make it quick, but I want to share. This weekend was so, so full. Full of fun, full of wonderful, full of love, and full of friends.

Yesterday, we attended the Abilities Expo, and that was just amazing for me to see. Walking in, I will admit, I was suddenly just overcome with emotion. My eyes filled up with tears as I looked around me and saw so many wheelchairs. I felt overwhelmed. But, that feeling faded after getting in and seeing everything the Expo had to offer. The thing is, most of the products/equipment were really geared toward adults. And, we have NO idea what a year from now will look like . . . what equipment/adaptations Sammie B will need, much less what "adult" Sammie B will look like . . . but just seeing all the possibilities was so, so encouraging for me. Seeing adults in wheelchairs whose chairs were truly just a seamless part of their lives. Seeing videos of adults with physical disabilities scuba diving, talking to a man in a wheelchair about how amazing it feels for him to be in a pool ("to be unencumbered by gravity," which is how I imagine it feels for Sammie B too), seeing a super super cool wheelchair accessible motorcycle, realizing (again) that truly, truly "disability" does not mean "limited."  Sammie B's life . . . however it may look a year or ten years or twenty years from now will NOT be limited by whatever disability she has.

After the Expo, we had lunch and drinks with my new friend and her little family, who had also attended the Expo.   Then, today, I took Sammie B to a birthday party for one of her friends while B hung with Mia, and then we all went for a play date with another little boy that we met through Sammie B's last school.
Just an incredibly nice weekend. Lots of time with my little family, and lots of time with great friends.

Sammie B's friend (M) just melted my heart today. He uses an I-Pad to communicate and today he told Sammie B "I love you. You are nice. Your turn!" (We were trying to get her to say "I love you too," which is why he said "your turn."). The two of them took turns playing games on the I-Pad, we played with a guitar together, and his mom and I had a chance to just connect, and to reflect on how far each of our kids has come in the last year, and how far WE'VE come (it's been awhile since we've seen each other). Just a great time. This is a journey we never knew we'd be on. This "special needs" journey, but wow . . . we've met some truly incredible people --- kids and adults -- along the way, and we are so, so glad to walk this journey with them.

On another note, Sammie and Mia's interactions continue to just make my heart happy. Sam FINALLY gave Mia a kiss! She's always been really sweet with her, but whenever we said "want to kiss Mia?" she'd give a very quick (and strong) "NO," and we haven't pushed. B and I have been really amused by it. Well, Thursday night, just before I put Mia to bed, I asked Sammie if she wanted to give Mia a kiss on her head and she said, "yeah." Tonight she kissed her on the lips. Mia continues to be just enchanted with her sister, and tonight in the bathtub, Sammie B reached over to help Mia stand. Does it get any sweeter than that?

A very, very full weekend.  And, now, I burn the midnight oil to get some work done. Sometimes, that's what work-life balance means.