Becoming Barbra

It happened again the other day.  We were out shopping and Cary Lynn was getting some extra attention.

"Oh aren't you just a doll baby?  Wook at how sweets you is."  Meanwhile, the "doll baby" was rolling her eyes.  When asked how old she was I said 5.  I was then told about how God sends precious angels to us all.  When I jokingly quipped that the "precious angel" just bit her brother ten minutes ago I was quickly reassured that Cary Lynn didn't have the sense to come in out of the rain.

I left at that point.

It's hard sometimes.  When the world is presented with children who have multiple disabilities assumptions are made.  Over and over.  Most of them fall into what kids can't do.  Or won't ever do. The bar is set so low I feel like I'm in a round of limbo.

One of the hardest things has been establishing that Cary Lynn is her own person.  That she has her own thoughts, dreams, and way of seeing the world around her.

When we brought her into our home at nine months old many applauded our decision.  We were taking this poor disabled child home with us.  Cue the sainthood music!!

I'm going to tell you a little secret.  We didn't pick Cary Lynn.  She picked us.  At day four of our first of many hospital stays when my world was unravelling bit by bit with every scary new doctor proclamation my child bit her first of many medical professionals.  After the Dr. left I looked at her and said, "You are my kind of people.  I think you'll fit in well with us.  Let's get you well and then you can come home to your family."  This kid had the nerve to look like she was pondering this!!!  I mean hello, I'm not that bad of a human right?   So I tried again, "C'mon, it's not like this is a Paris vacation.  You have a family that wants you so badly.  A mama, daddy, and brother.  And a room full of new toys!"  Well the word toys sealed the deal and I felt like this little human is going to challenge every last thing that I said and did henceforth and forever more.

And she has.  I am constantly kept on my toes with a child who is intent on outwitting me at every turn.  We clash frequently.  Cary Lynn, or Barbra, she renamed herself a couple of years ago at an educational consultation is a girl who knows what she wants.

Treat her like an imbecile she will ignore you or roll her eyes at you.  Tell her that it's time for therapy and you will hear the power of her lungs three blocks down the road.  Offer her ice cream, frosting, lollypops, or any sugar laden treat you are her best friend for life.  Read her stories and watch her eyes light up.  Ask her to use her communication book and watch her try to throw it or look blankly into space.  Engage her and see the fire within.  Teach her something new and watch her process. Bring her to a doctor that treats her like crap she will place a well deserved kick to the shin, a bite, or scream in their face.

She is her own person.  Don't get me wrong, she's also a part of a family unit.  But I can't always speak for her.  Because I'm not Cary Lynn (or Barbra).  I'm mom.  Now I get to call all the big shots like bedtime (which she ignores), healthy oral meal choices (which she spits in my face and then crowns for sugar), educational television (which she will nap in front of until the tv is magically changed to Peppa Pig), and her therapy schedule(which she takes off her diaper and pees everywhere).  So at this point we really see who's in charge around here.......

My daughter is amazing.  She's smart, loves to laugh, enjoys violent fairy tales, Peppa Pig, Peg and Cat, her doll Cynthia Arvella, and has her own way of doing things.  She keeps me on my toes and I can honestly say every day is an adventure around here.  Someday maybe the world will see the same thing that I see. They'll look past the disability and see the ability.  They see a whole new person. They'll see Barbra.

Celebrating Mother's Day

Well, I did it again.  I vow I won't every year but somehow my newsfeed finds the most depressing articles on Mother's Day and having children with special needs.

Before you start yelling, hear me out.  I KNOW every day is not a rosy ray of sunshine with unicorns dancing in the meadows.   I had to fight my almost ten year old to get out of bed and go on a fun field trip today (I'm so mean, I know).  He wanted to stay at home and cuddle.  I felt like a heel.  I also has to listen to my five year old wail all the way home because the John Denver CD bit the dust and she couldn't listen to Thank God I'm a Country Boy in a loop.  Then I had the nerve to put her in her gait trainer before our appointment and insist she have some physical activity before she's stuck in the car. If you count eat shattering screaming as proper lung development, we are all set.  So I know and I sympathize.

But there are so many amazing things.  Things that would never have happened had two children with medical conditions had not have shown up and tipped my world topsy turvey.  Here are five positive things that I've learned along this wild ride.

1. There are some amazing and strong women out there.  

Don't know any, look in the mirror mama.  You are strong and I admire you.  I know that you shed tears and worry that you are messing up.  I'm going to let you in on a secret.  We ALL worry about that.  I don't care if you have a child with or without disabilities.  Parenting is hard.  You are doing a killer job of it even if you don't think you are.

2.  Every day is a new chance.  

Even though we aren't promised tomorrow, sometimes it really helps to look forward to it if today has gone in the tank.  Lost your child's John Denver CD?   Tomorrow will be better because I can spend tonight burning a new copy!!  You messed up and questioned your ability to parent a Chia Pet, let alone this little human with so many extra needs?  Breathe, and see point number 1.

3.  A Village has my back.  

In the age we live on a few clicks connect me to people that I may have never met 15 or so years ago. Sometimes it's hard with appointments and Drs. to find time, but it's worth it.  Whether you have a village of two or two hundred it's important to find people who will love and care about you and your family.  My village knows my faults and flaws and embraces me for who I am, not what I wish I was.
4.  We become. 

In this journey we are often stretched to our limits and breaking points.  Yet we don't back down.  We become advocates. Because when you hold that little one you give up what you want and fight with every breath for what they need.  It's not easy but we become stronger and more determined to find cures, get testing done, locate the best care possible.  We become what our children need.

5.  Our kids are here for a reason and a purpose. 

I don't believe that there is some great cosmic zap and randomness occurs.  There is a purpose and a reason, even if we don't understand why.  Each person has a destiny to fulfill.  Even though they may have limitations and there is a reality my kids have a purpose that they were uniquely designed for and only they can do.  So does your child.

These are just a few reasons to celebrate being a mom.  There are so many out there.  Happy Mother's Day to some amazing moms who are advocating, standing strong, and above all loving their kids and seeing the amazing potential that they possess.