Sunday, November 15, 2015


In the limb difference community, things come up that I sometimes have certain "feelings" about. Sometimes those feelings are hard to explain or put into words. The following can be summed up by the feeling of sadness...

There was a post today in one of my limb difference Facebook forums that discussed a gofundme account for a little girl. The account was set up by the mother of the child because she wants her child to have a hand transplant so she can "make heart shapes in photos like her cousins, to play baseball with her cousins, to tie her shoes, to do back bends, cut out her artwork, ride her bike without leaning forward, and hold two Barbie’s and have them talk to each others" Those are the mother's words, not mine.

Following the post on this page, parents of children with limb differences and adults with limb differences posted their views. One things I have learned and love about our community is the mass amount of support and love that surrounds us. I feel that there are always people I can reach to if I have a question or concern, if I'm feeling sad or need help with a situation. We are blessed beyond belief to have so many people around us that are available. The community is truly a family. Our camp family is just that, a family.

I've learned that sometimes we have different opinions and I'm always surprised by the people that weigh in, yet still remain kind and respectful. It's incredible. It's not just people pressing their opinion or thoughts on you. I think many of us agree that what works for one, does not always work for another. That's the thing about life and parenting too. I'm a working mom, some people don't agree. That's ok, it's their opinion. What works for one, does not always work for another. It's called acting like an adult and showing respect when voicing your thoughts.
(Bike riding with her own style!)

A flood of emotions came over me as I continued to read the gofundme page. I felt heartbroken. I fought back the tears. This is a life changing procedure. The child will have to be on antirejection medications for the rest of her life for something that is unnecessary. My daughter "makes heart shapes in photos" if she wants too. She ties her shoes!! She cuts out her artwork, heck she just cut out a bunch of stuff she wanted for Christmas from the toys R us catalog, I've never seen a child cut out so much, so fast :) She holds Barbies and they talk to each other. Often though, I'm playing Barbies with her.
(Painting jets at a Home Depot event)

The mama goes on to say her daughter "will never wear a wedding ring, paint her nails or braid her hair". My baby paints her nails if I let her :) She put her hair in a ponytail for the first time last week (THANK YOU CARRIE D.!) I would be willing to bet anyone that she will wear a wedding ring on her right hand. I mean, if she is in fact my child, she'll want to sport a little bling! The mama says "everyday things most take for granted are an obstacle for X" and "daily she feels defeated". I'm telling you people, my heart was breaking for the little girl and for her mama. This mama needs support, she needs encouragement so that she can give her daughter the confidence to go forth in the world with her head held high and her smile bright. I whole-heartedly believe that Bella doesn't view most things as an obstacle. I do not feel that she feels defeated daily or even weekly due to her difference. I would be be shocked if that were the case. I believe that Bella knows life no different, I believe she does everything to the best of her 6 year old ability, I also believe my boys do everything to the best of their abilities as well. Every child develops and learns at a different pace. In our house, we embrace those differences.
(Homemade play dough, as you can tell, the boys are thrilled!)

I'm not bashing this mama for her feelings. I've reached out to her. I want her to feel loved and supported. I would want nothing more to have her come to camp with us or any limb difference camp. I want her to feel the love in our community, the support, the encouragement. I want her to know that her child will grow to be successful and passionate about being the best that she can with the help and support of her mother. I believe that Bella is the way she is because we are encouraging and supportive. I also believe that she's my child so she inherited a fair share of sass and stubbornness as well (oh Lord, help her!!). I KNOW with 100% of my being that she can and will do anything that she puts her mind too!
(How she rolls! She dresses herself, picked out sunglasses, popped out the lenses and asked for pink spray in her hair. How I roll, I said sure!)

1 comment:

  1. Love and hugs and kisses to one of the best mommas I know. I too, feel bad for that other momma and her daughter. She evidently doesn't have the same self esteem that you do and thus cannot pass it along to her daughter. Maybe she's surrounded by people that reminding her that "normal" is the only way to be happy. Sadly, what she doesn't realize is that a hand transplant will never look like her daughter's own hand. The anti-rejection meds will put her daughter's life at risk. Prednisone alone will change her appearance and demeanor enough to make the addition of a hand seem small in comparison. Love you madly, Aunt CeeCee


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