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!

Our first meeting post 504

The PE teacher reached out to me for a meeting related to Bella's 504 plan. I met with two of the PE teachers to discuss fitness testing that would be coming up and football. Okay, head injury central! Hopefully she doesn't like football :) That's the nurse mom in me talking. Back to the story, so we set up a before school meeting to talk about their ideas.

When we met, they were prepared with the items that would be used for fitness testing and what they thought Bella would need. They didn't forsee any concerns or issues with her doing well, but they wanted to be sure that they were doing what was best for her. I'm glad that they were really putting some thought into her limb difference and what that meant in PE for her.

Needless to say, we both agreed that she should wear her prosthetic for any weight bearing activities on her upper limbs. Push ups was one of the things on the fitness testing. The prosthetic allows her to keep her wrist joint safe. I fear that while she could do the pushup without it, it could cause injury to her wrist joint. She does have movement in her left wrist and we need to continue to protect that. The other item was curl ups (like sit ups but coming up farther). They showed me what Bella would need to do in order to be successful. We agreed that wearing the prosthetic would put some weight on her left side to keep her spine straight during the curl up.

It was a short, sweet meeting. In and out in about 30 minutes. Those are my perfect meetings, a good agenda that is stuck to and people who are focused!

I must say, while I was excited about the meeting, it bummed me out a little that we had to have a 504 in place for more action to be taken. This is precisely why I advocated for Bella to have a 504. Having it in writing somehow makes it happen, at least for us. Does everyone with a limb difference need a 504? No... I mean it's taken us until 3rd grade to "need" one... though in the back of my mind, I can't help but wonder if having one last year would have protected her from her neck/head injury.

Be a bucket filler

Tonight, Grayson and I were snuggling in bed talking about his day. This kid kills me sometimes. Tonight was one of those nights. I got in his bed and as I was getting settled he said "How was your day mom?" He's genuinely concerned about how my day went, he listens and asks questions. It's the sweetest. It reminds me to sit, to be still and to really be in the moment with him. He's been melting my heart into a puddle since he was born with his big eyes starring up at me.

I was telling him a story about how a patient told one of my student's that she was glad she took care of her. I told him how it made me so happy because it made my student know how appreciated she was, it made her so happy. He said "yeah that kid was filling her bucket".

Confused I said "what?"

"Mom, she's a bucket filler, the patient because she filled your student's bucket with happiness and made her feel good".

"Oh yeah, she was totally a bucket filler and my student's bucket was getting filled up!"

He went on to talk about how you can fill people's bucket. He told me how his teacher fills his bucket, how friend's fill his bucket and how he fills up people's bucket. It was the sweetest, most genuine conversation with my super sweet hearted boy.

I asked "How do I fill your bucket up?"

"Mom you just love me, that's all!" with the most sincere smile on his face.

That's right my sweet boy, I do love you. I just love you so... someday you'll fully understand the depth of my love.

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.

My tender little heart

Yesterday was the first day of school, I'll share those highlights later. Tonight, I almost cried while listening to our Bella read about history. Blah, most boring thing ever to this mama. She had read me a book and I was reading her a book about President Truman. One line red "During his presidency, some Americans criticized him."

"What does criticize mean mama?"

"Hm... it kind of means like judge people."

"Like how? Give me an example."

"Bella your math is not that good, you really aren't good at math." She smiled. Then she stopped.

Deep in thought, she said "That's what Mike (*name changed for privacy) did to me last year. He criticized me all of the time. That's tough."

"Yeah that didn't make you feel good. It can make people work harder because they see it as a challenge OR it can make you sad because you are trying your best and they are hurting you."

"Yeah but here's the thing. It did make me work harder. It also made me be nicer to Mike. He needed that from me. You never really know what other people need. He needed that because you don't know if someone hasn't been nice to him or what his life is like at home. You just don't know. Being kind to him, showed him that I wouldn't criticize him back."

"Wow Bella, you impress me. That would have really frustrated me and I'm not sure if I could have been nice like you. I'm super proud of you for thinking about what he needs even it's hard for you."

Just like that, we continued reading. Then we stopped and snuggled. I told her how proud I was of her and how happy I was that she was my daughter. Proud doesn't even describe the full emotions that I feel for her grown up thoughts. When I grow up, I hope I'm more like her.

My heart and soul

I've had a rough week, as a mom, as an educator, as a wife, as a daughter. I can talk more about that later. With all that said, I've cried 3 times this week. Some weeks are just like that. I was thankful for it to be Friday and have a long weekend before school starts for the kids AND for me too!

Bella was having a rough night. Luca really wanted to sleep with her, the little snuggle bug. She needed some space. She agreed because she knew how bad he wanted to and that we'd allow it because it was the weekend. Then, she melted into a million emotions.

We talked and she expressed a lot of emotions. When I told her that I understood her being stressed out and feeling out of sorts. There's been a lot going on in our lives individually and as a family. She has such a pure heart and a genuine soul. When we continued talking, she expressed that she trusted "you and Daddy, I really know that I can trust you. If I tell you something and ask you not to tell anyone, you don't." My heart melted into a million pieces. She realizes that she can confide in me and that I won't tell anyone. This says a lot about what she thinks about me. I'm glad that she knows that I'm a trusting person.

As we continued to talk, she made me realize that I'm doing okay as a mom. Sometimes as moms, we really struggle. I struggle with working full time, being a mom, doing volunteer stuff for school, being a wife, a good friend, maintaining our marriage, feeding my soul, working out and feeling strong... it's a constant balance. Sometimes, one side of the scale is heavier than the other. Today it was. Bella said to me "you and dad are really great parents, you really are." I thanked her for sharing that with me. I told her how I was proud of her and that's she's a really great kid.

Tonight, the scale was heavy on the mom side. Tonight, I cried happy tears. My girl gets me.

To my Bella Boo

Bella,

How is it that 8 years ago today I was panicking because I was about to be a mother? I waited for this moment for what seemed like all of my life, yet somehow, I felt so unprepared. I was nervous to be responsible for you, would I give you enough of me? Would I make the right choices as your mother? Would I survive on little to no sleep? Would I produce enough breastmilk? Would you know how much I loved you?

Eight years later, I can say that I've done the best I can as your mother. I've given you all of me at every moment. You are worth it my sweet girl.

Your kindness amazes me. Your continue to think of others before yourself. You are always worried about making people welcome and happy. You have a way with babies, they love you. You make friends every place you go. You are becoming more confident. You are facing your fears. You are reasonable and do a great job expressing what you need from us. You are growing up to be such an amazing little girl. I love watching you interact with babies and how you make silly faces and get them to smile. I love watching you interact with other kids and holding their hand and taking the lead. I love how you tell people about your hand and then continue on with your activity. Watching you with special needs children melts my heart. You are so patient and so sweet. You really are thoughtful in your interactions. I'm so very proud of you. I love going to goodwill with you. I love watching you learn about money and really think hard. I love listening to you read and watching you create. You amaze me.

Happy 8th birthday my love! Thank you for making me a mama. I'm so lucky to be your mama! I'm happy you are my only girl. You make me so proud and I hope I make you proud too. Happy birthday Bella Bug!

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!!

Sibling care

Yesterday, after we received Bella's prosthetic, we had another appointment for one of her brothers. Bella and Grayson attend "sibling care" at Children's Hospital of Wisconsin while I attend the appointment with Luca. It's a really great resource for the siblings, they get a lot of attention, there's tons of toys and creative activities and the get to interact with some really great people. Mary is one of them.

I've worked with Mary at Children's for many years. She's held a number of roles. She's also married to one of the chaplain's who I happen to adore. I've been able to interact with her on a nurse level and now as a parent. She's amazing.

I dropped the kids at sibling care yesterday and carried on at my appointment with Luca. It takes about an hour each time and we have weekly appointments. Bella and Grayson have grown familiar with Mary and are very comfortable with her.

Bella wanted to share with Mary that she had just picked up her prosthetic. Mary asked "can I ask some questions and you can say pass if you don't want to answer?" Once again, she's amazing and the one she prefaced this to Bella was so kind. Bella said "Sure"

"Were you born without your hand or did something happen?"

"I was born like this."

"So you've never been able to experience life with two hands."

"No"

"Soooooo tell me what was it like to put on the prosthetic for the first time? Was it just ok? Was it totally awesome? was it different?"

"It was TOTALLY awesome!"

I could hear the excitement in Bella's voice and my heart skipped a beat. I gave Mary the look... how kind and loving that she asked her and genuinely showed her excitement for Bella. We continued to talk about Camp No Limits and how she'll learn to really use it this coming weekend. Mary expressed her interest, wrote down the name of camp and told Bella she couldn't wait to hear all about it. Mary's expressions on her face said it all and Bella's face lit up.

After all the struggles with appointments, all the back and forth of driving, all of the complete exhaustion on my part, the tears on her part from being stuck in a car... the world melted away and it was all worth it. In that moment, everything I've worked so hard to do for this girl came back to me ten fold. I had done something that was so much more then fight with insurance and tons of driving. I had helped her to open doors ahead of her. I had helped her to realize that we will fight to the ends of the earth for her. I had given it my all and it was worth it. SHE was worth it. This moment was worth it.

We have a prosthetic!

When I say we, I mean Bella... I mean it's hers but it's ours too, especially mine since I've worked my tail off on this to make it happen and make it happen right. This girl has no idea and that's a-okay. Someday, she'll appreciate me even more... or I can hope.

Today, we drove to Scheck and Siress to pick up her FINAL prosthetic. She has a terminal device and two adaptations. This means nothing to you "non-prosthetic" people. It means everything to her. She's made me promise to keep it a secret and not post ANY pictures until she shows it off at Camp No Limits, which happens on Thursday. The suspense is killing me, I so badly want to share! My promise to my girl means more than that though, so you'll have to wait. You can call her to find out more :) She loves texting, FaceTime and snapchat... all via my phone of course!

(She started young)

Thursday, Camp No Limits Idaho happens. I'm dying inside to get on that plane and go. Camp is like Christmas for me. I get to reunite with people that I love and meet new people that I'll grow to love in just four short days. It's life changing every single time. My heart grows ten fold and it's one of the happiest four days of the year for me. I hope that my kids feel the same.

Be on the lookout for LOTS of updates coming soon. Maybe I'll see if Bella wants to blog about getting her hand. We can at least post for one to release on Thursday night after all the CNL friends have seen it first :)

Upper limb prosthetic friends, be sure to bring your attachments for your sports arms so she can check them out. I can't wait to see all that she learns this year. I wonder if she'll spend any time with us at all. Usually she wonders off with the girls and I see her on Sunday to pick her back up. The joys of camp!

(My how she's changed in a year!)

So yep, in her bag, all set to go are the prosthetic parts! I'm dying on the inside that we actually have them in our house! FINALLY!

After all, it's just hair

Bella's been BEGGING to get her hair cut for some time. My mama heart said "it's just hair..." but it also said "ah, it's beautiful hair that took 7 1/2 years to get there!" I kept saying no. Daddy kept saying "Your long hair is so beautiful". In reality, it was in a ponytail every.single.day. Besides, it's her hair, who was I to say no? But I did, time after time.

Then, our "date night" babysitter, we'll call her J, got diagnosed with aplastic anemia. We talked about how she was sick and that she wouldn't be able to watch them for awhile, like a long while. We talked about how we'd likely use her sisters for our "date nights". They all expressed their love for her and Bella got the idea for each of them to make her a video and send them to her. I'll wait for her approval before I post them here for the rest of the world. Her wheels were turning and it didn't stop at the videos.

She asked to cut her hair once again. She prefaced with "I know you are going to say no but just listen, I have an idea"... then it began... "So I thought with J and how she'll lose her hair. She needs my hair more than me, so it's time to cut it. We can just cut it and drive it right over to her house." I explained that wasn't how it worked but that her reasoning was well thought out and I agreed with her. It's just hair and someone else might even love it more than I do. I agreed that Friday we would go right after work. I kept my word.

Almost ready...

After stalking Scheck and Siress for weeks, I finally got a pre-approval letter in the mail from our insurance. When I called them on Wednesday, they still hadn't received the letter. Frustrating... so I faxed it over. I'm pretty sure that's what any mama bear when do when her baby bear has kept asking about it!

On Friday, Scheck and Siress called to verify that they also received the letter from insurance. The parts had been ordered and now we wait... We were told that once they were ordered they would be ready in 3-5 business days. What's a mom to do? Yes, call this coming Friday to follow up.

I did reach out to Camp No Limits friends to ask about the type of prosthetic. Being newbies to this whole thing, I wanted to be sure what they were ordering was really something that would be useful to Bella. I sent a text to Mary, CNL founder and director, and Keegan, one of the teen mentors who is one of Bella's buds (and mine too!). They were both able to verify that they thought it would work great for what we had in mind. Being able to quickly reach out to a trusted community is essential. I'm thankful that they both responded quickly! I'm beyond thankful to have them both in our lives.

Again, we wait. At least this time, we know exactly what we are waiting for and how long it SHOULD take... anything could change. I'll keep you all posted!

Moving

Yesterday Bella came home from school with news that one of her "best friends" was moving. This is a child that she's been friends with since kindergarten and he happens to be someone that is an incredible role model for all those around him. Bella's been lucky to have him on her side from the start of her formal education journey.

(Selfies from my phone!)

What's a mom to do? Well I promptly texted his mom to ask about it. Their details are their business but I will share that their are talks of them moving. My heart broke for Bella and for me. I like this family!

Bella said "I know you sent his mom a text, what did she say?" I simply said "they are talking about it but nothing is final yet so we'll have to wait and see"

Her words shocked me. Sometimes she's totally my child (hello eye rolling!) and sometimes, like this, I wonder where she came from.

"Mom, if Bill (name changed for privacy) moves, then I'll be sad. He's one of my best friends. But you know what? It would be a good opportunity for him to continue to grow and learn. I know he'll make lots of new friends. I know that we'll still talk and be friends too. It's a good opportunity for him, you know?"

I sat there in awe of my girl. So much wisdom in such a little lady. First off, where did she know and learn how to use the word "opportunity" appropriately? I sometimes have denial that she's growing up! I know she has wisdom well beyond her years. I also admire her for the ability to let her heart break a little and see the golden lining for her dear friend. I'm not sure I could be as strong as her if I tried.

My best friend lives in Kansas City, I'm an adult and can travel to see her and I still hate it every single day. No, like really, I hate it. We've maintained our friendship over many miles for many years. We got married within months of each other, we had babies close together, we are both working mamas with little to no time. You know what... when something is important to you, you make it happen. My friendship is important and it helps to maintain what little sanity I have left.

I know that Bella will keep Bill close to her heart whether or not he goes to her school. She admires his kindness, his ability to stick up for others, his dedication to sports and his ability to include everyone. I also know that as her mom, I'll work for her to maintain this friendship. My eyes fill with tears as I type this. Somehow, I'm part of raising this girl. Somehow, we've done something right. Somehow, she'll find the courage and the strength to support and encourage her friend even if it means some sadness for her. Somehow, I'll muster up the strength to help her through it.

It takes a village

Today, I struggled with being a mother. Life is busy with three kids. There's activities, commitments, guitar lessons, girl scouts, two full time working parents, a marriage, three kids, a dog, four chickens, two vehicles, an RV, a house, laundry, dishes, meals, grass that needs to be mowed, work meetings, on call schedules, teacher meetings, bedtimes, bill paying, teeth brushing, doctor appointments, dentist appointments, baths... need I say more. I mean there's responsibilities galore. It's like a juggling act.

Today, those balls in the juggling act were falling far faster than I could catch any of them and I'm pretty sure I dropped them all. At the end of the night, we all made it out alive, though I couldn't exactly tell you how. There was crying, happiness, laughter, tears, yelling, giggling... it was like a night of bipolar emotions from all parties. The train stopped at every emotion station before stopping for the night.

Today, I struggled. Today, I called in my village. I called my therapist, aka my best friend. I called my mom. I reached out to an old friend. I called in my village. I cried to all three of them. Tonight I struggled, today I struggled. Today, I'm thankful that we all made it out in one piece.

I struggle to feel like I'm "mom enough" to all three kids. They are all so very different, with different personalities, different needs and wants, different hopes and dreams. How can I parent them all in a way that is best for each of them. Is that even possible? I struggled with feeling like I was successful at motherhood.

At the end of the day, I can assure you one thing. It takes a village. It takes the desire to want to do better. My kids push me to the brink of my breaking point, they also make me happier than I've ever been. I can assure you that I will bust my ass trying to be the mom that each of them need, want and deserve. I might die trying but I will try. I will push myself until I can no longer push. While I struggle to feel like enough, I can assure you that I'm giving it 110% every damn day. I can assure you that I call in my resources, I use that village, I seek out more information. I try.

I hope that someday they each realize that while I may not be the best mom, I'm the only mom they have and I've never given up on any of them. I will always strive to be better. I will always push to do more and to be more of the parent they each deserve. I may not be the best but I'll never ever give up.

Shriner's update

Last Friday, was our Shriner's appointment. Our drive down is a little under 2 hours and we forgot Bella's kindle. Let me tell you she was thrilled about that (insert eye roll here!). However, it was a really good opportunity for her and I to chat about some things that are going on in her little 7 year old life. A good chance for mama and Bella bonding.

We made it to Shriner's and then checked out inside the hospital a bit. We did some reading, played with a little 16 month old guy who was also waiting, fishtailed braided Bella's hair and did some more chatting. We got called back and met with Dr Ackerman, Michael (from scheck & siress prosthetics) and a resident. Dr Ackerman agreed with me that a sports arm with a terminal device would be a good fit for Bella at this point in time. Did I lose you yet? The terminal device is the part of the prosthetic that goes on her left arm and then the "hand" portion is interchangeable... Why go this route? Because this will allow her a mushroom tip (which is used for gymnastics, handstands and cartwheels) and a bike piece (that can clip onto her bike but releases easy, this could then be adapted for tennis, baseball bat, hockey, kayaking)... It gives her some options.

Why not a full prosthetic that she can wear all of the time? I want her to have a purpose, right now she does most things just fine. After her neck injury in PE is when I decided that she should probably have something to help prevent further injuries, to her neck, her wrist, her elbow or other injuries that could occur due to her limb difference and the length difference in her arms. IF later she decides that something would be beneficial ALL of the time, then we'll go that route. However, for now, this is a start.

Why Scheck and Siress? Shriner's in Chicago sends out their prosthetic needs to this company... Why? I'm not sure. What I am sure of is that they have great communication with Dr Ackerman which will help to get our insurance on board. This is one of the main problems we have in Milwaukee. Our pediatrician isn't well versed in prosthetic or limb differences and our needs, which means she would have to communicate better with Hanger. Hanger can't call and talk to her because then insurance would deny our claim because "they are trying to sell her something"... their words, not mine. That's one of the main reasons we went to Chicago, to get a hold of experts. Dr Ackerman is just that, an expert in amputations, limb differences and the needs related to such.

What about the cost? Before I get into this, I'm going to get on my soap box. Here goes. Why is it that someone with TWO hands gets to sit behind a desk and decide what MY daughter NEEDS and if it is appropriate or not? Why is it that this person gets to decide if it's a NEED or a WANT? Why should Bella have a harder time doing handstands or cartwheels because she was born different? We risk injury to her good limb from all of the extra stress that she places on that hand and those joints. The person behind the desk surely is considering all of those things right? Wrong...

Okay back to the cost. I stood at Shriner's and called to be sure Scheck and Siress was "in-network". It took me about 30 minutes to verify that is was and then we headed from Shriner's to their office. We have decent insurance. We've almost met our deductible. Once that is meant, we pay 10% and the insurance company pays 90%. This isn't too bad. The problem comes into place when the policy says the prosthetic can be replaced every 3 years, so then that means we'd  have to fight with insurance because she's a child and she's growing constantly so she will likely need something before the 3 years is up.

Why did I share the cost? I feel like it's important for other parents of kids with limb differences to realize there is a a cost, a significant one. We'll likely have to travel to Chicago 2-3 more times for appointments, that's time off of work and school as well as gas and wear and tear on my vehicle. The cost of the prosthetic as well and the things that go along with it are not cheap. The sleeve alone for the inside of the prosthetic (this helps decrease rubbing and ensure a good fit) is $500. Again, these are things that I as a parent of a child with a limb difference did not know or realize. As we move forward, these are things that we will keep in mind. Just some insight for those that are in our shoes.

I hope that this helps someone! I hope that you as a parent of a child with a limb difference can think about your child's needs as they arise and have some sort of understanding because of this blog. I hope those in the community can understand prosthetics a little better.

Beauty and the Beast review

I keep seeing posts with friends asking "Is Beauty and the Beast too scary for my child?" We watched it and couldn't love it enough! It was a really great and engaging movie. It's very much like the cartoon movie... only not a cartoon.

Luca and Grayson were fully engaged. They both sat quietly and watched... well that's not the whole truth. Luca talks 24/7... yep like even in his sleep. So there were times when we had to say "Oh shh watch the movie, let's see what happens next". Like multiple times. He wanted to talk about what was happening and what he thought was going to happen next. Grayson on the other hand like our chill easy going guy, just watched and sat quietly.

Bella watched quietly and took everything in. Nearing the end of the movie, I saw tears in her eyes.

I whispered "Are you ok?"

"Mom he looks scary but if they really got to know him then they would know he's not" her eyes remained filled with tears. We cuddled a little closer.

"Mom why are they so mean to him without even knowing him? He's SO nice and so caring. He loves Belle. If they talked to him and knew him they wouldn't be afraid."

"It's just a movie  Boo Bear, don't worry" again, I pulled her closer.

At the end of the movie, we talked about it more. I'm so proud of my girl. She asks questions. She thinks deeply about things that effect other people. She cares about other people and how they feel. We've had these talks before about how people do things and it effects us.

I may not win at everything parenting related... actually I don't win at most things. With this, I win. I've done something right with my kids. Compassion is something so many people lack. Thinking about others before yourself is also something I see our society lacking. My girl, she doesn't lack either of those things. While I may not know everything, while I may be constantly learning. I'm winning at this. Treating people how you want to be treated and thinking about others feelings.

As for the movie, there are "scary parts" or parts that kids may find unsettling. The movie itself is not scary. It shows love and compassion. I highly recommend it! Our youngest is 4 and he really enjoyed it... well minus the talking but I don't think that's going away any time soon!

Can we all take a pledge?

Isn't momming hard enough? Wait is that even a word. Lately, I've been feeling a little judged about a lot of things. Earlier in the year it was about me working and not being at my kids school enough... another mama judged me for "working and missing out"... I went home and cried. I opted not to say anything because this mama is truly passionate about being a stay at home mom. I finally decided it wasn't worth saying anything because I was heated and that wasn't the right time for me to voice my opinion.

Why did I care that she stayed home? I didn't. She felt truly passionate about it and was expressing her passion which to me came out as more of a judgement. Whether or not that was her intention, it still hurt a bit and stung like salt in an open wound. Hey more power to ya lady! Were they days I wanted to be home more? Hell to the yes! Were there also days I wanted to gallop out the front door and say "see ya later suckers, I get to go to work!"? Um also a big hell yes. The night after my boys decided to be ultra quiet and proceed to color each other with permanent markers was one of those days... how could I survive being a stay at home mom?

There are pros and cons to each... as there are with many things while being a parent and in life. There's often no "right" or "wrong" way to do things. Wanna do a sticker chart? Awesome. You do allowance? Sounds good. Your whole family eats organic? Fantastic. You drink soy milk? Great. There's an on-going joke at our house, Ryan and I differ on a lot of things when it comes to food. He likes ribeye and lots of fat "It flavors the meat". I like leaner cuts of meat with NO fat. He likes crunchy peanut butter, I like creamy. He likes soft boiled eggs, I like any other kind of egg except soft boiled eggs. Somehow, we've still managed to make life work for the last almost 12 years.

I was judged again this week about my dietary choices. I'm pretty sure whatever I put into my body isn't seeping out of my pores and affecting them. What I do know is that I'm making choices that are leading to a healthier me and I've never felt better (well not including when I was 22 before kids and full on adulting, you know when I was able to sleep as much as I wanted... prior to insomnia). Overall, it's my choice and it's working for me! Ryan and the kids aren't eating everything I'm eating and they for sure aren't eating the portions that I'm eating. We've had great dinner conversations about how mommy is working on a healthier diet and eating less sugar and stuff that comes in a package. The kids know I feel better because I'm eating less of that.

At the end of the day, I'll do me and you do you. To me, that means lifting people up when they are doing something that challenges them. I have a friend that runs marathons, not my style but she loves it, so I support her. I have a friend that eats all organic, hey knock yourself out sister! Another friend eats pretty healthy but doesn't want to give up her one can of soda a day, it works for her. A couple of my friends do fitness competitions, to me I have enough judgment but for them it motivates them, kick some butt ladies! Can we just lift each other up instead of tearing each other down?

Staring

I'm sitting at a public place watching two women in their fifties stare and quietly talk about a twenty something woman. My blood is boiling. They keep staring at her for lengths of time and then whispering. My blood continues to boil and my heart rate continues to rise. This twenty something woman is dressed in what I consider hipster kind of clothes, she has messy hair, some tattoos and a few visible piercings. She's on her phone, minding her own business. She's not rude or inconsiderate. She's quiet in her own little bubble of the world.

Meanwhile, these two women start for lengths of time at her, then continue whispering. I wonder if the girl notices. I notice and I give them the side eye... it doesn't stop their behavior. They continue to stare and whisper, then stare longer and whisper again.

Is this girl hurting them? Are her piercings hurting anyone? Are her tattoos offensive to them? They are of flowers and designs, no profanity or nudity at all. Does her messy hair bother them? Is the hipster clothing not their style? A million questions run through my head. Have they ever been stared at and felt it or noticed? How did they feel? Do they think they are better than her?

I may not be wise or smart or nice... In fact, I'm kind of a bitch. Do I judge people? I try my hardest not to, we all have a little in us that questions things. Besides, who am I to judge anyhow? I'm kind of a hot mess. I've cried in public this week more times than I care to admit. I'm showered for today... but not always. I have no makeup on and bags under my eyes.

 I will share with you this, I won at being a mother the other day. Grayson, our sweet, mild mannered, compassionate five year old said "Mom it's okay if we have different colored skin. We can still love each other. You should just be a kind person on the inside. We are all born different." Listen, he may be small, he may be young, he may not have the years of wisdom that others do. I can tell you this. He is MUCH wiser than those ladies judging this woman.