Saturday, April 17, 2010

Welcome to my world!

About nine years ago, shortly after Abby was born, I was determined to write a book about how to talk to a person with special needs or their parents.  People say & do the dumbest things when given the opportunity.  I've wondered how many people suffer from undiagnosed mental retardation?  "I know my child has a missing chromosome, what's your excuse?" often lingers under my breath when dealing with people.  I thank the Lord over & over that Abby can't understand most of what people say or even worse what they do.  I've debated on carrying around a "donation please" bucket to help those individuals who are logically challenged & have the spontaneous need to rectify their idiocy by giving us something.  I probably would've made a lot of money over the years.  But after several, "You are so lucky to be able to park in the front handicapped parking spaces," or "Why don't you let that child get out of that seat & run around,"  I wonder if writing a book would do any good?
It took me awhile just to get over the mom's group discussions or special prayer requests for trivial things such as teething or the common cold.  I couldn't sit in a room with a mom tearing up over potty training or an unsuccessful batch of cookies, while I spent my days in & out of doctors' offices & therapy rooms.  Their kids were running around the room while mine would barely hold her head up.  I was worrying about her being able to breathe & they were worrying about mispronounced consonants.  I soon realized that I didn't belong in their world.  My dreams of motherhood were shattered.  I loved my angel, but she didn't have the capacity to show me love... let alone look me in the face.  I would retreat to my isolated semblance of a world we created within our four walls or I would have to find a way to introduce Abby into theirs.  It took me about six years to venture out & see the jewel of a child I had the honor of mothering.  I didn't love her more, but I saw her through His eyes.  I saw her for the miracle she was.  He had a plan for her life... which included living.  Her job was to live in our home & our job was to let people be a part of our home.  I couldn't be a part of the world in the way I wanted to, but I could let people into ours.
I spent a lot of time with other families with children with special needs and found out there really isn't a universal treatment plan for the "outside" world to follow when dealing with us.  Everyone needed to be treated differently.  There is no universal "special needs" language to speak.  I tried to find the correct dialect, but instead found the tower of Babel.  We had the same visions to some extent, but we spoke different languages.  Some parents wanted out of the "special family" club & regarded anyone with such needs akin to the plague.  Some wanted to be handled with kit gloves.  They wanted everyone they met to feel sorry for them & show them appropriate pity.   I had to figure out how we wanted to live.  Those of you who exist outside of extreme abnormality cannot understand where we live unless you enter our universe.  It's a scary place to be when you fear frightening away friendships.  We've done it before.  We had friends before Abby was born & it was easy to blame them when our friendships dissolved.  They were all young couples without even typical kids.  They didn't know what to do & we didn't know what to ask.  We were drowning in a sea of overwhelming crazy unlike anything we had ever seen & they floated away... one after another.  On the inside I was screaming at the top of my lungs for someone to rescue me, but on the outside I grinned & hid my pains.  I couldn't liken our situation to anything but sheer lunacy, so I hid the frightful & bore my anguish alone.  I didn't have words to even talk to Andy about it.  I would open my journal to write, but sat there staring at the blank page until I closed it in utter despair.  I didn't know what to feel, so how could I teach someone else?
I wanted to leave the deserted island we were voluntarily on & join the human race on the mainland.  Sure, we're different, but it wasn't that bad.  I wanted to do life like everyone else.  Sure, that won't entirely happen the way it does for most, but I still wanted to try.  So, thus, here we are.
We're among you.  We exist in your world.  Sure, you do like to stare a bit too long & you still pull your children away from Abby at times like she has a contagious disease, but overall you're getting used to her.  You're getting used to us.  You don't rubber neck whenever she yells in church, but rather grin because you recognize the "not-so-common" happy noise & you're thankful for it.  You don't "hush" your kids because they ask why Abby can't talk or walk.  You actually know her story & use it to teach them the value of human life.  You know that God doesn't make mistakes, so you are okay to have Abby living in your world.  You give her a high five & recognize the lean in for a kiss, yet back away just in time to avoid  the left hook!  You aren't upset or uncomfortable when she pinches or pulls hair, but patiently correct her over & over & over & over again as you unravel her tightly wound fingers.  Your hearts skips a beat to see her walking again after a bout without appropriate bracing.  Her laugh truly lights up the room because you know you're witnessing a rare moment.  You've seen "crabby Abby" so you appreciate "happy Abby."  You've entered our world.  You've become a part of our lives.  You've listened to our struggles & have witnessed many tears, yet you remain.
THANK YOU!  From the bottom of my heart... thank you.  The Lord has a plan for Abby's life & it consists of living in your world rather than hiding behind institutional walls.  Thanks for opening your hearts & homes to her & to us.  I write now to open the door wider.


  1. I love your heart, Allison. I know life is tough and I really appreciate the way you take it on. I admire your strength. I know I should appreciate my kids more and be frustrated by them less. That is my new goal as I put the last year behind me. I feel privileged to at least read about your world. Thank you.

  2. wonderfully written!

    it IS a hard thing because everyone does want to be treated differently and it's hard not to step on someone's toes. the whole "PC" thing is difficult to deal with when you are just trying to treat people normally, because normal is so relative.

    forgive me when i am the one without an excuse! thanks for sharing your heart (here and last wednesday)!


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