Tuesday, August 16, 2011

ACC the population continues to grow

I try to catch up on the http://scenicbeauty.tripod.com/AngelsAroundTheWorld.html website from time to time to see how all the other kiddos with ACC are doing. I am noticing a trend that there are more and more ACC kiddo's out there. While I love the support, advice, encouragement and awareness this brings to ACC  I do not like to see the growing population.  
I found one new blogger who has a son named Beau who had a wonderful post about "people starting to notice." this rings very true to my own heart and worries. 
http://www.bloggingforbeau.blogspot.com/  Here are some excerpts from her recent post about "people starting to notice" that really stuck with me.
"They're starting to notice that Beau may be a little different.  Ever since Beau was born, if you'd look at him, you wouldn't physically see anything that would make you think he was different somehow or had medical problems.  He's a beautiful little boy that looks just like any other little boy his age.  When he was a baby and we'd carry him around no one would know that he couldn't crawl or couldn't walk - they just assumed we were carrying him to carry him, after all he was a young child.  Other times we'd be places and he'd be in his stroller and once again, no one could tell that anything was wrong. "
"Adults don't realize that their comments or their stares, that come strictly out of curiosity, can sometimes hurt a mothers feelings. "
"I guess what I'm getting at, is that we are hitting another crossroads and transition period.  We are going from baby stage - where no one could tell anything was wrong with Beau - to late toddler stage where it is becoming more obvious that something is wrong.  "
" but it still gets me to think about what he faces in the future as it relates to stares, glares, bullying and mean comments.  I remember how hard it was in junior high and high school and how cruel people could be.  I was a typical child with no disabilities and I was teased so I can't imagine what lies ahead for Beau in the real world.  My only hope is that I can continue to talk, educate, advocate and create awareness so that a few less people out there will stare or tease or use terms like "retard" or "short bus", etc. "
"As a mother I hurt for my child but find peace in the fact that he is such a happy little boy and doesn't seem to let the worst of circumstances bring him down.  He wakes up every morning smiling and cooing and eager to start his day.  He seems to be finding beauty and joy in the life that has chosen him." I love this so much!

Another great post excerpt I found on Samuel's blog:
The site is KelleHampton.com
In her recent post she writes,

"I sat in my car holding a script for a blood test, Nella asleep in the back seat, and I cried for the first time in a long time. It's not really about Down syndrome either. It's far more related to the searing vulnerability loving a child brings. Maybe we feel it a bit more when we have a child with special needs, but everyone feels it at different places along the journey. I love them so deeply, so fiercely, so wholly that the thought of them not being okay is more painful than that of my own well-being. There is fear in parenthood, and maybe more with special needs parenting. That fear never really disappears, and I'm well aware it exists. My job is to find an appropriate place for it, not to bury it completely but to manage it, to never let it outshine our zest for life and adventure. Sometimes, it's good to go there. To think about the what-ifs and sympathize with the families that do experience this reality. And it's uncomfortable. But I am becoming familiar with the beautiful process of ups and downs, ebb and flow, victory and defeat. They depend upon each other. We wouldn't know defeat if we didn't have victory to measure it against, and we wouldn't understand that breath-taking happiness is so wonderful if we couldn't compare it with lesser days of disappointment."

I guess my point to posting these excerpts as well is to help bring awareness and acceptance to this rare disability that brings much heart ache and worry to parents. But none the less all these kids seem to have a few things in common: loving and concerned parents and utter happiness regardless of ACC. 

1 comment:

  1. Thank you for connecting with us! Finding another family touched by ACC makes my day. There aren't many of us out there but, you are right, our numbers are growing. I look forward to watching Cade grow and blossom!