Tuesday, May 23, 2017

More words that hurt

Sometimes it's not what your child says that hurts you, it's what another adult says about your child.

I was talking to some other moms about the juggling at High Interest Day at our elementary school. It started out as a few moms having a conversation that lead to stinging and pain. I expressed the look on the jugglers face when "a child" walked in to juggling and I explained how the jugglers face couldn't hide his expression.

"Well you NEED two hands to juggle!"

My mind is blanking as to what my response was at this point. I mean, really I was kind of in shock. In shock that she didn't know that "the child" was MY daughter. In shock that she said that... in shock at her stupidity... you don't NEED two hands for anything actually. It would be nice to have two hands and as "that child said", it would be nice to have two hands like the rest of her family. It's for certain not a necessity.

"You CAN'T juggle with one hand"

Again, what I said, no clue. I can't remember for the life of me and it just happened today! I can tell you that ANYTHING is possible and saying I can't is not an option at our house... You MUST try. That doesn't mean that we, as the parents, won't help you. It does mean that you have to try, whether you have one hand or ten. Whether you are doing math or tying shoes, you WILL try. Failing will make you stronger and will help you to learn. Quitting is NOT an option.

My heart stung once again. The stupidity amazed me. Where on God's green earth is your filter lady? Do you not realize that I'm talking about MY daughter? And even if I wasn't, how dare you say that the child CAN'T... just because YOU couldn't doesn't mean he/she can't.

"Someone should have warned the juggler!"

I do recall saying something about me being pretty sure I never warned anyone. I mean do you "warn" people that you have blue eyes, do you warn them about your dark frizzy hair, what about the mole on your chin, or the sudden adult acne breakout? Maybe I should just put a warning label on her head... I mean Really??

My heart stung a bit, my tongue bled, my face showed disbelief, my smile tried to hide it all.

I will tell you that that the child I'm talking about is MY child, my first born, the one that made me a mother, the one that has the biggest heart, that wants to heal all pain, that wants to bring my dad back for me to see him again, the one that covers me up if I fall asleep on the couch, the one that has the sweetest smile, the most sincere thoughts, the best laugh, the snaggle tooth smile, the best green eyes I've ever seen, the one that showed me that you can love someone before you meet them, that you can worry before they even leave your body, the one that knows my heartbeat from the inside. She's mine. I CAN tell you that there's nothing she CAN'T do that's she's wanted.

She CAN: climb trees, tie shoes, do her own ponytail, braid my hair, button buttons, put on socks, go rock climbing, be a girl scout, carry things in both arms, climb, open jars, pour milk, hike, run, walk, bike, rope climb, cut steak, bull ride... the list is really endless. What I will tell you is don't EVER tell my child that she can't. That's why I'm her mom and YOU aren't.

I'll leave you with this one handed juggling on you-tube just as a reminder that ANYTHING is possible.

One handed juggling on You-tube

Saturday, May 20, 2017

Words that hurt

Bella was playing a new game I brought home from my Kansas City trip. I thought the game would be fun for all of us to play together. My mom bought two sets for the kids so we could all play, well most of it. She bought it at my suggestion.
We were all outside and playing. Bella would hold the bit with her right hand and then pull the ball off and then toss it with her right hand while holding her mitt under her left arm. She was able to toss it, then put the mitt back on. Well after sometime, she was told by someone "Just put it on your left hand then you don't have to move it"... she got frustrated and came into the house crying. I asked what was wrong. 


"I just wish I had two hands" she said through her tears. 

My heart broke into a million tiny pieces. I could literally feel it shattering within my chest. 

"What happened? Why would you say that?"

In my mind, I knew that there was a time that this would come. I mean there's always a time when we wish for something other than what we are. We want a bigger house. We wish we had more land. We wish we were a size 4. We wish that we had more kids. We wish we had a different teacher... the list goes on! Why wouldn't our sweet little lady wish to have two hands? It's a normal reaction, especially since she was a bit challenged. 

That doesn't mean it hurt any less or made me feel any different. I wish I could just give her my hand. I wish I could make it different for her. I wish her heart wasn't hurting. I wish this game didn't challenge her and cause her to think that way. I wish that I could take away the pain that any of my children feel. I literally can't even imagine their first heartbreak. My heart will probably break into a million little slivers too. 

"I don't know why I said it. I don't mean it. I just wish people would let me do it MY way!"

To shay my love. To shay. Why can't you do it YOUR way? Here's the thing, she was and she can. Who were we or ANYONE else to tell her how to do it when we weren't in her shoes. How could we know what's best for her when we have two hands? WHO should tell her how to do it? I can tell you who, her friends that are born just like her. Her friends that are challenged in the same way that she has can help guide her. In fact, they HAVE helped to guide her. They helped with zippers, shoe tying, buttons... you name it. 

"Here's the thing, Boo. People just want to help you and sometimes we say things like to try it this way because we THINK it may make it easier or less difficult for you. BUT in the end, do what works best for YOU! That's the beauty of being different, we are all different and we each do things in a way that works for us."

She appeared to be soaking in my words. We walked to her room and laid together in her bed to chat some more. 


"Can we talk about what you said?"

"Yeah, what about it?"

"That really made me sad that you said that. I can't imagine what it's like to do things with one hand. I do know one thing, I know that because of you being born with your hands the way they are that we've met a lot of different people that we love and adore."

"Yeah like ALL of our Camp No Limits Family. They are our family right? And the Lucky Fin people (meaning the Lucky Fin Project) and Jordan (From Born Just Right) and Shae and when we do the motorcycle fundraisers in Kansas City, all my bikers, and Gary" 

"Yes Bella, like ALL of those people. They wouldn't be part of our family if you were born with hands like me."

"Mom, it's true. I really don't want two hands because I love all of those people. I just want to do things my way."

We continued to talk and then she went back outside, picked up that game and did it HER way. You know what, HER way didn't hurt anyone and it was perfectly fine for HER. In the end, that's what matters. 


Thursday, May 18, 2017

Happy Mother's Day

Happy Mother's Day to all you mama's out there! (Better late than never right?!) This year, I actually got to spend part of mother's day with my mama! I was excited to say the least.



I didn't realize how much my parents really loved me until I became a parent myself. I remember Bella being born and it hitting me like a ton of bricks. How can I love this little person so much? How could I love her endlessly and unconditionally already? It's like your heart doubles in size the day you become a mother. I remember calling both of my parents and thanking them for loving me so much.


I was really lucky in the parent department. I was a difficult kid and teenager, at least in my own eyes. I made good grades, straight A's. I was hard on myself and I pushed myself to the brink. I would cause myself a fair amount of stress because I worked so hard and beat myself up when I scored less than 100%. My parents were supportive. They didn't pressure me to get 100%, instead they provided support, encouragement and guidance. I was emotional (heck, I'm still emotional). 

I never realized how difficult my parent's had it until I became a parent myself.


I can honestly say that my parents were there for me through the good times and the bad. I learned some hard lessons. I learned that I'm super type A and that I struggle because of that. I learned that through all of it, I could reach out and have those tough conversations with my parents. Nothing was every off limits for discussion. We have a very open relationship and talk about so much. I think this is highly important, especially as a teen.


How did my mom and I celebrate? We spent some time at a Royal's game on Friday night with friends and more family. I LOVE Royal's baseball. My love for the Brewer's has never come (sorry Milwaukee folks!) and I'm not sure it ever will. We went to some antique markets... which my mom is NOT a fan of but I'm pretty sure she had fun. She knows that's totally my thing and I love looking at all that "rusty shit" as she called it. She even fell in love with a $2,000 dresser, what can I say, she has expensive taste! We shopped and run around then spent Saturday night at Garth Brooks. Totally a bucket list thing. Shenandoah opened for him (old school country!) as well as an upcoming artist named Mitch Rossell. He was also amazing. Garth and Trisha though, out of this world. Garth played for 3 solid hours, 3 hours! It was insane and a blast. We sang every single song and only sat in our seats briefly. Super great concert with a weekend of memories to last a lifetime!

Wednesday, May 17, 2017

Purging

Most people I know make fun of me for the amount of joy that purging brings me. It seriously makes me happy. Less is more. I'd rather create memories and moments than have nice, new furniture. My mom does both. My dad was more of a moments guy. Neither of them love purging as much as me. As far as my husband goes, he lets me do my thing, then asks if I'm pregnant. The nesting phase was real folks in all three pregnancies.

I set out to start the purge of the basement a few months ago. It's a good thing it's the basement and guests don't really go down there! Let's just say it looked like a war zone... or maybe it still does! Honestly though, I started at one end and worked toward the other end. I'm about 2/3 done (pictures to come). I stopped when I got to the toys. Toys are SO hard to purge. I firmly believe that less is more in that department and the kids get totally lost and side tracked because there's so much! I'm waiting for Bella to help me with the toys part. The only thing that I think you can't have enough of is books, I want me kids to have a home library that has all sorts of variety!

How do you purge? Does it bring you joy? Do you feel like you have more control over your life? What brings you happiness? How do you balance it all? I'm interested in what other people think and feel and how YOU go about purging... or do you?

Monday, May 15, 2017

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.

Friday, May 12, 2017

Juggling?!

Our school does a thing called High Interest Day. It's a great day filled with fun and activities that our Parent Faculty Council (PFC) puts together. It's a LOT Of work for all involved but the kids come home with memories that can't be replaced. Bella once made a jump rope out of rubber bands that she was super proud of... until her younger brother decided to take it apart (yep, insert eye roll... ratty brothers!)

Bella missed the sign up day so one of her best buds signed her up. He signed her up for yoga, juggling, marbles, paper crafting and a few other things. I was volunteering in her brother's room for the morning but was able to pop in and see what she was doing from time to time as well. It was a nice way to see the school in action and the kids filled with smiles and laughter.
(Marble games)

I ended my sessions and was able to watch her do juggling for about 15 minutes before I headed out. I watched the demonstrator juggle scarfs, balls, bowling pins and a few other things. He gave some tips and some pointers. The kids were given feathers and he talked about how to keep the feather straight up. I watched Bella and the other kids as they focused on the task. I glanced his way and saw the way he looked at Bella. I wasn't pleased. I could tell that his wheels were turning and that his face had an expression that stamped into my brain. His face said "What the heck is a kid without two hands doing in my juggling class?" My heart hurt but I forced a smile and he turned away.
(who knew balancing a feather could be so much fun?!)

I stayed while she continued to work on the feather tricks and took a ton of pictures of her and the other kids. She had a constant smile on her face. Bella really enjoyed it. My heart was still hurting because I wondered if she saw the way the juggler had looked at her. Her face painted a different picture. She clearly didn't notice and wasn't concerned at all about juggling. She was enjoying the things that they were doing and was unphased by the expression he had made.


That night I asked "How did High Interest Day go?"

"Best day ever!" she said.

"It was SO fun!" Grayson said.

Clearly my kids enjoyed the day and juggling wasn't something that effected her in one way or another. Kids figure it out, better than adults. Juggling was a small piece of the pie for the day. Did I ask her how juggling specifically went? No because in the end, if she didn't feel like it was worth talking more about, then it wasn't. Let your kids be your guide and go with it!

Thursday, May 11, 2017

Back in the insurance loop

Here we sit, back in the land of the insurance loop. I heard from Scheck and Siress yesterday about the process of the prosthetic. Bella was casted for the mold when we were down in Chicago after being seen at Shriners. She was told that "it usually takes about 3 days to make the prosthetic". What does that mean to a 7 year old? It means that in 3 days she'll have a prosthetic. Not the case. We had to talk about how it takes time and we have to practice patience. Something neither her or I are that good at!

So we are here, waiting once again for someone with two hands sitting behind a desk to approve a prosthetic for our daughter. It's so frustrating. It's frustrating because that "someone" sitting behind the desk gets to decide what fits for Bella. They don't live with her, they don't see her daily, they aren't aware of her challenges and yet that person gets to decide what's best. It irritates me. I'd happily invite them into our home, into our world and into Bella's day. I bet they won't even ask. They'll approve or deny and be done with their day. While we sit here, waiting.

What does that mean? That means in about 2-3 weeks insurance will make a decision and Scheck and Siress will call to provide me an update on our situation. What did I also discover? Our insurance is decent. They are estimating our  deductible will be about $1000, which is 10% of the cost of the prosthetic. Something for us to keep in mind as we budget for our future and for hers. Something for other parents of limb difference kids to keep in mind as well.

I'll keep you updated as we are updated on the progress.

Wednesday, May 10, 2017

Yesterday was NOT my day

And today isn't looking good either!

I was all prepared and set to go to the gym. I loaded Luca up and we headed that way. I had everything I needed for a great workout. I sat my stuff on the back of the toilet while I used the bathroom, I finished, flushed and picked up my stuff... Only when I picked up my stuff, my ear buds FELL into the FLUSHING toilet. Away they went... well whatever, that wasn't going to stop me. I completed my workout and decided we'd meet Bella and Grayson at school for lunch after a quick pit stop at Target.

We got to Target and went to grab a couple of things. Luca was behaving really well and asked to get out of the cart. Why not I thought? So I picked him up and let him down letting him know that he needed to stay close. Within 2.6 seconds he pushed the emergency exit alarm. Then the super loud alarm started going off throughout the store. No employees were in sight, of course that would be my luck. I promptly LEFT the cart and b-lined for the front of the store with him. Seeing no employees in the process. We quickly left...

I remember my mom saying "Calgon take me away"... I also remember the commercials. Calgon doesn't exist and if it did, I'm pretty sure it wouldn't take me anywhere.

Today, my brand new phone is on the fritz... I need a beach, asap...

Monday, May 1, 2017

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.

Camp No Limits- Day Two

I swear, each day of Camp No Limits gets better. You never want it to end. What's not to love? There are tons of new friends, some old f...