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.
Your husband's words, "She'll be a leftie. She'll be fine. She's perfect," I love it. And he's right! She is absolutely perfect, and she's soooo beautiful! I love the pics that you post of her, she has such a sweet, calm and loving look in her eyes. She has fantastic parents and will grow up doing everything that any other kid would be able to do, maybe even better! Like tying bows and knots with one hand, I did that when I was younger once, not thinking about it because I had a bag in my other hand and needed to tie my shorts. I was talking with my mom and her friend at the time and just did it. My mom's friend was like "you just tied a bow with one hand!" And ever since then, I have been able to do that. It's cool! She will amaze you and impress you as she grows, with the things she will be able to do with one hand, and it will be so natural to her to do them this way. It won't hold her back at all :) I can't wait to hear the stories! I know that you worry for her, with people being rude sometimes...just keep in mind who she has for parents, and that she will grow up strong and confident in herself, and this will be a strength for her in her life and she will know how capable she is, that she is amazing and perfect, just the way she is <3
ReplyDeleteYou have a gift for writing. All the love, fear, hope, awe, everything you hold for this little girl, comes through. This is not your fault, I know you know that. And she is perfect. She will do all the things other children do, I have a feeling she'll do even more. Thank you for sharing your joy, your concern, your hurts, because you are right; it inspires, encourages and empowers others. Give her a big hug from me!!!!
ReplyDeleteRachel, you are a wonderful writer and mama. Alara is lucky to have you. I am glad you are finding community. This to me is the best aspect of the internet. Thanks for sharing her with us!
ReplyDeleteXOXO
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