Shoelaces

Some days.

Some days being this child's mother is exhausting.  But not for the reasons you think. No, being this child's mother is exhausting just as being any of my children's mother is exhausting  Being a mother is exhausting.

The need to exert one's own independence at the most inopportune time.  To tie one's own shoes at one's own pace...when all I want to do is get out of the house on time.  Because if your sister is late (translate-5 minutes early) for school one more time her 10 year old life will be over.

She's tying her own shoes.  At one point in time we weren't sure she'd be able to feed herself or talk.

She's tying her own shoes.

And so I sit down...and wait.

She tied her own shoes today.

Laughing about Normal

There's this word.  I have a deep love/hate relationship.  Normal.  I understand the necessity of it. To explain what the average is for comparative purposes.  But I also sometimes see it as an enemy (something I'm working on).  Normal defines what is acceptable.  Normal tells us what should and in reality, shouldn't be.  Normal is ok.  Abnormal is not.  Right?  Right???

Here's the beauty of that word-the other side of the coin, if you will.  It's a word that can change.  A word that takes on new meaning depending on the user.

My family-brothers, sisters, mom, dad.  We had a "normal" childhood.  Or so I thought.  We grew up on an acreage, growing our own food, playing in the "wild", and working together to make the family flow.  It wasn't until I got to junior high and beyond that I learned that actually, no, most people do not burn their trash in a gigantic burn pile.  Most people don't bake their own bread every week and preserve their own food for the winter.

What was normal in our family was certainly not going to be so to the family down the street. Take for instance, raisins. Growing up, we loved raisins. We loved raisins so much, we would eat 'em in our turkey noodle soup. Yep, big fat raisins all plumped up with turkey broth and salt. Delicious!  Depression throwback handed down by previous generations?  Most likely, but who cares!?  It tastes wonderful!

But to my best friend in junior high and the rest of the known world, raisins in turkey soup wasn't right. It isn't normal.

Normal is an incredibly subjective, relative word.  Meaning dependent upon the perception of the user.

So it goes with what most people consider "normal" appearances. We have a set of societal norms that say what is and isn't "normal".  Society sets the standards.  And society is incredibly fickle and too often, unkind.

To the average observer, simply taking a brief glimpse at A would lead them to believe she looks nothing like her siblings. Looking nothing like your siblings isn't in and of itself, unusual. But when you're looking for anything to mark you as one of the tribe and finding very little-it's disheartening.

So for the average observer, taking no more than a brief look, to say that A doesn't look like her siblings, they would by all accounts, be right. This is our normal.

All it takes is to spend twenty minutes with our family and there is no question that we share a whole lot of DNA. She scowls like her brother.  She has the same mischievous side glance as her sister. She inherited, bless her heart, my insane curly/wavy hair.  And her joy for life is so, so like her Daddy.

And my favorite-their sense of humor.  These kids share the same silly, clever, off-beat sense of humor. With that same sense of humor comes their laugh. A deep, resonating belly laugh that catches them at the most unexpected moments. Full, bubbling, and without abandon.

Normal?  Not us.  Not ever.  Or at least, none other but our own version.

Our Story

A few short years ago, God gave us an unexpected blessing in our youngest daughter. I say unexpected because our third child was born with Carpenter Syndrome. This means she was born with a hole in her heart, fused sutures, shortened limbs, extra toes, extra finger, an umbilical hernia, malformed hips, extra bones throughout her body, potential metabolic issues, possibly missing molars, an extra high palate, and lowset ears. Add this all up and you get a child that doesn't necessarily look like every other child in the nursery. She's had heart surgery to repair her VSD (hole in her heart), two cranial vault reconstructions during which they expanded her skull, and an endoscopic third ventriculostomy to relieve a build up of cerebral spinal fluid. As a result, she has a barely noticeable 2 inch long scar on her chest, a small crescent shaped scar on her and a large, very noticeable, wavy scar from ear to ear.

All of those things are what give our girl a diagnosis of Carpenter Syndrome.

This is Miss A.

She's a happy, joy filled child with a great deep belly laugh and a smile that takes up her entire face. She lives up to the meaning of her name, “Fountain of Joy”. She has these huge blue eyes framed by beautiful, dark, heartbreakingly long eyelashes. She loves Cheerios, bananas, and pasta but hates loud noises and lots of "stuff" going on around her. She loves her brother and sister and patiently puts up with their sometimes overly zealous kisses and hugs. She cries if Mama doesn't pay enough attention to her or if someone leaves the room without saying goodbye. She has been poked, prodded, cut, and stitched and still smiles when a nurse or doctor talks to her. She is loved and prayed for by people all over the country. People we've never even met. She melts hearts with her big eyes and even bigger smiles. We relish every tiny milestone….standing, sitting up, reaching for stuff, feeding herself, nursing…breathing. We thank God for the gift that is this beautiful girl…our family would be incomplete without her.

And that’s where this blog comes in. You see, A’s journey is actually our journey. It is the story of a family. Every tear, be it of joy or sorrow, was shed as a family. Every milestone, every moment, was and will be experienced as a family. A’s journey is our's Family journey. Dad, Mom, Big Brother, Big Sister and, of course, Miss A