Finding Community When It Is Everywhere

by Jen Lee Reeves on April 11, 2014 · 4 comments

in 2014, limb difference community

I’ve mentioned a few times before how I founded Born Just Right because I didn’t have many resources when Jordan was born. All I had was my doctor using the term “amniotic band syndrome” and sent me on my way after we left the hospital. We knew Jordan’s joints were loose (they still are) and she didn’t have a left elbow or hand. In the years that followed, I’ve learned a lot. I’ve seen a lot of changes.

There are dozens of limb difference groups on Facebook. There are multiple websites and blogs. There are more and more people who are public figures who help represent limb differences to a larger mainstream audience. It’s pretty amazing. But how do you find the information that you need for your family? Read eight years of blog posts on this site? That seems like a lot of work.

I’m trying to wrap my head around the best resources out there and see if there’s a way I can collect and share the information that is available in an easier way for you. There are questions I see often: How do I help my child become more self-reliant (getting clothes on, potty training)? How do I help prepare my child for school (pre-school, Kindergarten, a new school district)? How do I deal with questions and how do I help my child deal with questions? Should my child go to physical or occupational therapy? How do you get the best prosthetics? Should my child use prosthetics?

The questions go on and on.

In the next few weeks, I’m going to start working on a content analysis of the information I have on Born Just Right. I’d love to hear from you and learn what resources you feel the limb difference world is still missing. What information are you struggling to find?

{ 4 comments… read them below or add one }

Diane April 11, 2014 at 10:36 am

When I was pregnant with my first child, I was very concerned about being able to care for and nurse my new baby with only my one hand or prosthesis. I searched for resources but never found any. My mom reassured me that I would figure it out just like I had figured out how to do many other things in my 32 years. My mom was right. I did figure it out and my daughter is now almost 14 and my son is almost 12. I think it would be helpful to include resources for first time parents who have limb differences.

Jen Lee Reeves April 11, 2014 at 11:14 am

Thanks, Diane! I know I have a lot of those resources buried in 8 years of blogs. It’s time to parse it out and make things easier!

Raelyn April 12, 2014 at 12:35 pm

I love, love, love this picture!! 😉
Have I ever told you about our German Lederhosen-wearing magnet? He is displayed on our front door. One day, my energetic two-year old niece, “Amethyst”, played with him. She danced the German Lederhosen-wearing magnet a little too roughly until his bottom left leg fell off. At first, I “fixed” it. But then “Amethyst” played with him again. Off went his leg. Now? I keep his leg off. And I smile at him every time, because he is special!! 😉
Love you later, Raelyn
PS. Diane, you are an inspiration to me!! I do mean that. 😉

Jen Lee Reeves April 14, 2014 at 10:29 am

Thanks, Raelyn!!

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