Tuesday, January 29, 2013


Even superheroes fall down sometimes ;o) 

This one has mono.

No kidding.  So, the short story.  For about a month, I've felt dog-tired all.the.time.  Like if I could sleep 18 hours a day, I would (but of course, I can't).   I attributed it to stress, not having childcare and trying to be "mom" all day and "attorney" all night while the girls slept, but I know myself and this tired just felt different.  I mean, I get tired, but this was like falling over tired, no matter how much I slept.   Like no matter how much I wanted to blog, or return personal emails or calls, or do other "optional" but fun things, I couldn't muster up the energy to.  So, two weeks ago, I finally drug  myself to a doctor.  I thought maybe I was anemic.  Then, the doctor called with blood results . . . not anemic, but . . . my liver enzymes were scary high.  Doctor sort of freaked me out a bit and had me come back in for a bunch of scary tests.   Meanwhile, I was googling "high liver enzymes" and had myself convinced I was in liver failure, needed a transplant, etc. (a reminder that Dr. Google is never a good friend).   Then, yesterday, my doctor called with the "good" news. . . no liver failure.  No cancer.  No need to get a transplant.  JUST MONO.

So, that explains the "dog-tired."  Only solution is "time" and "rest," which is damn-near impossible when I just worked from home for a solid month and NEED to be back in the office. When I'm swamped.  So, I'll rest when I can . .  .

And keep every single finger and toe crossed that the girls don't get this.  Because that would really, really stink.

The Mayo clinic website says that little kids rarely get full-blown mono and usually it is only adolescents and young adults.  I am neither.  In this instance, being the statistical outlier is no fun. 

Now, off to bed. 

Monday, January 21, 2013

Toddler Mia

I think it was back when I was pregnant with Mia that I read a post where Ellen of Love that Max wrote about how her heart just lurched when someone asked her how her second-born child (Sabrina) felt about Ellen's blog named only for her first-born, Max (who has CP, like Sammie B).  When I read that, I too wondered "should I change blog names?"  "Will my second-born feel cheated?"

The thing is, this blog often does center around Sammie B and my journey as a mother navigating this world of "special needs parenting" (whatever that means!).  But, make no mistake, our little Mia Mia is not just a guest star!!!  I'm sure every mother struggles with making sure that each of her kids feels loved equally . . . and that typical struggle is, I think, magnified when one kiddo needs a little extra help with things.   I worry a lot about finding the right balance.  About making sure each girl knows that they are each loved more than words could ever, ever describe.  The "my-heart-so-full-I-think-it-might-burst" kind of love.

So, with that backdrop, let me tell you what is going on with "My Mia Mia" these days.  All kinds of wonderful.

At the beginning of 2013, Mia was moved from the infant class to the toddler class at daycare.  And, she adjusted like a champ.  About two weeks in, I asked the teacher how things were going and she said she couldn't believe how easily Mia adjusted.  I was most amazed that she's taking naps on a cot there and not taking (or crying for) bottles at all . . . and I asked how they get her to fall asleep (she fights sleep like crazy at home and we are still giving bottles at naptime and bedtime here!) and her teacher said, "when we finish lunch, she knows it is nap time and she gets up, walks over to her cot which she already knows is hers, and lays down and goes to sleep!"  Just like that?!   Such a big girl.

Each day when I drop her off at daycare, I put her down and let her walk into the classroom by herself. As soon as she sees her little friends, she stops in her tracks and just squeals with joy.  As if it has been weeks since she's seen them and she's missed them so much.   She is so, so happy there, and that certainly makes drop off easy.

Suddenly, she's doing things that we haven't taught her and that make us look at each other like, "where did she learn that?"   She grabs Sam's play purses, throws them over her shoulder, and says "bye bye" and walks away.  She lays her baby dolls down and pats their back and does "shhhhh!" with her finger to her lip.   She hands us blankets and makes us lie down and then says "nie-nie."

She loves to say animal noises, especially "quack quack" for ducks.   Will mimic most simple words (and don't judge, but next to "mama," my favorite one to hear her say is "poo poo," and when we are alone in the car and I'm trying to keep her entertained so she doesn't go into "Mia-hates-the-car-seat mode," I often say "Mia, say poo poo," over and over.  We both get a kick out of it.  It's funny.   It's cute.)

She loves to eat.  Loves.  A trip to Costco and the samples . . . are Mia's idea of heaven.  I  kid you not, she sees a sample table, leans forward and opens her mouth.  She'll try most any food, and we've only found a few she doesn't like (mashed potatos and gravy???!  Who doesn't like those?!  I KNOW!).  She's had curry and tofu and things B and I never tried till we were adults.  She's also had an entire bowl of salsa, without chips, because that's how she wanted to do it the other night when we were out to eat, so we let her. She liked it. A lot. Spicy, just like her, I suppose!

She does things she knows she's NOT supposed to do and tells herself "no no" while she's doing them.  She looks right at us and shakes her head and says "no no" as she's doing whatever the "no no" is.  She climbs things.  I turn around and find her in positions that nearly give me a heart attack.  The words "No no, Mia - Tushies in chairs!" are common around here. . .

(My mom would tell you that she laughs everytime she sees this picture because, in her words, this picture just captures our funny little girl so well). 
If I had to sum Mia up in a few words, I'm not sure I could . . . she exudes happiness and sunshine.  She's excited and just plain joyful 95% of the time.  She squeals with delight.  Especially when she sees B.  "Dada" is a word that (apparently) must be squealed with utter and total glee.  Her personality is big.   Her joyfulness and excitement infectious.  She is precocious.  She is independent and brave. Whenever we are someplace new and she has a chance to "break free" and go exploring, she does.  She takes off, walking with such purpose.  With a giggle and a bounce in her step like she's just totally escaped (never mind the fact that I'm always close behind).   But then, as independent and precocious as she is, there are these moments where she's exploring and she'll suddenly stop and reach for my hand like, "whoah, I'm going to need you for this one, mama!"  I love those moments.   Love her little hand in mine.  Just as I love the moments when my otherwise so independent girl decides she wants to take a (very quick) break from playing because she just needs a snuggle.  And the moments where she will suddenly just cling to me and say "no no" when she doesn't want to do something (like feed the horses at the petting zoo).   I am ever so mindful of how fleeting this baby and toddler business is, and I know there will come a day when I long for one of my girls to "cling" to me . . . so I soak it up now, every opportunity they give me. 

She loves to dance, and seems to love to be the center of attention. We took both girls to a local children's concert this weekend, and she got up, right in front of the musicians and was dancing and giggling and looking at the crowd as if she thought they'd all come to see her performance.   She was so very, very proud of herself.

She's obsessed with shoes.  Wants to have hers on at all times, and actually gets excited in the mornings when it is time to put them on and angry when we take them off.  We often let the girls eat dinner or paint and do other messy things in just their diaper/pull ups . . . but Mia insists on keeping shoes on.  So, many nights, Mia can be found playing in our den in nothing but a diaper, socks and shoes.  We stopped putting her in those full-footie pjs because she would want her shoes OVER them first thing when she woke up.  She is a funny little birdie.

(I said joyful 95% of the time . . .  this picture would be the other 5% . . . a Mia Mia meltdown, in her best Ugg footwear!  The epic meltdowns are new to us . . . the throwing herself on the floor, kicking and screaming Mia meltdowns.  Oy.  And yet, she  manages to be cute even during those moments.  I told you, her personality is big.  She does it all "big" - joy, tears, humor, frustration, love . . . are are "big" coming from our littlest lady.)  
She LOVES baby dolls.  Of all her Christmas presents, the one that she was most excited about and the one that held her attention the longest was a baby doll from my parents.  Once she'd opened that, she had no interest in any other presents, and went right to work giving her doll a bottle.  Pure sweetness.

(It was a rough hair morning)
She is Mia Mia.  Our Mia Mia.  My little birdie.  And we couldn't love her any more than we do.   I hope that as a mother, I can strike the right balance in giving each of my girls what they need.  In being the mama they each need.   (I love them both to bits and pieces . . . I actually just snuck into their rooms moments ago just to watch them sleep and breathe, and I put my hand on each of their little backs and whispered how much I loved them before I snuck out of the room . . . excited to see their little faces again in the morning, thinking "I actually miss them while they are sleeping.").

Mia, Mia, this blog may be called "My Sammie B," and I'm sure there will be times when you see your big sister getting extra help and "extra mama (or dada)," but you must know this . . . you are our Mia Mia.  You are pure sunshine and joy and you make me giggle incessantly.  This little family is blessed to have you and your sister as its two stars.  Two wonderful, incredible, amazing, magical little lights.  I adore you, and there are truly so many moments throughout my day that I look at either you or your sister, and the amount I love you takes my breath away.   I never knew a heart could feel so big, so full of love until the two of you came into my life. 

I truly, truly could not have designed a more perfect little girl to be my second-born.  To make this little family "four."    I love you my littlest lady.  Everything about you. 

Sunday, January 20, 2013


Today is International Acceptance Day (it is still the 20th from where I type!).  All day, I've been thinking about what "Acceptance" means or should mean for my Sammie B.  I want my girl to grow into a world that sees her "cans" more often than her "can'ts," that sees her similarities more often than her differences.  A world that looks at my girl, and sees not just a little girl that cannot yet walk independently, but a little girl who, just like most little ladies her age, loves Princesses and Dora and giggling and anything "dessert."  I want the world to see her for her magic.  Her perseverance.  Her love.  Her gentle, gentle soul.  Not her challenges.  For, even though her challenges certainly help shape who she is, they do not define her.

And, today, I really, really want to thank Stevie Hopkins (and Annie, whose memory is alive in the hearts of so many)  of 3E Love for sharing their symbol and story with the world.  For showing the world (and reminding this mama) that a person's form of mobility does not define or limit the richness of their lives.  For showing me and the world that no matter what my girl's ultimate form of mobility may be, its her story, and it will be a great one.  It already is.  And, I am so, so blessed to be a part of the story that my Sammie B is writing.

I could not have picked any more perfect little creature to have been my first-born.  To have made me a mama.  For I have learned more from her in her four short years on this planet than I learned in my first thirty.   She is amazing.  And she is mine.  And, tonight, I reflect on how blessed I am to have been entrusted with her.  To be her mama.

My girl, may this world meet you with all the magic and acceptance that your magic deserves.  

Wednesday, January 9, 2013


Lately, my girl is wow'ing me in a new way.  With her perceptiveness and self-awareness.  Way back when she was being assessed for the school district's pre-school program, I had a conversation with the neuro-psychologist who evaluated her . . . she said it was amazing how aware of her own challenges Sammie B is, and that that awareness is part of what often makes her timid and afraid of trying new things.  She clearly knows what is hard for her, she knows that because of her articulation, she is difficult to understand for new listeners, and that stuff . . . stops her from trying sometimes.   That hurts my heart.  It does.  Striking a balance between letting her be just who she is, exactly as she is, and pushing her just to the edge of her comfort zone, but not too far, is really a struggle.  And, lately, as my girl continues to show me just how self-aware and perceptive she is, that conversation with the neuro-psychologist keeps ringing in my ears . . . and I keep thinking about how to strike that balance.  How to be the mama that she needs.

A couple of months ago, Sammie B and Mia were both standing in my room.  Sam was using my bed for support, Mia was just standing there.  And, Sam fell.  She just lost her balance, and fell.  And cried.  I picked her up, kissed her head and said, "you know what, I'm so proud of how brave you are, because I know that standing is hard for you, but you still did it."  And, then she asked me a question I just wasn't prepared for.  I knew these questions would come, but I guess, I didn't expect them yet.

"Why?" she asked. 

Caught off guard, I said, "why what?" and she asked me, "Why is standing so hard for me?"  And with my heart just crumbling inside, wishing my girl didn't have to wonder why her body was failing her, I explained that her body is just made a little differently, but that's okay, and that everyone has some things that are hard for them and that they have to work a little harder at, and that even though those things are hard, sometimes we just find different ways of doing them, or we find things to help us do those hard things and together we went through a list of the things she can use to help her stand . . . my leg, my bed, the couch, her walker . . .

That conversation is one that I've played over and over in my head, and wondered, how often does she wonder those things?  Does she watch the other kids on the playground running and climbing with ease and wonder why?  And you know what?  Those thoughts are almost too much for me to bear. 

That's always been how we "explain" Sammie B to her or to other kids (we've had other kids ask "why" Sam can't do certain things) -- that "her body is just made a little differently."   I've never labeled it as "cerebral palsy," or "CP" to her, though of course we talk about it in front of her at times.  So, today, when someone asked me in front of Sammie B if another child we know "has CP too," and I said, "yes," and Sam said (with glee) "JUST LIKE ME!," I was again - taken aback.   She is listening to everything.  She is so perceptive, so aware of herself.  So amazing.

If I could make the "hard" easy for her, I would, in a second.  But since I can't, we'll continue to navigate these waters, trying to find a balance between pushing and just letting her be, just as she is.   Helping her continue to understand who she is, why things are (even if we'll never be able to answer that ultimate "why" and even if it is one we'll struggle with ourselves from time to time), and that, most importantly, no label defines her, or what she will do.  CP or not, the sky is the limit.  Even if on the way there, we have to find different ways of doing some things.

Cheers to you, Sammie B.   Everything about you.  Just as you are.  I can't promise I'll always balance it all perfectly, but I promise I'll try.  May I somehow manage to instill a confidence in you to try new things, while at the same time, always making sure you feel safe.  May I never push too hard, but do everything I can, everything you need me to, to enable you to be your best self.  May I always be the mama that you need me to be for you to reach your fullest potential.  To reveal your destiny to this world.  May you always feel me next to you (even if I'm not actually right there) cheering you on.  For in my heart, girl, the best and most important job I'll ever have is to be "mama" to you and Mia.  To be your biggest cheerleader and greatest fan.  For those things, I'll always be.

Thursday, January 3, 2013


The girls and I flew to my parents' house alone to spend the days between Christmas and New Years with my family.  I was anxious (to say the least) about how I'd handle flying with both girls alone.  How I'd disassemble the double stroller on the jetway while holding both of them (impossible without six arms, and I unfortunately have just two), how I'd load the plane holding both of them (impossible), how I'd entertain an unable-to-sit-still-always-on-the-go Mia without neglecting Sammie . . . oh how much I worried.  

As it turns out, the airline staff was mostly super helpful. B got a gate pass in LA, and helped me get everyone on the plane, someone helped me get everyone off in St. Louis and it all worked out similarly on the way home even though I had a layover with a long delay.  We managed.  There were tears on landing and takeoff and there was frustration (Mia's) from being kept contained, but mostly, it was okay.  We made it.  Despite stress and anxiety and an ear infection (Mia's) (cue mama guilt for not knowing).  

On the way there, Mia barely slept, despite Sammie B so kindly holding her hand (her idea) and singing to her (also Sam's idea) a song she'd made up herself (Mia Mia Mia Mia-ahhhhhhhh), and I sort of dreaded the flight home (with the layover).    The day we had to fly back, I was anxious and grumpy and everything seemed to go wrong and I wasn't a particularly nice person to encounter . . .

And then, when we boarded our second flight (post delay and layover), there was this:

Mia had fallen asleep in my arms, Sammie B was snuggled next to me watching Cinderella (for the 898th time) and I *HAD* to use the restroom.  I decided to take my chances on Mia waking up, and called a flight attendant and asked her to just stand next to them.  I asked Sammie B if she would stay with Mia while I went, and laid Mia down.  I came back to this.  And my heart stood still.  

I picked Mia back up (who miraculously stayed sleeping) and Sammie B snuggled into my other side and fell asleep.  And all the *stuff* going on in life that had me stressed out and anxious melted away, and in that moment, all felt right and perfect and magical.  

These two.  Make my world go 'round.   

Wednesday, January 2, 2013


I've neglected this little blog of mine in a big, big way.   Not because I've been busy (though I have) but because I'm a person that can't tell a story unless I can tell the whole story, and the thing is, right now, there's just "stuff" going on in my life that isn't blog fodder.  Because it's B's story just as much as it is mine, and we have to work through it together.  So know that.  Know that there's this "stuff" on the sidelines that I'm struggling with.   And part of the purpose of this blog is to preserve my own memories - the story of my little family.  I envision looking back at this blog with my girls, them reading it long after I'm gone from this world, and them seeing a slice of who their mama was, what their life was like, and knowing just how very much I loved them and how much joy and magic they brought to my life. And, well, there's been this "stuff" going on that I'm not even sure I want to preserve.  I'm not sure "posterity" is what I want for this "stuff."  

But, I can't stay away from this blog anymore. I can't.  It's too good for me.  So, I'm going to  keep writing, and telling you about my sweet girls, and the sweetness they bring to my life.  I promise. 

And tonight, on the first day of 2013, I'm totally without any eloquence or New Years resolutions . . . so instead, I say this:

May 2013 bring less uncertainty, less struggle, more joy, more happiness, and tons of magic

May I feel more sure of "us" one year from now than I do right now.  Because feeling not so sure really sucks.  May my girls always know that even when things suck - even when things are hard - they light up my world in a big, big way.  They make my world go round, those two.  

Here's to 2013, friends.  Thank you for staying tuned, even if I haven't blogged in over a month.   I may have the "stuff" sitting on the sidelines, but I'm back.   I'm blogging.  I promise.  Because I need to.