Addy Grace

Addy Grace

Sunday, March 23, 2014

Fast Forward

Rather than continuing to chronicle Addy's early months, I want to get to the present. The reality is, her entry into the world was painful. It was happy. It was scary. It was all things wonderful, and all things terrifying. Revisiting those days were emotionally exhausting and trying. I literally relived every moment while writing about it, and now it's time to jump to the present because this is an amazing time with Addy.

What you need to know is this:

I struggled through August and September as a single mom dealing with a crazy toddler, and wrestling with my emotions about Addy's limb difference. I counted down the days, hours, and seconds until my husband would be back in the States, and would finally be able to hold our new miracle.

Once Nolan was home, we saw a specialist at Cincinnati Children's Hospital who was absolutely amazing. I was terrified to hear what he had to say, I had so many questions I wanted the answers to, but feared the answers just the same. Addy was examined, her scans were seen, and she was given a clear bill of health. The doctor was unable to tell us exactly why her arm stopped growing, but gave us several different scenarios of what could have taken place in utero. I hate not knowing exactly what happened, but he assured me it was nothing I did or did not do while pregnant, saying it was likely a "vascular anomaly". Technically, Addy has a form of symbrachydactyly, a congenital abnormality in which bones are missing from the arms, hands, and sometimes feet. In Addy's case, all together gone. We discussed our options as far as prosthetics go, and decided that we were not going to pursue anything unless Addy voiced an interest later on. Nolan and I both felt that because she has the use of her elbow, and her arm is very strong, we didn't want to hinder her from figuring things out on her own without the use of a prosthetic. If she decides she wants one later, we will move heaven and earth to get her the best one possible.

Most importantly, Addy has opened our eyes to a whole new world we were completely unaware of. My sister's boyfriend, Dan, was thoughtful enough to do some research while I was still in the hospital. He sent an email to my mother who later forwarded it to me when she felt the time was right. Dan had found several websites, books, support groups, and organizations all dealing with children and limb differences. The greatest of these was the Lucky Fin Project, and organization started by a mother who's daughter was born with symbrachydactyly, who took it upon herself to develop a network of support and informational materials in order to spread the word on limb differences and bring people together. There are no words to describe how amazing it was to be able to speak to other parents, and even meet a few at a get together I helped organize. I was hungry for information, for knowledge, for companionship through this journey, and The Lucky Fin Project was able to give me all of that. I will be forever greatful to Molly Stapleman, the organizations founder.

Addy has spent the past 8 months growing, learning, and amazing us. She's a beautiful little girl, both inside and out. I have finally became comfortable being out in public with Addy, for a while it was very hard. I had high levels of anxiety any time we went in public, which of course led to guilt and depression. I was so proud of my baby girl, she was unique and amazing, but I wasn't ready for some of the attention we received while out in public. It's taken me a while, but I'm better now. Now, I want to show her off. I am able to answer people's questions and not break down in tears. I carry a few postcards about The Lucky Fin Project, and hand them out whenever and wherever I can. I hope that I can help someone out there the way the LFP helped me, the way the other parents in the group helped me through my tough time. I still feel the strong need to do something, to help, to educate, and perhaps someday, I will get my opportunity. I know that Addy will do all of those things, both for me and our family and for the world around her, and I cannot wait to watch it happen.

She's amazing. She's our amazing Adalynn Grace.





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