Born Just Right We are all born just right Fri, 25 Jul 2014 15:47:38 +0000 en hourly 1 Getting to Know You Fri, 25 Jul 2014 15:47:38 +0000 Jen Lee Reeves

Nine years. This blog has lived and grown for nine years. It’s given me a chance to talk to many of you… But I haven’t had the chance to meet everyone in person.

But the in-person part is super special.

The last two weeks have given me a chance to meet even more Born Just Right readers… Some I did not realize made a connection to this site and others who have commented on this site for years but we just never met.

Each and every one of these meetings have made me so proud of what this site is and the community we’ve built through the years. We’re learning together. We’re growing and leaning on each other when we need it. I know I need it. Hugging a mom who I have talked to but never met in person is just the final puzzle piece of our friendship.

Last night, the kids and I met a family that connected to us when Jordan was a baby. We never met in person before. The kids were awesome together. The mom and I clicked because we’ve always clicked… except it was only online until last night.

It felt like our kids have known each other forever. And I am riding a bit of a post-meetup high from our time together. I’m so honored to have the opportunity to meet so many wonderful people. Thank you all for giving me that gift.

This weekend, we plan to meet up with even more families in Santa Cruz and another visit next Monday in Monterey. Please leave a comment if you think you might be able to join us. We’d love to meet you in person!

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The dog ate my fingers Mon, 21 Jul 2014 17:00:39 +0000 Jen Lee Reeves

It’s true. Our seven-month-old puppy, Bailey, ate Jordan’s “bouncy hand.” It was best used for some tumbling, volleyball and playing with some of the games on the Xbox Kinect.

But now the rubbery hand is missing fingers.


So now Jordan can tell people the dog ate her fingers. And he really did.

Now we need to discuss if she needs a replacement. She doesn’t use it all of the time. You can see by the dirt, it spend a lot of time at the bottom of her school backpack with her pencils.

I certainly know that if she gets another one, she needs to remember to zip up her backpack every single time.

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Learning about the new Derek arm Wed, 25 Jun 2014 11:30:43 +0000 Jen Lee Reeves

As I’ve written many times before, the 3D printing movement is amazing. The community of engineers, volunteers and visionaries are making really amazing things happen. I’ve watched the evolution of the e-NABLE group as it has raised awareness for open source prosthetic hand designs that anyone can build with specs and a 3D printer.

So far, kids and adults across the country and beyond have benefited from the e-NABLE community. The group is matching 3D printer owners with families in need of a printed hand. They have taken that effort a step forward this week… And have developed an inexpensive option for below elbow amputees. A $50 arm. For real! (And you know what’s next? e-NABLE designs for kids with above elbow differences like Jordan.)

The new e-NABLE arm is called the “Derek Arm” in honor of a 6-year-0ld boy they’ve fitted. You know you want to watch this video of him using his helper arm:

Woah. Way cool, right? I showed Jordan this video and she actually started bouncing around the house telling me how excited she was to see this video. Obviously, the e-NABLE crew have a next-level challenge on their hands to try and create an arm that includes an elbow function. But until then, we’re happy to cheer and encourage other kids and adults! We are certain that e-NABLE and the other 3D printing groups out there will continue to find awesome ways to make 3D printing more accessible to the general public.

It’s also neat to read how long-time Born Just Right reader, Nathan, is taking part in e-NABLE’s below elbow efforts. You can read the full story about the group’s new developments on their blog.

I plan to watch the e-NABLE group closely and I hope to share more details about the group here on Born Just Right soon.

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VIDEO: Using a kayak hand Sun, 22 Jun 2014 04:32:13 +0000 Jen Lee Reeves

Last summer, our family bought our very first kayak. It’s a used ocean kayak that we knew we’d love but waited many years until we finally purchased one. We bought some kayak paddles and Jordan got a canoe paddle. She was great at it. But she wanted to do more. She wanted to be able to kayak.

So last July, we worked on Jordan’s newest helper arm and made sure she had a hand that would make it possible to kayak. It’s a Lego-hand that also has a “wrist” that moves side to side. We had to wait almost a full year, but today was the moment of truth. Jordan got her helper arm on and hopped into the kayak.

We discovered Jordan tries to dig into the water like a canoe paddle and when she does that, her hand pops out. But once she mastered a more shallow paddle style, she was really pulling her weight in the kayak. Jordan learned paddling can be hard work, but she did such an awesome job.

This is a perfect example of why we work with prosthetics. Without owning one, we would have never been able to identify the different activities she wants extra help. Her Lego-hand not only helps with kayaking, it helps with biking. That’s a skill she’s struggled with for years. During Camp No Limits, she came closer than ever to mastering that skill. Tomorrow, she plans to keep working on it. She’s even excited. That’s a pretty big deal. Vacation rocks.
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VIDEO: Camp No Limits Missouri 2014 Mon, 16 Jun 2014 16:04:50 +0000 Jen Lee Reeves

After a year of building up to a very special long weekend, Camp No Limits Missouri has wrapped up. Jordan and I left early because I have more travel today, but we didn’t leave before the talent show and dance party. Either way, it was an emotional departure for Miss Jordan.

Camp was HUGE this year! 140 people attended and there were so many new faces. That was SO exciting.

I was lucky to be able to try and capture as much of the camp with my camera and luckily, many other parents pitched in to help share camp as well. As tradition holds, I put together a slide show video in time for the end of the talent show. This year was a bit unusual, I still had photos and videos coming in WHILE the kids were performing. But I think it turned out pretty great. Check it out:

Thanks again to so many of you who helped contribute to the scholarship fund that made it possible for so many people to attend camp. Missouri camp is now the second largest camp other than the one in Maine – and that one is huge. (Some day, I’ll get the kids there, I promise.)

I know I have so many stories to share, but I’ll tell you this one very quickly: When Jordan was preparing to go to camp this year, she told me she was ready to be a mentor to some of the younger kids in camp. I am proud to say I watched her multiple times take little ones under her wing. She taught how to Rainbow Loom, tie shoes and participate in the daily exercises. It was so super sweet. I’m very proud of the kid she’s growing into… Even if there are all kinds of bumps and valleys along the way.

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Camp No Limits has its special moments Sun, 15 Jun 2014 11:50:15 +0000 Jen Lee Reeves

There are so many special moments at Camp No Limits… Like when a child learns to tie her shoes for the first time or two kids shake hands while wearing prosthetics. And then there is a random moment when you look up and your daughter is wearing an E-nable hand on her little arm.

Um. That was super cool.

We wrapped up day 2 of Camp No Limits Missouri. We have an awesome crowd of kids and parents and siblings. I’m lucky to have the chance to help lead the parent support group meetings. It is SO FREAKING cool to be in a room with so many other parents who know what it’s like to try and guide a child through the experience of staring, prosthetics, 504 plans and more. I’m putting together a new camp video and I can’t wait to somehow get it done in time for tomorrow’s big talent show.

We did something a little different tonight for the Missouri camp. Most of the kids joined in on a fashion show. I had told Jordan to bring one of her pretty dresses but instead she wore her dance recital outfit… Which she plans to use for tomorrow’s talent show. But she also had her hair done SUPER fancy along with some make up. Dang, she looks grown up with make up.

NoneAnyway, the kids were fantastic!!! I can’t wait for tomorrow night’s big show and raffle. I can’t wait to share the end-of-camp video with you. Honestly, it’s incredible to have so many wonderful families here. The weather is amazing and the kids are having so much fun. Jordan is already telling me how sad she is that camp will end on Monday.


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Camp No Limits Season Kicks Off Fri, 13 Jun 2014 12:26:46 +0000 Jen Lee Reeves

We just wrapped up the softball season and now it’s time for another summer of Camp No Limits! We’re lucky to help kick off the string of summer camps here in Missouri. I can’t believe it starts today! Thanks to your donations, you’ve  helped make this year the LARGEST group every for Camp No Limits Missouri. We have 145 people attending! It blows my mind.

Jordan and I aren’t bringing Cameron with us this year and that feels a bit strange. But he’s having an amazing adventure with his school at the Teton Science School in Jackson Hole, Wyoming. He’s learning and exploring an incredible spot in our country. So while he has his adventure, Jordan and I can’t wait to meet SO many people at camp this weekend.

This year, I am not quite as organized as I have in years past. I’m up late right now packing and writing this post. I didn’t get a chance to make smaller kid sized Born Just Right t-shirts for the young campers. But I have a new camera and I can’t wait to be the camp’s photographer again this year. The photos of the kids learning and growing together is just plain awesome. Camp is also special because the siblings have time to be away from it all and talk about what it’s like to be a sibling of a limb different brother or sister. And the parents have time to themselves to talk with other grown-ups. The online connections we make in the limb different world is a big deal. But sometimes the face-to-face moments are important, too.

It blows my mind when I realize this is our SIXTH year attending Camp No Limits. Jordan was three and a half back then. She was a dynamic, hard-headed kid then. She’s the same but even more confident these days. I know she’s also looking forward to helping mentor some younger kids. She’s even bringing a special craft to do with willing participants! (That’s a tease for the campers!)

We can’t wait to share stories of camp here and on our Facebook page. Hooray for camp!

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Pool time without questions Mon, 02 Jun 2014 18:06:44 +0000 Jen Lee Reeves

We are in our second year attending a pool near our neighborhood. We joined as members and are pretty excited about the year-round access to the tennis courts. But it’s officially summer (even though school doesn’t end until Thursday) and that means we’re swimming A LOT. Our new pool is a super social space for both kids. A lot of their school friends swim there and I don’t have to keep them occupied. They’re growing up and getting to a point where they don’t even swim much together because they have their own little social swimming circles.

The funny thing is, I haven’t even thought about the challenge pool times presents to us at times… New kids and adults mean more questions and potential staring and pointing for Jordan. For some reason, this concern didn’t even pop into my mind this year. It’s our second summer at this pool. But that doesn’t mean there aren’t new members. I guess we just eased into the season so well, it didn’t pop into my head.

But it popped into Jordan’s head. I told her one of our Born Just Right families told me her son is doing a great job explaining his limb different at the pool. We were talking about that when Jordan mentioned how no one has asked her questions at the pool yet.

“They must be scared to ask.”

I asked her why she thinks people are scared to ask. Jordan says it’s because there’s usually someone with a question. So whoever that person is, he or she is too scared. I gave her an alternate reason. What if she’s so comfortable playing at the pool and swimming around, none of the kids feel the need to ask questions. She’s doing great. She’s having fun. She’s showing them how a limb difference can’t stop you from hanging out at the pool.

Maybe it’s a little bit of both. I don’t know. I hope I’m correct.

Either way, we’re having a lot of fun at the pool. No questions. No pointing. No staring. Just fun.

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The day a photo post overwhelmed me with support Thu, 29 May 2014 19:09:54 +0000 Jen Lee Reeves

Last night I took Jordan for a walk with the dog. I told her it was because the dog needed a walk, but really, she needed one. Jordan is hard-headed. If you’ve followed her growth from a baby, you’ll know she’s been determined and hard-headed from the very start. Ask her old occupational and physical therapists and they’ll tell you they saw a streak of independence very, very early on. I’m proud of her strength. I’ve fostered it. I’ve celebrated it.

But now that she’s eight-years-old, I’m learning this incredible strength she carries also comes with so many more lessons to learn as she grows up.

That’s because her hard-headedness sometimes leads to bad decisions that are rude, abrupt, whiny and at times obnoxious. I didn’t see it coming. I know I should have seen it coming. But I guess I thought the rebellion, self-focus and “always correct” attitude happened as a teenager.

I was wrong. It’s happening now.

And as I talk to more parents, this phase happens for quite a while, so I need to buck up and be ready to continuously teach Jordan right and wrong, even when she’s is 100 percent certain I am super wrong.

Yesterday was typical. I picked up Jordan from school and needed to take her and Cameron to the store. We needed to buy some food and pick up a prescription. For some reason, for Jordan, it was also a good time to whine and argue about everything. Everything was the end of the world. I just needed her to listen to herself. Jordan just couldn’t look inside herself to hear her loud tone and rude attitude. We talked. She cried. I canceled plans for her to attend her brother’s baseball game so she could go to bed on time. Maybe she needs more sleep.

Once the boys left for the baseball field after a normally slightly contentious dinner, Jordan was upset she was missing the game and life was so BORING. We took a walk. A little energy release can help. Even if she didn’t like the walk, we kept walking. And eventually she saw friends and even got to play a little street ball before bedtime. As we walked home, I snapped this picture:

I posted it on Instagram and Facebook and wrote, “I’m trying so hard to figure out the right balance when it comes to parenting this child.”

I didn’t expect the amount of support in reaction to this shot… Via Facebook comments, Instagram comments and other modes: gchat, email and even a phone call from a friend. I’m not alone, I have incredible support and I appreciate it so much. I just want this awesome girl to grow up to be an awesome woman. And this is a long and bumpy road. I can’t write everything is perfect, because it isn’t. And honestly, this is a phase we’re all going to come across if we are helping out kids grow up to be strong and confident. Kids don’t automatically figure out how strong and confident can still include polite and respectful. They have to learn it. And I think many of us in the special needs world who have empowered our kids with strength and confidence will come head to head with this challenge. I know I am not the perfect parent, but I’m trying so dang hard. I appreciate the circle of support I have near and far. In the meantime, I’ll continue to share the reality from time to time.

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The dance recital is back with a different challenge Fri, 23 May 2014 16:36:29 +0000 Jen Lee Reeves

“You know people pay more attention to dancers on stage who have differences,” Jordan said to me last night with a lot of certainty. “Especially ones like my little arm.”

We had just wrapped up five hours of a dance recital dress rehearsal. Jordan told me she knows more people look at her on stage because of her difference and that’s why she tries extra hard to do her best. It doesn’t bother her, but it motivates her.

It’s always interesting when Jordan opens up a little about life with her little arm. Earlier this week, she sliced her knee open when she tripped and fell down. Seven stitches later, Jordan was super scared she wouldn’t be able to perform well in her recital. We’ve done everything we can to help her leg heal and I’m pretty sure the doctor who gave her the stitches (who also happens to be one of my neighborhood friends) gave her a couple extra to make sure that knee stays together during the show.

So far, so good. Last night was the big dress rehearsal. Jordan ran through her jazz and tap dances and it didn’t look like she was having any trouble. We even found a wrap to protect her knee that is skin colored. I’m proud of her for pulling through a new challenge while recognizing her physical difference doesn’t hold her back on stage. But it might catch a little more attention when she performs.

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