Our snow has melted… But before it did, Jordan spent as much time out in the cold stuff as possible. I actually had to bribe her with hot chocolate to come inside.

I caught a few moments of her outside… she wanted to build a snowman, but we didn’t really have that much snow. But I did convince her to make a little arm snow angel:

When Jordan was born six years ago, her brother was almost four years old and his friends had a lot of questions. One of the easiest ways to explain Jordan’s limb difference to kids was, “Remember Nemo and his lucky fin? Well, Jordan has a little arm just like his fin.”

These days, that explanation doesn’t always make sense to kids. A lot of little kids have NEVER seen the movie! I know that seems shocking, but it isn’t in Disney’s DVD rotation right now and there are kids falling outside the Nemo loop. So it was thrilling to hear this announcement:

Thank you Disney for bringing Nemo back this Fall and giving us a chance to celebrate limb differences again with the help of a very cute and brave clown fish.

I bought Jordan another coat. It isn’t something I planned in our budget… It’s just another one of those things that come up when you have a little arm.

I try to plan ahead. I buy things during January for the next year because winter stuff is so much cheaper. Last year I snagged a really cute Disney coat and even had Jordan’s name embroidered on it. It turned out to be the worst coat I’ve ever bought for her. It’s too puffy to roll the sleeves… And the sleeve is a little too skinny to easily fit her helper arm through it. Jordan spent most of the cold season complaining about the coat. (By the way, it’s such a cute coat.)

So I bought a new one yesterday. It isn’t as puffy and it has Velcro straps at the end of the sleeves. It rolls up so much easier and it met Jordan’s approval.

Zipper-wise? She’s pretty good at getting zippers up on some coats. The new one wasn’t too hard on the first try. But I’m encouraging her to unzip her coat like it’s a pullover. That way she doesn’t have to fully zip and unzip her coat. She’s a bit skeptical about this “easier” coat process… But it helps remove some of the stress of zipping when you’re in a time crunch.

It’s a clothing readjustment… Not a big deal, but these are the kind of things that our family has to do from time to time. We spend a little more money to change a coat or add in an extra activity to stay strong and healthy… It doesn’t seem like much, but I know these are the little things no one thinks about. We readjust from time to time while we figure out what Jordan needs. I learned a lesson this year: Pay better attention to the sleeves of a coat before I buy it. And from now on, I’ll probably buy the coat in person and roll up the sleeve instead of buying it online. (Yes, I realize we could alter the coat, but the sleeve length changes between when she wears a coat with or without her helper arm.)

Introducing Miss Jordan’s new swim paddle! Before we left Chicago we had a chance to hop into a hotel pool and test it out.

The paddle is attached to her arm with two rubber bands and velcro. It’s very different for Jordan since it holds on tightly and she’s not a fan of how it looks on her arm. (She says it looks “smooshy.”) But she did enjoy playing with it in the pool.

Check out the video of our test run and I hope we’re going to be back to swim lessons soon so we can really see if this is a solution. By the way, we wanted to work on creating a paddle because when Jordan swims without any assistance, she ends up swimming at an angle instead of straight forward. A paddle might give her a little extra pull.

Sure Jordan is a little young to party all the time… but she did get a chance to go to two different birthday parties over the weekend. She had a blast… But in one of the parties I watched a little girl staring at Jordan and clearly wanted to reach out and touch her arm without permission. I guess I just happened to look over at her and she had this look like she was in trouble… Her mom must have caught the interaction because she went over to her daughter and started whispering to her. I felt the need to interrupt and introduce her to Jordan (they had never met before). We talked about how Jordan was born with one hand and she can do everything she wants to do. Jordan just nodded her head. We talked about her helper arm and Jordan actually added in the conversation about her bike hand and how it helps her ride a bike. (I was so thrilled she joined in on the conversation)

So there was just one little thing that made me think that maybe I shouldn’t have interrupted the whispering mom and daughter. Every time I said something to explain what’s going on with Jordan the mom would interrupt me by saying, “That’s what I told her.” I wasn’t sure if it was to tell me how I should leave the conversation… so I just kept talking.

I’ve recently noticed Jordan taking a stand in public areas and asking people not to touch her arm. If it’s a child I know I’ll ask him or her to be sure to ask permission before touching Jordan. When a child asks, Jordan usually says no. And she has every right to say no. I can only imagine how annoying that can be for her.

I was asking Jordan to get ready for bed when she stopped everything and told me how she didn’t want her little arm. She wanted to grow another hand. She wants to be able to hand off an item from one hand to another… back and forth. I told her she could do that already. But she disagreed. She complained that she’ll drop the mythical thing that she wants to pass between each “hand.” I told her she has a helper hand that can do some of that work, but she immediately disagreed. The helper hands she currently has aren’t good enough. Then I told her that if there’s something she REALLY wants to be able to do, we’ll talk to her prosthetist Mr. David and we’ll find a way to help her do what she wants to do.

That wasn’t enough. She wanted a hand. She didn’t like her little arm. Her whining kicked up a notch.

I wanted to find another solution. But that’s when I had a slight glimmer of realization. She deserves to mourn. She needs to mourn. I felt sad when she was first born. As I rejoiced for her life, I cried for the knowledge that we’d have moments like this one. I cried knowing my daughter would have to face a culture that loves classic perfection and that she’d have to learn to accept herself. I cried in fear that she won’t accept herself.

So I stopped finding solutions. I picked her up. I let her talk about her sadness. I gave her a hug. I told her I understood. I told her that she is who she is and I love her.

After 15 minutes, she moved on from the conversation and got her pajamas (she pronounces it “bah-jah-mahs”) on and brushed her teeth. (Mind you, she did all of these things on her own.) We read her book, we said our prayer, I sang her a song. It was bed time. I closed the door and moved on to go find her brother for his bedtime. But before I could do that she got out of bed to go potty again. That’s her best delay tactic. But before she went back to bed, I stopped her. I told her how I love her. ALL of her. I love her from head to toe. That’s when she asked:
“Even my little arm?”

“OF COURSE your little arm!”

And that’s when I kissed her little arm.

“I love your little arm.”

I kissed her big arm.

“I love your other arm.”

I kissed her head.

“I love all of you.”

Jordan said: “I love you too. I love your clothes. I love your “bah-jah-mas.” She was proud that she expanded her love beyond the physical Mommy. I gave her a monster hug and she seemed to finally relax. It was like we finally moved past what was bothering her… At least this time around.

It felt good and sweet. And I think I finally let her mourn a little bit. I think I’m learning.

Hold up. Wait a second.

What did you say?

Randy stopped the escalating upset and calmly talked to Jordan about how everyone is different. He pointed out how he doesn’t have hair on his head and he wishes he had hair like some of the other daddies. But it’s what makes him different. He explained how her arm is what makes her different. I’m not sure how the conversation ended, but they calmed down. And today, Jordan spent a portion of the day singing a “everyone’s different” song that she made up. If she sings it again, I’ll try hard to catch it on video. It’s basically a chant where she sings the words “everyone’s different” to a catchy tune. But hopefully that little tune means something to her and it brings her peace.

Last week she flat out demanded I get her another hand because she didn’t like her little arm… I asked her about that and she goes… “Actually, I like my arm.” And she moved on.

Ahhhh! No one writes a how-to guide about this stuff! I feel pretty alone in this even though I know there are other parents around who have gone through this… But I am so afraid to mess up. Jordan is so confident. She is so strong. I don’t want to lose any of it. None. Of. It. I don’t want to put a crack in her wall of strength because I’m afraid I won’t be able to patch it up for her.

But so far, we’re doing okay. She’s VERY strong willed. So much so that my sanity is hanging on a thread. But she’s doing great and I know I shouldn’t worry. But I’m a mom. That’s what I do.

The kids and I wrapped up our Camp No Limits experience yesterday. This is the first time I’ve been able to get onto my computer since then. It was the first time the camp came to Missouri – so it was very small. But there are also camps in Maine, Florida and Idaho this year. Most years there’s also a camp in California.

This was the first time my kids had a chance to go to a “sleepover camp.” I was with them the whole time. I have to say four days and three nights is certainly enough for a mom with a three year old and a seven year old. I’m pooped. The kids are pooped too… But they loved it.

Jordan had a chance to meet more people with limb differences – including one girl who is RBE (right below elbow). We had a six-year-old who is RBK (right below knee) and a girl who is also RBK. The kids’ camp counselor also uses a prosthetic leg… One he built himself through his prosthetic practice in California. How cool is that? Jordan loved everyone… but I think it was extra cool to see her connect with an older kids who is like her. I realize it was probably cooler to me than it was to Jordan since a missing arm is no big deal and it never was for her. But in the long term, I think it’s great she gets to meet so many cool people who have similar differences. Check out this awesome little arm bump between the two girls:

Anyway… Jordan had a chance to learn a bit about Pilates. The idea is to work on building her core muscles so the ones she is missing doesn’t cause a lot of long term damage. Jordan wasn’t too into Pilates when I was around, but she warmed up to it when I didn’t attend the sessions. The one thing Jordan really got good at was riding her bike with her bike arm! We’re about to visit her prosthetist in Chicago to help make it easier to turn left (since it can be tricky without an elbow) — I’d have to say the enhancement of her prosthetic is less important after this week. Jordan can do a really great job! (Notice in the video below, she won’t even let me help her get a push start to get her moving. Dang she’s independent.)

The larger camps have sibling support sessions – but Cam and the other siblings got to hang out and have fun together in a less structured setting during this smaller camp. I’m certainly hoping to see this camp grow so we can do even more support and therapeutic sessions. The ultimate Camp No Limits is in Maine. It started with four families and has 27 so far this year. That’s pretty awesome. I saw pictures and some videos of the kids that take part in that camp. I’d love to be there some time.

In the meantime, we tried to boost this local camp. One of the local TV stations came to interview the organizers and get video of the kids being super cute. I have to say the camp environment was PERFECT for Jordan to work on using her bike hand and ride her bike all over the place. It was also a great way for both kids to just enjoy being outside in a pretty safe environment. Our camp had the Babler State Park group campground to ourselves. It was a great facility and SO accessible. Not to mention, the weather cooperated and gave us warm days but cool nights.

I have a silly number of photos… But my favorite are of Jordan riding her bike with pride, Cameron having fun in the pool and my little interview I held with the kids at the end of camp to see what they liked best.

If you’re interested in Camp No Limits, feel free to visit http://www.nolimitsfoundation.org. Heck, if you’re interested in donations, it would be great to get more funding for the Missouri camp so we can promote it more, recruit more families and make this into a really big deal next year.

Here’s a quick video that gives you a chance to see what the kids thought about their camp experience:

A few posts ago I told everyone about an experience at Walt Disney World where I was really uncomfortable about how a bathroom attendant spoke to Jordan and I. After writing it down and hearing hearing the reaction from some of you guys in the comments here… I decided to send an email to just inform the park about what happened. Hopefully they can help teach their cast members how to handle limb differences.

Heres’s the email I got back a couple of days ago:

Thank you for contacting the Walt Disney World® Resort.

All of our Cast Members are expected to behave in a professional manner at all times, and we are truly sorry for the experience you and Jordan had at Disney’s Animal Kingdom Theme Park.  When we receive comments from Guests, such as yours, they are shared with various areas of our organization.  This allows us to identify what we are doing right, and what we can do better.  You may be assured that your observations have been shared and taken seriously.

If you should wish to discuss your comments further, or provide us with additional details, you may call me at 407-###-####. If I am not immediately available when you call, please leave your telephone number and an indication of the best time to reach you.

Thank you again for taking the time to share your honest and constructive feedback. We hope to have future opportunities to entertain you at our Resort.

Sincerely,

Alexis Sanchez
Executive Offices
Walt Disney World® Resort