Just another day at the pool

Last week I took the kids to our typical pool location for an afternoon of sun and water fun. We were playing. Bella was practicing flipping in the water. Luca was showing off his flipping abilities and Grayson learned in two seconds flat. Me, I didn't even try! So she tried flipping for a solid 2 hours, I mean seriously 120 minutes people. No joke! She didn't quite master it but she was persistent!

While I was working with her, I noticed two girls about her age watching. Then I realized they were talking about her hand. Sometimes I want to go all mama bear, but I hold back. That day, I realized what they were doing and I wondered if she realized. I finally asked "Did you notice those girls looking at you? Maybe they know how to flip." She approached them, introduced herself and then they started playing.

Later, her and I were sitting poolside while her brothers played. I always walk the line... do I ask if she noticed or do I say nothing and pretend I didn't notice. I opted to ask. "Bella did you notice those girls you were playing with looking at your hand?"

"No, why?"

"I noticed and wondered if they said anything when you were playing with them."

"No, they didn't say anything. We just played."

"Does it bother you when people stare?"

"Sometimes but most of the time, they'll ask if they have a question. But, if they don't, that's on them."

"True fact sister boo!" I said as I hugged her tight. We continued our conversation about something completely unrelated to those girls.

I thought about it later though. How would I feel if I were Bella? Would I be as confident as she is? Would I be able to just look passed it and invite them to play? Would I even notice the stares? My sweet girl is a bigger, bolder, braver, more confident than I am. Where did she get that? How do I continue that as she grows? I build her up, that's how. I build me up, that's how. I remind her how kind she is, how she's always looking out for others, how caring she is to others. I remind her that I am SO very proud to be her mother and I'm so glad she's my daughter. I remind her that she's currently my favorite 9 year old on the planet and she's my favorite daughter. Yes, we laugh, because she's the ONLY 9 year old in our house and she's my ONLY daughter. I'm her favorite mother too :)

How do I build me up so that she knows that she can continue to be confident? Some days I run around in work out clothes after a gross workout. Guess what, don't care! I'm strong and I got a good workout even if I smell like locker room. Today I encouraged the kids to check out my "bulging biceps" to which Grayson responded "Your weakceps?".  I responded right back "You wish! This mama is STRONG!" As I flexed my biceps. Strong or not in the eyes of others, in my eyes, I'm strong  currently and I'm cool if others don't think that. I build myself up by feeling comfortable in heels and a dress or sweats and no bra. I remind Bella that it's most important to be yourself. I remind her that most of my friends now are "new friends" from the kids school and my closest friends remain in touch frequently. I remind her that it doesn't matter what the rest of her grade thinks of her, that it matters what SHE thinks of her.

How do you build up your kids? What works at your house? What can I learn from you?

CAMP NO LIMITS all booked!

This picture was taken just last weekend while we were camping. Bella and I were walking around the camp ground just the girls. Dirty from camping all weekend, hiking, biking and exploring... BUT living our best life, in nature, with the ones we love.

Camping is one of our favorite things to do in the spring, summer and fall. It means disconnecting from life, phones, electronics. It means building bonds and making memories. That's what summer vacation is all about in my eyes.

Summer last year meant exploring Camp No Limits Idaho for the first time. We've explored others but we fell deeply in love with Idaho, the people, the location, the rustic cabins. Don't get me wrong, we LOVE Camp No Limits and every single location we've attended. Idaho camp just felt like we had found our home. While I totally realize that it's NOT a location for everyone, it was the prime location for us. It's rustic, like really rustic. We were "warned" if you will by other families and staff and I swore it was right up our alley. We got some side eyes and some laughs. Really though, it was. I barely got cell service, yay me! I was able to really focus on connecting with my kids, the other families there. One of my favorite pictures is a picture of a sibling at camp that's slathered in sunscreen that's not fully rubbed in. It was the first camp that we left that Bella cried, like body shaking cries.

We saw old friends and we made plenty of new friends. We literally can't wait to go back. We are counting down! Tickets were purchased, application was accepted... now to book a car rental and we are good to go! A little over a month to go, but who's counting? Oh that's right WE ARE!!

Giving Tuesday

Giving Tuesday kicks off the season after Thanksgiving. According to the Giving Tuesday website, it kicks off the "charitable season of giving". This giving tuesday, I'm asking you to really think about the organization that you pick to donate... that is if you do. I'm asking you to give mindfully not mindlessly. Many organizations take our money and very little goes to the actual cause. It bothers me to think that money I have given in years passed does not 100% go to the cause I am supporting. 

The organization that means the most to our family today and every day is Camp No Limits. As many of you know, we attend camp every year. If we could attend every location, we would! But alas, work, school, life and finances for travel get in our way. Camp truly makes our year brighter. While we only attend once a year, the friendships that we make through camp last a lifetime. The support and love carry us through to the next time we attend camp. It's like having a family that supports you and lifts you up when you meet struggles. The kids and families that we meet through camp change our lives. 

I'm asking you to consider giving to Camp No Limits or give to our fund for travels to get to camp. Last year, it cost us over $3200 to get to camp, between airfare and rental car amongst other things. That said, it was worth every penny. I will continue to work my tail off every year to make camp a possibility for our family. Without the help of you and others like you, we would not have been able to attend camp. Last year, we received a scholarship to pay for camp and we only had to pay the $3200 to get there! That's a HUGE blessing! 

If Giving Tuesday is not your thing, no worries, I'll simply ask that you spread awareness. Spread awareness about Camp No Limits, spread awareness about limb differences, share our names with others so that I may help another family that is in our shoes, so that I can help them advocate for their child, so that I can be the support that they need, so that camp can be the family that they need, so that they can be aware of the many people that are in their shoes! 

Thank you for considering. Thank you for following our blog, for listening to our stories. 

Navigating the 504

Apparently creating a 504 is easy for some and more difficult for others.

We were initially told by our principal that a health plan would be a better option for Bella. I trusted her and agreed. Then, after doing my own research, and a lot of it, I disagreed. A 504 would legally protect her and give something in firm writing that would help us to help her.

We were told that "if she qualifies"... I'm not sure how she wouldn't "qualify". If you read the legal language, she "qualifies"... Here is what I sent over to her school: According to the Dept. of Education website, the exact wording is "cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal..."

She was born with a congenital limb difference, which is an anatomical loss affecting her musculoskeletal system. This is documented on my prenatal record, her health care record, as well as easily visible to all.

I'm thankful for the Lucky Fin Project, Born Just Right, and Camp No Limits. Those places are primary places of support for our family in times like this. The people that are part of those sites bend over backwards to help, give advice, give guidance and support. It's essential when navigating things like this. As an "experienced" mom of a child with a limb difference, I'm still learning.

Why am I sharing this with you? Because this is already a trying process. It's taken a lot of effort and energy on my part. I'm working hard to make this happen for Bella. We need to have some things in place to help her continue to be successful in school, without injury and without overusing her right hand. Remember, that if your child has ONE hand, that hand does 100% of the work, 100% of the time.

I'm not saying your child needs a 504 just because they have a limb difference. I'm saying that my child does. She had a neck injury last year at school that could have been prevented. She also has complained over some soreness in her right hand, palm and fingers. I want to be sure I'm doing what's best for you. She's almost in third grade and so far, we've made no adaptations in school for her. This year, there will be some changes. This year, we have thought about some adaptations that will keep her safer and also keep her right hand in good order so that she doesn't cause injury at a young age. Any pressure we can take off of her right hand, we will. Talk to text is something our school utilizes currently so I'm hoping that she will be using it more so save her hand. That's something that can be "built" into our 504.

I want to do anything I can to help our community as well. Our official referral was sent over and now we are waiting once again. I'll keep you posted on the process as I find things out. If you have any questions, comments or advice, feel free to share! I've had a hard time finding 504 information for kids with limb differences. Most of the information that I search is popping up with kids that have ADHD.

Big thanks to all of the volunteers!

A big thank you to all of those that volunteered for Camp No Limits Idaho. Volunteers can truly make or break a camp. They help with occupational therapy, physical therapy, sibling groups, energizers... I mean they help with everything! They take on whatever role they need to in the moment.

Thank you for being adaptable, open minded, compassionate, passionate, caring and kind. Your energy makes all the difference. You all should have seen the volunteers during energizers in the morning, they were all over the place! They danced, they encouraged other campers to dance and siblings too. They created such a great energy at camp for everyone.

As a mother of a camper AND siblings, I appreciate everything you did to help this camp run smoothly. Having the sibling programs makes it possible for me to be part of Bella's therapies and activities. It also allowed me to spend time in parent support group. Missy goes out of her way to have fun activities with the sibling campers! Without all of you, I'm not sure Missy could (or would want to!) handle our two boys in addition to all of the other siblings. Having volunteers helps parents to be more at ease and know that all the siblings are getting plenty of attention AND having plenty of fun! Trust me, the boys had a great time and were telling us all about the activities that you did with them. They truly enjoyed every moment of camp, just as they did in years past!

I enjoyed having you be part of the parent support group as well. As I mother, this year, I learned a tremendous amount about Shriners, insurance and cost of prosthetics. I received support and encouragement from so many parents and volunteers. As a pediatric nursing professor, this also opened my eyes up to life outside of the hospital world. It allows me to see that these kids live full, fulfilled lives with a variety of limb differences and amputations. It allows me to go back and share with my students the things we as nurses should be aware of when dealing with patients and families in these situations. I talked to so many volunteers who said the same thing. I hope this opened your eyes and you'll share this information with your colleagues as well. 

Thank you for pushing our kids. Thank you for lifting them up, for creating trust with them, for encouraging them. Dylan watched Bella use her prosthetic and having him watch her and ask questions meant a lot to her. I only mention that because I was right there when he was there. I know there are a number of you I haven't mentioned by name but that doesn't mean I appreciate you any less. Bella really enjoyed not having me there with her for every moment, Miss Independent. Having volunteers and people other than her parents push her is highly important!

You each really took the time to get to know the campers and talk to them. You created lasting impacts on their lives and our lives. From the bottom of our hearts, thank you!!