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.