Monday, October 31, 2011

Fourth (and First!) Halloween

Our little chicken (2008):

My Sammie BEE (2009):

Rockin' with Mama (2010):

Minnie Mouse (2011):

Halloween was just infinitely more fun this year because Sammie B really 'got' it. She picked what she wanted to dress up as, we practiced saying "trick or treat" and talked about pumpkins, etc. and she got SO into it. She even watched "Nightmare Before Christmas" with B and LOVED LOVED LOVED it. We had the cutest conversation about trick or treating:

Me: When its Halloween, you'll go to people's doors and knock and then say "trick or treat" and they'll give you candy! So, what will you say?

Sammie B: THANK YOU!! YUM!!!

Me: That's what you'll say when they give you candy, but what do you say before that?

Sammie B: Trick or treat! Thank you!! YUM!!

She was a little shy tonight when we actually WENT trick or treating (just to a couple homes of people that we knew) and said the "trick or treat" part so quiet it was nearly inaudible, but her "thank yous" were loud and clear. Sweet girl.

And, this little one had her FIRST halloween tonight - she slept through most of it, then woke up (as we've found is her norm) FREAKING OUT in that "must eat right now" sort of way. She's got a fiery little personality and we've dubbed her "Mia Monster." Even Sammie B has joined in on the "Mia Monster" trend.

Happy Halloween from Sammie B, the Mia Monster, and parents!

Wednesday, October 26, 2011

On the Day You Were Born

Even though I'm a little (um, a lot) sleep deprived, I want to write about Mia's birth while all the details are fresh in my head, so here goes.

On Monday, after Sammie B's first day of preschool and celebratory lunch, I came home to do my daily kick count (for those not in the know, "kick counts" mean laying and counting baby's kicks for an hour - and there should be at least ten). I got ten kicks, but they just felt weaker than normal. I'm a worrier like no other, so I called my doctor to explain and asked if she was worried. She wasn't, and said that Mia had probably just dropped, but told me that she knew I would worry so that I should just run to the hospital and ask to be monitored for 20 minutes and that she'd call ahead and let them know I was coming. (Making this my FOURTH trip to Labor & Delivery during this pregnancy). So, once again . . . off I went. I told B there was no reason for him to go -- nothing about this trip indicated this would be "it" so he came home to hang with Sammie B while I drove to the hospital, thinking I'd be back within an hour or so for our pizza dinner and continued celebrations!

As I was driving to the hospital, suddenly baby Mia was moving and grooving and kicking up a storm. I called B and said, "this is silly, I should just go home, right?" and he said, "no, just go, you'll feel better." So, I did. And, for 19 minutes of monitoring, Miss Mia behaved like a champ. Then, literally AS they were about to take me off the monitor, her heart rate decelerated. For a mama of a child with CP, decelerations are a scary thing (Sam had many during my labor with her, and I've often since wondered if one of those were the moments was a sign that she was in distress that caused her CP). I tried not to panic, and the nurses said they weren't panicking, and the doctors said they weren't, but they wanted to monitor me a little bit longer, so I stayed.

And, then, out of nowhere, I started having contractions. And they kept getting more and more painful. B was on stand-by, our childcare for Sam was on stand-by and we were just kind of waiting to see what would happen. The nurses all predicted this was "it" and baby was coming. I had one contraction that was loooooong, and Mia's heart went down again (scary!) so they decided to keep me overnight. Then, at 3 am in the morning, the contractions just stopped. At 6 am, they were discharging me. I was texting with B, joking about something on Twitter, and just waiting on the discharge papers when . . . Mia's heart rate went down again. And this time, the quick fixes (flipping me to my side) didn't get it right back up and like 7 people came running into my room. They put an oxygen mask on me. I watched as her heart rate went down and I panicked. Like the worst panic attack of my life. I was on oxygen so I couldn't talk so I dialed B's number and a nurse told him to get to the hospital. After I managed to calm down (you know, deep, slow, calm breaths when you are SCARED TO DEATH and SOBBING), Mia's heart rate normalized.

My doctor came, explained that Mia was just not tolerating contractions and that this wasn't that uncommon, but that she didn't want to take any chances. She wanted to deliver the baby, by c-section, that day. Understandably so, I started really worrying about these decelerations and what they meant, but as my doctor had told me before - out of every 1,000 births that have abnormal heart rate tracings, only TWO of those will statistically end up with CP. TWO. I could go on and on about how THAT makes me feel. (You know, like WHY did Sammie B have to be in those TWO? Why MY girl? My magical, amazing Sammie B who I WISH didn't have to struggle so. . . . but I'm truly, truly trying not to go "there" now.)

So, we scheduled the c-section for noon. At 8:06 am, B texted me, "parking. I'm here." He got to my room about 8:15, when Mia's heart dipped a little AGAIN (during a small contraction) and my doctor said, "I don't want to wait, I'm delivering you now, let's take her to O.R. 3." So with very little time to process what was going on, B was suiting up in his fancy c-section outfit, and I was wheeled away for an epidural. And, Baby Mia was born at 8:50 am, less than 45 minutes after B arrived at the hospital!

She came out screaming and pink, and I sobbed listening to her. Laying on the O.R. table, I couldn't help but remember my Sammie B coming out NOT crying. Those agonizing minutes (seconds?) of waiting for her to cry. And, this time . . . this time my doctor had been proactive and fast, and my baby was screaming. B said he kept running back and forth from her to me - to see her, to hold my hand (he says I was most definitely crying harder than her). It was all intense and surreal and there were just emotions I can't probably put into words. B cut the cord, we held her right away, she got to go to recovery with me, she was in our room at the hospital. All things we didn't get to do with Sammie B . . . and even though I know these were Mia's moments, I couldn't help but flashback to Sam's birth and the NICU stay. I couldn't help but wonder if the doctor that delivered Sam had been faster, more proactive, and rushed me to a c-section after the decelerations, if my girl would still be struggling. So even though I don't want to go THERE, it has been hard not to.

Sammie B arrived at the hospital to meet her little sister just hours later, and that goes down into my "favorite moments of all times" category . . . she was absolutely over the moon DELIGHTED. Squealing, laughing, loving. We asked her if she wanted to hold her sister, and she said, "yeah, wash my hands!" (She remembered this from the movie we watched at her Big Sister class!).

And then, she held her. And my heart melted. Seeing my two girls - my daughters - together for the first time. Absolutely magical and amazing and all things wonderful.

Sammie B visited us each day in the hospital, and each day arrived excited to hold her little sister. The second day, I'd even sent Mia to the nursery for a little bit, thinking it would be nice to spend a few minutes alone with Sammie B (who was missing mama terribly while I was in the hospital and kept asking for me to come home). But, as soon as she arrived, Sammie B was looking everywhere for "baby Mia" and wanted to go get her. And immediately said, "mama, wash my hands!" (Does she melt you like she does me?) Each day, she just wanted to hold her sister. And I just wanted to hold them both!

After the first night, B slept at home with Sammie B, so Mia and I were alone in our hospital room. It may have been pregnancy hormones, but on that first night we were alone, I laid her down on my bed in front of me, and I poured my heart out my youngest daughter.

I told her that I was scared. I told her about her magical big sister and how much I thought she'd love her. I told her that her big sister was already madly in love with her. I told her that her sister had been the center of my universe for three years, and that I was worried and scared about how I would handle having TWO centers to my universe (because there's no doubt, they will both be at the center of my universe, where they belong!). I told her how her sister had shaped who I am as a person and as a mother, and that there were pieces of me that were just always going to worry too much. I told her that I was sorry that on HER day, her birthday, my mind kept going to her sister's birthday and wondering how things could have been different. How one different decision might have changed the course of Sammie B's life . . . and maybe, just maybe, meant she'd have struggled less.

I told her that I knew she'd learn so much from her big sister, and that she'd teach her many things too. That I couldn't wait to watch them grow together, and that even though right now, I felt overwhelmed by the prospect of mothering two little girls, that I felt quite inadequate for the job, that I knew that by having Miss Mia, I'd just given Sammie B the greatest gift of her life, and that the two of them would always be amazing assets to one another. As I talked to Mia, I sobbed. And somehow, all the fear I'd felt about how I'd love another little girl just melted away. Suddenly, I felt such peace knowing that I just would. My heart felt fuller than ever before, and I looked at Mia and just felt so in love and so, so eager to take her home and have my little family all under one roof. Home.

And, during our little talk, I promised my Mia that just as Sam is writing HER story, I promise to try, every single day, to let Mia write her own too. To not constantly be thinking about how things might have been different for Sam if her birth had been different. To not look at Mia's milestones and wish they'd come easier to Sam. I know this won't be easy, but Mia deserves it.

And, more than anything, I just feel so, so blessed to get to be a part of two little girl's - my two daughter's - stories. I can't wait to watch them unfold.

My sweet Mia, I am already so in love with you, and I look forward to each and every day watching YOU find your place in this world and our family, and to watching you and your sister become friends and teach each other amazing, wonderful things. And, I have no doubt that you will teach ME things too, just as your sister has. While I hope that your story and your sister's are always intertwined, yours is yours and hers is hers. And, I'm just playing a supporting role to both of you!

Our little family of three is now one of four, and while I have no doubts the moments of being overwhelmed will come and go, it all feels so fabulous and wonderful.

Tonight, Sammie B and Mia laid in the floor together, with Sammie just playing with Mia's toes, and I looked at B and said, "can you believe they are both ours?" And my universe felt perfect, and centered . . . with two centers.


Tuesday, October 25, 2011

Just a Quickie I want to Share - Some Kids Wear Leg Braces

I recently bought this book for Sammie B (after a friend posted about it on facebook):

I also bought copies for all her cousins. (Your copy may be coming to a mailbox near you soonish!)

Guess what? Sammie B LOVES it. I showed it to her, read her the title, and said, "do you know anyone that wears leg braces?" and she said, "Sammie B!" Then we read it together, and when I turned to the pages with kids with walkers and braces, she smiled and said, "ME!" And when I read the pages about how kids with braces are just like other kids (they like to play, they like their friends, etc.), she smiled bigger and said, "ME!"

Kind of melted my heart.

Since then, she's requested it nearly every night as one of her bedtime stories, and she gets most excited over the page where a little girl about her age is in a walker and playing at a little basketball hoop (something Sam does in PT). And, when B read it to her and asked her if she liked her leg braces, she said, "YEAH!" and he said, "do they help you?" and "what do they help you do?" and she said "WALKING!"

She loves that book. I love that she loves it. What a great find!

Sunday, October 23, 2011

We are home!

Mia and I came home yesterday, and I have a lot to tell (like how surreal it felt to walk out of the hospital WITH my baby, just days after giving birth to her . . . Brian and I both said we felt like criminals or something, it was so different than walking out with your baby in the NICU) or how exhausting (yet awesome) our first 36 hours at home have been, and how Sam is simultaneously in love with her sister but also having a hard time adjusting to sharing me (or how heart shattering this feels to me -- like I'm letting my first girl down when I'm feeding her sister and Sammie B wants me and only me . . . ). A lot to share, a lot to work through, but so little time to sleep! So, I'll save the substance for later, and instead just give you the "outtakes" from our attempt to get the PERFECT going home shot of our two girls yesterday (by the way, Mia wears the same dress home that I wore 32 years ago, and that Sam wore three years ago!).

We never got the "perfect" shot we envisioned, but these shots will likely be amongst my favorite pictures always.

This first one is my favorite. I imagine 30 or 50 years from now, I'll still look at it and smile, thinking about how wonderful and funny this moment was. Mia was falling off of Sam's lap, and Sam sort of pushed up on Mia's shoulder trying to get her back up, then just said "oops!" and "help!"

Also priceless (we've learned that when we can't get a smile for a picture, we can always request, and get, a silly face):

The only one we got where Sammie B is really smiling:

This is actually a yawn from Mia not a scream. She was incredibly tolerant. (I guess second children have to be?)

And, in this one, Sammie B is DONE. She's pushing Mia off her lap, and saying "Mama!" because she wanted me to take Mia back.

What a wonderful day it was. An exhausting night followed, but even in my complete and utter exhaustion, these pictures make me smile. Big. I feel so, so blessed to have these two girls.

Thursday, October 20, 2011

Introducing . . . the miniest B!

Mia Ryan was born on Tuesday morning, Oct. 18, at 8:50 am, 6 lbs and 11 oz, by emergency c-section. Birth story to follow soon, but for now, pictures!!!

She's a beautiful little lady and she and I are both doing well!

Sammie B's first meeting with her sister goes down as one of the most magical, incredible, amazing moments of my life! She kept squealing, laughing, saying "MIA!" and didn't want to ever put her down or let anyone else hold her. It's love.

SISTERS. My two girls.

Just a tiny glimpse into our first few days with Mia - will try to post more pictures when we are home!!!

Her First Day

Monday was Sammie B's first day of preschool. She LOVED it. I went with her in the morning, met some of the therapists, got to see her taking it all in at circle time in her Sammie B way, and then left. I went back to pick her up with some surprise balloons and then me, her, and her nanny went out for a celebratory lunch (hot dog, french fries, ice cream for her!). It was a great day! She has been really excited to go back to her "new school" each day, and while there are still some details of her IEP to work out, I'm feeling encouraged and optimistic. The classroom is definitely wilder than her previous program, so I told B I know she's being pushed outside of her comfort zone -- she really seemed to just take it all in that first day -- but B reminded me -- the previous program was outside her comfort zone at first too, and she THRIVED there. So far, so good!

(Here's a quick picture from the celebratory lunch - ketchup is her new passion - she loves dipping. She's been requesting ketchup on EVERYTHING and we usually give in ;o) She learned the hard way that macaroni and cheese and ketchup do not go together so well . . . so she may not request that combo again!).

God, I love this little girl.

The best story from the day: At circle time in the am, the class sang "Do you know the muffin man?" one of Sam's favorite songs. But after the regular verse, they did "do you know the ice cream man," and then "do you know the donut man," and Sam giggled and squealed "OH MY GOD!" as if she couldn't believe they were messing up the words! Funny lady!

We are so, so excited for Sam to be part of a preschool program with some academics mixed in - the little lady LOVES to learn. We feel like so much of her first three years have been spent working on her weak areas, and we just are so excited for her to have this time to do things in the areas she's so very strong in - learning, meeting friends, etc. The lesson of the day on Monday was the color black, which she knows well, so she did fabulously, and also just jumped right into the routine, picked her name out of the list of kid's names to find her own chair, cubby, etc. Awesome day, awesome girl!

Her resiliency and ability to adapt to change with such grace is an inspiration to me.

Sunday, October 16, 2011

Our Babymoon!

Friday, after B got home from work, the three of us headed out to a weekend I'd planned as a surprise for B and Sammie B to celebrate me making it to FULL-TERM and being off of bed rest. We did the weekend on a tight budget, but I got a discount rate (for being an alum of my law school) for a room near the beach and mountains (only about 30 minutes from us and the hospital too!), and even though we didn't do that much, it was just what we needed. A little getaway with my FAVORITE two people in anticipation of our little threesome becoming a foursome!

Friday night, we didn't get to the hotel until 6:30 (and the fog was thick and sort of canceled out our "ocean view room," but use your imagination!), so we went out to a nice dinner and then back to the room to put on our jammies and to watch a movie (Babe, Sammie B's pick) and snuggle in bed. (It was worth the price of the hotel room just to sleep with our sweet girl, we transitioned her into her room and own bed in January, so even though sometimes we REALLY want her to sleep in our bed at home, we reallllly try to stick with her bedtime routine and her in her own bed).

Saturday morning, I had hoped for brunch and then the beach, but the weather wasn't great, so the beach was out. But, we still enjoyed the scenery (imagine no fog and the ocean in the distance in these first two pictures . . . this scenery is what makes so-cal real estate prices almost worth it!).

Then, we did brunch and asked Sammie B what she wanted to do . . . (even though I'm not on bed rest, we are still *trying* for me to not do a ton of walking/activity, on the assumption that making it to 38 or 39 weeks would be great) . . . and she said "home! new table!" Of all the things she could have picked, ALL she wanted was to go home and play at her new table she got for her birthday. She also wanted a balloon. SO, we hit a kid's hair salon on our way home to get her a trim that she desperately needed (her third haircut, believe it or not!) and a balloon, and then, we headed home for lunch, lots of play (at the new table!), and a nap.

After our nap, we headed to the park by our house for a quick picnic for dinner and some boat watching.

We ended what was a perfect Saturday with ice cream, and then headed home, put sweet Sammie B to bed, and B and I watched a movie together. And today, we just relaxed and got things ready for Sammie B to start her new school tomorrow (which is sure to be a big day - we do "first days" BIG around here!).

Perfect weekend. Perfect babymoon. And here's to the era of us as a threesome ending and a new chapter beginning. Sometime soon.

Friday, October 14, 2011


I made it!!! I'm officially 37 weeks, or "full-term" today!! It feels really, really good. Now, Baby Mia can come at anytime . . . so we wait. With excitement, nervousness, and anticipation.

To celebrate, I've planned a little surprise get-away for me, B, and Sammie B (not far! I don't want to be more than a 30 minute drive from the hospital, just in case). But, we had to cancel our summer vacay back when I got put on bed rest, so this is sort of our re-do. And, we'll be celebrating the last weekend before Sammie B starts her new preschool on Monday, which she's really excited about! :o)

There have been so many ups and downs in this pregnancy, and its brought up so much emotion for me. Lots of talk about Sam's birth and my pregnancy with her. It's been . . . well, heavy. Now that I'm here - full-term - I'm a little sad that I really haven't enjoyed much of this pregnancy, but no looking back. We have made it. And, we'll get a baby as our prize.

I saw both my OB and high-risk OB yesterday. The high-risk OB did an ultrasound and estimated baby's weight at 6 lbs 5 oz. She also said that baby has NOT dropped, so the "any day now" thing may not be so accurate. It's anyone's guess when the baby will come. Meanwhile, I'll continue to suffer (with gratitude for a full-term pregnancy, but not without OCASSIONAL complaining) with insomnia, restless legs, shortness of breath, and the most awful heartburn ever. (Yes, this was my list of questions for my doctors yesterday, and they both said, "yep, that's third trimester pregnancy!"). So, here we are. Waiting (but not sleeping!). In eager anticipation, and utter and total relief. Full-term.

Tuesday, October 11, 2011

Sit Tight Sister!!

Cervix Watch 2011 is being renamed "Baby Watch 2011," as we had our first official "false alarm" last night . . . (I like to think of it as a "dry run" for us!).

Around 11 am yesterday, my stomach started cramping, then contracting. I counted contractions for two hours, laid down, drank water, and they kept coming. So, I called my doctor completely sure she'd say, "that's not enough to go to Labor and Delivery - stay put." But, she didn't. She said go to Labor & Delivery. Off I went. B was home yesterday because of the holiday, so he stayed with Sammie B while I headed to the hospital, completely expecting to be monitored and sent home. We didn't want to use up our emergency, stand-by childcare goodwill for a false alarm, so it just made sense for me to go ahead by myself (and the contractions, while frequent, weren't very painful).

I got to the hospital, they hooked me up to monitors, and it turns out I was contracting even more frequently than I thought. At one point, they were every three minutes and starting to hurt worse. B came to the hospital, and we were both a little freaked out thinking we were having a baby! Then, around 8 pm, they decided to put me on IV fluids just to see if the contractions would lessen -- I didn't expect them to, particularly since I'd drank GALLONS of water already. But, they hooked me up and . . . the contractions stopped. They ended up keeping me for the night for monitoring and then sent me home early this morning. So, no baby. But, I am dilated a little, and based on my doctor's exam, she's expecting this babe in the next few days. I'm just 3 days shy of full-term (37 weeks). I think B and I would both like to make it to full-term - we recognize that the difference between 36 weeks and 4 days versus 37 weeks may be pretty insignificant, but it is just a huge emotional hurdle for us. But, we'll see!

Once I realized I was maybe being admitted and having a baby, I started feeling sad that I hadn't really gotten to talk to Sammie B about it before I left for the hospital. She had been just about to nap, and I was so surprised my doctor wanted me to go, and so sure it wasn't "it," that I just kissed her, said bye and walked out. I felt like I should have had more of a quality moment before heading out to give birth to her sister. I kept messaging B and asking how Sammie B was after she woke up from her nap, and he said she was crying and asking for me. He told her I'd gone to the doctor, and she kept saying "baby?" He actually took her out for a ride in her yellow car, and she got in, excited to ride, but then, started crying and saying "mama!" He sent me a picture of her sitting in her car with such a sad face that just broke my heart!

Soon after that though, B said he ran around the courtyard roaring and flapping his arms like a dragon (a favorite after she saw Shrek the Musical) and that made her forget her woes and she was a happy girl in no time, cruising around the courtyard, and stopping only to check herself out in the mirror.

After all was said and done and we knew we weren't having a baby (at least not QUITE yet), B and I both said we simultaneously felt relieved and a little let down. But, I came home and spent the day resting, and then took a nice long nap with Sammie B and watched Dora in bed before B got home. And, Sam and I laid together and had a little chat about Mia's impending birth and how much I love my Sammie. It felt good. Like we (okay, its just me!) are readying ourselves for this transition. So, as I get ready for bed tonight, it is a little weird to wonder WHEN it is going to happen, and also HOW I will know when its the REAL DEAL . . . I don't want to false alarm a million times! (With Sam, my water broke at home before contractions started, so I just KNEW, this feels more amorphous!).

Anyway, since we know it is likely to be SOON, I thought I'd take the time to write (another) short letter for my first girl:

Dear Sammie B:

I think your little sister is going to be joining us soon. I can't wait to meet her, and even more than that, I cannot wait for the moment YOU meet her. You, my darling, are so so ready. You talk about "Baby Mia" all the time, and how she's going to "get born" out of "mama's bah-nie-hah," and when I have told you that Baby Mia is not ready just yet to be born, you've told me YOU are "ready." You are so, so excited.

I know that when Baby Mia is actually here, you will feel that excitement, and probably some other stuff too -- it will be an adjustment for you to share your parents with someone else. But, I have no doubt that you will be an amazing big sister, and that you will teach your little sister so very, very much.

The last few months, since I've been home on bed rest, we've gotten to spend much, much more time together than when I'm working, and you have become a little "mama's girl." You don't like me out of your sight, and that just melts my heart. It is funny because I've had so much guilt over what I HAVEN'T been able to do for you the last few months -- I've not been able to get up and down off the floor as easily to play with you, I haven't been able to work with you on your physical therapy exercises as much, and have had to leave that stuff to your daddy and nanny, and I've felt so bad. Like I somehow wasn't giving you all that you needed. But, today, as we sat together and watched a movie, cuddled up, me thinking about how soon our little family may be plus one, I realized . . . I've given you EXACTLY what you needed. A whole lot of quality mom time - and a whole lot more snuggles. And you haven't cared that a lot of that time may have been sitting and reading books, or having the occasional movie afternoon in bed. And, I feel so, so lucky to have had this magical time with you. Magical, wonderful you.

The other day, your dad was working on going up stairs with you. Even though it was so, so hard for you, we kept encouraging you, dada was helping you and just encouraging you to push with your legs, and together, you and dada went up 5 steps. At the top, you seemed so tired, and you started crying and reached for me, and just wrapped your little arms around me and held me and rested your head on my shoulder, while I told you I was proud, and I know it was hard. You my girl, are amazing. These little moments, shared between you and I, absolutely melt me. You've stolen my heart in a way I didn't even know was possible.

And, as we move ahead, knowing that our little family of three is about to be one of four, I'd be lying if I told you I wasn't terrified. I am. I am so, so afraid that I won't be good enough to mother two children. But as scared as I am, I know it will work out. We'll find our way. Our new normal. And, there WILL be enough of me, there just will.

So, as our little world grows, I just want you to know how very very happy and proud you make me feel, every single day. I cannot wait to watch you grow with your sister, and teach each other amazing things. And, you, Sammie B, will always be the little girl that made me "mama." And, I am the mama that I am because of you. Magical, amazing you.

Baby Mia is going to be so, so lucky to have you as her big sister.

- Mama

On Causes and Labels and Disability Awareness Month

"Strength does not come from physical capacity. It comes from an indomitable will." - Mohandas Gandhi.

October is Disability Awareness Month. B volunteers on a local government advisory board, and they've been planning various activities and talking about ways to promote disability awareness. As I googled and looked for events near us, I had a brief moment of thinking "is this 'our cause?'" I'm not sure this is something I'm going to be able to really articulate, but I guess I struggle with balancing making Sam's "disability" a "cause" versus not wanting it to be the focus of our lives to the extent that "disability" somehow becomes a label that OTHERS use to define her or to distract from all the other aspects of her (or us as a family). I WANT to make others more aware. I WANT others to be more sensitive, empathetic, and understanding of my girl. I WANT local establishments to be more accessible to people with varying disabilities, but at the same time, I don't want "disability" to be what people think of when they think of Sammie B. Because she is so, so, so much more more. When I post little pictures of her at therapy on facebook, or note her accomplishments there, I'm always conscious not to be too therapy-centric on facebook, if that makes sense. I KNOW that our reality, our normal is a little different from some of our friends with typically-developing children, and I guess I want to share the magic and determination and spirit of my girl in every way possible, but I don't want them to think that THAT stuff (therapy, disability, CP) is our lives. It's not. Yes, there are things about CP that make our lives a little more challenging (ever tried shoe shopping for a three-year-old to find shoes that fit OVER an orthotic?), but that doesn't mean CP defines us or our girl. It's just part of our new normal.

Another blog I read often refers to the things that are part of their lives because they live in "CP Land." It is true. My world - our world - involves a lot of therapy, some equipment, and appointments that others' lives may not. As we transition to this new PT (who so far, we love), we are trialing new leg braces, gait trainers, working on things our old PT didn't pick up on (and yes, there's a little regret that we didn't switch sooner, but I'm trying to NOT look back). Sometimes, I feel like we are taking steps backward - but I know we are still headed in the same direction (forward!). For example, Sam's been willing (and loves) to take assisted steps for a long time. She loves walking when we hold her trunk. But, because the leg braces she was wearing are hard plastic, it was kind of like she's walking in a ski boot - knees locked, heels first, weight shifted backward (try heel walking, you'll understand) . . . the new PT, who I've said before is just so very perceptive, had an idea to try a different brace for Sam. Neither she nor our orthotist have ever used this particular brace (Kiddie Gait) on a kiddo as young as Sam, but thought it was worth a try. We just have a trial pair now, but we can already see less knee-locking. And, now, instead of just holding her up and letting her fling her legs out to take steps, we are really working on showing her and talking her through how to make very functional purposeful steps with her knees bent and pushing through her weight on her whole foot. There's a learning curve . . . she's taking smaller, more timid steps, and sometimes getting her feet tangled, but I know that's just because this is new to her. The steps themselves are just more functional. So, a few steps backward, but headed in the same forward direction.

Since we got the clinical CP diagnosis (meaning Sam presents as a kid with CP, even though she had a normal MRI, because we've ruled other causes out, we've sort of landed ourselves a CP diagnosis), I've said "my daughter has CP" several times (during the IEP assessment process, in doctors' appointments, etc.) Sometimes, I say it and don't bat an eye. Other times it stings. I've realized it is easier to say "my daughter has CP" than to feel like I have to explain the developmental delay, our search for a diagnosis, etc. etc. There are moments I appreciate the ease of this, of not needing the 20 minute explanation that always drew opinions/thoughts I didn't necessarily need (e.g. my OB throwing out her own ideas of what "it" could be even though we've seen a trillion pediatric specialists who've run a trillion tests). But, then there are moments (like in her IEP) when the words are spoken and sound so clinical --"Samantha has cerebral palsy" -- that I get a lump in my throat and tears in my eyes.

These things are - no doubt - a big part of our lives. With this third-trimester insomnia in particular, my head swims with thoughts of IEPs, therapy, new braces, etc. at night (I would say my anxiety about these things isn't CAUSING my insomnia, rather, the insomnia is just a breeding ground for the anxiety!), but our days . . . are NOT defined by Sam's disability. They are defined by the other stuff. The stuff that REALLY makes her who she is . . . her magic, her grace, her sense of humor, her smile, her giggle, the love that just emanates from her, her determination, her strong-will. All the things that make her magical Sammie B.

I guess what I'm trying to say (and not fully able to articulate) is that while we need friends who are emphathetic and understanding of the ways in which our reality is a little different and sometimes more challenging, we don't want them to see just that. It is kind of like when people do that annoying thing where they are telling a story about someone -- completely unrelated to their race or ethnicity -- but they still describe the person as a "black guy" or whatever. As I've become more entrenched in this SN world, I'm more sensitive to it. . . and I often hear people talking about someone they know whose son is autistic or who has CP, or whatever "difference" when its totally irrelevant to what they are saying. I guess I just hate to think that people describe Sam as "a little girl with CP" . . . she's so much more, and I feel like that description -- that label -- discounts her magic in a way that just hurts my heart.

So, if there's anything I want our friends and family and Sammie B's fans to take away from this disability awareness month and the glimpses into our lives that they have, it is this:

"Disability" is just a tiny part of our girl. Just like your eye color, or hair color, or the shape of your nose is only a tiny facet of you. The other stuff is so, so, so much more of "who she is." And, while much of mine and B's time and thoughts and efforts go into finding ways to empower and enable our girl because of her disability, those efforts do not define her or us as a family. We are so much more.

We have this magical little girl that makes us more "aware" each and every day. She teaches us every single day. And while there are certainly parts of this journey that are harder than others, and while we may not have envisioned this path for our child (or us), we are so, so blessed to be walking this path with her. And, not a single day goes by that we don't think of her -- and our lives -- as a blessing.

My girl will do amazing things in this life. You just wait. (She already is!).

Saturday, October 8, 2011

The Ways She Makes Us Giggle

I'm linking up with Love that Max again. This time we are sharing the ways our kids make us giggle with their cuteness.

I've already posted my bah-nye-nah story, which thus far, is pretty much my favorite hysterical Sammie B moment, but there are others (there's plenty of her cuteness to share!).

Like these adorable pictures I just took before she headed out on a date with her dada (to see Shrek the Musical) while my fabulous friends bring "Mom's Night Out" to me tonight for a "Mom's Night In."

A few other moments of cuteness and giggles worth sharing:

- The other day, B was on his blackberry, tweeting while we were eating at the table (yes, we are BOTH guilty of the blackberries-at-the-table thing). . . I said, "Sammie B, Dada is 'tweeting' at the table," and she said, with immediate and appropriate indignation, "EXCUSE ME DADA!"

- B and a friend were recently telling a story about someone at work, and one of them said the word "Alimony," and out of no where, Sammie B yelled "Alimony, EW!" Now, anytime we say something is gross, or we say "Ew!," she says, "Alimony, EW!" and wrinkles up her nose in disgust.

- The other morning, she dropped her Elmo and said, "Oops! Excuse me, Elmo!" Polite little lady!

- She LOVES playing freeze dance-type games right now. . . . loves making us "stop" and "go," and the other night, B and her sat and played "freeze dance" with a couple of her dolls - B would make them dance, and she would yell "STOP!" and "GO!" to control what he was doing, while laughing hysterically. This game ("Stop and Go!") is a big hit in the car as well, but gets old for mama and dada pretty quickly! (And doesn't work well in traffic).

Giggles and magic from my girl!

Sunday, October 2, 2011

Closing Out the Birthday Week in Pictures!

Our little family of three has had a lovely weekend. B and I have been readying the house for the new babe (he put together all the baby gear, installed car seats, etc., while I did laundry and folded it from bed), and this whole "our family is growing" thing suddenly seems so very very real. I think because this pregnancy has had so many ups and downs, I've been so focused on staying pregnant, that I haven't really let myself think too much about the prize at the end of it. But this weekend, seeing Sammie B's old baby swing in the living room, trying out our new double stroller, folding tiny (TINY!) baby clothes, etc., suddenly, it is real. I'm excited, I'm nervous, I'm scared.

Sammie B on the other hand, is ALL excitement. She probably feels like we've been talking about "Baby Mia" forever but that she's never coming . . . each new thing we put together for the baby, Sammie would exclaim, "Baby Mia _____!" (e.g. "Baby Mia BED!" "Baby Mia Swing!"). And, I would say, "that's right, that's where baby Mia will sleep," or "yep, this is for Baby Mia!" and Sammie followed with a frustrated, "Baby Mia, where are you?!" She's ready. She's excited. She's going to be a great big sister. And, as scared as I am, I know I'll figure out (we'll figure out) how to parent two little ladies too.

I'm still hopeful baby Mia waits a few more weeks to arrive -- I want her to be full-term (Oct. 14) and I still have a LONG to-do list, including getting Sammie B registered for preschool (the whole IEP thing is a post itself, which I hope to get to!) . . . so much to do!

Anyway, now that B and I have both posted our birthday letters for Sammie B, the comparison pictures are posted, etc., I thought I'd close out the "birthday week" posts with one full of pictures of the occasion and some of Sammie B's presents!

On Saturday, the day of her birthday, we opened presents with the grandparents, and then headed out to see Lion King in the theater (which Sam loved; she did not, however, love the "Muppets" preview that came on first -- where a door suddenly opens and knocks poor Kermit over. She yelled "NO!" and burst into tears, reached for me, got in my lap, and held on for dear life, just crying! Guess we know what movie NOT to go see), then went out for pizza at "Sammy's Pizza" which just opened here and serves gluten-free pizza!

Her first present was from her grandparents (they all went in together) -- this great little table and chairs from Jonti-Craft. I did a lot of research to find a perfect little set for Sammie B. Her chair has arms on it and a little seat belt, and is just perfect. She's already requesting to play at her "New Table!" all the time, and we know it is going to get tons of use.

The biggest hit was a strawberry shortcake beach towel from Nana and Papa. She literally freaked over it. It is so funny . . . you never really know what present a kid will go absolutely wild over!

Lots of great gifts from our family! Strawberry shortcake PJs from her uncle A and Aunt C, a great little cupcake making kit and a monkey balance board from Gigi and PawPaw, and a strawberry shortcake swimsuit from her Aunt S and Uncle D and cousins. She was a happy little lady with all the strawberry shortcake stuff.

Then, we brought out the BIG surprise from me and B. A new little electric car!

We knew she'd LOVE the car itself, and sitting in it, but weren't sure what she'd think of the power aspect. I kind of thought she'd be scared, but she wasn't. She loved it. She would put her foot on the gas pedal though and I think get a little surprised each time it lurched forward and that made her jerk her foot off, so her first ride was a whole lot of stop and go. But, today, B took her out for a second romp in her new ride, and she was all over the place in our courtyard! I was inside and could hear her yelling "stop!" and "go!" and laughing. She also crashed into a few things, just said, "Oh my God!" and then waited for B to get her back on the road . . . when they came in, she was still laughing and B asked her what she ran into and she said, "Table! Chair! Oh my God!" So, the car is a hit. Money well spent on a very deserving little lady!

After presents, we headed out for the movie and pizza, and of course, I brought along a gluten-free cupcake for the Bee:

And, then we went home and all crashed (well, Sammie B did . . . the rest of us readied for the next day's party).

We had her big birthday party with friends and family at the little pool where Sammie B does swimming lessons. She is SO very, very happy in the water, so it was a PERFECT place and a perfect little party! Here are a few pictures from that day:

(Note her special strawberry shortcake dress, made just for Sammie B by Magnolias Boutique!).

(And, her strawberry shortcake swimsuit for the occasion!)

Sammie B had a wonderful time at her party. And, I think B and I had just as much fun just watching HER have fun. She was exhausted after the party, fell asleep in the car, and actually stayed asleep as B carried her in, took her up to her room, put her in bed, and took her shoes off . . . which never happens! After her snooze, we opened the presents from the party, had dinner, and all fell asleep with huge smiles after a great weekend!

It was one of the best weekends I've ever had, and one I was so fearful I'd miss because of bed rest, but the Thursday before, I had a check-up with the high-risk OB and I asked what she thought about the party/weekend. She said, "go, do, but SIT as much as possible and NO lifting." So, that's what I did. It was hard for me to NOT be able to lift Sammie B and to feel a tad "side-lined," but I was just so, so glad to be there. Celebrating Sammie B! Fabulous celebration of our fabulous girl!

(And now, that ends the birthday posts for this year!).