Tuesday, August 13, 2013

Growing our community

I have big plans for this blog in addition to raising funds for Bella's Camp No Limits experience. I hope to raise awareness about limb differences. I hope to help other parents teach their children about differences in others and ways to embrace them and not be afraid. Parenting is the most difficult job I've ever had in my life, I'm pretty sure my husband would agree. Ultimately, I'd also love to create a community in the greater Milwaukee area for kids with limb differences. I would like to have meet ups. I would love to have a community locally for parents and children to utilize.

I remember being pregnant with Bella and finding out about her limb difference. I could tell by the look on the ultrasound techs face that something was wrong. She kept running the ultrasound probe across my round belly and her eyes were darting around. I remember her pausing and saying all in one big breath "It's a girl but she doesn't have a left hand". I remember my eyes welling with tears because I was about to be the mother of a daughter! I had thought all along that a little girl was growing inside of me and people laughed when I said I already knew her gender before the ultrasound confirmation. I took a second then turned back to her and said "wait, what?" She repeated and said something like this "it's a girl but she doesn't have her left hand... I'll have to have the doctor come in to double check for sure but I'm positive." The tears rolled down my cheeks and I was silent. Ryan said "well we still have 20 weeks so she's grow one... Right?" I then had to explain to my husband that she would have one already if she was going to have one... that there was no "growing one" at this point in the pregnancy. We both cried. It was a moment of joy and a moment of fear all swallowed up in one.

Prior to our appointment, I couldn't wait to call everyone and tell them the gender of our first child. After our appointment, I felt different. I didn't want to call and say the words the tech had said to me. I just wanted to call and say "IT'S A GIRL", I wanted to yell from the roof tops "I'm going to the be the mama of a daughter!" Instead of screaming those words, I couldn't stop crying. I felt lost. The unknown scared me, it scared us. Ryan and I hugged and talked before calling anyone. We took a few moments for ourselves. I wanted someone to turn to that had answers. We called our parents, I called my brother and sister and then I called my best friend, Ginny (who is a pediatric nurse like me). I'll spare you the rest of the details.

I wanted a community, we wanted a community. We wanted people that we could reach out to ask all of the what if questions. How would she crawl? How would she hold a sippy cup? How would she open markers? Where would she wear her wedding ring? How would people respond to her when she was first born? Would they be afraid? How would children respond? How would she hold hands with her boyfriend and drive? How would she tie her shoes? How would she put on socks alone? Random questions, I know. There are so many more questions that filled our heads that day... We ran them by each other. We troubleshooted what the other person couldn't think of the answer to.

We googled... we googled A LOT. More than I like to remember. We tried to find a community of people we could turn to locally. There were none. We had a hard time actually talking to someone besides in a forum for parents of children with limb differences. I was lucky enough to find one mama in Michigan that was willing to chat with me over the phone about their experiences with their daughter. That hour long conversation brought me so much peace and so much comfort. I continue to wish we had a community here for parents and their children. I'm hoping that through this blog, I can help people connect. I'm always willing to meet with parents locally or have a conversation on the phone. So, please if you have any moms or dads that you think could benefit from talking to another parent, please direct them to the blog! If you have any parents or children in the Milwaukee or Kansas City areas, please have them reach out to me or pass their info on to me and I'll connect with them!


  1. Hello! my name is Danielle. My mother in law lives in Wisconsin and she emailed me a news article about your daughter. I am currently 30 almost 31 weeks pregnant with our second child and about a month or so ago we learned that our son will be born without a right hand. My family and I are currently stationed in Gulfport, MS and there are no support groups and I haven't been able to find any other parents that have children with missing limbs. I have so many questions to ask and so many emotions going on. I was wondering if I could ask a few questions that I have to you. My email is dstull123@yahoo.com Thanks!

    1. Danielle, I'm so sorry that I am just seeing your comment. I'm emailing you now!


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