Wednesday, August 29, 2012

Mia Mia

Oh Mia, how is it possible that you've been on this earth nearly ten and a half months?  Time is just whizzing by. 

In the last month or so, you've gone from a "no thanks on the cuddling" kind of girl to a total snuggler and I love it.  You play, play, play and just crawl around and explore everything until suddenly, you need some "lovin" and you come crawling over, and put your head in your dada's or my lap, and just lay there for a few seconds, until you are off again.  And, when I drop you off at day care in the morning, I put you down, and you crawl as fast as you can to your teachers, pull yourself up to stand (using their clothes) and lay your head on their shoulder, like you've just missed them so much.  You, my darling, have, without question, become a snuggler.

You are so curious about everything.  Your dada and I joke that you are a total busy body because when we are out at restaurants or stores, you make friends with everyone, and are constantly craning your neck to look around us to see what everyone else is doing.  You point to things and then look at us, waiting for us to tell you what it is, and then smile so big when we do.  It is a fun little game.

In the days after your sister's MRI last month, when I'd also just lost my Aunt Sandy, I was so, so sad, and there were days I didn't really want to get out of bed.  Worried about the MRI, sad about my aunt, grieving for my cousins who'd lost their mother, and my mom, who'd lost her sister, missing my own mom -- I was a mess.  That week, I worked from home some, and in the late afternoons, I put you in bed with me for naps.  I often couldn't fall asleep, but I just laid there, watching you breathe, watching you sleep, and somehow, I felt calmer.

You truly have, in a way that words just can't describe, brought a different sense of calm over this little family in the last ten months.  Your dada and I have both said so.  I can't explain why, but you have. 

And, tonight, at not quite ten and a half months old, you took your first independent steps.  Just three or four at a time, but you did it!  I won't get caught up in the working mama guilt that I missed the first ones because they happened while I was stuck in traffic coming home.  That doesn't matter -- when I saw you do it again, just a little while later when I got home, the joy was just the same.  I promise.  I am so, so proud of you.

When (if) you read this someday, there's something I want you to know.  Out of our little family, guess who was the most excited and cheered the loudest as you took those few steps tonight?  Your big sister.  And, later, when we asked her who was your biggest cheerleader, she said, "me!"

You two girls will write your own stories, but I hope you always cheer each other on, through your own unique journeys, just as she cheered for you tonight.

Thank you, my darling, for every ounce of joy and calm and love you've added to this little family.


Tuesday, August 28, 2012

All the Things I've Been Meaning To Write About

I have so much I want to tell you.  I'd like to (finally) finish my post about 10 months of Mia (her 10 month "birthday" passed over a week ago).  I want to tell you how they, both of my girls, blow me away with their love and affection.  Sammie B constantly saying "I love you, Mama" and spontaneously grabbing me for hugs and kisses. Mia, the way she stops playing to crawl over and lay her little head on my lap for a few pats on the back.  Sometimes, I wish I could just sit, and hold them, forever.

I want to tell you that every single day (really!), I have moments where I just can't believe these two little wonderfuls are mine.  That the amount of love I feel for both of them, each of them, overwhelms me in so many ways, so very, very often. 

I want to tell you how lately it just stinks that as Sammie B's fourth birthday approaches, I have to start planning ahead to her IEP.  Why oh why does this journey have to include those meetings?  At birthday time, no less.  Stinks.  I haven't written much about Sammie B's preschool over the last year . . . the thing is, it is fine.  Not perfect, not horrible, but fine.  When B and I decided that the public preschool program was the best option (after considering so many options), we knew it was imperfect.  We knew that the programs that were available to us were ones where (1) Sam would either be the furthest behind her peers physically (indeed, the only "non-ambulatory") kiddo in the class or (2) the furthest ahead cognitively, by far.  We opted for the program where we felt like she'd be challenged cognitively, though she is the only non-ambulatory kiddo in the class (I hate that word).  At times, we've felt like the teacher is "overwhelmed" by Sammie B's physical delays, which has shocked me.  CP is not new.  CP is not rare.  And so, so many kids with CP are cognitively age-appropriate.  We shouldn't be trail-blazing here, but we are.  Anyway, her program is fine, so B and I made the desicion that for now, that was enough.  It's enough that she loves her two hours of preschool 4 days a week, it is enough that she gets the social interaction there and is learning the pre-school curriculum, and we supplement that with private therapies with the therapists we've chosen.  Those amazing individuals we've put on "Team Sammie B."  So, it is working.  We feel like the public preschool program (which is only 9 hours/week) + her private therapies + the invaluable one-on-one she gets with her nanny + swimming and the fun stuff we do = the right set of "stuff" for her right now.  We took the summer off from school and are glad we did -- she had extra time for the zoo and the fair and fun stuff.  But now, school is back, and it is, we think, fine.  Working.   Not without a lot of homework (and sometimes headache) on my part (like when we found out in JUNE that the district's speech therapist hadn't been to see Sammie B at school since FEBRUARY despite the fact that her IEP entitles her to one hour PER week) . . . but these things -- my "homework" -- are all just background.  I have an ongoing dialogue with the District's "compliance" specialists (they make sure the District is in legal compliance with IEPs), and while it is unfortunate that I've had to have that ongoing dialogue, so far, it has worked. 

I want to tell you that I just wish that "September" could just be about her birthday, about celebrating her, and that I didn't have thoughts of IEPs swimming in my head.  The background noise. 

I want to tell you that even though her current program is fine, I'm worried about the next steps.  I'm worried about the programs that will be available to us in the future.  I worry that fine will stop being good enough, particularly when school becomes an all day thing, and we have less time outside of school for therapies and supplementing.  I'm worried that without the supplementing, she won't be getting what she needs, and I do not want to fail her.  I'm worried that "better than fine" may not exist in our public school system past pre-school and that we won't find that place where Sammie B will thrive.  I worry.  I want her to be in a school setting where she's supported physically, challenged cognitively, and never, ever, ever underestimated.  A place where her friends and peers will see her magic, and foster her development in amazing ways.  A place where no one will impose limits on her, but encourage HER to reach for the stars. 

I want to tell you that we are at the beginning of more intense potty training efforts with Sammie B, and I'm worried that we've let her down by not starting sooner.  We've exposed her to the potty for awhile, and have sat her on it in the evenings every night for a long time, but with absolutely no pressure.  We knew that with low-tone, potty training may take a little longer than normal, but as her fourth birthday is fast-approaching, suddenly, I worry that we've let her down.  That we should have done more, sooner. 

I want to tell you that sometimes (often) I feel like I'm failing one of my little girls or the other.  I feel like because Mia is oh-so-mobile and into everything (in a way that is just blowing our minds), we limit what toys Sammie B can play with when Mia is around.  The other night Sammie B wanted to play with play dough, but Mia kept eating it, so we put it away.  Sammie B asked to play in her bedroom ("with Mama") all weekend, and we had so little time.  I worry that I'm not playing enough with Sammie B.  Not giving her the one-on-one time she needs, the time she deserves to get to sit and play with her big girl toys.  I feel sad that because she needs physical support from us that she can't play as independently as her peers might be able to, and that this often means she doesn't get to play with the toys or games she wants to play with because they aren't safe with Mia.  I feel bad that I don't have the one-on-one time for Mia either.  I constantly feel split, and like I'm not giving either one of them enough. 

I want to tell you that lately, Mia is extra cuddly and clingy and everywhere I go, she crawls after me, pulling at my legs, whining to be held, and that I pick her up and love her as often as I can, but there are times when I'm doing other things, like getting ready for work, or making dinner, when I don't pick her up, and in those moments, I feel so guilty. I feel like I should be holding her more.  Like I'm not giving her enough. 

I want to tell you that lately, work is kicking my ass.  This is an important year for me, and I'm determined to make up for lost time, career-wise, from the bed rest and maternity leaves, but work is kicking my ass.  It just is.  And, my answer to "balancing" work and life is so often that I cut out of work at a "normal" time (5:30ish) so I can come home and play with the girls and do bath time and bed time and then turn back to work.  I'm glad that I'm at a firm where I have that flexibility.  I recently got some killer compliments from a notoriously hard-to-please partner, but I'm afraid to pat myself on the back too hard.  I want to tell you that lately, work has been so, so fulfilling and challenging and fun, but that dammit, I'm tired, and all too often, I feel like I'm not giving work enough either.

I want to tell you that at night, while I sit at my computer and work and the rest of my family sleeps, I check our video monitor over and over, just watching them sleep.  And that at night, before I go to bed myself, I sneak into each of their rooms, just to hear them breathe.  Just to marvel at them. 

Sammie B reading in bed. 
I want to tell you that Mia is growing up so quickly.  That she's so quickly changing from baby to toddler (a toddler!) and that she's going to take off walking any second now and that it is all blowing me away.  I look at her and wonder if she's my last baby . . . I honestly don't know.  I know that I apparently suck at gestating (see bed rest posts, friends!) . . . and that I already feel split in 8 million directions and like I'm not enough and that I can't do all this . . . and I wonder if we're done.  And, I don't know.  (I know we are done for awhile, though!). 

I want to tell you that before Mia arrived, I had no idea how I could possibly love another little person as much as I loved Sammie B.  That I worried that I wouldn't have enough love to give.  I want to tell you that even though I so often feel like I'm not giving them "enough" of whatever . . . cudddles, play, attention . . . that I never doubt that there's enough love.  For my heart grew 8 zillion times each time I gave birth, and there is, no question, no shortage of love in my house.  For I have two little wonderfuls and my heart could just burst with love for them.  Both of them.  Each of them. 

I want to tell you that the other morning, Sammie B laid in her bed and watched me as I went through her closet to find something for her to wear to school, and she said, "How about a princess dress?" and I said, "I'm not sure you have any princess dresses clean," and she said, "Maybe a party dress then."  The girl's got style. 

I want to tell you that the other day, Sammie B looked at me and said, "Mama, you are a princess," and I knew, in that moment, that there was no way any other moment in my day could top that.  That for the rest of the day, even as work continued to kick my ass, I'd feel like a princess. 

I hope they both always love me this much.  I hope that in their eyes, I can always be a princess, even on my most imperfect days, for they are most certainly princesses in my eyes.  I hope that to them, I am always enough, even in the moments that I feel like I'm not. 

Tuesday, August 14, 2012

Three years, three first days . . .

December 2010, Sammie B's first day of her EI Preschool 
October 2011, Sammie B's first day of her new preschool program
(she'd just turned 3!)
August 14, 2012, Sammie B's first day of her second year of preschool 

Today was Sammie B's first day back at preschool after a much-needed summer break (we are so, so glad we made the decision for her to skip the extended school year program and have some time off!).   We had our annual first-day-of-school brownies (carrying on my own mom's tradition), Sammie B donned a new outfit, AND she got a first-day present.  A good day indeed!

We adore the orthotist that painted our KiddieGait braces purple!
Her first day lunch -- her pick -- hot dog and chips, with a party hat and present!!  (She's on a princess kick right now!)
Princess Sammie B. 
Every day lately, she tells me, "I'm a princess, mama."  Then, she asks me, "What's my princess name?" and we have to make one up together (well, I have to make them up, until I suggest one she likes.).  Today she was "Princess I went back to school and rocked it."   

Monday, August 13, 2012

Exuding Joy and Love

Thanks to everyone for your kind, warm, encouraging words after my last post.  Getting anything other than "normal," "squeaky clean" results has knocked me down.  After three-and-a-half years of testing with "normal," "normal," "normal," results, I cannot lie -- getting these MRI results back hurt.  As a mother, I think it may just be impossible not to worry.  For the anxiety and worry to not, at times, threaten to consume us.  Certainly, I -- someone who simply does not deal with uncertainty well -- suffer more in these times, than others might.  B would say that I fall down harder, and that may be so. 

This all comes at a time when I'm slammed at work, working for a new (and intimidating) partner and wanting to impress him (particularly with our upcoming reviews).   So, it has been, to say the least, a trying week.   I find that I'm at my best when I'm up and doing, but getting up and doing has been hard.  I find myself catapulted back into the worry of the sort I did three years ago, when we first started this journey, tempted to google myself into a frenzy (but managing not to) and wanting nothing other than to just lay and hold my girl(s!).   Yet, I can't.  Not all the time anyway.  

But through it all . . . our magical Sammie B just exudes joy and love.  She's the same little girl she was the day before those results, with the same bright future.  She is NOT her MRI.  She is joy and love, and somehow, she always knows just what her mama needs.   We've had so many wonderful moments over the last few days, and while I told myself I'd remember every single one of them, I'm sure some have slipped my mind, but I'll share the ones that come to mind:

Last week, we put Sammie B in her gait trainer in the den and asked if she wanted the brakes on (usually she does) so she wouldn't move, but she said "no," and proceeded to move herself around quite a bit, even turning it all the way around, which is no easy feat.   Her faithful little sister even gave her a little push when she needed it!  As Mia gets older, I can see these two will be allies for sure!  It's fun to watch Sammie B get into things in places she's never gotten to explore independently.  This gait trainer, though at times she may act as if it is her nemesis, is no doubt an amazing gift toward independence.   After going through all the DVD cases on our entertainment center (and throwing a few in the floor), as she marched herself right out of our den and into the dining room, she said, "bye bye mama," with her little sister trailing behind.  Exuding joy.   

(I wish the pictures were better quality and my house neater, but that's not the important stuff, right?!)

Friday night, we went to a friend's house for dinner, and they had a small stair case between their living and dining rooms, with shorter than typical stairs and Mia kept crawling up . . . Sammie B said "I want to crawl up," and with just the tiniest bit of assistance, she did.  And, when she got to the top, she threw her hands in the air, yelled, "I did it!  I made it to the top!" and we all broke into wild applause to which she responded, "thank you thank you thank you!"  And, when her sister crawled up to the top the next time, Sammie B was quick to compliment her as well . . . with "Mia!  Good job!  You made it to the top!"   Exuding love.  Exuding Joy.  

Saturday afternoon, I decided to take a nap with Sammie B so that I could stay up late and work (boo!) and just as I was dozing off, I was woken up by a quick little peck right on my lips from the one and only Sammie B.  Exuding love.  

We are always looking for ways to get more protein and calories in Sammie B, who is a picky little bird when it comes to eating.  Sunday, B came home with a brownie fulllllll of protein, and she and B took turns throwing pieces into each other's mouths.  The giggles were priceless.  Exuding joy.  

These moments are the moments that will define this little family.   The joyful moments so, so full of love.

Many, many months ago . . . I saw this on another blog, and I sent it to another mom friend whose son had an abnormal MRI.  It gave me chills then, and does now so more than ever:

"The MRI of [your daughter's] brain is not a map of her future.  It doesn't say anything about her learning to wave goodbye or blow kisses with her right hand, or her extraordinary flirting skills.  On these points, that damn test is curiously silent."

Sammie B exudes love, joy and magic.  And on that, that damn MRI was silent.   

I am eternally grateful to have this blog to come to, to share my feelings, and to know that so, so many are cheering my sweet girl on.  From the bottom of my heart, thank you.  

Wednesday, August 8, 2012

We Keep On.

After over three years of medical tests, and nothing but "normal" results, hearing that there is, indeed, something structurally abnormal about our daughter's brain has got to be the some of the hardest pieces of news I've ever received.

Sammie B's cerebellum - the part of the brain that controls movement, coordination, and balance - is on the smaller side, and not growing as fast as other parts of her brain.  That's the hard part to hear.  The words that literally made the blood rush from my face today, my stomach get queazy, and the tears immediately start pouring down my cheeks.  I think B and I both fully expected "normal" results from this MRI, so this one knocked us over (me more than him, he is a model of strength in these moments, no doubt; I'm a model of a puddle on the floor!).   

The better news is that our neurologist said the images and these results don't change his optimistic view of her future.  We knew this was likely something with her cerebellum because it is her motor development that is affected.  Her balance.  Her coordination.  Her movement.  The images didn't surprise him. 

He believes she'll only continue to progress, as she always has.  That with practice and hard work and all the things that she does anyway, she'll progress.  Things will get easier for her.  That she will live a long, bright future. 

Progressive, denenerative and fatal are the three words along this journey that truly, truly have the power to knock me to my knees -- words that I can hardly speak out loud when it comes to my child  (words that no mother should ever have to worry about in relation to her child) -- and today on the phone, the neurologist said he was confident that none of those apply to whatever is going on with Samime B. 

We have some follow-up blood work to do to rule out some things, but again, the neurologist said he fully expects those tests to come back negative.  We already had some blood work done while she was having the MRI and so far, the ones that have come back have been negative . . . We'll have more blood draws in the coming weeks and awaiting the results of everything is sure to cause me some restless nights and fleeting moments of panic, but I know I have to figure out a way to keep the worry from paralyzing me.  From letting it stop me from enjoying the right now.  

I have to figure out a way to keep the worries of tomorrow from robbing me of the joys of today, and there are so, so many joys in our every day. 

So, we take this news, and we keep moving forward.  Inspired by her.  Knowing that only she can reveal her destiny to us.  Knowing that the sky is the limit.  Knowing that no test, no MRI image, can tell us what she will or won't do.

We know so much now about the idea of neuroplasticity.  We know that when one part of the brain is deficient (a dumb word in my book, at least when referring to party of my girl's body) in some way, that other parts of the brain can be "re-wired" to take over the functions of that other part of the brain.  We know that people can be born without cerebellums and live long, healthy, full lives.  And after all this next round of testing is finished, we'll meet back with the neurologist/movement disorder specialist and we'll talk about how these findings can help us help her, and I truly, truly believe that knowledge is power.  Even if, at first, the knowledge knocks us over.  It is what we do with it that counts, right?

We keep on keeping on, inspired by her smile, her grace, her determination, her perserverance.  Her.

Tuesday, August 7, 2012

Memorizing Them

There is nothing like the death of a loved one and serious medical testing on your child (all in one week) to remind you of the fragility of life. 

I am, in short, a mess this week.  I'm having a hard time focusing on the (piles and piles) of work I have to do.  All I really want to do is run away somewhere with my little family, just me, B and the girls.  I want to soak in every.single.second with my girls, to somehow commit every moment of each day to my memory so I can never, ever forget how each of them is in this very moment.  The way they look.  The way they sound.  Everything.

Tonight, when I came home, I told Sam I needed a hug, and I leaned into her and said, "I hope you always feel my love.  Do you feel how much I love you?" and she said, "yeah, mama" and pulled me even tighter and she just held me.  And later, as I giggled in the bathtub with Mia (Sammie B swam today so she got a "get out of bath free" pass), as Mia climbed all over me in the bath, I could hear Sammie B and B playing in the next room, and Sam saying, over and over "that was so fun!" 

Their giggles.  Mia's little panting.   The way Mia smiles with utter and total glee as she's getting into something she's not supposed to.  Both of their smiles.  The way they each dance.  Mia, bouncing her knees and waving one arm, Sammie B shaking her hips from side to side while saying "It's a DANCE PARTY!"  Their hugs.  Their kisses.  Sam's words.  Her questions, which continue to amaze us every day.

I want to memorize every bit of it so that the memories of them now, exactly as they are, never, ever fade.

Sunday, August 5, 2012

She Was So.So.Brave

Thursday night, I read Sammie B the "Curious George Goes to the Hospital" book and I told her that the next day, she'd be going to the hospital (the same one where she does PT, so I explained that we'd go to a different part of the hospital).  I told her that we'd meet nice doctors and nurses and maybe some other kids, and that I wasn't sure what would happen, that they might "poke" her  but that if they did mama and dada would be right there with her . . . (the idea of being poked made her cry and ripped my heart out).  I told her that she'd be safe and we'd be there, and she'd get sleepy and take a nap and they'd take pictures of her body, and then she'd wake up and we'd be right there, waiting.  

The next morning, we gave her a new Curious George (dressed as a doctor) stuffed animal and left for the hospital, dropping Mia at day care on the way.  Sammie B was, in a word, brave.  The entire morning pretty much went off without a hitch, and there wasn't even a single tear shed (by Sammie anyway).  We convinced them to do the gas anesthesia BEFORE sticking her as we've watched them poke and poke and poke to get a vein before and didn't want her to have to go through that.   Even when we had to say our good-byes and they took her back, she was brave.  Not a tear (from her).   I watched from the door as long as I could and shed a few of my own tears though!

She made me so, so, proud.   It was a forty-five minute scan and it took them about an hour and a half to call us back . . . it felt like forever.

When they called us back to recovery, my legs couldn't carry me fast enough.   As I got there, she was starting to wake up and stir, but opened her eyes, saw us, and went right back to sleep . . . snoring.  Sammie B is a sleeper (she can sleep till 9 or ten on the weekends!) so B and I looked at each other and said, "this could be awhile!" We sat next to her for an hour, her sleeping, us just watching her.  There was a moment when I remember sitting in the NICU, next to those same machines . . . waiting.  Waiting for someone to LET OUR GIRL GO HOME with us.  And, wow.  What an amazing (almost) four years have passed since then.  Yes, there's been intense worry in that time, yes there's been some hard moments, but my oh my she makes it easy to be her mama.  Because she is so, so amazing.  

So, as I think back to her MRI on Friday, I'm just blown away by how brave she was.  And, once again, I find myself inspired by my big girl, and learning from her.  Because, as we wait for results, I too am trying to be brave.

Sammie B waiting for time to be taken back for her anesthesia and MRI, with the same stuffed Cookie Monster that was in her bed with her in the NICU, with her during eye surgery, and with her during her first MRI in 2010.  Oh Cookie, when we bought you, I was pregnant with Sammie B, and we had no idea what this journey would be . . . . you are lucky to belong to such a brave little girl, just as I'm lucky to be her mama.

(PS. they called us from day care to come get Mia during the middle of the MRI because she had a rash -- first time that has happened -- they understood that we couldn't get there right away and were totally fine with her staying, but life has a funny way of timing things, right?!  WHAT A WEEK.)

Thursday, August 2, 2012

August 3

Back in April, we took Sam to see a new pediatric neurologist who specializes in movement disorders who had recently joined the faculty at our Children's Hospital.  We'd seen him in a documentary (about one of Sammie B's buds) and there was something he said about how complex eye movements and vision are in kids with movement disorders that just made sense.  That described Sam's eye movements and visual tracking in a way that no other doctor had ever seemed to understand.

We knew we had to take Sam to see him.  Short story is did think it is important for us to do some more testing, though he's conservative in what he wants to do, and like us, doesn't want to test just for testing's sake . . . but only to run tests that if they showed any "answers", could tell us something that could HELP Sam.  So, we scheduled the first ordered test - a repeat MRI (her one and only MRI was at 16 months and was normal) for May 29, and I dreaded it.  I literally lost my appetite thinking about it, and in the days leading up to it, I lost over 6 pounds.  

Then, the date came, my mom came into town for moral support, we had our support system in place, and then Sam got a fever, and we had to cancel and reschedule the MRI altogether.  August 3 was the next available date.  All summer "August 3" has rang in my head as a day I was dreading.   Dreading.  Because I hate that my girl has to go through this, be poked, prodded, put under anesthesia, etc. so that doctors can look at her brain.  Because I'm afraid of the results.  Because while everyone assumes we want an "answer," the truth is, sometimes people get answers they don't want, and well, that's more terrifying than not having an answer.

And now, here we are.  The eve of August 3.  The day I've dreaded for months, and I'll take my sweet, magical Sammie B for an MRI while my mother is across the country burying her little sister.  Because this week, my Aunt Sandy died at the age of 59.  While my girl undergoes a test to see if her brain is "typically" developing, my mom will be at the funeral of her second younger sibling to die too soon.  I can't really even wrap my head around the fact that of my mom's family of five kids, there are only three left.  I've cried all week, debated about trying to reschedule the MRI so I could go to Alabama for the funeral (but the next appointment would again be months away), knew that I just couldn't, knew that my aunt would understand, knew that she'd want me to be RIGHT here, right with Sammie B, called my cousins sobbing to apologize, hoping they'd understand too . . . hoping they'd tell me that they know she'd understand (and they did) . . . so I won't be there, I'll be here.  With my girl, but part of my heart will be in Alabama.   

Who knew that this dreaded date would be so, well, sad?!  So, tonight, I'm filled with a whole lot of "it's not fairs!"   But, I'm going to push them aside, crawl into bed with my Sammie B (who gets to sleep with us tonight as a special treat) and we'll get this thing behind us.  And, I'll do my best to not worry about the results of this test.  

I'll do my best to just focus on her.  What she's doing.  She's here.  She's amazing.  She's doing and saying new and amazing things every single day, and no test, no "answer," can take that from us. 
Because no test can tell us what this child can or can't do, will or won't do, or who she will become. Because there's no test in this world that could tell us that this girl is anything other than pure magic.