Duking It Out

     Isn't it weird how some memories just stick out from your childhood over the years and years of life?  Sometimes, it seems, it's not even the important stuff (or the stuff you thought at the time was important).  For instance, I remember when I was about five and we went to Disney World.  Well, okay, I don't really remember anything about Disney World other than learning to tie my shoe.  Isn't that strange?  Of all the life-changing experiences I had there (meeting Mickey Mouse, riding roller coasters, etc:), I remember learning how to tie my shoe.  I am either really dull or I don't understand how memory filings work.

The cutest little sister in the world

     I remember the first time it became clear to me that Emily was different.  Isn't that weird that I didn't really know all along?  I mean, after all,  I was almost seven when she was born.  Isn't seven old enough to know someone is different?  Not this brilliant cat.  It's hard to communicate to people what it's like to grow up with a sibling who has a disability.  It's hard to step back and look inside your family and reflect.  Because, at least for me, it was "normal."  It's confusing sometimes to separate what I thought was normal from what most people would consider normal.  Does that make sense?  I think, as children, we all grow up thinking that our lives are not really unique in any way.  We don't have the perspective yet, or the experience, to realize that each person has a different way of experiencing the world.  Even in the same family.

Em with her big brother and brother-in-law

     I remember, shortly after she was born, my father called us into my parents bedroom and it was dark.  Not sure if it really was dark or if my memory has painted it such.  My mother was propped up on pillows in bed, crying.  My dad sat next to her and held her hand as he spoke to us very frightened kids.  I don't really remember his exact words but it was something to the effect of "something is wrong with the baby."  No words he spoke could have made me understand the gravity of the situation more than my mother's tears.  I had no idea what he was talking about but I knew we were sad.  I ran up to my room and flopped on my bed.  Interestingly enough, I clearly remember yelling at God in a whisper as fiercely as a little girl can: "Why did You do this to us?!?!  Is it that hard to make a baby normal?!?!  I hate You!"  Looking back, I find it terribly interesting that I had enough of a grasp of the concept of God at that young of an age to know where to lay the blame.  I'm sure the anger of a seven year old was distressing to Him, not because He thought it inappropriate, but rather that even God Himself probably struggles to communicate the intricate weave of a blessing to a child.  Blessings take time and time is a foreign concept to the young.  Just wait, I'm sure He wanted to whisper back.  But no seven year old has a concept of future clarity.  At least this seven year old didn't.

Em loves babies- except when they cry or have a dirty diaper :)

    They brought Emily home and I was astonished to see that, well, I didn't see anything wrong with her.  She didn't have a tail, or only one eye, or even multiple limbs.  What's all the fuss about, people?  To add to the confusion, she looked perfect to me.  If only I could have expressed that wisdom to the adults.  She cried, she pooped, she drank a bottle.  She, in fact, was a baby!  It was a seven year old girl's dream to have all of this real baby gear to help aid my imaginative play as the mother to several unruly children with plastic heads and bodies.   I remember frequently stealing her nice, soft diapers to put on my very hungry babies, much to the consternation of my mother.

    The years went on and Emily became an intricate part of the memories of my family.  I stopped being able to remember, at some point, what life was really like before she was there.  All three of us older kids were very much into sports and Emily tagged along to the gym to watch endless basketball and volleyball games.  Our teammates and the other parents took to her with great affection.  Everybody loved her and it all seemed normal to me.  If anything cruel ever was said or happened, it must have flown blissfully over my little brown head.  

Three sisters and a baby.

   Until one morning.  I must have been around ten, and Emily was three.  My family and I went to Mass and stopped by the grocery store after to pick up hamburger buns (again, why do I remember hamburger buns???).  I volunteered to go inside and Emily insisted on coming with me.  Grabbing the money from my dad, we ventured across the parking lot of the Winn-Dixie.  As we passed through the automatic doors, a little girl was leaving the store with her mother.  I made eye contact with the little girl and realized she was staring at Emily.  She yelled out something to the effect of, "What's wrong with her?" and was quickly whisked out of the store by her shushing mother.  My world stopped.  I remember looking back at the hand holding onto mine and tracing it up to an adorable face with eyes the color of blueberries.  Emily was staring at me, oblivious to the charge of the fellow three year old.  I tried to catch my breath.  

     Part of me honestly wanted to run outside, tap the little girl on the shoulder and as she swung around, yell "Put your dukes up!!!".  No, really, I wanted to beat a three year old up.  Of course, you might say, she didn't know what she was saying.  And, obviously, she didn't.  But it didn't matter.  Emotions came flooding into my heart as I glimpsed for the first time what others really saw.  It was painful.  It was maddening.  I saw with horror that they didn't see her.  In an instant of crossing paths, they didn't see that she was full of clever mischief.  They were blind to the fact that she was hilarious and often left us rolling with laughter.  They couldn't tell that she was loved immensely.  They just saw a difference.  And that made all the difference to me.

Em loves animals, especially dogs and horses.

     I clearly remember squeezing Emily's hand, trying to fight tears that were quickly forming.  We resumed our walk towards the hamburger buns but my mind was on fire. What if someone makes fun of her and I'm not there?  What if they make her cry?  What if they don't understand and think she's something less than she is?  What if they hurt her and I'm not there to beat them up?  The first feelings of intense protectiveness were born.  Never, really, to subside.  I have yet to beat anybody up over it, but my fists seem perpetually clenched at times in dread of the moment should it ever arrive.  

    This is partly where my passion for the special-needs orphans comes from.  Born from that moment when I felt like Em was being attacked, was being viewed as something less than she was.  It's what I see in the loneliness of the children who are hidden away with no one to fight for them.  I try to "put my dukes" up everyday in some small way to fight for these kids.  Don't you see?  In some very real way, Emily's face is on each of them.  I don't need to fight for Emily right now but the ever-present adrenaline from the moment in Winn-Dixie pushes itself to the forefront when I encounter in another what I feared would happen to her.   Where is the mother who will fight for her baby?  The father who rests peacefully at night knowing he has protected the most vulnerable in his care?  I feel an irresistible urge to reach out and squeeze their hands, to let them know I will step in and go to battle for them.  Even from thousands of miles away.  I can't protect each of them like I want to.  I can't be a big sister to all of them.  I can't be a mother, at least right now, to any of them.  But I'll do what I can.  I'll do what I must.  Because, if it was Emily out there in some man-forsaken crib, I'd hope somebody would step up to the plate for her.  These are kids, for crying out loud.  These are human beings.  Each with a unique fingerprint of God Himself.  They are our sisters and brothers whether we accept them or not.

     

Emily caught the bouquet at my wedding, after mowing down several small children.  The girl's competitive, people ;)

P.S.

     Well today, my friends, is the 21st of the month and this is the day we're fighting for Ruslan.  Or cheering for him, however you'd like to think of it.  Today is the day we pull back from the hectic pace of our lives and remember those who bear an ungodly amount of boredom in their cribs day after day after excruciating day.  Far away but intentionally brought closer.  Today is the day we remember a boy who has made very little memories in his life- and we see fit to try and change that.  We, the Baboushkas, find great purpose in trying to change the life story of a little boy with just a tad too many chromosomes to be held in esteem by this weird world we live in.  Never fret, Ruslan, in the world of the Babouskhas, today you are king.

   

    And I dare anyone to find a more adorable member of a royal family.  This picture looks to be from the baby house, when Ruslan was younger and probably better taken care of.  They don't allow pictures once the child is transferred to the institution- or at least they rarely do.  My mind wanders to try and guess what he looks like now.  I try to remain positive.  It's the only way I can keep myself from not getting overwhelmed.  From not collapsing into an adult temper tantrum.  I have to believe he is okay.  Not living a dream in any way, but okay.  He's fed and talked to and maybe, just maybe, tucked in at night?  I desperately stretch my imagination to let my conscience rest.  A survival instinct of the most brutal kind.     

     If you have anything to give, please join us.  Our Ruslan needs a family to start creating new memories with.  He needs hearts who will fight for him.  He's our brother.