Thursday, September 27, 2012

Home Coming- Finding ABS Community (Amniotic Band Syndrome)

Just over 6 months ago I gave birth to my youngest, Alara True. She was born at home with no complications during my pregnancy, no ultrasounds and a fast labor. She took us by surprise from the moment of conception to today. We had no idea how much learning, growing or loving this little girl, would come from her. At her birth I was so unbelievably happy to have her all I saw was a perfect little angel. My husband was kind, gentle, and loving when he returned her to me after getting to hold her for his first time. His words, strength and calm will be with me forever. "She'll be a leftie. She'll be fine. She's perfect." And then he showed me what he knew I hadn't seen. She was missing her right hand.

Her arm up to her wrist was completely there. Just her little hand was missing. Nubs where her fingers would've been. In that moment I was filled with both feelings of joy and sorrow. As I began to feel stronger and the feeling of needing answers overwhelmed, I did what I've always done. A Google search. But it was much too early. What I saw and read made me even more scared and lonely.

It's taken me 6 months from then to go looking again. This time I had a better idea of what I was supposed to be looking for. Amniotic Band Syndrome. Our pediatrician will never be able to say 100% positive that's what happened (since we never had an ultrasound) but she has other patients that have been affected by it and she's confident in Alara's case too. What I've found this time around is only a handful of sites for those affected by ABS and a limb difference. But those sites now mean so much to me.

And as a blogger already, I know what one little blog can do to bring information, hope, strength, and the feeling of not being alone for someone. There's so many blogs, over the years that have helped me when I needed it most. I want to share Alara's story with those that need it. And hope to do this with her blog.

The search began (again) when a family member made a very hurtful, ignorant comment about me, about my daughter and by looks and stares we're starting to encounter in our community, now that she's getting bigger and her difference is more obvious. I needed strength and information if I was to fight this ignorance. I needed to reassure myself it wasn't my fault. I could feel it in my heart but needed ammo in my head.

I've found a wonderful community in blog land and on Facebook, even though I haven't yet gotten the nerve to introduce myself or Alara. I already feel like we're coming home with some. I posted a few links on FB to a few of the sites and a friend commented " I hope you are finding support and encouragement from them, all those kids seemed so...kid-like ha! You know what I mean, doing all the things that kids do, no limits." (I hope she doesn't mind I quoted her. She's one of our biggest cheerleaders, and closest friends.) And she was so right- I was so encouraged to see these older kids just like Alara doing these "normal" kid things I wasn't sure she'd do. My own ignorance is fading from others openness and sharing.

There are questions I still have for parents of children that were/are affected by ABS and with limb differences. What do you say when someone stares? or Has anyone ever said it was Your fault s/he is the way s/he is? And what did you say to them? These are examples. But these are also things I'd like to be able to answer in the future if someone needs them answered. (I really want to get a shirt printed that says "Staring is rude. Please just ask, we're happy to answer." to combat the looks.)

I hope to make this a weekly blog. And will be adding to the pages at the top as time comes. Sometimes it may be just a few photos to show what she's up to. Sometimes  how things are going in parent land. (You know like dealing with those rude comments and looks.) But mostly about how she is growing and being her.

So here's the beginning of her story. But we're no where near the end.