Stand up for yourself

A couple of weeks ago we had a bus incident. I debated sharing or not but here I am typing so I've decided to share. I'm sharing Bella's side of the story because that's what I know. I also know that we've had a history with this child so that plays into my mind as well.

Bella got off the bus in hysterics. Her face was beat red and her eyes were bright red. The driver motioned for me to come closer so I did. 

"She got smacked by a kid at school while we were still at school and the principal came out. The child isn't on the bus but she's clearly upset. Has the school called you?"

"No the school hasn't called" I said as I tightly wrapped my arms around my daughter. 

"Do you know who it was?"

Bella interrupted and said "Benny T (name changed to protect privacy) did it"

"Thanks for letting me know" I said to the driver. 

"What happened Boo?" I said as I was walking back to the house. 

"Can we talk in private?"

So we got home and we went right into the bedroom to chat. She explained that the child did something sexually inappropriate on the bus in the morning and her and another child reported the behavior to the teachers. When she got on the bus that afternoon the child was angry and said he "knew that she told". Whether he actually knew or not, who knows and it doesn't matter. He proceeded to "tap" her on the face then open handed smack her. The principal was called and apparently according to the kids on the bus it was a disaster to get the kid off the bus. His parents were notified. I called the school IMMEDIATELY. The VP was meeting with the other parents so I had to leave a message. To say I was fuming was an understatement. 

While waiting I talked to my kids about self-defense and what we view as "good self-defense" in our house... while it may not be okay with everyone else, here is what I believe. If someone puts their hands on my child inappropriately, my child has every right to punch, kick, pinch, bite, hit to keep themselves safe. While you might not all agree with that, that's my thought... We can agree to disagree. I'm all about you doing you and I'll do me. For me, keeping my kids safe is a high priority and this is one way I encourage them to protect themselves.

The VP called back shortly after. Our school has a "We can't discuss the consequences for other kids policy"... which I think is complete crap. It involved MY child and I feel like I have the right to know what the consequence is. I may think it's fair or not but I do think that I have the right to know, just like if my child did something, the other parent has the right to know the consequence. Yes, I understand FERPA and no I'm not asking for NAMES from the school. I've even asked "What happens if MY child did that, what would the consequence be?" and was told they'd discuss that if it happened... well out of my control so I opted to do what I could control... which isn't much.

Here's what I asked for: I asked for my child to be moved on the bus so that she was no longer sitting across from this child any longer. That was granted the next time they were both on the bus. It was a stretch but I also asked for them not to be in the same class for next year, as we've had multiple incidents with this child this year... we'll see if that's granted. I don't think that my requests were out of line.

What do you do to teach your kids to stand up for themselves? Are there books you've read with them? How do you teach them to avoid kids that are constantly causing problems? A big issue at our house is that Bella thinks she can "help others learn to be nice"... we've talked about this but she still wants to try. I value that she's a strong, stubborn kid and wants the world to be a better place. I want to protect and cherish that her heart is not hard to the world. But there's a part of me that wants to help her realize that we can't change others... I'd love to hear your suggestions or words or wisdom! This parenting thing is no joke! 

I watched her sleeping

Last night, Bella asked to sleep in my bed since her daddy was working. I quickly agreed. Soon a day will come that she won't want to sleep in my bed. Tonight she did.

I got in bed late, as usual and looked over at her. Peacefully asleep on her daddy's pillow. Her long lashes rested on her cheeks, her whispy hair all over, her bunny next to her, all the covers kicked off. I watched her, I soaked her in. There next to me, lay my eight year old daughter. No longer a little peanut but instead a beautiful little girl took her place. Tears begin to softly roll down my cheeks. I couldn't shake the way I felt as I lie there and soak her in.

I remember being pregnant with her, wondering what she would be like, how she would grow, what her life would be like, what kind of person she would grow to be... so many what ifs.

Today,  I watched her as the tears rolled down my face onto my pillow. What a sweet soul she has become, always looking out for those around her. Always protecting her brothers and looking out for them. The other mother in our house. A bit of a worrier, a wonderer, sensitive, yet strong and stubborn, sassy but sweet and kind.

She patiently worked with Luca at the pool this passed weekend until he knew how to swim underwater at the tender age of four. She held her arms out as he jumped to her, his net of safety. She pushed him back to the stairs with the encouragement to try again, and again... and again. She tossed a toy to the bottom of the pool, went under, pulled it then explained the process to her little brother. She coached him on how to do the same thing, she reminded him that she would be right there. I didn't interfere, instead I just watched. I watched as she had the patience of a saint teaching her brother how to be just like her, swimming freely in the pool.

How was I so lucky to be this sweet girl's mama? How was it that 8 years had passed? How was it that now some of "what-ifs" were answered?

My dear girl,
You make me proud. Your kindness shines. Your laughter fills a room. Your warmness welcomes anyone to become your friend. I am proud of the sweet girl you are becoming and the way you treat those that are so lucky to be in your life. You guard my heart and are always thinking of how I'm feeling. You constantly remember that my dad died and how hard it must be for me without him. You are pushing me closer to God and pushing me outside of my comfort zone. Sometimes even grown ups need a push!

So you struggle with math, you get frustrated. My dear, life is not always easy. You pick yourself up again, you try again with all your might. You'll get it, be patient. I will always be her to pick you up and help you fight. You'll get it, we'll get it.

Know that it's okay to cry, for sadness and for joy. It shows that you have emotions and feelings. Life is all about expressing that to others. Showing them that you care, telling them that you love them and reminded them how happy they are. As I've said time and time again, I'm lucky to be your mama. I'm glad you are my daughter. There's no other daughter I would rather have in this planet.

As you grow, I wish you love, love like your daddy and I have. I wish you peace in your life, time for yourself and taking care of you. Peace when you feel overwhelmed or are hurting. I wish you friendships, like the friendship GG and mama have, an unending friendship that's there for life. I wish you happiness, like the happiness that I get when I'm reading with you at night. I wish you strength, strength to keep fighting, keep pushing, keep giving all of you to your life. I wish you adventure, the kind of adventure that makes life really worth living, the ones that make memories that last a lifetime. Money can't buy you happiness or peace, but adventure sure can!

Spread your wings my sweet child. I'll keep watching you soar!

Camp No Limits- The last full day

The morning ran the same, breakfast, energizers, OT/PT, life skills and sibling groups, lunch then peer support groups. During OT Bella got to try some other prosthetics, which was really fun AND she got to test out the i-limb. Can I mention that the i-limb costs $90,000?! Holy batman. It was really interesting to watch all of the upper limb difference kids try it. Bella was able to trigger it perfectly to get the hand to open and close... to which her response was "This will be my next hand!". Lord help me! I know there are grants and other programs that make this sort of thing possible. If she continues to use her sports arm, then we may pursue something more.

(Hungry hungry hippos, human style!)

Next up, slip and slide. This was insanely fun! Who knew?! We watched campers, staff, volunteers and parents go down. The facial expressions while watching at the bottom were hilarious! I know you are dying to know if I went down it... you bet! I mean it's not every day that theres a slip and slide that's big enough for an adult. Ryan didn't go down it. Loser :) I'd be lying if I said I wasn't afraid for my life while I went down. I did slide off the end and into the grass. It was quite fun and the kids are sure to agree.

Water front activities were next. We found out that Camp Cross doesn't have a provision in their contract for stand up paddle boards which meant that an adult had to be on the paddle boards when someone that was under 18 was using one. Bummer for the kids because they really enjoyed it. Next year, Mel talked about building this into our Camp No Limits programming. However, if you know someone in the Idaho/Wisconsin area that would come to Camp Cross and do adaptive sports, we could have a whole day of adaptive water front activities! Please connect them with me if you do! Email me

The last night is always a slide show, talent show, and dance. Honestly, I want to cry every time I see the slide show. There are so many moments that other people capture of my kids or other kids that make my heart melt. Watching ALL of the kids at camp grow in just a few short days is worth every penny. They make tremendous growth in activities of daily living, being more effective with or without prosthetics, running, walking, buttoning, pony tails, shoe tying... most of all, the amount of confidence they gain in this time is worth a million dollars.

The talent show... oh dear Lord where do I begin... with this I will share one photo before I tell more.

Please tell me that you didn't laugh? I about died a million deaths! What good sports these guys were! 

Shine's hair shop was a big success. The "customers" left with lip STAIN, moles, mascara and who knows what else. The best part of the talent show is seeing the kids have SO much confidence to present something that they are proud of or be creative. I love it! Not to mention, I loved that Ryan was willing to put on a dress, witches hat, wig and feather boa all for his daughter. I got a good one!

They finish the night up with a dance. By this point, Bella was exhausted. She's our girl that has no problem saying when she's ready for bed. About 45 minutes into the dance, she asked to go to bed! It was fun seeing all the kids just let loose and dance around. Even parents and volunteers got in on the action. Truly no judgement, which is the best part of the whole thing! 

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!

Face your fears

Earlier today I mentioned going a  bike ride. There was lots of excitement and everyone agreed. Should I mention that riding bikes with kids is like waiting for a train wreck to happen? No, really. Usually there's crying, screaming, crashing, cuts, bumps, bruises, more crying and frustration by all parties involved. Imagine all that times three...

One example: riding down the street... 

Kid one- crashes into a grass ditch and refuses to get back on the bike.

Kid two- is actually pulling their bike and not riding at all

Kid three- driving around like a wild drunk, crashing and doing it again... faster

(Pre-bike ride today, super excited, can you tell?!)

That sounds fun, right? Come on, doesn't it make you want to bike ride every day? Yeah, me neither. So for awhile, when we biked, I walked.... while ONE kid rode. This saved us all a little sanity. That can only last for so long though, so tonight I offered while praying to Calgon, God, Buddha, and anyone else that might be listening. 

Bella was SO excited, then I made her grab her new sports on with the bike attachment. Then she cried. 

"Mom, I do not want to do this. You are SO mean. Why are you forcing me to do this? You never listen to what I want. You are the worst mom ever. I don't even want this thing (pointing to the prosthetic). I never even asked for a bike hand. You wanted that, not me. I ONLY wanted the one for tumbling. UGH! I'm not going"

"Uh yeah you are. I'm sorry that you are not happy but you are trying this. I'll be right there to help you but you are wearing the prosthetic for ONE block."

More tears and frustration. "FINE but ONLY for ONE block!" 

"Sounds good!" she doesn't get a choice to brush her teeth or comb her hair because as her mother, I know best. She was not getting a choice about at least entertaining the option of trying the bike hand for one block. It's not like I was asking her for something crazy. It was completely reasonable and how would she know if she liked it or not if she didn't give it a chance.

Away the boys, Bella and I went down the street. Fifteen minutes later, we were three houses away. Yes that was NOT a typo, three houses people... HOUSES, not blocks! Bella was barely pedaling. The boys... see what I said earlier, they are those kids! I kept encouraging and giving support.

"You've got this Bella!"

"Good job pedaling, use your strong legs!"

"Go girl"

"You've got this!! Keep going!"

"Look at you! Nice work pedaling! You are doing great!"

"Keep it going sister!"

"Deep breath in and deep breath out, keep trying"

"Mom, I'm trying. I'm facing my fears. I'm really, really afraid. I'm scared I'm going to fall. I'm afraid, what if I fall? I'm trying hard mom. I'm breathing in and out. I can do this. I can try new things." She said to me and my heart took a hit. She was facing her fears of bike riding. She's unsteady even on training wheels. She's nervous and afraid. She needs a lot of encouragement. She was getting it. All that really mattered was that she was trying. 

About that time, her dad pedaling down the street on his bike! She was so excited. He rode up to the boys and stayed with them and would pedal back down by us. Slow and steady we were getting there. All of the boys in our crew were extra patient. 

At one point she asked to take off her prosthetic and I agree to let her at the end of the street. She didn't argue and kept going. At the end of the street, she stopped and asked if she could take it off. I helped her then stuck her prosthetic arm under my arm and we both rode off. About two turns of the pedal she piped up. 

"Mom I actually think it's easier with the prosthetic. Can you help me put it back on?" I did. I was actually happy that I had pushed it a little harder than she might have liked. She realized that it helped her be more steady. It helped her to have full control of the handle bars. 

Around the corner we went, slow and steady. We pedaled back in the driveway. I stopped to tell her how proud I was of her and that she did a really great job trying so hard. She really faced her fears and grabbed the bull by the horns. I shared with her that I was so proud that even though she was afraid, she still tried. That I was really proud of I told her, for trying! 

As we parked our bikes, she had one more thing to say...

"Mom tomorrow's my birthday. Do you think we could get me a new bike?" I simply smiled. We'll see!