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!!

Just say no

Remember D.A.R.E from 5th grade? Yeah I sure do. I took a lot of lessons from those sessions but I think I missed one. I must've missed the "just say no" part. I've completely and utterly overextended myself yet again. I mean who can't work full-time, be the PFC co-president, volunteer to do the kids class parties, teach a new class, maintain (or better yet grow) a marriage, keep three kids alive, and a dog, and four chickens, workout, eat healthy, try to be a better me for me, have good relationships with my kids, grow friendships, cultivate old friendships, keep up with emails, write agendas for meetings, organize camping trips, go camping then unpack from said trips, maintain a house, pay bills on time, grocery shop... I mean you get it, right?

This train wreck has pulled into the station and is taking a long, hard look at life. The "just say no" part of D.A.R.E was SO important, how come they only apply it to drugs and alcohol? Maybe they should have a refresher in college, when you are married, then again when you have kids... just saying! Today, I'm reevaluating.

What are my goals to be a better me? A better me means doing all of the things that I love too and not forgetting those in the shuffle. Part of being a better me means working out, giving attention to my kids, growing my marriage, helping friendships continue to grow... I have a big agenda and it's not getting smaller any time soon. For me, I'm going to start focusing on saying no instead of maybe, instead of yes, instead of let me think about it. Not because I WANT to say no, but because I NEED to say no... for me, for you, for everyone I love and adore.

Trust me, no one will die in the process of me saying no. No one will die if I don't do ALL of the class parties. My students will survive with me giving my all and cutting that all off by 10 pm. They need me sane as well as prepared. Lack of sleep leaves me unprepared and not sane, that's for sure. The junk mail, the junk emails, they can wait. The pile of papers by the door, that can wait too. The deep cleaning that I really want to do because it makes ME feel good, it'll have to wait.

There will be bumps along this road but I'm done overextending me. I'm doing what I need to do for me. Part of that includes increasing my water intake... simple yet forgotten. Part of that includes working out, lifting heavier weights and working out for less time. Part of that means sitting by the campfire to soak in the stars with my family.

Yes, this blog is about Bella. Ultimately, this blog is meant to help parents, women, mamas, working mamas... it's meant to help whoever it needs to help. Today, I'm hoping it helps you. Take a lesson from this mama, just say no. It's okay, I promise.

Bike victory!

Like I said in this post every day is a new day. We went on a play date yesterday and there was a strider bike that Bella decided she wanted to try.

"Mom, this isn't that hard!" I smiled and watched.

"Mom, we should take the training wheels off of my bike." We had a little conversation about how she first needed to work on her confidence and comfort so that bike riding was fun. Once that happened, we'll take the training wheels off.

Last night when we got home, Bella wanted to go on a bike ride. The boys were losing their minds one at a time so I opted to stay with them and have Ryan and Bella go. She came bursting into the house when they returned

"MOM, come watch me! Watch HOW FAST I CAN GO!" she was beyond excited. Fast for her is different than fast for Luca (his whole life is at a high speed level!)

I went outside and watched, I videoed and took pictures. I told her how proud I was of her. She talked about how she felt confident and comfortable.

"Mom, I'm getting WAY better at this. I feel so good riding my bike. It's fun and I feel comfortable now!" I was proud. I was proud that she had initiated bike riding, that she initiated speeding up a little, that she didn't get off and pull her bike... that she persevered and kept going.

Proud mama moment, proud daddy moment and most importantly, she was proud of herself!

Be the advocate

To say I'm frustrated is an understatement. A week ago, I spent over three hours on the phone with Scheck and Siress, Shriners and insurance. We've had one appointment at Shriner's and several at Scheck and Siress, this means that I've driven to Chicago and back at least four times for appointments. I'm lucky that I've been able to work these appointments around my work schedule and that I have days off during the week.

According to many parents in our support group at Camp No Limits, Scheck and Siress should have kicked the prosthetic bill back to Shriners. That didn't happen. Parents told me to talk to them both. When I got home from CNL that's when the calling began. Endless messages, calls, return calls, follow ups, more calls, more time, what felt like a lot of wasted time going around in a circle. My head was spinning and I felt defeated.

When we went to Shriners, we were not told that we would be referred out to someone else (in our case Scheck and Siress) to complete the prosthetic. As far as Shriners was concerned, they were done with us until we followed up after her final fitting. As far as Scheck and Siress goes, they made a product and wanted to be paid. I felt deceived. If we would have gone to her pediatrician here, she could have done the same thing the physician at Shriners did... wrote a prescription for a prosthetic due to her missing her left hand, a congenital anomaly. Instead, we drove 6 hours round trip for them to do it and then send us somewhere else. We could have brought the prescription back home to a prosthetic company that was closer. Instead, Shriners told us to follow the Scheck and Siress rep that was IN our appointment.

Please understand, I'm not bashing either. I'm simply telling you our story and our situation so that other parents in our situation can understand. I hope that this helps others to not be in the situation that we've been in recently. I hope that it can help one family to understand the process a bit better. It's not an easy one. I hope that I can help just one person have a process that's a bit easier than ours.

We are happy with the prosthetic that was created for Bella and it is serving our purpose. Our prosthetist at Scheck and Siress really worked to create a prosthetic that would work for Bella. He was nice and easy to work with. He listened to our thoughts and concerns and hers as well.

We are happy with the physician at Shriners. He didn't do anything "wrong". He simply gave us a prescription and wrote his notes in a way that allowed insurance to see the value of a prosthetic for Bella. This helped us and her to receive her prosthetic.

In the end, this has left us with about $850 out of pocket to Scheck and Siress.

Where does the round robin come in? It comes in because Shriners SHOULD have covered the cost IF they have POPS in their hospital (POPS is the prosthetic, orthotic, place there). Shriners in Chicago recently had POPS fully up and running... one month after our initial appointment. Why didn't they tell us this when we scheduled? "Hey if you wait a month, we can make her prosthetic right here in house and you'll save a ton of money"... it's too bad that conversation never occurred.

What are we finding out? We are finding out that FUTURE prosthetics will be covered IF they are made AT SHRINER'S. We are also finding out that not all Shriner's run the same. They are all different and they don't seem to streamline the process from one location to another.

I spent another hour on the phone just this week, advocating for us and for Bella. They are taking our situation up to the head of the hospital at Shriner's Chicago to see if there's anything they can do to help us financially with the cost of her prosthetic. Each day we live and we learn. In the past few months, I've learned that I will advocate for Bella's needs to the ends of the earth. I will continue to fight for her needs, even if that means exhaustion on my end. Today, I'm mentally and emotionally exhausted. My fight for her doesn't end today. I won't back down, I will continue to be there for her and be her voice!

Insurance stuff

Post picking up Bella's prosthetic, I called our insurance to talk about finances a bit. In the conversation, the lady on the phone asked why we had not gone to somewhere closer. She said "Hanger is very close to you and you could have gone there. They are an in network provider and would have been covered."

I proceeded to explain to her our experience with Hanger. Hanger had ME call our pediatrician to discuss with her Bella's needs and my concerns regarding Bella's limb difference and safety when it comes to sporting and gymnastics activities. I did talk to her and she asked the Hanger call and talk with her about the different options. The staff at Hanger told me that according to insurance, they couldn't do that because that would be considered soliciting. I asked how to educate her on the options and was left with not much information. Since when is it my job as her mother to educate the pediatrician? Surely there was someone more educated on prosthetics and options for Bella than me! I knew of what could be helpful for her but that by no means means that I am the expert!

There are several options for prosthetics. I am not well versed on any one prosthetic. I know a little bit about the few I've seen at Camp No Limits or that friends have used. That's the extent of our experience. Just because I've seen them, does not mean they will work for Bella. This is why I was consulting the experts.

I then talked to Hanger again after our appointment at Shriners. I asked them to get our notes from Dr. Ackerman. I left several messages with NO return call. Can you sense my frustration here? Did they not want our business? Do they not have time to get her records? What is the problem here?

The weird thing is that last year, Hanger provided Bella's scholarship to attend camp. I couldn't be more appreciative of that! I was disappointed that although they provided our scholarship to attend Camp No Limits, I was being left with a bad taste in my mouth after their service to my child as a customer and patient was neglected. Why would they provide a scholarship and then not want our business? I was confused and I still remain confused.

In the end, our business went to where Shriner's referred us to start. The problem with that is the location is a 3 hour drive each way (Ugh, Chicago traffic how I hate thee!). Scheck and Siress provided us with a prosthetist that was an expert in Bella's needs. He presented options and talked about how each would or could benefit her. In the end, we went with what insurance would approve as well as what his recommendations stated.

Why am I sharing this all with you? I'm sharing it because as a parent of a child with a limb difference, YOU are your child's biggest advocate! You must be the voice of your child. You must not back down. You must speak up to get the needs of your child met. You are the only one that can do this. Know that you are enough. You are doing the best job you can for your child, though at times, it may not seem like it. At times, you may feel like you've been knocked down. Pick your ass back up and prepare to be strong once again! You've got this, I promise.

If you feel like you are struggling, know that there is a community of others out there to help you. I reached out to Mary (CNL Director) and Keegan (CNL Mentor) more times than I can even remember. Each time, they helped me, they encouraged me, they made me feel good about what I was doing for Bella. They lifted me up. I'm here for you. Reach out if you need me, I'll help you! No one should struggle alone. Reach out to your community!! It takes a village my sweet friends.