Sharing my passion at #140conf

by Jen Lee Reeves on September 20, 2011 · 2 comments

in 2011, Mommy Thoughts

I’m in Hutchinson, Kansas attending a 140 Characters Conference. Today’s topic is a collection of stories from small towns. If you like Twitter, you can see the discussion with the #140conf or #140confsmalltown. This is an opportunity for anyone to pitch an idea to speak about for 10 minutes.

My topic? How my job taught me to follow my passion. What does that mean? Well, this site has a lot to do with it all… but it all started with the career I chose. I’m a journalist and I always wanted to be a journalist who wants to make a difference in my community. Back when I started, journalism was how communities kept in touch with the information about what is going on. That has shifted dramatically as social media has made it possible for anyone to help and share information. But thanks to journalism, I’ve learned about the tools and process it takes to tell stories.

When Cameron was born, I created a geocities website about his life. Each week I’d build a new page about what he did that week so my family could keep up with him. My brother was in the Peace Corps in the Dominican Replublic, my ┬áparents were in South Florida, my in-laws in Kentucky and brother-in-law was in St. Louis. I wanted to help them connect with our lives so they could better know little Mr. Cameron. I was using my skills from work to talk about my child… and all of his little moments.

Geocities took a lot of time so in 2004 I hit the wall. I needed something easier to publish.. so I discovered blogging. I hopped in and started telling stories from my mom perspective. My blog became a space to experiment with photographer and words and any other tools I could discover online. At that same time I was easing myself into a world of helping manage an NBC affiliate and teach at the Missouri School of Journalism. That combined world is unusual and amazing and it’s given me a chance to learn about tools and tips that I would have never had without this job. It’s how I learned about podcasting and Facebook and eventually Twitter.

Many of the social tools that help us all connect these days were my personal tools back in the day. I was helping my newsroom build a new website and that’s when I got pregnant with Jordan. I was building my tech world at the same time I added a new mom blog. I didn’t think it was fair to just add our new child into Cameron’s blog. So I launched a second one. This site was so simple back then… Just the thrill of pregnancy and expectations.

Me speaking at #140conf / Photo courtesy of @commercialscott

We launched my newsroom’s new website two weeks before Jordan was born. When she was born, my focus shifted. It really did. We didn’t know about Jordan’s limb difference until she was born. And our doctor just told us not to worry and that Jordan had Amniotic Band Syndrome… where the amniotic sac breaks down and wraps around a child’s limb. I’ve been told by experts at Shriner’s Hospital that my doctor’s assumption was probably wrong. ABS usually causes multiple limb injuries and another little detail is a tell-tale sign. She has a tiny bud on her little arm that looks like it could have become a finger if her arm had had the chance to grow. The experts say that’s a sign that Jordan had some type of blood flow loss – either her heart blipped for a moment or she had a blod clot that stopped the growth. Either way, Randy and I knew she’d be okay. We really did.

We had a new baby with a physical difference and no information. None. My hospital and the doctors didn’t really know what to do. Who can help me? What will my child need? But I felt confident. I knew I could learn and find solutions. I’m a journalist. I ask questions, I dig, I question everything.

I also had a growing use of communities on the Internet. I already had a blog about this pregnancy… and my blog had a totally new focus: Life of a child who was born with a difference. I could verbalize my struggles, her struggles… and the cultural impact of an obviously difference child.

I immediately Googled amniotic band syndrome to learn what the heck was going on. I found a Yahoo Group to ask questions. That was the first place where I could get answers from people who had experiences I needed to hear. I felt less confused. I felt a little more focused. But I lived in a small town that didn’t really know how to give us the services we needed. So using the tools I was already using for work, I was on a personal quest. Each step along that way, I blogged about it. My need to share had a purpose. I wasn’t just talking to family, I was talking to a growing number of families who understand where I’m at. My focus of delivering information to my community had grown. My community had grown from my family and where I live to the world full of families… with or without special needs.

Summer of 2007 I discovered Twitter and I started to expand my reach to moms and dad and tech geeks and journalism geeks and just really great geek geeks. I met people who helped me with my personal quest to connect and learn and I quietly would mention my Born Just Right world. I kept my journalism world separate from my mom world. I used the moniker NerdyMom for the longest time. While I continued to grow my career, my mom world was growing. I was learning about the limb difference world. I was learning about the many different ways I help my daughter grow and be a confident person.

It was only about a year and a half ago when I started to merge both of my worlds. Because really, the reason I’m working hard with my job is because I’ve used so many tools to tell the tales of my children online. It’s because I found powerful connections on the web thanks to my kids.

All that online community has allowed me to take it right back to REAL LIFE. I learned with Jordan was six months old that having a chance to meet other kids with limb differences is a powerful experience for the kids and a just as powerful experience for the parents. And you know what? Every time I have a chance to talk one-on-one with a parent through this site or in person, it feels good. It feels amazing to be able to be a part of something I am so deeply passionate about and knowing I can make a difference… One child and one parent at a time.

So I’m on a quest. To spread the word about Born Just Right. And I feel so darn lucky to do it. Without my job, I could have never had the skills to build this site and the relationships I have made online and in person. Without this experience as a special needs parent, I would never have become the journalist I am today.

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{ 2 comments… read them below or add one }

Becky McCray September 22, 2011 at 3:12 pm

Thank you so much for sharing your story and your family at the 140 Conference. You helped make it a magical experience for everyone watching online and in person, and I’m sure you really touched some hearts!

Jen September 23, 2011 at 7:10 pm

Just stumbled onto your fabulous blog! My oldest son was born with fibular hemimelia (effecting his right leg) and I blog about it at fibularhemimleia.wordpress.com. I have connected with families and totally understand what you mean about how good it feels! Some experiences can be very different and also very much the same. The emotion of having a child born with a difference of any kind seem to be universal and so is the joy that they bring to our lives! Love your blog title too!

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