Tiny girl, Big heart

Tonight, while tucking our sweet girl into bed she said "Mom, when I get bigger, I want to take care of sick kids like you and make them better like you do. And Mom, when I get bigger, I want to be a mom like you too"


I told her "that's a great idea, I would love if you took care of sick kids like mama does and if you are a mom someday when your older, much older! That would make me so proud to have you do the same things I do. Being a mom is the BEST thing ever."

"Yeah but if I'm ganna work, I'm ganna need to learn to drive. If I drive, I'm ganna need a car"

And so it begins, our four year old thinking about her future.

Bikers for Bella- update

I have pictures that Tutu (Bella's grandma and my sweet mama) sent that I'll have to upload soon, I promise! Until then...

The Kansas City, Missouri version of Bikers for Bella was fantastic. It was small but still fantastic. People were very generous in doing what they can for Bella. They all had a great time and the ride went much longer than everyone expected. It was a beautiful day for Kansas City (aka not 100+ degrees in August!)

We're appreciative of my brother for heading up the whole thing and taking charge! We're appreciative of all of those that came out to show their support. We're thankful everyone stayed safe and enjoyed the ride.

After all, life is all about enjoying the ride!

Bikers for Bella

My brother is heading up a motorcycle run to raise funds for Bella's camp this saturday. My brother may look rough and tumble but he's the guy that would give you the shirt off of his back. He's more reserved than I am but he's also a lot funnier than me once you bring him out of his shell.

It's starting at my dad's old hang out, Tool Shed in Independence. I'm sure he'll be proud to see his son doing something for his niece and bringing my dad's friends into play too. We're all hoping for a great turnout! I know my dad will be watching down laughing at all the madness that ensues with his buddies and other bikers. My dad was no fair weather rider, he rode his Harley in rain, sleet, snow, you name it. My step dad is the same way.

It's a poker run, driver costs $25 and passengers are $10. Of course, prizes at the end for the best hand. Register at 9am, kick stands up by 10:30. Spend your Saturday morning raising funds for a good cause and starting your day off right!

Come show your support for Bella and my brother!

(on a side note, how sweet is that picture of my baby (ok so physically he's WAY bigger than me!) brother with his teeny tiny string bean niece? Brings me back to that day, even after having kids of his own, he was a nervous nelly to hold my little ladybug)

Growing our community

I have big plans for this blog in addition to raising funds for Bella's Camp No Limits experience. I hope to raise awareness about limb differences. I hope to help other parents teach their children about differences in others and ways to embrace them and not be afraid. Parenting is the most difficult job I've ever had in my life, I'm pretty sure my husband would agree. Ultimately, I'd also love to create a community in the greater Milwaukee area for kids with limb differences. I would like to have meet ups. I would love to have a community locally for parents and children to utilize.

I remember being pregnant with Bella and finding out about her limb difference. I could tell by the look on the ultrasound techs face that something was wrong. She kept running the ultrasound probe across my round belly and her eyes were darting around. I remember her pausing and saying all in one big breath "It's a girl but she doesn't have a left hand". I remember my eyes welling with tears because I was about to be the mother of a daughter! I had thought all along that a little girl was growing inside of me and people laughed when I said I already knew her gender before the ultrasound confirmation. I took a second then turned back to her and said "wait, what?" She repeated and said something like this "it's a girl but she doesn't have her left hand... I'll have to have the doctor come in to double check for sure but I'm positive." The tears rolled down my cheeks and I was silent. Ryan said "well we still have 20 weeks so she's grow one... Right?" I then had to explain to my husband that she would have one already if she was going to have one... that there was no "growing one" at this point in the pregnancy. We both cried. It was a moment of joy and a moment of fear all swallowed up in one.

Prior to our appointment, I couldn't wait to call everyone and tell them the gender of our first child. After our appointment, I felt different. I didn't want to call and say the words the tech had said to me. I just wanted to call and say "IT'S A GIRL", I wanted to yell from the roof tops "I'm going to the be the mama of a daughter!" Instead of screaming those words, I couldn't stop crying. I felt lost. The unknown scared me, it scared us. Ryan and I hugged and talked before calling anyone. We took a few moments for ourselves. I wanted someone to turn to that had answers. We called our parents, I called my brother and sister and then I called my best friend, Ginny (who is a pediatric nurse like me). I'll spare you the rest of the details.

I wanted a community, we wanted a community. We wanted people that we could reach out to ask all of the what if questions. How would she crawl? How would she hold a sippy cup? How would she open markers? Where would she wear her wedding ring? How would people respond to her when she was first born? Would they be afraid? How would children respond? How would she hold hands with her boyfriend and drive? How would she tie her shoes? How would she put on socks alone? Random questions, I know. There are so many more questions that filled our heads that day... We ran them by each other. We troubleshooted what the other person couldn't think of the answer to.

We googled... we googled A LOT. More than I like to remember. We tried to find a community of people we could turn to locally. There were none. We had a hard time actually talking to someone besides in a forum for parents of children with limb differences. I was lucky enough to find one mama in Michigan that was willing to chat with me over the phone about their experiences with their daughter. That hour long conversation brought me so much peace and so much comfort. I continue to wish we had a community here for parents and their children. I'm hoping that through this blog, I can help people connect. I'm always willing to meet with parents locally or have a conversation on the phone. So, please if you have any moms or dads that you think could benefit from talking to another parent, please direct them to the blog! If you have any parents or children in the Milwaukee or Kansas City areas, please have them reach out to me or pass their info on to me and I'll connect with them!

Bowling fundraiser

Sunday, July 28th Bella's "Tutu" and Papa Mark organized a bowling fundraiser in Blue Springs, Missouri at Blue Springs bowl. It was a great success! Thank you to all that came to support her and our goal! Many people came and bowled and had a great time according to those that attended. Some people even came and didn't bowl but cheered on bowlers and donated. Thank you to all that attended and showed your support. I know my mom worked really hard to organize this event! If you are interested in more events, we have a facebook page that I'll link up to later or you can email us at bellacampfund@hotmail.com and I can put you on an email list. We plan to have future activities in the Kansas City, Missouri and Milwaukee, Wisconsin areas.

Happy Birthday Bug!!

Four years ago on July 24th, we were waiting anxiously for our Bella to be born. We should have known from the get go that she would be full of spunk since my water broke 5 weeks early! I remember crying because I was so nervous that she would need a NICU stay. Instead, she came out calm and collected, weighing a whopping 5 lbs 10 oz, big for a preemie.

Four years ago, our lives were forever changed. We became parents. It would bring a world of love, challenges, learning, happiness and joy. We both fell in love with our daughter and fell in love with each other all over again.

We are blessed beyond measure. Thank you to all who have helped us meet our birthday goal of $500, we've raised over DOUBLE our first goal and it's only the beginning of this journey. There are many other fundraisers and activities waiting in the wings. Today is a day to be thankful, to be happy.

Bella Kailani,
Thank you for blessing our lives. For chosing us to be your parents, I honestly believe that babies chose their parents. We are the perfect parents for you, we will continue to rise to the challenges that you bring to our lives. You are teaching us how to be parents through the different ages. You are teaching us to be the parents of a strong willed, opinionated little lady. You are full of life. You show us each day how to love. You are the best big sister to your brothers. Luca's face lights up when you walk into the room. Grayson longs to do things just like you. They are learning from you. Watching the world through your eyes brings back memories of my childhood. It reminds me to stop and be patient. To really take in the little moments in life, for they truly are the big moments!

Meeting with the prosthetist

Say that 10 times fast! Today, we went to Hanger Prosthetics in Milwaukee for the first time where we met Scott. I thought there would be pictures from our visit but there was nothing really to take pictures of. Yesterday, I felt overwhelmed and almost a little sad about the whole thing. We think Bella is perfect just the way she is, so modifying her in any way made me feel a way that I had not felt before. Life is about change and growing and learning. As a mother, those things are constant in our lives.

Our visit at Hanger went well. It was full of information. The reason we just now pursued a prosthetic is because when Bella was first born we wanted her to learn to live life with what she was born with and make the most of what she was given. I'm not saying early intervention with prosthetics is a wrong choice or a right choice, it's just not the choice that we made for our daughter and our family. She has been asking about fingers for her other hand so we wanted to find out the options and we had hoped for her to see some options.

We learned about a cosmetic arm, one that was there purely as a cosmetic. It did nothing except "look" like part of a forearm and hand. This would mean that the feeling she has on her left "hand" (we call it a hand even though there are no fingers), would be covered with plastic. I didn't like the thought of putting something on that wasn't useful at all. This may be something she wants as she gets older though. Scott said he finds many girls want this as they get older purely for cosmetic purposes. He finds its not worn all of the time and only on certain occasions.

We also learned about a more passive arm, one that you control with shoulder movements. It gets put on your limb (for her, her left) and then you control it by shoulder movements as it's strapped around your other shoulder like a harness of sorts. We actually got to see and touch one of these. It was heavy and looked cubersome to me.  At this point in her life I'm not sure she would want something strapped all over her body in order to have a hand on that side. I know my girl and I could see her finding it to be in her way or to constrict her. She hates jeans because they aren't "comfy", she's pretty opinionated!

We also learned about our last option, a myoelectric hand. There are two electrodes that get placed on your forearm and by moving the muscles in your forearm, the hand open and closes. They cost $20,000-$30,000! I think this would be our best option although I'm still not 100% that this would be something she would want to wear on a regular basis. It would help with bike riding and scooter riding and I could see her using it to help with fixing her hair as she grows.

 For us, we wanted her to learn to use everything she had because what if she had a prosthetic at an early age and then it broke one day. How would she do every day life things if she had never known life without a prosthetic? We weren't sure our decision was the right one or the wrong one. We just made the one that we thought was best at that moment in time. Bella can button buttons, put on shoes and socks, comb her hair, put in a headband and hair clips, she crawled without one and she zips up her coats without issues. She can do everything a child her age can do. We are now exploring the option of a prosthetic because she has asked about fingers. Today, she didn't seem very interested when she was shown one of the options... She's not even four though... she's still so young. We, as parents, don't want to pressure her into having one if she's not interested. That said, we also want her to have the option if she wanted that option. Today, we opened the door to options.


Tomorrow, we will open another door. We are going to a limb difference meet up in Chicago. We will be loading up our little family and driving there. It will be our first meet up and there are 12-13 families who are planning to attend. I'm excited to see what limb differences the children have, their ages, network with their parents, see the prosthetics, find out why kids have them and why others don't... It will be a good opportunity for us all to learn and see more. I feel like it will be so nice for Bella to see other kids are born just like her. We talk about differences (eye color, skin color, hair color, heights, etc) on a regular basis. She knows about differences. This will be an opportunity for us all to learn and grow together.

We are learning, we are growing, we are evolving together and individually.