Wednesday, November 28, 2012

Wordless Wednesday: It Takes Two.

Just back from a 5 day trip to Northern California to see family for Thanksgiving.  More to come on that (Should I stop saying "more to come"?  Because really, I'm not sure when the TIME for more is going to walk into my life, and I despise empty promises).

Suffice it to say, my two little girls had so, so much fun playing with their cousins.  There were enough little girl giggles in those five days to carry me for months.  Sunshine, giggles, little girls, princess costumes, Christmas trees (that we cut down), coloring, crafts, hot chocolate and a whole lot of other fun stuff!

These two take my breath away.  Over and over and over.   

Thursday, November 15, 2012

You're One (and then some!)

Dearest Mia Mia, 

Let me first say this . . . the timing of my birthday letter to you (one month late) is a reflection of nothing more than how busy life has been.  As a second child myself, I remember once finding my baby book and my older brother's baby book and feeling so sad that my mom had spent so much more time on his.  I now know that that was a reflection only of the fact that she was busier by the time I came around.  Busy hugging, cuddling, loving two instead of just one.  Busy watching my brother and I become friends.  Busy with so many wonderful things. 

Just as we've been busy!  Busy laughing, giggling, smiling, hugging, celebrating (birthdays!), busy watching you and your sister fall more and more in love with each other everyday.  Watching you greet her in the morning with your biggest smile of the day, a hug and a kiss. Busy watching the two of you become friends (with the usual sister quarrels over toys thrown in!).  The moments when you spontaneously hug or kiss her (or she does the same to you or she says, "I love you Mia Mia") are the moments that keep me going even on my worst days. You truly are like the perfect little puzzle piece that made this little family of three into four.  

My love, our year with you has been so, so busy, but so, so full of wonderful. 

You are the most energetic, curious and busy little girl I know.  You amaze and amuse me every single day over and over.  As we all sit in the den each night and play after dinner, you are up exploring things.  Throwing things (non-trash items!) in the trash can (we now check the trash for those items before taking it out as a matter of habit), hiding toys in cabinets, climbing on everything.  You are Miss Independent.  It is incredible, and I marvel at you.  But you wonder around the room, being so independent, yet every few minutes, you swing by one of us for a quick hug and kiss before you are back off again.  Those frequent hugs and kisses, the ones that are all your idea, are one of my most favorite parts of being your mama.  

You have a coy little smile that lights up my world.  When I come home (or walk into the room) and you see me, that smile spreads across your face, and you come toddling toward me, arms outreached . . . and my heart melts.  Over and over.  

A few months ago, when we realized you were officially a full-time walker, I finally took you out to have your feet measured and buy some shoes.  We got you sparkly maryjanes and some hot pink tennis shoes, and you LOVE them.  That night, you kept going and getting one of your shoes and handing it to me and throwing your feet up in the air like "put them on, woman!"   I'm pretty sure you are gonna have style, my girl!

You do everything big, my love.  You smile big, you laugh big (though infrequent -- you actually smile all the time, but don't laugh often, but when you do, its a full on belly laugh), you eat big (we haven't found a food you wouldn't try, and getting samples at Costco is a day in heaven for you!), you throw big temper tantrums, you hug big (and often), you love big, and without even trying, you've inspired and motivated your sister in a big way.   My girl, you just do life in a big, big way, and we love that about you.  

Mia, like most moms that have more than one child, I think I worried before I knew you how I'd find room in my heart to love two girls. But you know what?  It really was as if (as everyone said it would be) the second you were born, my heart just multiplied infinitely in size.  The amount of love I have for you and your sister is incredible to me -- there are no words -- but the every day moments with each of you, the my-hearts-so-full-i-think-it-might-burst moments, never stop coming, and I wouldn't have it any other way.  

I love you my littlest girl. I hope you keep doing life in your BIG Mia Mia way.  You have an energy about you that is indescribable, and I marvel at you every single day.  And I know, you are just going to keep on giving us moments to marvel.  

Mia, Mia, happy first birthday my darling!

Your ever lovin' mama

Thursday, November 8, 2012

These Are a Few of Our Favorite Things . . .

Sitting Together at Sammie's (now, by default, "their") little table

I promise, the look of disdain on Sammie B's face is directed at the sandwich we insisted she have if she wanted Halloween candy, not at her sister!


Hugs (oh the hugs!! This is now how Mia likes to begin her day, every day, with a hug and kiss from her big sister!)

Parallel Bars

Back when Sammie B was at her EI center-based program, I often tried the parallel bars with her, but she needed maximum support and assistance.  That was well over a year ago.  A few weeks ago, we had a substitute PT while ours was on vacation, and they got the parallel bars out to try again.  Sammie B's nanny was super excited to report that Sam did FABULOUSLY with them, and even took a "step or two."   So, last week when I got to go to Sammie B 's PT appointment and my little lady WALKED THE LENGTH OF THOSE BARS ALL BY HERSELF, my heart soared, and my eyes filled with tears . . . Oh my lady.  Progress.  Determination.  Perserverance.  She's got it all.  

Lunches with sisters, painting, hugs, parallel bars, progress . . . these are a few of our favorite things!

(Not so favorite -- the fact that I'm typing this at 1 am during a quick BREAK from the brief I have to finish by tomorrow am before the partners wake up! Eek.  Back at it!)

Wednesday, October 31, 2012

Fifth and Second

Sammie B has FIVE Halloweens in the bag, and Mia has two.  How is that even possible?!  I feel like just yesterday, Sammie B was my little (sleeping) chicken . . .

Sammie B!






The police officer costume was a total game-day change in plans.  Sammie B has been deciding between a princess or a fairy for what seems like months . . . but for the last two weeks, has been insistent that she'd be "the green fairy" or Tinkerbell.  But then I found out yesterday that they weren't dressing up at school today (lame) so this morning, when Sammie B said she wanted to wear her fairy costume, I talked her into putting this little outfit on for school with the promise that she could change into her Tinkerbell costume as soon as we got home.   (We have a lot of dress up clothes; I bought police outfit months ago, but she's always flatly refused to wear it; the princess costumes are her choices every time).  So, she wore it.  Reluctantly.  Then, I went to pick her up at school, and she told me "I don't want to be a fairy.  I want to wear this."  So she did.  All day.   I taught her to say "I'm Officer Sammie.  I'm here to help you!" and she blew her whistle all day and was a hit every where we went (PT, HPOT and to some friends' houses tonight).  And right now, she's in bed, wearing her police costume because she didn't want to take it off.

Mia Mia!



And our little whoopie cushion!!!!!!   I'm pretty sure Mia's costume was the favorite of everyone at daycare.  Ridiculously cute.  Ridiculous.

Happy Halloween!!!

I'm Here.

I'm still here.  We are still here.  We are doing well.  Despite a month that is kicking my ass.  I have had, "write blog post," and "Mia's birthday letter!" on my never-ending to-do list for over a week.  I'll get to them.  I will.  I'll also (hopefully soon) get to post pictures from our two birthday parties, our trip to the pumpkin patch (in sweltering 95 degree heat, a so-cal "fall" day) and our night of carving pumpkins.  I will eventually.   I hope.

Right now, I'm swimming.  I've officially billed more hours this month than I have since I went to trial in the summer of 2010.  A lot of hours.  On top of B being out of town for six days out of this month, not having childcare for another week of this month, throwing a certain little someone a first birthday party . . . I've worked a lot.   We haven't had childcare the last week, so I've been staying home with the girls, frantically answering emails when I have to, and jumping on conference calls during nap time and car rides to and from therapy appointments, and then logging onto my computer to start my work "day" the second both girls' heads hit their pillows.  I haven't slept more than a couple of hours in several nights.  I've sent drafts of motions off at 2 and 3 am every night for the last 5 nights, and I've literally climbed into bed just an hour or so before B's alarm goes off at 4:45. 

I'm exhausted.

But, I'm good.  I'm in this place right now where I'm feeling challenged and excited about work, and despite one day last week that caused some "I have too much to do and I'm not doing anything well" tears, I feel good about the job I'm doing.  So, that's good news, right?!

And, even though there was that one teary day last week (where I really, really, really wanted to flush my blackberry down the toilet because I felt like I could never just get a day off to "just" BE mama), I feel good about the job I'm doing as mama too.  I've gotten some much-needed time with both of my girls this week, and its been phenomenal.  After a PT session where Sammie B just BLEW ME AWAY yesterday (I had to explain to her what "happy tears" are . . . my girl rocked it, ya'll!), I treated the little lady to a pedicure (for both of us) and then we ran into a bakery nearby and shared a brownie.  It was such a grown-up day and so fun.

I could use more sleep, but well, things are good.  Great even. 

My blackberry crashed last night (ironic, right?!) so I have no pictures to post (boo!), but I wanted to write a quick post to say, "I'm good.  We're good."  This has been a chaotic month to say the least, but it has been a good one.  A very good one.  On the work front, on the family front.  All of it.  And that's just good.

And, Sammie B was singing with B last night . . . "I've been working on the radio, all the live long day."  And that has had me giggling ALL DAY LONG.  She really thought those were the words.   Silly, magical lady.  I also took her with me to the store over the weekend, and she was acting like a crazy woman. I asked her, "why are you acting like a maniac?" and when we got home, B asked her how the trip to the store was, and she said, "I was acting like a maniac!"  Conversations with her get more grown up every day, and B and I are just marveling at it all with so, so much pride. 

Mia Mia can't get enough of her sister and is constantly leaning in to kiss Sammie.  Can't get enough of those moments.  Mia is pure joy.  She's the most independent little thing I've ever seen, and we marvel at her too.  Non-stop. 

So tired, yes.  Exhausted, even.  Wishing sometimes that my job wasn't so stinking unpredictable and that taking a day or two or three or four "off" was easier.  But, life is good.   Really, really good.  So this exhausted mama is (while whining a little) feeling so, so blessed. 

Sunday, October 21, 2012

Just Playin'

I'm so excited to share that I've recently been elected to the Board of Directors for a national non-profit that builds universally accessible playgrounds and does education programs for kids of all abilities, in an effort to reduce bias towards kids with disabilities.  Fabulous group, fabulous mission, and something I'm just so very proud to be a part of.

Last week, I took the girls to one of the playgrounds built by this organization, and we just had a blast.  Truly, truly, every playground *should* be accessible.  Every playground should be one where my two girls can play alongside each other, and alongside kids of all abilities.  A place where typical kids can see kids with disabilities playing.  So they can see the ways those kids are just like them.  A place that can spark conversations between parents and kids about how kids who might seem so very, very different at first blush are just like other kids.  Knocking down bias through play.

We are fortunate to live in a city with many accessible playgrounds.  We don't go to them nearly as often as we should . . . but everytime I do go, I leave thinking, "we have to go to the playground more often."

We do.  We have to. 

Watching Sammie B stand everywhere at that playground, with so little help, blew me away.   Progress is there, in the inchstones.  In the "is she really just holding on with one hand?" moments and the "oh my goodness, she's standing and steering the pirate ship!" moments.  It's there.  And, really, I can't think of any better way to help her "work" her little body than by playing at the park.   A park designed for, built for . . . kids of all abilities.  Designed so that my Sammie B and her sister can play right alongside each other. 

"What work I've done, I've done because it has been play." - Mark Twain

Thursday, October 18, 2012

One Year.

Mia's birthday letter is forthcoming.  Suffice it to say, tonight (on her actual birthday), that I'm having a hard time wrapping my head around the fact that it's been one year since Mia Mia was born.  A year.  We will celebrate her birthday (in a big way) this weekend, but today, we had extra hugs, extra kisses, extra giggles, and extra birthday love.  And, B came home after 5 days away, so a good, good day indeed.

One year ago today, and this moment -- the moment my girls met each other for the first time -- is still, hands down, my favorite moment ever.  It feels like it was yesterday, not 365 yesterdays ago!  I can still hear Sam's giggles and squeals of glee of "Baby Mia!" when she saw her sister and held her for the first time.   My eyes filled with (happy) tears as I just looked at them, then looked at B, both of us smiling from ear to ear silently saying to each other -- with our eyes -- "they are ours! TWO!  Two little girls!  Sisters!"   So very, very blessed. 

These girls are my heart.  My heart.

Happy Birthday, Mia Mia.  We love you.  You truly are like the perfect little puzzle piece that was meant to fit in this little family.  The piece that was meant to make us four.  

Tuesday, October 16, 2012


My dear friend H recently volunteered (yes, volunteered!) her time and talent to capture my little family with some amazing pictures, as she's done for many, many other families of special kiddos.   We did the photo shoot in a park near our house where we love to picnic (and watch boats), and the pictures couldn't be any sweeter (which is why I couldn't possibly narrow it down to any fewer to show you . . . the series of Mia in Sam's lap is -- of course -- my favorite.  Each and every one of them captures a different expression of one of my girls that just melts my heart).  

H, thank you so, so much for capturing my little family.  Your talent amazes me, and your friendship is a blessing.  xo

Saturday, October 13, 2012


It's been awhile.  My only excuses -- one birthday party planned, executed, behind us (I need to post pics! it was such a fun, fun party); one birthday party planned and coming up this weekend; work is crazy; B is traveling (the annual professional conference he goes to for work), so I'm solo with both girls.   Reflecting back to last year when he went to this same conference, when I was on bed rest, pregnant with Mia at this time, and now a year has flown by.  A year.  So, last month brought a 4th birthday party for Sammie B and this month (this week) brings a first birthday party for Mia.  So much joy, so much celebrating. And mindblowing because . . . wow . . . life moves fast, doesn't it?!   And, I need to find the time, in between the motions and the briefs and the discovery and the celebrations to sit and write about it.  And, I will.  I promise.  But not tonight. 

For now, I want to share with you some of my recent conversations with Sammie B.  For we take none of her words for granted.  I delight in them all . .

* * * *

Yesterday, her nanny took her to see the Endeavour space shuttle, which was parked a few miles from our house.  (We'd all seen it fly over the beach a few weeks ago, which was amazing).   On the way there, Sam insisted on wearing her "astronaut helmet."  So, her nanny put her horseback riding helmet on her and off they went.  Sam kept saying, "I saw a space shuttle" all day and "3-2-1-Blast off."   That night, I was carrying her and pretending she was a space shuttle and said, "3-2-1-Blast off" and she said, "Mama, you were funny!"

* * * *

When we picked Mia up at daycare yesterday, I had both Sammie B and Mia in the double wagon, and Sam reached forward and tickled Mia's belly and said, "Hello Mia Mia, Tickle Tickle Tickle."  Mia giggled, and Sammie B said, "I was so funny!"  Watching the two of them giggle together is, hands down, the best part of my day, every day. 

* * * *

Tonight, Sammie B dressed as Tinkerbelle (every day brings at least 3 different princess or fairy costumes around here lately!) and watched the Tinkerbelle movie.  Out of the blue, she declared, "I love fairies!  Mama, I love fairies!"   Then, she looked at me and said, "I love you, mama!"   Oh be still my heart.

* * * *

Everything I tell her that I need to do lately, she says, "I want to help you."  So, last night she "helped me" file a brief (I let her hit the mouse button to "send" it); tonight she "helped me" do laundry (she put the dirty clothes in a basket) . . . such a big, big girl.

* * * *

She's so imaginative lately.  She has this baby doll, and the other night she told me, "my baby isn't listening to me."  So I asked what we could do, and she said, "she needs to go in her thinking spot!" (which is where we put Sam when she doesn't listen, though we've only had to use it 3 times, usually the mere mention of it gets her listening . . . she's a pretty stinking easy kid to manage!).  So, we came up with a thinking spot for her baby, and I said "is she going to stay there for 5 minutes?" and Sam said, "no 10 minutes," to which I said, "wow!" and she said, "no, 18 minutes!"    Tight ship.

* * * *

She's decided (for now) that she wants to be a swim teacher when she grows up, and during her last lesson, she took a waterproof Elmo in with her, and we were sort of ignoring her, just listening, as she told Elmo, "put your face in the water!" "Now kick!" "You did it!"

* * * *

She loves having us make her stuffed animals/dolls talk, and now she's starting to talk for them too, which shows me that she's really finding confidence in her voice (which we've known for a long time was part of what was holding her back speech-wise, she knows her articulation isn't perfect and that she may be hard to understand, so it has held her back from trying at times, but well (shameless brag) . . . articulation is coming along nicely . . . she said the word "spanish" perfectly the other day . . . and confidence is increasing too . . . all making for this amazing explosion of speech).  Anyway, today, we were using her stuffed Simba and making him talk, and she took him by his shoulders, pulled him right up to her face, and said in the most serious way, "I saw you in a movie.  You were in a movie!" 

* * * *

Tonight, I told Sammie B I needed to run downstairs and get something, but then I'd be right back and I needed to ask her a question.  So, I ran downstairs, came back up and she immediately said, "I want to hear your question." 

* * * *

She also asked me tonight if her baby could have water.  She has a water cup by her bed, so I said, "why don't we wait until bedtime and you can share water with your baby then?" and she said, "that's a good idea, mama!"

I cherish her words.  I cherish the "I love you's" and the "I want to help you's" and the "Hello Mia Mia's" more than my own words could possibly convey.

Oh how I love her voice.  Her ideas.  Her opinions.  Her questions. 

Sammie B, you bring such joy to our lives.  With your words, your giggles, you. 

Saturday, September 29, 2012

My Four Year Old

She used to look like this . . .

And then I blinked . . . and she was one. 

I blinked again . . . and she was two.

And again . . . and she was three.

And suddenly, she's four.  Four. 

My dear, sweet Sammie B,

How is it possible that you get more amazing every day?  At four, you are just that . . . amazing.   I've thought all week about how I can possibly convey with words who you are at four, how much I love you, what you add to my life, or how blessed I feel to be your mama, and well, there just aren't words big enough for your magic.   Your smile.  Your giggle.  Your hugs.  The way you wrap your entire body around me when I lift you out of bed in the morning.  The way you suddenly lean in and kiss me, or say "I love you, mama."  The way you say "hello Mia Mia!" with such glee to your sister, the way you (occasionally) hug her and the two of you smile at each other.  The way your dada can get you laughing hysterically. 

Everything about you is Magic.  

At four, your four, you are pure magic.  Princesses.  Puppet shows.  Imagination.  Questions.  Opinions.  (So many opinions!).  

There are no words, my girl.  You are you.  Perfectly you.  Amazing, wonderful, fabulous you, and I am so, so lucky to be your mama. 

Happy fourth birthday, Sammie B.  You make my heart so, so happy and proud. 

You make my world go 'round.

- Your ever loving mama

Sunday, September 9, 2012

Random Reflections for You

- These two smiles make my heart skip a beat.  For real.

- I need an iPhone so I can take amazing pictures like that on my phone.

- Tomorrow is Sammie B's IEP, which I'm not super stoked for.  (Understatement!)  Of all the things on this journey, the things I could do without are, without question:  medical tests (duh), developmental assessments (and the reports that follow them), and IEPs.   Sitting in a room with a bunch of "experts" talking about your child's weaknesses just stinks.  All the way around.

- In preparation for the IEP, I went through last year's reports and goals and the written IEP.   Last year, at this time, we reported that Sam "occasionally" put three or four words together, but usually spoke in 1 - 2 word utterances or signed.  Wow.  What a difference a year makes.   This little girl speaks in full sentences, asks and answers questions, and so much more.   Yesterday, she put her head on my chest, and I said, "do you hear my heart going 'lub dub lub dub'?" to which she said, "I need a stethoscope."   Oh yes.  She said stethoscope, and neither B nor I knew how she remembered or knew the name of that!   Blew us away.   The sky is still the limit.   This little lady is not to be underestimated.   (Ironically, as I looked through her goals, the speech ones were the one area where I knew she'd met every single goal - and exceeded them - and the speech therapist is the one that showed up about 10% of the time last year . . . . oy).

- The other little lady in our lives -- Mia Mia -- has also been blowing us away.  She's become such a happy, chill little lady, so content to just crawl around and play on her own.  B and I commented yesterday that we couldn't have designed a more perfect little sister for this family.  As we swam yesterday, and Mia floated around, content with her floaties and pool noodle while I snapped pictures and B helped Sammie B jump off the side of the pool . . . over and over and over . . . I just marveled at Mia.  Her independence.  Her contentment.  Watching us help her sister, and demanding so little.  As my friend said, it's like we were all puzzle pieces, meant to be together.

- We've spent so, so much time in the pool lately, and I love it.  Last week, Sammie B swam four days in a row, this week she swam three.  It is so, so good for her, and fun for all of us. 

- Sammie B has developed quite the bossy streak, and it is charming.  So, so charming.  Mostly because B is usually the target of her commands, not me.  She's constantly telling him, "stop doing that dada," and "sit over there, dada."  I'm pretty sure if MY OWN DAD is reading this, this reminds him of another bossy little girl he once knew.

- I shared this one on facebook, but it totally belongs on the blog (mostly for posterity). . . as we sat and watched the Democratic National Convention last week, Sammie B said she wanted to meet Obama.  I said, "I'd like to meet him someday too.  Maybe we can try going to his house where he lives sometime," to which she said, "What will I wear?"  Oh my.  That's my girl.

- This weekend and last, we had family time in the pool and playing, but we also each got some one-on-one time with each girl, which was really nice.  Yesterday, B took Mia out on errands while I sat and played with Sammie B and some of her big girl games that we've had to keep put away when Mia's out (because Mia grabs everything).  That was so, so nice.  Much needed time, just me and my big girl.  And then today, Mia and I met one of my friends at a kid's museum for a little bit and then had lunch while B and Sammie B swam and picnicked.  PERFECT PERFECT.  We've made a very concerted effort to still do outings with just Sammie B ("special time" as we call it) but today was my first time planning a special outing for just me and Mia, as opposed to just spending time with her at home or out doing errands while B and Sammie B were out.  It is hard enough in this busy life to fit in family time, but we know too that we must always work to fit in "dates" for each of us with each of the girls.   And, that was what this weekend was all about (last weekend, we did the reverse, I took Sammie B out on a date, while B took Mia to the park).

- Tonight, as I walked around Mia's room with her snoozing on my shoulder before putting her to bed, all I could think was, "how is it that there are two little girls in this world that think my shoulder is the most comforting place in the world?"  I wouldn't have it any other way.  Oh how I love them.

Tuesday, September 4, 2012

World CP Day

Today is World CP Day.  Ellen, over at Love That Max, wrote a great post about what CP is, and what CP isn't.

The thing is, I do see so much beauty - every single day - in this life.  Our life that has been touched by CP.  Certainly not by our choosing, but it has been, and there is more beauty in this life than I can even put into words.  I feel blessed beyond measure to have been entrusted with Sammie B as my daughter.  Blessed to be hers. 

But tonight, I can't help it.  I'm just plain angry at at CP.  I'm angry that because of CP, my girl was the only little girl in the room at her back-to-school night who wasn't running around the classroom.  I'm angry because I know if she could run, she would have been.  Because I know she would have been having a blast (not that she wasn't, but still . . . )

I'm angry that I can't sleep tonight because all I can think about is what next school year will bring.  What our options are going to be, what choices we will need to make . . . angry that for her to be in a small, intimate classroom, we'll have to go with a special education class because the mainstream ones are huge and I know that she needs the extra support, even if cognitvely she can keep up with her peers -- she just learns better, performs better in small groups and one-on-one, and in our (bankrupt) school district, the rooms that can offer that are special education classes.  I don't want her to get lost in the mix.  But, I don't want her to be underestimated. I'm angry that I feel like Sammie B is so often underestimated, and I can't change that.  Angry because I know people will often underestimate her because of her physical disability.  Angry that some people will miss out on what a bright, capable little rockstar she is because they can't see past the physical.  

I'm angry that even the private schools we've toured -- the ones that supposedly cater to special needs kiddos -- are ill-equipped to deal with a child with a physical disability.  I just can't get over the fact that we have to feel like trailblazers in this world.  Trailblazers.  Even thought 1 out of every 268 children in the United States has CP.  Why are we trailblazing?

I'm angry that we still haven't gotten our house on the market, and lately, more than ever, as Sam scoots more ably around our home (we've had several "hey, where is Sam?" moments and we do NOT take those for granted, not even for a second) and as she gets a little better in her gait trainer, we KNOW we need to be in a single-level home.  I'm angry that this is not an easy process.  I'm angry that we are just one application in a pile of (probably) hundreds for a possible short sale, and I'm angry that the others consist of a lot of people that bought homes they couldn't afford and now want out.  I'm angry that we bought a home that we COULD afford, a home we love, but that we need out.  Angry.  I'm angry that the bank actually told our representative that to even be considered for a short sale, we have to fall behind on our mortgage.  Seriously?!  Angry that we want to do this the right way, and they are making it darn near impossible, in a most nonsensical way. 

I'm angry that with Sam, we know she has CP in the sense that CP is an umbrella term for a movement disorder, but that we don't know why she has it (e.g., there's no evidence of a birth injury or stroke or of any kind of brain injury), even after three years of tests.  I'm angry that I can't just know that she has CP, say "that's all," and move on, because we have to keep testing.  I'm angry that we are in a position that the thought "I wish we just knew it was just CP," is one I even have.  We have to keep testing in case there's something we are missing, something that can be treated.  I'm angry that I have the names of a bunch of genes swimming in my head because tomorrow, I'll take Sam for more blood work for tests to see if she has any mutations in those particular genes.  I'm angry that some of those mutations would mean some pretty scary disorders. 

I'm angry that she has to go through this.  I'm angry that I'm sitting here wishing that I just knew whether "World CP Day" is our "day" or if there's some other "Day" we belong to, and I'm angry that after three years, there's still so many questions.  I'm angry for her.  I'm angry for us.  Mostly, I'm just angry at "it," whatever it is.

In this journey, emotions ebb and flow.  And lately, I'm not angry often.  Mostly, I'm at peace.  But tonight, I'm angry. 

She is magic.  Perserverance.  Hard-work.  Giggles.  Love.  Hugs.  Kisses.  Joy.  Humor.  Magic.  She is amazing, just as she is.  There is no doubt about any of that.  Lately, she looks at me and says, "I luff you, mama," and my heart melts into a puddle on the floor and all feels right with our world.

We have been entrusted with her.  And for that, we are blessed.

But, tonight, I'm going to let myself be angry.  Tonight, it is okay that all I can think about is that if I could take CP away from her, I would.  In a heartbeat. 

Tonight, it is okay that all I really want to do is go crawl into her bed with her and lay there and cry for her and for us.


Sunday, September 2, 2012

Sunday Funday

We have a water taxi within walking distance of our house -- it only runs from Memorial Day to Labor Day and only costs $1/person.   And, I'm kicking myself that this year, we only rode it once.  Anyway, despite being busy and overwhelmed and tired last weekend, I was determined to fit in a "vacation Sunday" which is what I like to call it when we do something fun, touristy, and vacation'ish without even leaving our city (or in this case, without even leaving our neighborhood!).  I stayed up super late to work on Friday night (as in 2:30 am) so that I could spend the rest of the weekend with my family, mostly work-free.  It was so, so worth it.  B and I even squeezed in a date night -- we don't have a lot of sitters we feel comfortable leaving both girls with, but we decided to put the girls to bed and then just have a sitter come while we went out for a drink and late movie.  It was perfect.  A perfect end to a relaxing (sort of) Saturday, and then we followed that with a Sunday Funday on the water taxi.

All week long, I reflected back to the hour we spent on the boat, the girls' hair blowing in the wind, both of them squealing with glee, and I just felt so, so blessed.