Teamwork

I get by with a little help from my . . . big sister and mama!

Sometimes, it takes a little team work to get things done.

Just doing what sisters and friends do . . . giving a push when we need one, and providing a lot of inspiration and motivation (in a tiny little Mia package) along the way.

Firsts & Surprises

Over the Fourth of July holiday, we went to Cleveland to visit B's parents (Nana and Papa).  The most amazing part of the entire trip was watching Sammie B . . . she's usually very shy when out and about and out of her comfort zone, but not this trip.  Over and over, she just kept surprising me with how brave she was . . . . how much of a little girl this baby girl has grown into . . .

I already mentioned that we went to the park and for the first time, Sam moved herself around the play structure independently.  As I watched her, so determined to get where she was headed, undeterred by the fact that her only way of getting there solo was via butt scootching (and undeterred by the heat!! holy heat!!), I was amazed.  Amazed by her determination and perserverance.  Her grace.  Amazed by how far this little girl has come.

And as she went down the slides again and again (demanding "more!"), my heart felt so full, so proud, and all I could see were the "cans" . . . and in my head, I thought, "Oh sweet Sammie B, we've come a long way baby!"   It was a fun, fun day. 

 Doing the slide all.by.herself . . . (P.S. I attribute her figuring out how to butt scootch forward to all the sliding we do!)

 Scootching.  With grace and dignity that we could all learn from. 

 And, with a little help from Dad, all things are possible. 

 Walking, with a little help from mom.   See that face of determination?!

And, that day, just as we were about to leave the park, she pointed to the "typical kid" swing . . . the kind with no seat belt, no harness, just a swing.  And she said, "me on!" I paused, took a deep breath, and explained to her that that those were "big kid" swings, and I wasn't sure if she was big enough yet (I pause because I don't like to explain things as "big kid" things when I worry that she might not be able to do them, even as a "big kid" -- we tell her she's a "big girl," and I don't want her to think she's not just because she can't do x, y or z -- but in the moment, this answer made sense . . . ).

Anyway, after I said, "I'm not sure you are big enough for that swing," she said, "I want to try."  Another first.  Her Nana and I exchanged a look that said a million things all in one quick second.  All because of those four words, "I want to try."   The thing is, when things are hard for Sammie B, she (like her mama) NEVER really wants to try them.  The second things get hard, she says, "all done," and refuses to try again (this has been a big challenge in therapies).  And, when she's made up her mind that she isn't going to try, there's NO bribing her.  (Again, like her mama.)  So, there was just so much in that single little moment when she said, "I want to try," that just surprised and amazed me.  And, so, try we did.  I held her on the swing while I pushed, and we tried.   It wasn't easy, and she quickly decided she was in fact, "all done," but because she tried, I felt so, so proud. 

She also fell asleep all by herself for the first time in any place other than her own bed.  Usually when we travel, she sleeps with me and B.  Always has.  I've always felt like it would be really scary to go to sleep in a new place when you can't get up and go find your parents if you need to, so we have always let her sleep with us when we are anywhere other than home (which makes for a treat for all of us, and B and I both say its more about us "getting" to sleep with her than "letting" her sleep with us!).  But at B's parent's house, we put her in one of the extra rooms with all of her favorite animals and our video monitor, told her we'd be able to see her on the camera, read stories, said goodnight and walked out.  There were no tears, and I was so proud of her.  Of her "big girl" moment, her independence, her bravery.

And, while we have no pictures of it, she also went down a water slide for the first time and all by herself.  The pool by B's parent's house has this amazing water play structure and a bunch of different slides.  Our little Sammie B was in heaven.  She had A BLAST, and we had a blast watching her.  She went down the slides over and over and over, including the big tunnel slide.  I was truly, truly surprised and amazed.  Independent.  Brave.  So, so fun.

She had her first slumber party with her cousins (which didn't start out so smoothly, she has never been to their house before, and well, has only seen them a few times in her life, so I think she was a little scared at first when we got there at 8 pm and shortly thereafter were putting her to bed in a different room, and we weren't going to stay in there with her, BUT, her bigger cousin agreed to get in bed with her and after that, all was fine and the three big girls slept all together :o)).  

She performed her first puppet show, taking turns with her cousins.  She kept just sticking her puppet out on the "stage" and saying, "hi!"  She (mostly) watched attentively as her cousins took their turns (okay, so that's not true, she just watched and kept saying, "it's my turn!" but those are just details).

 Waiting her turn!

She played on a sit & spin for the first time . . . which might seem insignificant, but for me, it wasn't.   She spotted it from across the playroom, and said, "me on!" and I paused for a moment, wondering if she'd be able to do it, but B put her on it.  And you know what?  She totally got it. She totally did it.   And loved it.  I'm pretty sure she needs one of her own!  It's those moments . . . the ones where I think, "can she do this?" and then she does . . . or she just TRIES . . . those are the moments that remind me, again and again and again, that the sky is the limit.   And then she said the same thing ("me on!") about a ride-on toy her cousin had, and I put her on it, and lo and behold, the little Bee started moving herself across the room on it, turning to look at me like, "what?! I've got this mom!"  Oh yes, the sky is the limit.

She slept in a tent for the first time with her nana (although they were inside -- did I mention the heat?!) and Sammie B loved it.

 Mom and Dad coming into the tent to say "night night." 

 Bedtime stories with Nana (Sammie B picked a pink sleeping bag!)

So many firsts.  So many adventures.  So many surprises.  My big, independent first-born.  Look how far we've come my baby. 

And, after we got home from the trip (after a long plane ride!) she said, for the first time ever, "I'm so tired!"  (a first -- admitting to tired!) and when we asked if she was ready for bed, she said, "Yes!"  (another first!)  I think we all felt the same . . . it was just that good of a weekend:o)

Over and over on the trip, I was just surprised and amazed by how much she was part of the action, how not-shy she was, how much she was talking . . . and my heart just kept soaring.   It made me wonder if WE are holding her back.  If I just haven't given her these opportunities to surprise and amaze me with independence.  I'm not sure what the answer to that question is, but it has given me pause, and I will keep remembering the little Cleveland moments where I suddenly was taken aback by how BIG my BIG girl is, and I will look for ways to keep giving her those opportunities.  Opportunities to shine.

And shine she did, and does.

My girl, may you just keep on surprising your mama.   I know you have so, so many more "firsts" and surprises in store for us, and I can't wait.  You make me so very, very happy and proud.  

Nine

Our sweet "Mia Mia" (as Sammie B and I call her) turned 9 months old this week.   Her ninth month marked her first trip to the midwest to see B's parents, her first time on a swing at the park and her first time down a slide.

Mia is crawling, cruising, and on the go.   She is a tiny part crazy, mixed with a whole lot of love, sunshine, independence, curiosity, smiles, giggles and a breath of fresh air.  Sometimes, she wants to be moving and checking things out independently and being held and loved and kissed all at once, and it is almost as if she can't decide which one she wants.  As we watch her little personality just explode, I think it is safe to say we fall more in love with her every day.

She is Mia Mia.  

The Same

Last weekend, we were at a park, and for the first time ever, my girl was moving herself around the play structure independently.  Yes, it was by butt scootching, but it was . . . independent mobility.  And, as I watched her, my heart felt so, so full.   (It was a weekend of many, many amazing moments and there's more on that to come).

In that moment, she was just another three-year-old little girl, excited to be at the playground, moving as fast as she could toward her next thrill.  As I watched her move, and watched her go down the slides all.by.herself, I thought, "This day is all about the cans. Look how far we've come!"  I was, of course, completely aware that butt scootching isn't the "typical" way of getting around on a play structure, but in that moment, it didn't matter.  I was soaring. She was doing it. 

Then, we made our way over to a part of the play structure where two other little girls were playing, and an older girl asked me, "can she walk?" I took a breath, paused, and answered, "not by herself yet," and she said, "well how old is she?" and I said, "she's three."  As a mom to a kiddo with special needs, I KNOW these questions will come, and everytime, I have a choice ... let it stop me in my tracks, or choose to make it a teachable moment.  I could have explained how Sam's body just works a little differently (as I have before to an inquisitive little guy at the pool, who immediately said, "oh okay," and went right back to playing with Sam, though with a different gentleness than he had previously, leaving an impression on my heart forever), but I didn't feel like going into it.  So, I gave her my simplest, shortest answers in a "just leave us alone" tone, and we kept playing. 

And suddenly, I knew that that other little girl had just seen the differences.  She'd seen the things Sam did differently, and not the ways they were the same.  That, just like other three-year-olds, Sam was ecstatic to be at the playground, loved the slides, wanted to be near the other kids, giggled at her dada's silly jokes, squealed with glee as she went high in the swings and fast down the slide.  Just like other kids. 

But that wasn't what the other girl had seen. 

And tonight, again, as I helped my girl figure out how to push her baby doll in a toy stroller while moving in her gait trainer, I was struck by the "cans."  The things that make her just like other kids.  And when I asked to take a picture and she made her best silly face, my heart soared because again . . . she's the same. 

But yet, I wondered how another, outside observer would see it.  Would they just see the big wheels?  Would they just see the bulky black gait trainer? 

Helping my girl navigate this world in her way, different as it may be, and helping others see the way she is just like them, helping her show the world who she is . . . the ways that she is the same . . . feels like a tall order sometimes, but as I watched her tonight, I felt so hopeful, optimistic, and so, so happy.   The possibilities are endless.

The UP Part of this Roller Coaster

Sometimes, life has a way of knowing when we need a lift, right?  After my last post, when I couldn't kick the blues over the whole "house for sale" business, the next day . . . things just happened that kept lifting me up and up and up.  

First, I got a message from Sam's physical therapist about how the day before she'd had "the best session ever" with Sam, and how Sam had initiated more movement during that session than she ever had before.   And how much she's enjoying watching our girl learn and grow.  Just what I needed. 

Then, we finally, finally got the call that Sam IS going to qualify for our state's supplemental health insurance for those with disabilities (this has been over 10 months in the works -- from when we first tried applying).  Like the parking placard that I hang in my car, these things are a double-edged sword.  I wish I didn't know about this system.  I wish we didn't qualify because, well, I wish my girl had things easier.  But we do, and we need it.   And, this will (hopefully) free up some of our resources to put toward the the private therapies -- hippotherapy, swimming, etc. -- that cost us so much.  The things that our insurance (or this supplemental insurance) won't pay for.  This supplemental insurance will (hopefully, how it works remains to be seen) cover our co-pays for Sam's physical therapy, as well as any future equipment Sammie B needs.  The supplemental program won't pay for speech therapy (nor does our private insurance) which is lame lame lame, but we'll take what we can get and be thrilled to have it.  Finding that we might finally have some extra help with this stuff -- even if only a little -- lifted a tiny part of the heavy weight that I've been carrying.  

And then, later that night, B brought Mia in from day care sleeping in her car seat, and Sam scootched over to watch her wake up.  When Mia opened her eyes, Sammie B said "Hello Mia Mia!" and both girls fell into a fit of giggles.  So so happy to see each other at the end of their days.  And then, later, while B and I made dinner, Sammie B was scooching around, turned to look at her sister, and said, "come on Mia!"  Those are the moments that define us.  The joyful ones.  We may still have a lot of bickering and the usual "sister" stuff, but this stuff -- the friends stuff - the "I want you to be with me and play with me" stuff -- that melts my heart.

So, a house is just a house.  I know that.  We'll continue making amazing wonderful joyful memories whether it is in this house or the next one, and no matter how big or small that house may be, and whether its owned or rented.  Just a house.  The "home" part is made by us.  In the memories.   

For Sale

I've mentioned before that B and I have talked about putting our house on the market.  We have four flights of stairs, and our home just isn't one that was made for an adorable little girl in lavender glasses with her purple gait trainer. It just wasn't. 

But as I type this, my heart feels heavy and I have a knot in my stomach because...well, because there was a time when a freshly pregnant me and B walked into this house for the very first time, after two months of looking at every other house for sale in the area, and we just knew.  We knew we had to make this one ours.  We'd each finished grad school, we'd been married two years, were both well on our way in our careers, and had just found out we were I was pregnant, and . . . we were ready to buy the house we'd bring our children home to.   We'd looked a long time to find a house that had "space to grow into."  So that we could be here for awhile.  A place that we'd be able to bring home our first child to, and our second.

And when we walked into this house, we knew, this was it.  We made an offer that night, and agonized for days over the offer-counter-offer-counter-counter-offer process until finally, finally, we got word that it would be our house.  We were giddy.  We knew just which room we'd turn into the nursery, and as soon as we found out Sammie B was a girl, we picked out the lavender paint.

And in all of that, there were assumptions.  Naive, innocent assumptions.  That our little girl would come home to this house, learn to walk here, and bound up the stairs after us.  And well, those things haven't happened.  So, while this was the perfect house for our little family, it just isn't now, but that's been hard to come to terms with.  But we are.  We've signed the papers, and this little house is going on the market.  I cry when I think about it, in part because, I just can't stop flashing back to that first time we walked in.   When we thought "this is it."   Because now, it's not.   And, I couldn't stop myself tonight from looking back at pictures from the day we found out that the sellers had accepted our offer.  When we came back to take one last look -- a last look that just reaffirmed for us that this house was the one.   When I stood out front with my tiny little baby belly and beamed because we were making it ours. 

May 2008, 4 months pregnant with Sammie B

Except now, it's not the one anymore.  It's not the house for our family. 

We want our girl to have a home that she can navigate independently.  One that is accessible to her and her gait trainer and whatever equipment she may ultimatlely need.  And this house -- with its FOUR flights of stairs -- 32 steps in total -- is NOT that house.  

On top of the emotional aspect of the desicion to sell, there's the practical side too . . . that the market still sucks, we don't know whether we'll ultimately be able to get what we owe, etc.  We know we'll likely need to rent for awhile to save up for another down payment (we know we'll never get back what we paid down, which is devastating . . . we saved for so long to be able to buy this little townhouse just a few minutes from the beach).   And, while I can't totally put it into words, somehow selling the house we were so proud to buy and having to rent while we save for a down payment again feels a bit like a failure.  We were so, so proud to buy this one . . . it felt like we had "made it."  The me that had been terrified  we couldn't "make it" here when we moved from Missouri (where we paid only $750 for an apartment) to So-Cal (where our first apartment was less than half the size of that Missouri one for more than double the price) (and the me that knew many others thought we were crazy to make that move) has probably always felt like having this house was a sign that we had indeed "made it."  

The weight - both the emotional weight and the weight of the financial worries, is heavy on me tonight.   Suddenly, a year of paying for therapies that used to be provided by the state's early intervention program (until Sammie B aged out at 3) is hitting us harder than before.  I feel like the bills never stop.  It's all just cumulative I guess, and well, it sucks.   It sucks to have two very decent incomes and yet feel so strapped.  By something that is so very, very out of our control.  Something that causes our girl -- our magical girl -- to have to work so damn hard at everything.  Because that's the part of this that sucks the most -- that SHE has to work so hard.  The rest -- the bills, the house -- I guess its just like rubbing a little salt in it all. 

Sigh.  Big Fat Sigh.

It'll be okay.  Because life is about the memories made in a home, and not about the home itself.   And we ARE making sweet, sweet memories.  And, I truly, truly believe that a move might be a blessing in other, unexpected ways.  Certainly if we can rent for less than our mortgage we can (perhaps) feel more freedom than we currently do, because lately . . . lately we are bogged down.  We just are. 

We aren't, in any way, giving up on our girl walking independently.  That's not what this move is about.  But the thing is, we know that right now Sammie B needs a home that is accessible to her.  And right now, she's not walking independently.  We need a home that is accessible.  One where she can navigate using her gait trainer, or whatever adaptive equipment she ultimately needs.  There's something about living in a house with so many stairs that makes it feel like we are just waiting for her to walk, waiting for this house to make sense for our family again.  And life can't be about waiting.  It has to be about living in the now.   And so, right now, she needs a more accessible home.  And because she needs it, we need it.  Right now.  Not when the market is better, which we know we might be able to wait for.  The "waiting" sometimes gets in the way of living and right now, we know what we need to do.  For her.  And, for us. 

As this journey goes, up and down.  My heart has felt a constant up and down lately.  The weight of bills, the weight of selling the house and all that that desicion feels like it represents.  Heavy.  But on the flipside, my girl is melting my heart day in and day out.  She keeps lifting my heart up in a way that I so, so need right now (Friday night, I put her to bed and said, "I love you," to which she said, "I love you more, mama." and my heart melted in a puddle on the floor).   She's magic.  She deserves the world.   The giggles from two little girls in the bathtub make my heart feel like singing, even on the toughest days.   They make my world go 'round.

Sammie B deserves a home that is fully accessible to her.   And so, we will get her just that.

Anything less than giving this girl the world is just not an option. 

Pure Magic

A few weeks ago, after we first sat down with our realtor to talk about putting the house up for sale, B and I looked at each other and said, "well this sucks."   And, today, after a rough day and finalizing the "for sale" type of papers, B and I felt heavy.  

And, then, after dinner, we put on some Bob Marley, Sam declared "It's a dance party!" and we popped her in her purple gait trainer (which, at this point, is perhaps more appropriately called an "assistive dancing device"), and we danced.   And we sang.  Because what else can you do?

Every little thing's gonna be alright.   Isn't it?

The Ways in Which They Blow Me Away (Part Two: The Baby Child!)

And, this one.  She's blowing me the eff away too.  Mostly with her go-go-go.  This girl is ON THE MOVE.  She doesn't stop.  I truly haven't kept track of milestones, so I'm not sure when it happened, but sometime soon after six months, Mia started combat crawling.  We were blown away, and then it felt like within days, she was up on hands and knees and going.  Slowly at first, and then, just like that, she was off.  Now, she's pulling up on everything in sight, whether its sturdy enough to hold her weight or not, and she's so fluidly pulling up, getting herself back to the floor, off to crawling . . . go go go. 

She doesn't stop.  It's funny.   It's mind-blowing.  It's all new to us.  B jokes that she's like a little wind-up toy because she just goes goes goes.  When she sees something across the room that she wants, she goes toward it, fast, mouth open, panting with excitement, like a little puppy dog.  Many, many times that something across the room she wants is one of our laps, but she comes to us, and climbs into our lap for mere seconds before she's off again, too busy to be held and snuggled.  I try to put her in the floor with toys all around her while I shower and she makes a beeline for whatever non-toy thing she can find that might hurt her (like the computer cords).

I can't even capture a good picture of Mia - they are all so blurry because she's on the move.  I get out the camera, and she comes toward me, mouth open, panting, so excited to see what I have.  So, I have a whole lot of blurry pictures of the little babe crawling right toward me.  Blowing me away.

When I dropped Mia off at daycare the other day, she saw a toy she wanted and another baby in the way, so she crawled OVER the other baby without missing a beat.  It's that energy that makes me giggle when I think of Mia.  She's a ball of sunshine and energy and happy.

When the girls visited me at work on my birthday, one of my friends said "Mia is such a ball of sunshine."  And, its true, she is.  She gets frustrated because she wants to go-go-go (like she wants to cruise and walk and run right.now but of course, her body isn't ready to) but mostly, she just radiates sunshine and happy.   I cannot look at her without smiling.  

I'm constantly struck by how different she is than her sister.  And, not just in the ways we expected.  Not just because one of them has a movement disorder and one doesn't, but just in fundamental ways, they are unique.  Their own little people.  Whereas Sammie B, as a baby, and still today, studies things before she's ready to touch (like a new toy, she'd just look at it, and softly push buttons until she'd figured it all out, or she'd study it and wait for us to show her), Mia lunges for new things, including toys, and tries to just bang them into submission.  

When we skype with B's parents, Mia just wants the computer.  To bang on it.  She crawls as fast as she can toward it, over and over, and we keep pulling her back, over and over, and she gets so mad.  

She's started babbling more and more and the "mamamamama" has started - I'm not sure its with intention yet, but it makes my heart skip a beat just the same. 

We all went out to dinner tonight, and B and I sat on one side of the table with the girls next to each other on the other side, and he said, "can you believe they are both ours?  If we never do anything else right in this life, we did this right." So true.  These girls are amazing.  They blow me away.  

Mia is still oh-so-fascinated with her sister, and wants to climb all over her.  This part is hard for Sammie B - I think its hard that Mia is literally in Sammie B's personal space, climbing on her, and Sammie B can't just run away.  We get a WHOLE LOT of "No Mia NO!" and Sammie B gets so upset, but we are working on sharing . . . both things AND space.  I guess this one has me a little stumped because I "get" that its not fair to Sam.  I "get" that she wants her space.   It's just a tough part of this journey to navigate.   

Even though we are running into those moments of frustration, the amazing moments are there . . . we picked Mia up from daycare today and she immediately pulled to stand to be right next to Sammie (who was in the wagon) and leaned into Sammie B's face and just giggled with glee.  Sammie B leaned over and said, "Mia you are a funny girl!"  And, another day, we took them on a wagon ride and B commented on how quiet Mia was being and Sammie B leaned over, took her sister's hands, and said, "Mia you are being so good!"   Amazing.  They blow me away.  

As I watch Mia's movements, the "typically developing" kind, I am blown away.  I look at how she goes into side sitting so fluidly, pulls to stand, all the tiny pieces we worked so hard on in PT with Sam.   Sam's PT once told me (when I said I didn't get why side-sitting was so important) to go to the park and watch how the typically developing babies moved.  How they used side-sitting to transition.  Watching Mia, I get it.  I'd be lying if I said there wasn't a little dose of "bittersweet" in all this.  Watching it happen the typical way.  Without PT.  Wishing it could be this way for Sammie B.  Wishing I could make it easier for her.  There's a ton of guilt in watching Mia speed across the floor and admitting that I feel sad for Sam. Those "No Mia No" moments really get to me.  Because I can't fix it.  I can't make an eight month old understand that her sister really doesn't want her climbing on her, and I can't make it so that Sammie B can run away.  I've had such guilt over these feelings, because I want so badly to let Sammie B's story be hers and Mia's to be hers, but here's the thing . . . our stories are intermingled.  They just are.  So, they are our stories, and we are all better people, leading richer lives because they are shared.

Sammie B truly has taught us not to take anything for granted.  She has taught us what hard work and perseverance look like, she has taught us not to take one word or movement for granted.   And now, we bring that lens, that perspective to parenting Mia, who is teaching us things too.  Who is blowing us away, just as her sister does, though in different ways.

For those that know the "Welcome to Holland" poem and the Italy/Holland analogy (you can google if you don't), B and I had a long talk the other night about our "dual citizenship."  (As an aside on that poem, I know special needs mamas all have very different reactions when they read it, and here's mine. I like it.  I think it has helped give B and I a very simple metaphor that's allowed us to talk about this journey when we might not have otherwise found the words, but I don't like that it kind of makes it seem like "Holland" is less than "Italy."  It's not.  Different, yes, but less than, no.).   Anyway . . . the other night, B and had a talk about our new "dual citizenship" so to speak, and he said exactly what I'd been thinking . . . that going to Holland and then Italy somehow makes both places all the more beautiful and our existence all the more rich.   Somehow, we are finding our way though Italy and Holland together, as a family of four, and marveling in the joy and richness of both.  In seeing the tiny details.  And all those details are just blowing us away.

Sammie B is the little girl who made us "mama" and "dada" but every single day, we are learning from both of them.   Mia is bringing us balance, in a way that I just can't describe.  A lightness that we are all benefiting from.   And growing from.  

Suddenly, I'm not just "Sammie B's mama," I'm "Mia's Mama."   And it feels so good.  I like being theirs.  

A perfect (okay, nearly perfect) four.  Balanced.