When I started this site, it was really a way to share stories with families and friends. It was also therapeutic. I had a space to express how I felt as I juggled with the feelings of joy for having a sweet newborn baby and the sadness for knowing how my culture reacts to a child born “different.” But one of the best things I did with the help of this site and a couple of online groups was find opportunities to meet families. In 2006, the best ways I had to meet people was through I-CAN (International Child Amputee Network) and Sammy’s Friends.

There are so many more places to network and talk since then, but Sammy’s Friends has been a core group for me. There’s so much support and kindness there. Thanks to my relationships online, I was able to meet people in person during the summer of 2006. We met a little girl (who is much taller these days) who has a little arm above the elbow like Jordan. She lives in a county not too far away from us and her dad made sure we could meet up. The most powerful moment of that visit during lunch was watching her color at the table. She held the paper with her little arm with such ease. It was so great to have that little ‘aha’ moment knowing that Jordan would figure it all out. Jordan proved that to me as she accomplished every milestone… often in her own way. But it was comforting to know there are other kids and they’re doing great by just watching them in person.

That’s why in the summer of 2007, we attended the Helping Hands summer meetup. We spent two days playing and talking and enjoying each other’s company while Jordan was only 18 months old. She was cute, she was so comfortable around everyone and we had so much fun. It was eye opening for her brother as well to recognize how there are all kinds of other kids just like his sister (he was 5 years old at the time).

In 2009 we started attending Camp No Limits. The camp opened up a session in Missouri. There are also camps in California, Idaho, Florida, Maryland and the big camp is in Maine. It’s been one of the best experiences for the kids and I (unfortunately Randy has had to work the last couple of years). It’s so wonderful for families to spend time together to play, talk and learn. The limb different kids learn the importance of pilates - the reasoning behind it. (When you may be physically off balance, you are a much stronger and healthier person if your core is strong.)

Thanks to this website, I’ve had additional opportunities to meet up with families across the country. It seems everywhere we go, there’s a wonderful family that wants to meet and chat. It’s wonderful. I feel blessed. I’m not kidding when I think everyone gets a lot out of our meetups except Jordan. She is so accustomed to seeing kids and adults with limb differences. It’s just a way of life.

I’m not complaining. I just think it’s fascinating.

If you haven’t had a chance to meet limb difference families in person. I highly recommend finding a camp or organize a meetup in your area through on of the many groups online. I’m amazed by the growing number of pages on Facebook where people are connecting and sharing. Every time I find one, I add it to the Born Just Right Facebook page’s favorites link. If you think you can’t afford it, don’t be shy asking to see if there are scholarship opportunities. I use a county program that helps pay for our time at camp. It’s worth asking for help to give the amazing experience to my family.

Here are some other summer camps/events you might want to check out:
Helping Hands – They have a summer event in July
Hands to Love Hand Camp
I-CAN annual conference – This year it’s in Cleveland, Ohio
Amputee Coalition of America Youth Camp
Amputee Coalition of America National Conference – It’s in June and I’m planning on attending with Jordan
Colorado UnLimbited – BJR fan Ria Hurst wanted to share this group. You can keep up with meetups here.
Pikes Peak Amputee Connection – Another tip from Ria. Click here to check out the meetup page.

Other groups worth checking out:

Challenged Athletes Foundation – They have amazing events. If there’s one near you, you should check it out.
DASA – Disabled Athlete Sports Association – This is a group based in St. Louis and they’re holding a day-long sports event for special needs kids in my town next month. We’re totally checking that out.
Empowering Amputees - This is an online group and there is a limb difference group for families.

Please let me know if I missed anything. If there’s a group or a meet up that you attend and would like more families to join in, please let me know!

We had a great meetup yesterday at the Magic House just outside of St. Louis. We had a small but super fun group of families to play and get to know each other. The Magic House was crowded but we were able to have all kinds of fun. I can’t say enough about how powerful it is to spend time with kids who have similar differences. As a parent, it’s just comforting to see other kids doing awesome. And our kids benefit from getting to know each other. Knowing you aren’t alone is awesome. Miss Jordan is so NOT surprised when she meets a person with a limb difference or sees a picture of another child like herself. She’s lucky.

She’s also so lucky to have such fun little friends. She and her brother enjoyed their time at the Magic House with the group!! Enjoy the pictures. (And those who attended, expect an email with a link to see many, many more!)

I talk about offering support to other moms and dads of kids with limb differences. I use this blog as one way. Helping moderate the Sammy’s Friends listserv is another big way. I expanded this site onto Facebook and have had a chance to interact with so many other people. Jordan and I sometimes speak to classes – college level and preschool level. But I’m always looking for new ways. I try to keep up with a community in BabyCenter but I’m terrible at that.

So… I’m going to try a little harder to dig into the web world and keep track of news articles and developments for limb different kids. There are a lot of resources out there. I don’t use them all… Even though a piece of me wishes I took the time to reach out to more people. Wouldn’t it be amazing if we all worked together to support each other? Wouldn’t it be incredible if we all leaned on each other to help teach the many people in the world who can’t get over what they think a person is supposed to look like? Limb differences aren’t the end of the world. Our kids are going to be JUST fine.

I keep a list of sites I think offer perspectives and information to families on the right side of this site. Those are the links to “Sites I Watch.” Feel free to check them out and offer sites any time! I asked folks on the Born Just Right Facebook page for ideas. If you ever come up with one, feel free to post it there too!

Beyond sites… Here are a few other interesting articles/web pages I found:
The Amputee Coalition of America wrote an article on prosthetics and children with limb differences.
A list of limb difference terms from the Amputee Coalition of America.
Reach.org listed the stages parents can go through with limb different kids.
Another Amputee Coalition publication about parenting limb different kids called Expectations.
Baseball player Jim Abbott talks to his fans on this webpage. He’s an incredible advocate for kids and parents.

Sammy’s Friends member Michelle wanted to share this community program where she talks about sweet Annabelle and an organization that has really helped her family, Variety Children’s Charity of Detroit:

In the news… I stumbled into this really cool article about a 13-year-old British boy who was able to become the youngest person with an iLimb. I’m floored that a kid that young is fortunate to use such a functional (yet heavy) helper arm. Speaking of iLimbs, have you read about Sacramento, California’s Carly Davis? She recently got an iLimb and is heading into her second pageant this year. She’s competing in honor of the Sammy’s Friends kids. She did an awesome interview on the Fox station on Sacramento station that’s worth watching! You can even keep up with her pageant on her Facebook page.

I think I’ll also share a project I’m helping with at work. It’s called The Culture that Crawls – it’s a site about an organization that is helping people who are unable to walk get mobile with the help of wheelchairs and Personal Energy Transportation (PET) devices. Two reporters and a fabulous photographer went to Guatemala to help distribute devices. I feel mobility is an incredible gift that some have more easily than others. Hopefully we can help share the stories of the people in Guatemala and make a difference.

Jordan and I had a chance to go to a picnic with a whole bunch of limb different kids and their families this weekend. It was a lot like the impromptu gathering we had last year except this time it was a little further away from our house and we had even more families! It is SO awesome to meet and play with new kids and families.

Jordan got to spend time with a few friends who we talk about often, but don’t often enough. This picture is Jordan with a little friend who Jordan was thrilled to see and get her to giggle. She even shared her doll with her for a little while. It’s kind of funny, but Jordan is almost one of the older kids in the limb different crowd… Or at least she’s the oldest of the little kids!

The best part of our day beyond just the opportunity for all of us to spend time together was flying kites. One of the dads brought a TON of kites so the kids could enjoy the wind and a lot of space. It was so great to see each and every kid fly a kite – hands, no hand, legs, no legs… It didn’t matter. We were an awesome bunch.

Most of our group came together through two different groups: Sammy’s Friends and I-CAN (International Child Amputee Network). We’re so lucky to be connected this way… Without our wonderful kids we’d never have met!

I love connecting with families of children with limb differences and I crave learning stories from adult amputees to see if there are lessons I can share with Jordan. Not long ago I was invited to participate in a group called Amputee Empowerment Partners. The group is connected to the larger amputee world compared to the child-focused group I help moderate called Sammy’s Friends. The EAP site tipped me off on a powerful project that is underway by MSNBC. Reporters there are collecting and following stories of children an adults in Haiti who lost a limb (or limbs) in the January earthquake. The site has even asked readers to share their notes of support and knowledge as amputees.

I shared Jordan’s story on the site and she and I have started to look through the pictures and read about the many people in that country. I know we’re incredibly lucky to live where we live and get a high level of physical and occupational therapy and access to prosthetics. When I attended a conference earlier this year I met a group of grief counselors who are helping new Haitian amputees. Since I met them, they are printing out pictures and stories from this site and showing children and adults how Jordan is proof that a missing limb isn’t the end of the world.

Today I got a note from Jordan’s prosthetist, David Rotter, who told me he helped the Range of Motion Project (also known at ROMP) distribute prosthetics in Haiti while Extreme Home Makeover filmed an episode there. You have a chance to watch that tomorrow on ABC at 8pm ET/7pm CT. There are so many powerful stories that make me appreciate our life and Jordan’s access to services.

Thanks to the Sammy’s Friends group that I help co-moderate, two other families met up with us at the St. Louis Zoo today. We got to meet two sweet little girls who Jordan proudly noticed: “She has an arm like me!” It was so cool.

We all walked around the zoo, talked about things any family would talk about and then we’d periodically talk about little arms, Shriners, prosthetics and things we were/are worried about for our kids. It was a wonderful first time meeting and I can’t wait for more to come.

I can’t tell you how awesome it feels when you get to hang out with families who you would have never had a chance to meet without the help of our kids. I honestly feel we are all blessed to have this special connection. I am honored and it is amazing to see the places Jordan has helped take me – physically and in spirit as I grow each day with the help of both of my kids.

Miss Jordan is a natural with horses. It’s so cool to watch. She had equestrian therapy this afternoon and I got to watch everyone oooh and ahh about her ability to sit very upright even when she’s trotting with the horse. By the way, Jordan’s horse’s name is Thunder. She did so well today that her teacher let her feed Thunder a carrot. If it was so freaking cold outside I think Jordan would have been even more excited. Either way, she was thrilled. It’s a wonderful experience to watch such happiness from all of the kids taking part in the therapy.

We’re lucky to be able to take part in a county program that is paying for this class. Jordan’s fortunate to be able to get support here and there. This is a very cool opportunity.

Speaking of cool… It looks like there’s a meet up in the works this summer for limb different families in Missouri (and other states if the families are interested in the travel) to spend time together. I’m super excited. Our family is also looking forward to meeting up with a Sammy’s Friends family in a couple of weekends while I am in St. Louis to speak at a conference. Spending time with other families is one of the greatest feelings… To see our kids live a happy and regular life just like anyone else. And I’m so proud to see how Jordan is growing and learning everything she needs to know. I know when I met a older limb different kids when Jordan was a baby – it was so wonderful to see how these kids are awesome and able. It helped me parent Jordan with a confidence in knowing that she really can and will do it all.

The fun part? Jordan’s made sure we know that. That strong willed kid figures it all out.

Want an example? Tonight she put four different pajamas on to delay bed time. She took shirts on and off with no problem. It makes me pretty darn proud (and tired).

I had enough people ask… here it is: Jordan’s newest Dude. Where’s my arm? shirt. I love it. It’s the third size I’ve bought because I love it so much.

If you want to get one… You can find it at this Cafe Press website! Have fun and check out the Sammy’s Friends shirt site while you’re at it!