Born Just Right We are all born just right Fri, 29 Aug 2014 16:23:22 +0000 en hourly 1 Why I hide my arm – An adult perspective Fri, 29 Aug 2014 14:30:52 +0000 christinemcminn

I’d like to introduce you to Christine. I’m lucky to have met Christine during this summer’s Nubability Athletics camp. (I snagged her for a selfie – she’s notorious about avoiding photography.) She attended the summer camp as an adult mentor. Before meeting her in person, she has offered fantastic insight on the Born Just Right Facebook page and right here in this website’s comments section. We had some really great conversations this summer and I asked her to offer some insight on growing up with a limb difference. I know as a parent, I’ve instinctively felt the need to prevent Jordan from hiding her little arm in public. I worried it was because she felt bad about herself. Christine offers insight that helps me (and hopefully you) better understand. -Jen

I can remember my first day at summer camp as clearly as if it were only a few weeks ago (rather than over two and a half decades ago!). From the excitement of finally being old enough to attend a week long overnight summer camp to the prospect of sleeping in a cabin to the thrill of being with my best friend, Heather, I was on cloud nine… All except for the fear of what the girls in my cabin would say when they noticed my hand, my heart anticipating a slew of seemingly endless questions.

As vividly as if it were yesterday, I remember putting my hand in my pocket and managing to keep anyone from noticing it until after dinner when one of the girls saw my hand as I opened my ice cream sandwich and the questions began. While the questions didn’t do anything to hinder my love for summer camp (I attended and later worked at least one camp every summer for more than a decade) and the friends that I made there, they are still a poignant memory from my childhood, a reminder of the attention that my hand draws.

To most two handed people, my hand is an oddity, an obscurity and a limitation. For me, it’s just part of who I am.

I was born missing the majority of my left hand. My hand consists of a small palm and a surgically created, non-opposable thumb (my whole hand fits in a toddler mitten).  Much of my childhood was spent at the Southern Illinois University School of Medicine’s Plastic Surgery Hand Clinic where my hand and my story were on display for every medical student and resident as six hand surgeries molded and shaped my hand for more functionality.

Somewhere between being a teaching tool for up and coming surgeons and hearing the questions and teasing of my peers, I began hiding my hand to avoid attention. I grew tired of explaining that I was born that way, hated the teasing and started to detest being a living medical example (sorry to the medical professionals out there!). I just wanted to be a kid.

I wanted to be noticed for normal kid stuff, like my grades or my talents. I didn’t want to be singled out or special and, most of all, didn’t want the pity that so often followed the questions. I just wanted to be myself and, in my mind as a child, that was best accomplished when I hid my hand.  Even now, my “little” hand is often in my pocket (though that is partly because it gets cold more easily than my other hand), under my arm, behind an object that I’m carrying, etc. After several decades, it’s an ingrained coping mechanism, a subconscious habit.

I don’t want my hand to define me, but it has definitely shaped me. It’s not my whole story, but it is a running theme throughout the chapters of my life. For me, it is a badge of honor, my greatest struggle and one of the things that makes me who I am. It’s taught me much about perseverance when those around you think you can’t do something, accepting those with differences and the joy that can be found in simple victories (finding a vegetable peeler that I can actually hold, finally learning to open my office door while holding a cup of coffee, etc.). I’m not ashamed of my hand or of its mark on my life because I don’t know who I would be without it. I simply don’t always want to share it with strangers (kind of an ironic statement considering this is a post on the internet!) because it seems like a personal thing to me.

To some, my response of hiding my hand may seem to be a sign that I’m ashamed of it or have a lack of confidence. I’m not sure that anything I say will sway their opinion on the matter, but my hand has never stopped me from attempting anything. I’m not ashamed of my hand. If I was, I wouldn’t use it every day, I wouldn’t talk about it with my friends and family and I certainly wouldn’t take jobs where I constantly interact with people, but these things are all true about me. I may do what I can to minimize the stares, but I haven’t avoided life and I would never recommend that anyone else do so either.

I want to be known for more than my hand, to be noticed for more than merely my missing digits, the one characteristic that, at times in my life, has overshadowed everything else about me. I’m all grown up now, but I still just want to be normal.

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Even Jordan gets nervous in new situations Thu, 28 Aug 2014 18:33:36 +0000 Jen Lee Reeves

I had mentioned earlier this week that Jordan was jumping into cross country. She jumped into all kinds of running events in the last year and wants to join in on kid triathlons next year. I’m really excited for her because she’s turning into a great runner and cross country is a fun way to get more involved. What took me off guard was her nervousness during our first evening practice. I don’t know why I am not more prepared. (She started off with some nervousness when she tried basketball for the first time earlier this year.)

When we got to practice, there were kids and parents sitting around listening to the coach speak about the season. Jordan looked all around and realized she didn’t know a single kid in the group. She often relies on friends to back her up when she deals with a ton of questions all at once. It is most certainly her confidence safety zone. Sending her off to her first run with the group led to her asking me to tell the coach she was nervous… And of course, the coach knew everything would be fine. Jordan just felt better having me speak up. My super independent kid still needs a little mom back-up. I appreciate that.

By the end of the first practice, Jordan says she made one friend who knows someone else with a limb difference and another girl who “might be a friend soon.” She’s opening up to a whole new circle of kids. It’s pretty awesome.

How do you overcome feeling nervous. Do you think you have tips that can help other kids and adults? I’d love to hear what others do to break out of the norm.

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How to respond to difficult questions Wed, 27 Aug 2014 11:40:04 +0000 Jen Lee Reeves

Difficult questions can be aggravating.

A physical difference is noticeable… and many cultures around the world struggle with accepting differences. Even if we live in a culture that doesn’t make it easy to live with a physical difference, I focus on helping Jordan grow up with confidence and the knowledge that she can try it all with one hand.

A part of that goal comes with the extra step of helping her learn how to respond to the questions and not taking them too seriously. Some of the questions are appropriate. (We think questions are better than staring.) Some questions are incredibly rude. I sometimes react to the challenging questions with a lot of emotion (that I usually keep to myself) while Jordan will roll her eyes and move on.

I am a member of dozens of support groups on social media that focus on how to parent or live inside the special needs world. There is often an ebb and flow of questions from parents on how to handle questions from children and adults. They range from logical questions (what happened?) to rude questions (aren’t you sad?). Over the summer, I decided I’d try to experiment with brainstorming on ways to react to the questions on the Born Just Right Facebook page. I posted a string of different questions and asked members of the community to share their input.

There were some pretty wonderful responses and I think it’s worth capturing that moment here on the blog so we can come back to these ideas when we need them. (Facebook isn’t known for easy searching.)

Here are some of the questions and the responses from the community… I also embedded the full conversation at the bottom of this post. Thank you to everyone who continues to participate and share on Born Just Right’s page. I really appreciate it.

What do you tell a child who says a limb difference is “scary” or “gross?”
Christine R.:”We try to turn it back around, “How would YOU feel if somebody said you looked “scary” or “gross?” and that seems to work pretty well so far.”
Christine M.: “You know, even as an adult, there is sting when a child says this to me. I know that that probably sounds silly, but those words hurt even when you know that the child is using the limited vocabulary and understanding that they have to process the situation. 
That said, especially with younger kids, I try to tee the opportunity to show them my hand and let them touch it. I tell them that it can’t hurt them and it doesn’t hurt me, so it isn’t something that should scare them. With older kids, I ask them how those words would make them feel and say that’s it just something different that makes me who I am.”
Mike S.: “‘It’s not scary but I understand why you think it’s different. Do you have something different about you? He has one hand, I have a funny birthmark, what do you have that’s different or special about you?’ I think especially for kids it’s important to get them to be introspective about the situation vs. concentrating on your child’s difference.”

How do you react when someone asks, “What happened?”
Barbara B.: “I say “Well, we don’t exactly know what happened. Even the medical community is not entirely sure. In my son’s case (symbrachydactyly) it is thought to be a vascular event, like a blood clot, which disrupts blood flow and did not allow the fingers to form.” I just keep my response matter-of-fact.”
Jen (from BJR): “In our case, I say that Jordan was born that way. For others, a limb difference may have happened due to an accident. I usually keep an answer to this question short and sweet unless the person follows it up with a ‘Why?’”
Kathleen W.: “When my daughter was a young teen and someone would ask she would tease and say a shark bit it off. I guess she was tired of the questions.”
Alissa S.: The shark thing, my son did too. My son is a twin And they are in Medical Journals Related to rare tumor . I had lots of questions why only one was missing an arm. As he got older he handled it very well and still does. He would go thru why doctors believe he had different arm he finally said a shark bit it off which made them all go, “Oh, wow” and leave him alone. As he got older in high school he used it as humor to get out of school work.”

I struggle with “I feel sorry for him.” I don’t want to invalidate other people’s feelings, but yeah, sometimes verbalizing your feelings towards my kid isn’t appropriate.
Christine M.: “I truly believe that most people are attempting to express genuine concern/interest and just have absolutely no idea as to how awful the things that they say sound. Children, especially, just don’t know what they are saying. 
In my opinion, rather than focusing on educating the people making comments (though there does need to be some of that), the best thing to do is work on teaching your child that those words do not define him/her as a person. The comments will always come and you can’t ever educate enough to stop them, but teaching your child to find his/her personhood and value will deflect the comments in a way that nothing else can. For me, my personhood and value are found primarily in my faith in Christ, as well as in my family, my friends, my interests and my community involvement. While this will be different based on each person, these kinds of things are the root of personhood and I think, no matter what they are, they are the foundation of who each person is.
As an aside, I think it gets better in adulthood, as least it did for me. I do still get questions and comments at times, but because my family, friends and co-workers all know me, it’s not a major topic of conversation in my daily life now like it was in my elementary/middle school days.”
Kathleen W: I would say it’s not sad and she can do far more than most two handed people. She crochets, does macrame, sews custom wedding gowns, works the computer like a pro, etc. etc.”
Therese H.: When they say ‘sad’, it’s tempting to real off a list of activities that our children can do to prove that they don’t have limitations. Depending on the conversation, I’ve started using sentences like “He’s such a happy kid, nothing really worries him and he is super comfortable with who he is.” “He makes friends easily and is kind and considerate, his little hand really doesn’t hold him back”. I try to keep the conversation centred on my son as a person, rather than just his abilities (though a good brag about his shoelace tying skills usually gets a mention!) Most people have good intentions and just say the first thing that pops into their head. But, as my son gets older, he understands what and why people say these comments. It’s more important than ever now that I don’t allow people to be rude and offend in front of my son. I also need to set an excellent example of how to answer positively, yet firmly to the rudeness. I think we all must have permanent scarring from the bite marks on our tongues!”
TJ W.: “I say “are you kidding? It’s a blessing. He’s no longer in pain and he can finally do everything he wants. Trust me it’s a blessing”

One extra post that may be worth reading is from our friends at Relaxed Mama in the Huffington Post:  The Words I’d Rather You Not Use For My Daughter

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Cross country season and other new changes Tue, 26 Aug 2014 15:58:47 +0000 Jen Lee Reeves

Today kicks off a brand new season of activities for the kids. Jordan has decided that she wants to start working toward her goal of participating in triathlons by joining our town’s youth cross country program. She and I started running together last year and she’s really taken to it. I’m excited she’s willing to jump into another new experience. In two weeks, she also gets back into dance where she plans to take completely new classes: hip hop and musical theater. It’s so fun to watch her get the chance to find the activities she really enjoys.

Add in Cameron’s activities at school and after school and then I start thinking about work travel… It all starts to feel super overwhelming.

And that’s why we’re going to start something new in our family starting next week. Instead of scrounging for babysitters on the weeks when I’m out of town, we’ve decided to bring in a new person to help us out in the afternoons… Even when I’m in town. Some of my friends have pushed me in the direction toward a part-time nanny for the last year or so. They’ve reminded me that I deserve a little more sanity in a non-stop life. It may help me not feel like my head is always spinning as I juggle the job, kids, house, dog and whatever else is on my plate. Our school’s after-school program was incredible for the last seven years. I’m sad to see us walk away from the wonderful people who take care of the kids there. But I’m excited to have someone pitch in on my crazy life. It all comes together as Randy moves into a bigger newsroom job that doesn’t make it as easy to walk away from work when help is needed. So many changes. I hope they are for the better!

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How Winter the Dolphin inspires Jordan Mon, 25 Aug 2014 15:18:32 +0000 Jen Lee Reeves

One month after the movie, Dolphin Tale, was released, our family had a special gift of visiting Winter at the Clearwater Marine Aquarium. October 2011 will forever be a special memory for us. But it also changed the way we view prosthetics in our household.
 When Jordan was a baby and we started using prosthetics, we were told to have her wear her helper arms all day long. Obviously that was upsetting to Jordan. Her little arm holds the keys to all kinds of sensory needs. A helper arm blocks access to that. So I struggled with the balance of what the experts told me versus the other developmental needs of my child. It was tricky.

Most days it came down to just making sure Jordan wore that arm a bit. It helped her grow strength she would have had a much harder time gaining otherwise. And when she was little, logic was tough. I had a hard time explaining why she needed to wear that arm… Except that I told her it “helps” and we call it a “helper arm” for that reason. As we brought in activity hands to ride a bike, kayak, play on monkey bars or swim, it make more sense as well.

But our trip to Winter helped everything really make sense.

See, Winter has a prosthetic tail because her spine was eroding because she doesn’t swim the way most dolphins swim. She swims side to side like a fish instead of up and down like a dolphin. Her spine wasn’t made to do that. When she wears her tail for about an hour a day (that’s what we learned at the Clearwater Marine Aquarium), it gives her spine a break and helps prevent worsening her spinal damage.

That’s exactly why Jordan wears her helper arm. She uses her shoulder like an elbow. But if she keeps it going, Jordan is headed down a path of long term repetitive strain injuries and chronic pain. Wearing her arm at least an hour a day, gives her shoulder a break. And thanks to Winter, that all makes sense.

Over the weekend, Jordan and I had a chance to go to the new Dolphin Tale 2 movie. Before we walked into the movie theater, I asked Jordan some questions about inspiration and how Winter helps inspire:

It’s so cool to see her grow and see how experiences from years ago still have an impact on her today. I’m still incredibly thankful for the opportunity. We plan to share our review of the movie when it comes out on September 12th. That’s also the weekend we plan to have a Dolphin Tale 2 party in our town to raise money for Camp No Limits. We can’t wait! (And if you have any items you’d be interested in donating for a raffle, please let me know!)
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Celebrating the new school year while Mom is away Tue, 19 Aug 2014 05:05:54 +0000 Jen Lee Reeves

I have an amazing opportunity to speak at a TEDx event at the Poynter Institute in St. Petersburg, Florida today. I’s a huge honor but it also means I’m missing the kids’ first day of school. I know there are a lot of parents who are never able to send their kids off on the first day, but with Cameron going into seventh and Jordan going into third, this is a first for me.

To make up for it, I took “first day of school” pictures during back-to-school night just so I can have pictures to compare and contrast the kids at the end of the school year. I also was able to put a small Hallmark gift to work as a little surprise for the kids.

During our super cool visit to Hallmark, I was given a gift of two small Sound Charms that let you record a short message. I knew it would be a perfect way to sort of “be” with the kids on their first day. I recorded a message for Cam and hid it with his keys in his backpack.

For Jordan, I left the decoration hanging from her backpack and figured out a way she wouldn’t notice it until I was out of town.

It’s super dooper sweet. Jordan noticed the charm pretty quickly after I left town. She listened to it a lot… So much, Cameron was worried I didn’t get him one. Luckily, I snagged charm for him and recorded a different message. (I was worried he’d think he was too old for a message from me. I was wrong!) Cam’s charm was hidden deep inside his backpack with his keys. He had a chance to get a little reason to smile.

Thanks again, Hallmark, for giving us so many wonderful memories and a special gift to help the kids start the school year with smiles.

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Back to school planning before third grade Mon, 18 Aug 2014 11:44:24 +0000 Jen Lee Reeves

Jordan heads back to elementary school this week. She’s kicking off third grade with a lot of excitement. She tells me she is looking forward to everything… Even the homework! Earlier this summer, she told me she felt like third grade was a good time to stop creating yearly class books that tell her story. But when we attended back-to-school night last week, our teacher told us there are a lot of new kids who are new to the school in the class.

So… the official Jordan’s Third Grade Book was born:

Jordan’s Third Grade Book by Jen Lee Reeves

The cool thing about the little about me book is seeing so many other families kicking the school year off with one. Elementary school is such a wonderful age to teach how we are all born just right.

We’re ready for another great year! One of Jordan’s favorite friends is in her class again this year. She’s also looking forward to meeting the new kids. After such an adventurous summer, I’m hoping we can get into the groove pretty quickly. Along with school, Jordan plans to join our local youth cross county team and she’s taking two dance classes on different days. Sprinkle in a weekly piano lesson and we will have a very busy kid!

I hope everyone has a fantastic start to their school year.

If you are looking for additional posts we’ve written about the school year:
Sharing support for the new school year (Jordan’s pep talk)
Preparing for a 504 plan
Talking to Kindergarten parents

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An Under Armour thank you Fri, 15 Aug 2014 18:11:52 +0000 Jen Lee Reeves

Zippers are not impossible with an upper limb difference, but it can be something that takes a little extra time. Jordan learned how to zip at Camp No Limits many years ago. But when Under Armour announced last year it was producing MagZip clothing for the 2014 fall season, I couldn’t wait. When I noticed a few items for sale earlier this month, I jumped and purchased a boy’s jacket because it really doesn’t matter and the MagZip is more important than the color. I snagged a grey jacket for Miss Jordan.

I posted Jordan trying a MagZip for the first time earlier this week and Under Armour noticed. A member of UA’s youth marketing team reached out and offered to share a few other examples of Under Armour’s MagZip wear. The arrived today and Jordan loves them.
How cool is that?

Even better? Jordan is mastering the art of the MagZip.

By her third jacket, she was really rocking the MagZip. I feel really lucky to have been given the chance to talk to Under Armour about the impact this zipper has on people with zipping challenges. I know Jordan considers it a thrill.
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The gift of friendship near and far Fri, 15 Aug 2014 13:37:36 +0000 Jen Lee Reeves

It’s pretty amazing how many connections we have made from the limb difference world thanks to Born Just Right. This summer, our travel gave us opportunities to meet many new adults and children in the limb difference world. A combination of Camp No Limits, Nubability Camp and a trip to California where we held two meet ups means a whole lot of new faces and names. Being a part of the special needs world makes an instant connection between kids and their parents. The adults with limb differences have also made a big difference for me and the other parents who have had a chance to talk with them. (I’ve written in the past how important it is to talk to adults with limb differences.)

Thanks to our California gatherings, another mom reached out to me and we were able to have her daughter meet Jordan while we were in Kansas City. Another sweet opportunity for kids and parents to connect.

There are so many reasons to find ways to take our online world into the real world. Some of our recent awesome moments included:

Sharing how to tie shoes with one hand
Each time we met up with families, the topic of tying shoes came up. Jordan was lucky to show off her skills while we were in Santa Cruz. The coolest part is how confident Jordan has gotten at tying and how she’s able to talk through the process. I should probably create an updated video on how she does it so more kids can learn.

Learning more about e-NABLE 3D printed hands

John Wong was born with a hand difference and he brought TWO different e-NABLE hands with him to share with the group. The Cyborg Beast (the blue hand you can see in the picture above) was made for John by Nick Parker and debuted it at the Crowd Companies Summit in May 2014. John had also just gotten a FidoHand, made by Dan Bodner, who is also an e-NABLE member. John tried out the hand with Cameron while they pretended to fake 3D hand fight. (That had a lot of people staring at us on the Santa Cruz Boardwalk!)
We also had a change to see an iLimb in action (Thanks, Carly!) during our meet up in Monterey the next day. I love how we got to experience the full spectrum of prosthetics within 48 hours.

A surprise limb difference meeting 
While I was attending and speaking at the BlogHer national conference, I had a bunch of friends let me know I *had* to meet Samantha from Airplane Rides and Guac Sides. She was in a terrible crash when she was a kid and lost a lot of her right arm when she was a kid. Of course, when someone sees a limb difference, they immediately want to connect me. And I think that’s AWESOME. Because watching Jordan get the chance to hang out with Sam made me very happy.

Gaining unexpected lessons
Jordan had a chance to get tips on one-handed cartwheels. (She hasn’t perfected them yet.) We also learned a new way to create a one-handed pony-tail… Basically you twist it into a bun and slide the rubber band that’s around your hand down over the bun. I wish I had shot video of it! We’ll shoot a video once Jordan has figured out this technique.

Getting through the logistics and finally meeting
Getting a crew of families to meet up can be a logistical mess. I made it extra challenging in Santa Cruz because getting in and out of the area can be tricky thanks to so many tourists. But we had a wonderful group. We enjoyed rides, games, and ice cream. The next day, a few of us met in Monterey at the Aquarium. I’ve had big and small meet ups… and each and every time, it’s totally woth it.

Thank you to the many people who took the time to meet with us this summer. Really, thank you to anyone who met up with us at any time in the last eight and a half years. It’s always awesome to take these online conversations in person.

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VIDEO: Trying Under Armour’s MagZip for the first time Tue, 12 Aug 2014 15:38:24 +0000 Jen Lee Reeves

It finally arrived, an Under Armour MagZip jacket that I wrote about last fall. Almost the moment Jordan got out of bed this morning, I had her try it for the first time. I didn’t explain how it worked, I just challenged her to give it a try.

I think she likes it. The base of the zipper uses a magnet to connect and it’s pretty easy to get the zipper up. So far, I can only find two youth boys jackets for sale on the Under Armour website. Hopefully they’ll expand the line soon! (UPDATE: That link has more jackets! There are girls jackets and at least one women’s jacket.)

This is what the MagZip looks like.

By the way, Under Armour didn’t pay me to write this post. I paid full price. I have been hungry to try this jacket as soon as I could. I can’t wait for more people to have the chance to use these zippers.

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