The joys of being a mama

Being a parent is NO joke. I just had a conversation with one of my aunts about how as parents we do the very best we can and sometimes its just not enough, whether thats because our kids feel like its not enough or we feel like its not enough. There have been MANY times I've felt like a failure as a parent. I remember one time not strapping Bella into the bouncy seat and finding that she bounced right onto the floor! Hello I'm a pediatric nurse, don't I know better! Clearly not.

I mentioned before that we've had a rough few months with Luna being sick. It took a toll on all of us emotionally and mentally. Kids handle it in such different ways. It's the first close loss that my kiddos have experience and unfortunately it won't be the last. We, as parents, have tried to support them in any way that we can. We are beyond blessed to have a community of amazing teachers, incredible friends and support from all sides. Luca brought a sweet note home from a friend about how she was sorry. It was so thoughtful! Bella brought a note home from a friend too. So kind! Grayson's friend at school talked to him about it too. Such support from all sides and its been so important for the kids to feel that love.

Last night, Grayson was acting strange when he came home from school. He was extra snuggly and lovey. He's usually a snuggly guy but I could tell he was off. He snuggled on the couch and we read for an hour together. He started and FINISHED this book in one day! He still wouldn't open up about what was going on.

He came out after he went to bed and was crying over a wiggly tooth then I asked him if he wanted to just snuggle a bit longer. We snuggled until he fell asleep. As I watched him so relaxed curled up next to me, I just soaked it all in. This big boy was going to be turning 8 this year, how is that even possible? 

I thought about how powerful being a mother really was. I had the ability in that very moment to calm my child. I had the ability to rub his head and hold his hand, I knew what he liked and what made him feel comfortable and safe. I had the ability to just snuggle him until his body relaxed and he fell asleep. I had the power to help him calm down and just be peaceful. What an incredible gift as a parent. 

So in the midst of the chaos and the storms of life, I was given such an amazing gift. Being a parent is far from easy but it is so worth it! 

Helping friends

Bella has been a little sidekick for our friend, Amy at A Doll Like Me. She's BLOWING up on her gofundme campaign and is interviewing left and right! Amy asked if Bella could help out with sharing why having a doll like you is important and Bella, of course, has strong opinions about why! I really enjoyed being there and listening to them both speak. Amy is SO passionate about what she does and she's a one woman show. She's currently running the media, making the dolls, communicating with all of those interested, communicating with people about interviews. She might be the definition of insane currently, but we still love her! As for us, we are SUPER proud of her and happy to help! 

Be a little LESS judgey

I was at the gym on Saturday minding my own business when I overheard a woman say "She should've bought at least 25 boxes from her daughter!"... they were talking about a little Girl Scout who only sold 25 boxes of cookies. I continued getting ready but it got under my skin. It got so far under my skin that 2 days later, I'm still annoyed by it.

Can we be a little less judgey please? I mean for the love of Pete, she sold 25 boxes, I'm sure other girls sold 100, some even 200... but lets be real, not all of us have it in us every year to beg people to buy shit from our children.

Let's think about the stuff my kids raise money for: Jump Rope for Heart, Girl Scouts, Camp No Limits, Magazine sales, spring fundraiser, fall fundraiser... that's only the start I'm sure. But here's the thing, while I love Girl Scouts and I will eat the crap out of some thin mints, I have to balance my priorities.

This year during cookie sales our Luna girl was SO sick. The last thing I cared about was how many boxes of cookies my daughter sold OR how many I bought. My concern was for our dog, how my kids were dealing with a dog they knew was sick, balancing work, home, relationships, balancing homework and fun, balancing how to best help our Luna to be sure she was getting the best care possible and the most love. There were MANY days I spent home snuggling her instead of running errands or going to the gym. There were days I spent cleaning up dog accidents and then loving Luna. There were days I ate too many chocolates and days I didn't drink enough water. My priority in all of it was Luna.

What I'm saying is that people EVERY WHERE are listening, even people in the gym locker room. I'm a girl scout mom and I felt judged by these bitches in the locker room. Yes I said bitches. Think about kindness, think about love, think about joy. A little less negativity people.

Tonight, I listened to my sweet 9 year old cry herself to sleep about missing her dog. About missing her snuggles and her "unconditional love, she just loved you no matter what. If you were sad or happy, she loved you. AND she knew, she knew if you were sad and needed extra love." I told her that someday, she'd understand that as her mama I loved her the same way her sweet pup did. I love her no matter what. My words "if you are happy or sad, if you are a total jerk or the sweetest angel, if you seriously fail a test or if you do amazing, I love you endlessly, no matter what. Someday, when you are a mama, I hope you realize that I love you like Luna did."

Be like Luna, love unconditionally, no matter what.

Big emotional month

January can end, I'd like a do-over... This month has been rough. Our dog is sick, like really sick. Many of you follow me on Facebook and seen our saga. We got Luna when she was a pup and picked her because she laid in Bella's lap on her back with her legs up. I knew that moment that SHE was OUR dog! A week later, I found out I was pregnant with our second (now Grayson) and had a WTF are we doing moment! Bella was a solid year old, we were about to have a puppy AND now we were pregnant. What on earth were we thinking? We weren't... and 8 years later, it's clearly all worked out.

We picked her name because of a Jason Mraz song "Bella Luna". I loved the name Luna. Her middle name Claire is from San Diego where Ryan and I met. He lived near Claremont Mesa. Luna Claire it was and she became fully registered as a Zizzo.

What I didn't know is the immense amount of love a dog could bring to our lives. We always had outdoor dogs when I was little and Ryan didn't have dogs. We weren't outdoor dog kind of people so Luna has always been an inside dog. Luna greets you with a smile when you enter the door, for real, she smiles, ask anyone who's met her. She's full of endless love, never judges, rarely barks, never growls, always listens. She's tolerated babies crawling over her, babies laying on her, tons of hugs, lots of tummy and ear rubs. She's the most loving dog I've ever met. The kids have been raised with her.

She's been sick since just after the first of the year. We initially took her to the emergency vet for a fever and just acting off. We thought we were on the upswing and we were wrong. Back to our vet for more testing. New antibiotics, more waiting. Still a super sick, lethargic, sad looking girl. I've shed more tears then I care to count. Every time I look at her, I think of her laying on my chest when Luca was breech and just waiting patiently with me while I patiently waited for him to flip. I remember when she climbed into Bella's bouncy seat when Bella was a baby and looking over and laughing. Bouncy seats aren't just for babies, puppies love them too. 

Hug your puppies tight while we await the final results of Luna's labs. This sweet pup is straight from God, I'm sure of it. 

New Year, New Us!

The end of this year was mentally and emotionally exhausting when it came to this prosthetic thing. I've done a lot of video updates on Facebook because I just simply didn't have the energy to write a blog about the heartache. Then, just like that, magic happened.

RIGHT before the end of the year, I got a call from our prosthetist that he was 99% sure that we were going to get approval. Well, he was right! I called insurance to verify a couple of days later and was told the news from them. I had to pull myself together because I was driving and calling. It was emotional for sure. Those of you on Facebook, saw that emotional reaction a little bit later. I cried like a baby and the lady on the phone said "Isn't this good news?" When I explained what we had been through she was the sweetest mama on the other end. She mentioned she had 2 daughters and can't imagine having to wait on something like this and have it be out of her control. She had empathy and lots of it. It was like she was the person placed on that call for a reason.

I called Hanger to confirm with them that it was now in writing on our file. I was crying as I talked. The guy on the other end said "This is great news". I said I was crying happy tears. Yes I'm that woman! I cry when I'm mad and sad, angry, frustrated, happy, excited. Yeah I'm a mess :)

We picked up Bella's NEW prosthetic on December 26th! It was my mom's birthday too AND she and my step-dad got to share that with us. Thankfully because my mom took all of the pictures! It was better than Christmas and even Bella agreed. You guys, seriously, this is BIG! For a nine-year-old child to have such excitement and emotion about something like this was HUGE! She is a girl that is wise beyond her years with an old soul and she realizes things like this... Her face was BETTER and filled with more joy in the office than it was Christmas morning, I swear.

This is the only picture I took the entire visit! Yeah, I was soaking it all in! 

Here's the thing people, while this was an emotional rollercoaster for me, Bella didn't know any of that. She's nine. It's my job as her mama to protect her. She knew there was a wait because it was out of my control and that I was "working on it" but nothing more. I wrote the appeals, I called the insurance company almost daily since September when this process started. I cried at night after people went to bed. To have your child continually ask you "When is it coming? When can I use it again? How much longer?" was like knives stabbing my heart. I just wanted to make it happen yesterday! When it did, my heart was filled with so much joy watching her sweet little innocent face. 

I'll share our appeals letters with you here because you are welcome to tweak them to make them your own. Don't back down! Don't give up! Our kids depend on it! Our limb different and limb loss community depend on it! Show these insurance companies that this is important shit! Don't let them instill fear in you and IF or when they do, fight harder. 

It's November?!

Life is just getting away from me. We're well into the first quarter and gearing up for Thanksgiving. How is that possible?

I joined Bella on a field trip about Folk Art and it was super fun! It was nice to see all of the interactions amongst peers, the incredible teachers, my parent friends, and the vintage view finder... Did I mention it's a view finder from when I was a kid? I'm not that old! Either way, I had a great time and so did she. I'm thrilled she still lets me and encourages me to come along. 

This is my partner in crime at work. I'm not sure what I'd do without her. She's a veteran so lets all thank her for her service to our country and her continued to service to endless students and faculty (me included!) We've officially made it through half the trimester once again! 

This guy got some killer face paint from his mama for Halloween and he let his Daddy pull another lose tooth. He's a brave one! 

This guy is surviving and LOVING kindergarten. He's made tons of friends and he's soaking in things like a sponge. He's a "bucket filler" these days more than a "bucket dipper". 

It's November 7th so I need to start my gratitude list! We've started at home too, which has been really fun with the kids! 

1. I'm thankful for my neighbors who are amazing and help us with so many things. 

2. I'm thankful for a job that I enjoy which it makes it seem a little less like work

3. I'm thankful for a husband that's always encouraging me to chase my dreams

4. I'm thankful for a college degree that provides opportunities that others aren't able to have

5. I'm thankful for Bella's kindness to others. She really looks out for her friends and will stand up to those that aren't kind. 

6. I'm thankful for the ability to have days off to go to lunch with the kids, go on field trips, help in the classroom and even have lunch with girlfriends. 

7. I'm thankful for my mom friends, the ones that always make me laugh, lift me up when I'm down, that help with my kids, that treat my kids like their own, that keep me sane... most days!

On a BIG update on the prosthetic front. I've sent in the appeal and now we wait again... this is a super long process. I can't begin to tell you how stinking frustrated I am with the whole thing. I've called United Healthcare almost every damn day. On that note, I'm thankful for a phone, insurance (even if it pisses me off), the ability to fight, my ability to advocate, the knowledge that I have about pediatric patients and prosthetics and our limb different family. We should know by November 20th if we are approved or not. Until then, we have an appointment at Hanger on Friday! 

It's November, be thankful! Find something every stinking day to be thankful for. Find SOMEONE to be thankful for and tell them that you are thankful for them. People, we have a lot to be thankful for! 

Update

I'd be lying if I said I wasn't mentally and emotionally exhausted after today. My heart broke into a thousand tiny pieces. I held it together until I finished work and got into my car. Then, the tears didn't stop for a long while.

I want to be clear before I share, this is an ADULT problem. I do NOT want Bella to know about this. She's 9, let's let her be nine. I'll worry about this situation and carry the burden for all of us. I want her to enjoy her childhood and not worry about insurance or coverage or anything else in the adult realm.

Today, we received the third denial notification for Bella's prosthetic. The first one when we submitted for pre approval. Then the pedi sent in more information and it was still denied. Then our pedi called for a peer to peer... also denied.

Apparently the insurance company says we already own a myoelectric arm and a helper arm. Bella only owns what we call the helper arm. It helps her do things safely, like bear weight on her upper extremities (think push ups, hand stands, cartwheels, tumbling). She also has used it for sports and for jump roping. Our pedi and the doctor there went back and forth about it... pedi says she only owns one and the insurance doctor says she owns two. Apparently it was a rough phone call.

Either way, I have one more chance to complete an appeal process. No pressure.

Why aren't we using Shriners. We had some issues with Shriners (you can read old blog posts to find out details). Shriners in Chicago does not make prosthetics in house, so they send you out which means you pay out of pocket for your prosthetic. Last time, insurance denied us once then approved. It went through insurance and then we paid a portion. So basically at Shriners, its the same process as here so there is absolutely NO benefit for us to drive back and forth to Chicago for fittings when we would still be dealing with the same thing. Does that make sense?

Why won't I agree to a gofundme? Here's the reason: There are a bunch of other families just like us that are fighting with insurance to get a prosthetic covered. I am an educated health care professional, I am a trained advocate, I am the mother of a child with a limb difference, I refuse to settle for no. I will advocate for Bella because she is mine. Advocating for Bella also means I'm telling insurance that this mama is a shark and I'll teach all the mamas and daddies to follow how to be sharks. They've messed with the wrong mama! So me simply paying because insurance is giving me a hell of a hard time, tells them that I will back down and they will win. This is not about winning or losing. This is all about providing EQUAL OPPORTUNITIES FOR ALL! Got that? Good!

So listen United Healthcare, tell me one more time that my child doesn't need a prosthetic. Tell me one more time how you two handed people are telling me what's right for my one handed daughter. Tell me one more time that she doesn't "need" it to be safe. I'll remind you about her neck and head injury in PE from having a limb difference. Tell me one more time that I have other options and when I ask you say "we aren't sure what those options are." Way to educate and empower your customers *big eye roll* You've met the mama shark and I certainly hope you are ready.