Saturday, November 30, 2013

Thanksgiving came and went

It seems as though the days are whizzing by! I guess that's bound to happen when you have 3 little ones in your home. Our house is filled with lots of love and madness... and giggles and all of that other fun stuff that littles bring.

This year, we have so much to be thankful for. There's no way I could possibly list all of the things I am thankful for this year. It seems as if the list is endless. I want to reach out to all of you and tell you each how very thankful we are that you are in our lives. It means more to us than you know. We've encountered so many people that have welcomed us with open arms. I'm thankful for you welcoming us into your lives, into your hearts. I hope today and every day you have a tiny bit of time to think about all of the things that you are thankful for in your life.

Tuesday, November 19, 2013

New things on the horizon


Since Gary's bike ride for Bella, she's been asking for a "snapping hand" like Gary's. She doesn't know much about prosthetics other than the few that she's seen. Gary's being one of them and the only other one was at our Hanger Prosthetic appointment a few months ago. She didn't want a "plastic" hand and said it looked weird. Because it wasn't in use by someone, I think it was hard for her to understand how it could have been useful to her. Maybe I'm wrong though, maybe it just looked odd to her. She kept saying it just looked like a "baby doll hand", when I put myself in her shoes, that's exactly what it looked like except on a larger scale.

We were very lucky to have networked with Shriner's Hospital prior to Bella's birth and get into their system even though we have never utilized their services. We've been seen at Children's Hospital of Wisconsin up until now... By being seen, I mean we've gone there three times. Once when I was pregnant, once when Bella was first born and another time when she was complaining about pain to her nub where her thumb would have been. Even with insurance, it's expensive to go there and get services there. For our first visit, which included x-rays and being seen by an Ortho doctor, we paid over $200 out of pocket. At Shriner's, they bill your insurance and then their services are free. They will even transport you TO and FROM the hospital if you need transportation!

We have our first appointment at Shriner's scheduled for December 20th. Ryan, Bella and I will spend the day together, driving down to Chicago, being seen my one of their ortho/prosthetic specialists and then driving back. I'm hoping we have time to stop for a fun lunch date or something. I've heard appointments there are lengthy, 2-3 hours. So we'll pack plenty of snacks and things to do for Bella. Since this is a prosthetic appointment, we'll discuss options with them and hopefully Bella will get to SEE some of the options. I'm also hopeful that since that day there's a prosthetic clinic that she may get to meet some other kids like her and see some of their prosthetics in use.

When she verbalizes wanting another hand, she has given us specific uses for why she needs one. She wants to hold her baby dolls. She wants to be able to hold paper with one hand and cut paper with the other hand. She'd like to play with barbies with two hands. I'll be honest, it's heartbreaking to hear your four year old daughter talk about all the reasons two hands would be useful to her. I believe she is perfect as she is but I can sympathize with her in why she feels two hands would be beneficial. I have no idea how I would do many of the daily tasks that I do one handed. I would learn and adapt, just as she has. She teaches me so much about life and faces challenges head on. I'm hoping this appointment will help her and us to decide what will be best for her and start the process of getting a prosthetic.



I have many different emotions about this. She's my girl, my daughter, my first born. She teaches me about being a mother every single day. I love her just the way she is. It's my job as the strongest woman role model in her life to teach her to be confident and strong. To face challenges knowing that she'll overcome them or find a way to get through them. To teach her that being confident does not mean being cocky. To face bullies in a way that's caring, realizing that they may be bullying because they are unsure of themselves. To not back down, ever! I want her to realize and understand that she's perfect as she is, she can dye her hair if she wants, but the way she is, is just perfect. That her little sleepy hazel eyes are incredible, there's no need for them to be blue like mine or brown like daddy's. That she's not fat or skinny but that her body is just right for her.  Being a woman, presents its challenges. We are always more critical of ourselves. I want her to be confident and bold as a toddler, girl, teen and adult. I'm crying as I wrote this because the love she brings to my life makes me heart overflow. I'm sure anyone who has come in contact with her would agree that her laughter is contagious. I have big shoes to fill for this little girl but I'm up to the challenge!

Monday, October 28, 2013

Gary's Ride for Bella

What a success!! There were at least 63 bikers that came and registered and rode for Bella's Camp Fund. Here are how the events of the day played out...

All 5 of us showed up at the American Legion at 9:45 am. Bella and I sat at the registration table. She was a little celebrity. It was so cute, she sat there so big and shook hands with complete strangers. She thanked them for riding. She used her manners and was on her best behavior all day long. I am so proud that she does in fact listen to the things we tell her. Manners are important and on Saturday, it showed that she knew that. We helped with the raffle ticket purchases and kind of did a meet and greet with every one that came in.

Gary walked in the door of the hall and Grayson our shy little 2 year old ran up to him and hugged his leg. Bella calls him Grandpa Gary and she calls Kathy, Grandma Kathy. It's so adorable. We are the parents that want our kids to be able to love anyone they want. It's clear that they both love Gary and Kathy. They both feel loved and special to Gary and Kathy. Many of Gary's family members were there to help too. John, Sue, Kelly and Madison were close by all day.

Some riders left the Legion at 11 and others left later. Ryan took all three kids home for naps and I stuck around. I wanted to be as involved as I possibly could. I wanted to be able to personally thank those that I encountered. It's important to me that they understand how much our family appreciates their support. Riders started returning around 1:30pm. They were meeting and mingled with each other, enjoying food and drinks. I left around 4 to come home and help load up the troops to come back.

I walked in our front door and all three kids were in the living room to greet me. Bella said "I'm ready to go back there now mom and see my bikers". She was putting her shoes on and ready to race out of the door. It was clear that she really enjoyed being there and being part of the event.

We arrived back around 6pm. We pulled in and Bella said "Oh there are MY bikers" as if they all belonged to her. It made Ryan and I both laugh. We went in and Bella sat up shop at the raffle table like before. She shook hands with people, she hugged complete strangers, she smiled and used good manners to thank them for coming. I sat with her. Ryan and the boys mingled around.

At 7, Bella helped with the raffle. I announced the winners as she pulled the numbers. After all was said and done, I wanted to thank everyone for coming. I fought the tears, it was overwhelming. It was hard to hold it together to thank the many people that shared their day and a little piece of their life with us. I hoped they felt how grateful our family was to have them there. At the end of the night, Bella was sitting on Gary's lap asking him to show her how his prosthetic worked. He was so patient, showing her and answering her questions. It was a perfect end to an incredible day.

Just in case someone missed it, I'm hoping they are blog readers.

Gary and Kathy, from the bottom of our hearts, thank you! Thank you doesn't seem to be enough for all that you have done for our family. I truly feel like you will be a part of our lives and Bella's journey through life for the years to come. Our family feels a connection to you for not only for what you all have done for us, but for your kindness, your time, your sincerity in welcoming us to your lives.

To everyone that shared Saturday with us,
Thank you for spending your day to help our sweet baby girl. I know at 4 years old she can't fully understand why you all were there. What she did understand was that you were there to help her get to camp, you treated her so kindly, you shook her hand, you hugged her, you giggled with her. You treated her like she was on a pedestal. She felt loved and she made that clear to us as her parents, she called you "my bikers". Your leather jackets, your patches, your silly masks, your chaps, your tattoos... none of those phased her. We are happy to know that we are teaching our little people not to judge a book by it's cover. You all have hearts of gold and my children were able to see that on Saturday, that shined bright like the sun. The goodness that you showed us was tremendous. We appreciate all of your support. It was an honor to spend the day with each of you. You have touched our lives in a way that you may never fully realize. I enjoyed listening to your biker banter, it brought back many happy memories of times I spent with my dad and all of his Harley riding friends. It was something I haven't felt since he passed away 2 years ago. I think it brought back a piece of me that I had pushed aside since his death, so thank you for that as well. I encourage you to continue to check back here or to reach out to me via email. I want you to all see the difference that you have made in our Bella's life. She came home and said she had a bunch of new "buddies". We'll be booking our flights soon thanks to all of your kindness and support.

Much love from our family to all of yours!


Wednesday, October 23, 2013

Loving life


We've been busy loving life at the Zizzo house. With 3 little kids, there are never any empty moments, constant laughter, occasional crying, tantrums, bumps, bruises, endless giggling, hugs, kisses, singing songs, dancing, making up songs then laughing about their silliness, snuggling, messes... the list goes on. It's crazy love over here! I can't imagine it any other way!

There's been a lull in the blog because of everything going on. Sometimes computers, cell phones, electronics must be put on hold so that life can be lived. Usually I have times in the evenings to update the blog but lately with a baby that cut four teeth in month, that lull of quiet time hasn't happened. Babies grow up, I've been busy snuggling babies!

Things are happening here. Life is in high gear. Camp is approaching quickly! Our application has been accepted and our spots have been reserved. We're sorting through sleeping arrangements for camp with the director. It's a little bit challenging and interesting but it'll be so much fun. They will be action packed days for sure! We're working on our flights too, watching airfare and getting ready to book in the next week. We have rental cars to figure out and all that good stuff. Traveling with 3 kids in car seats will be entertaining, we'll likely look like our own traveling circus! Heck we are our own traveling circus. We bring the animals in the form of tiny toddlers and a very mobile baby and Ryan and I are the animal tamers... wait or are we the animals and they are the tamers...

I've been helping prep for the bike run that Gary and Kathy Wetzel are doing. Random odds and ends of stuff to just make sure things go smoothly. I'm so excited. I'm also a little nervous. Let's be honest. My dad was a big time, hard core, rough and tough Harley biker. He lost his leg riding his Harley and never lost his love of the wind through his hair and the rumble at his feet. Bikers and motorcycles remind me of my dad. Sometimes I must fight back the tears when I hear the roar of their motors. It's hard to disconnect. Sometimes it brings back the good memories of him and our relationship. We loved each other madly. He was my first love, he set a good example of what to look for in a man. Anyhow, all of the motorcycles will surely trigger some of those memories. Gary reminds me a lot of my dad. Rough around the edges but soft in the middle, heart of gold. I think my dad had a hand in connecting Gary and our family.

The ride will happen this Saturday at Oak Creek Legion Post 434
Registration from 10-1pm
$10 per person
Cash prizes, raffle and poker run.
All vehicles and bikes are welcome! Bring your car, truck, motorcycle, minivan :) Come one, come all!

If you stop by, be sure to say hi. I'll be there most of the day and during the full registration time. Our entire family will be there for at least the first hour. Bella will be returning around 6 pm and staying until about 7:30 or so. Join us, we'd love to see you!

Tuesday, October 1, 2013

Emotional

Fox 6 news ran our story with Gary. Click here to watch I didn't get to watch the story on the news, life as usual was busy. I honestly forgot it was even scheduled to air. Being parents of three kids sometimes makes your mind wander to the daily tasks and lose track of other things. The interview was so impromtu. I met Gary and Kathy to pick up some flyers about the bike run and a Fox 6 reporter was there with a camera man. We chatted then they asked if they could follow us home to talk more. My first thought was "holy crap, our house is complete craziness right now". I figured what the heck, why not talk to them a little more if they were interested.

I found the article online without the video. I emailed Mike, the awesome reporter. He responded that it was live so I found it. I watched it during a break at work. I cried. I was emotional during the interview. I was emotional again today watching and reliving it all again. I get attached, I wear my heart on my sleeve, I get emotional. It's part of the strands that weave me together. I was emotional hearing more about Gary and his accident. I was emotional watching my child talk and giggle. I'm living it daily but sometimes it's nice to take a step back and soak it all up.

Yes our house is complete craziness, that day and every day. We have three kids who are little, they need lots of attention. Attention that we want to give them. Part of the reason our house is crazy is because we live in the moment. We get on the floor and play with our kids, we wrestle, we giggle, we color, we build. We do all of the things that little kids want to do. Laundry and cleaning go by the side at times, they'll always be there... little kids, they grow up. We embrace each day and live to the fullest.

Our kids teach us something every single day. Bella is the one that made me a mama, she is the child that taught me that even though I had thought I had loved to the fullest, I had not... When you have a child of your own, your heart explodes with love. It's incredible. Grayson taught me that I could love someone else again like I loved her. Luca, he taught me that your heart can never be too full of love and that there is always room for more. The laughter in the video, that's my girl. The little chubby guy on my lap, he's our last and the happiest baby I've ever met. The one in the middle, he admires his sister like no other. He lives and breathes to be around her.

In that video, I watch myself fighting the tears. My babies make me emotional. Being a mom, makes me emotional. Having Gary and Kathy reach out to help our family, that makes me emotional too.

Friday, September 20, 2013

Bowling for Bella takes Wisconsin

There was already a Bowling for Bella in Missouri and it was so much fun for everyone that we decided to do one in Wisconsin too. Part of the fun is that everyone can bowl! Big kids aka adults, little kids and everyone in between! Bella loves bowling or "bawling" as she calls it. We've worked closely with Hank at Bluemound Bowl to get everything in place for a bowling event. So here are the details:

Where: Bluemound Bowl

When: Sunday September 29th

Time: 4pm

What: 2 games of bowling and shoes for $10 if you pay by this Wednesday or $15 at the door

Extras: A raffle (tickets are $1 each) lots of great prizes have been donated by generous local businesses!

We are super excited to get everyone together to have a great afternoon family friendly event. Bring yourself, bring your kids, bring your family, bring your co-workers, bring your friends. Anyone that you think will enjoy an afternoon of bowling and hanging out. We'll be there with our little family of five and can't wait to see all of your sweet faces!

Please drop me an email at bellacampfund@hotmail.com if you need anymore information. 

Thursday, September 12, 2013

Tina Fey's prayer

(Too much flash but what a sweet picture of Bella and Luca)

A Mother’s Prayer for Her Child By Tina Fey

“First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.

May she be Beautiful but not Damaged, for it’s the Damage that draws the creepy soccer coach’s eye, not the Beauty.

When the Crystal Meth is offered, may she remember the parents who cut her grapes in half And stick with Beer.

Guide her, protect her when crossing the street, stepping onto boats, swimming in the ocean, swimming in pools, walking near pools, standing on the subway platform, crossing 86th Street, stepping off of boats, using mall restrooms, getting on and off escalators, driving on country roads while arguing, leaning on large windows, walking in parking lots, riding Ferris wheels, roller-coasters, log flumes, or anything called “Hell Drop,” “Tower of Torture,” or “The Death Spiral Rock ‘N Zero G Roll featuring Aerosmith,” and standing on any kind of balcony ever, anywhere, at any age.

Lead her away from Acting but not all the way to Finance. Something where she can make her own hours but still feel intellectually fulfilled and get outside sometimes And not have to wear high heels. What would that be, Lord? Architecture? Midwifery? Golf course design? I’m asking You, because if I knew, I’d be doing it, Youdammit.

May she play the Drums to the fiery rhythm of her Own Heart with the sinewy strength of her Own Arms, so she need Not Lie With Drummers.

Grant her a Rough Patch from twelve to seventeen.Let her draw horses and be interested in Barbies for much too long, For childhood is short – a Tiger Flower blooming Magenta for one day – And adulthood is long and dry-humping in cars will wait.

O Lord, break the Internet forever, that she may be spared the misspelled invective of her peers And the online marketing campaign for Rape Hostel V: Girls Just Wanna Get Stabbed.

And when she one day turns on me and calls me a Bitch in front of Hollister, Give me the strength, Lord, to yank her directly into a cab in front of her friends, For I will not have that Shit. I will not have it.

And should she choose to be a Mother one day, be my eyes, Lord, that I may see her, lying on a blanket on the floor at 4:50 A.M., all-at-once exhausted, bored, and in love with the little creature whose poop is leaking up its back. “My mother did this for me once,” she will realize as she cleans feces off her baby’s neck. “My mother did this for me.” And the delayed gratitude will wash over her as it does each generation and she will make a Mental Note to call me. And she will forget. But I’ll know, because I peeped it with Your God eyes.

Amen.”

-Tina Fey


My Aunt CeeCee posted this on her facebook today and it's true for the most part. I don't care if she choses to get tattoos but pretty much everything else in this prayer, it's something I wish for not only Bella but her two brothers as well. It brought tears to my eyes so I figured if I felt emotional about it, I should document it. Where better to document it than right here. 

I remember becoming a mother for the first time and calling each of my parents to thank them for raising me. Parenthood is no joke, it's like being thrown into the trenches without being told how to get out! As a child you don't know all of the things that your parents do for you, nor should you. The middle of the night feeds, though seriously exhausting, are moments to embrace. They pass so quickly. The baby blowing raspberries with a mouth full of milk, I love that little raspberry blowing dude, even if it means I'm covered in milk. The 2 yr old with the big heart melting eyes that says "Pick me up Mama" when I'm trying to prepare dinner. I'll pick that kid up because soon enough, he won't want to be held or picked up. That 4 year old who stomps her foot and says "UGGGHHHH" when I ask her a question or tell her no to something, she's the spitting image of her mama. I hope that determination and spunk will take her far in life. 

The days, sometimes they drag by. The years, they fly by. I remember nursing her at 11 months in the middle of the night and wondering "When on earth will this child sleep through the night?!" The answer was right around the corner, she slept through the night at 13 1/2 months. Yep, you read that right, she was over a year. She taught me patience. She taught me that things can wait, babies grow up and the cobwebs and dishes will remain. She continues to teach me as do the boys. I'm lucky to have them, we're lucky to have them. 

Tuesday, September 10, 2013

Embracing moments



Wrapping up summer has been busy! Wait, who am I kidding, it's still in the 90's in Wisconsin... so it's still summer then right?!

We've been lucky to have lots of visitors this summer. It's been jam packed with fun. Our most recent visitors were Tutu, Papa Mark and Halana came for a visit from Missouri. Tutu and Papa Mark are Sarah's mom and stepdad. Halana is our niece, Sarah's brother's daughter. Papa Mark and Tutu think our little babies hung the moon and the stars, well and the whole sky for that matter. We were up early and out late, going non-stop from the minute we woke up until nap and then again from naps until bedtime. It was fabulous and I'm sure the kids would agree! 
 
The last visit we were met with a little challenge during Tutu and Papa's visit. We were at a McDonald's play place after getting ice cream. Bella and one of her brother's were busy playing in the tunnels and climbing around. After a short while, another child noticied Bella's limb difference. I was nursing the baby so I didn't hear what was said between Bella and the other child. Tutu, however, did. Since she's not here all of the time and she hasn't encountered situations like this, I'm not entirely sure she knew how to respond. She was on Bella like white on rice! She kept saying "Bella come out of that thing and get down here by Tutu" over and over again. Bella had other plans. She continued to play while Tutu kept saying "Get down here by Tutu".

Ryan (Bella's daddy) was watching a little closer than I was. He leaned in and said "Sarah you better go over there and take care of that". I handed over the baby and went over to figure out what was going on.
 
I first asked my mom what was going on. She explained that the child had noticied Bella's hand. He was staring, checking it out and calling the other kids over. They are kids. Kids are curious. As long as there's no meanness or Bella's not appearing uncomfortable then we needed to let things be. Bella is strong, she's outspoken. She's pretty good about telling kids she was "born this way" and then going about her business. Bella played, the kids played and within a few short seconds, no one was paying attention to her limb difference. Everyone was having fun. Fun is good!

I had to put my mom in check a little bit. I explained that we have to let them play and "do their thing".  
It was a moment that I had to teach my mom about how we chose to deal with things. She was worried about Bella and I know looking out for her (all of her grandkids) was her first priority at that moment. She wanted to be sure Bella was comfortable. I'm still learning how to deal with things and so is my mom. 

Thursday, September 5, 2013

Obstacles



A couple of weeks ago we were at our family cottage playing in the yard. It was a beautiful, sunny day with perfect weather. We had all played in the lake, got super dirty in the sandbox, balanced on the edges around the sandbox, layed on a blanket and giggled, tossed bean bags and were having an amazing day. Bella wanted to play "tennis". Which basically meant tossing around a waffle ball and hitting it with tennis rackets that were hanging around. I tossed up the ball and lightly hit it with the racket. Bella was standing across the yard waiting for the ball to come her way. She tried to hit it and missed. We both giggled and then she looked at me. I could tell by her face that she was stewing, the wheels in her brain quickly turning. 

"MOM, I can't hit it like you!" She said sounding frustrated and a bit sassy.

"What do you mean you can't hit it like me?"

"I can't throw the ball like that and hit it too."

"Sure you can! It takes practice, lots of practice. Sometimes I throw the ball up and I miss it and it falls on the ground. Then I try again until I get it."

"No, Mom. I CAN'T hit it like you do!" Her frustration growing.

Then it hit me, I could see in her sweet little angelic face that she meant she couldn't throw the ball up with one hand while still holding the tennis racket in the other hand because she only had 5 fingers instead of 10 like me. That's when as a parent, you have to think fast! So I sat the ball on top of the racket, popped the ball into the air with the racket then hit it again.

"See you can do it just like that!"

"No, I can't! I'm done!" frustrated and angry, she walked away.

No, she didn't cry. No, we didn't talk any more about it. I opted to let it go. It could have been a teaching moment but I opted to leave it be. Like the song goes "Know when to walk away, know when to fold"... or something like that. It was a fold 'em kind of moment for me. I felt sad for her, sad for me. Sad I didn't do it in a way she could have done it in the first place. It's moments like that, I find myself fighting the tears. It's the little moments like that that sometimes I beat myself up over later. I think why didn't I just do it the way that she could do it in the first place. In all honesty though, there are many times I forget about her limb difference. I have to remind myself, she's four. She's stubborn, she's strong, she senses your emotions in an instant. It's important to me that she doesn't sense that emotion from me about moments like this. At least not yet. Some day we can talk about my feelings regarding situations. At the young, impressionable, innocent age of four is not that moment.

You have to know your child. Know when to take the opportunity to teach and know when to take the moment to just let things be. I know my Bella, in the midst of her anger and frustration was not the moment to teach. We often talk about how you have to work hard in life. When she says "I can't do it" about ANYTHING, we say "you CAN do it". It's important to try to give it your best and that's what I want to teach her. Sometimes it's ok to feel frustrated and walk away. We'll try again another day, another time. I'll do better next time. I'm more aware of her feelings about the whole thing. Now that I know it was a challenge, I'll work harder to show her a different way to start. Maybe she'll remember the way I showed her the second time. Until then, I won't beat myself up about it. She's four and she has plenty of time to play with tennis balls and rackets if she wants!

Thursday, August 22, 2013

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!

Thursday, August 15, 2013

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)

Tuesday, August 13, 2013

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!

Friday, August 2, 2013

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.

Saturday, July 27, 2013

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!

Friday, July 19, 2013

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.

Friday, July 12, 2013

Where there's a will...



Our strong willed girl is just that, strong willed! When she sets out to do something, she does it all of the way. There's no backing down once she puts her mind to something.  She always amazes us. We remember when she was first born, so many questions fill your head as a parent.... How will she wear a wedding ring? How will she tie her shoes? How will she button buttons on her pants or her coat? How will she hold things or carry things? How will she zip her coat? What about holding a sippy cup? How will she crawl? The questions flooded our heads. There are still days we have questions but so many of those questions have already been answered...

Tonight, I was lying in bed with her and she wanted a bow on her bunny's ear. Her bunny is her "lovey" and she sleeps with her every night. The bow on "bun buns" right ear is tattered and torn, it's very well loved. The bow on bun buns left ear fell off a couple of years ago. I replaced it with a new bow and she was not a happy camper about that so she took it off. Tonight, she mentioned how she's been wanting another bow for bunny and I just happened to have one. Bunny's from build a bear and it has just the basic build a bear bow around her ears. I offered to put the other bow on bunny's ear. She said "MOOOOMMM, I got it!" and so I watched wondering how she would stretch the elastic that was attached to the bow and get it around bunny's floppy ear. Not once did she ask for help. She stretched the elastic around her left hand, then put a finger in the elastic and she put it right in place. Never thinking twice about how it would be done. She just did it with no issues at all. I watched and then simply said "way to go doing that all by yourself with no help". She, of course, smiled her sweet smile and called me "silly". That's our girl!

Are you a parent of a child with a limb difference? Are you wondering how she crawled? How she held a sippy? How she holds or carries things? Keep checking back our blog and we'll post more about the challenges we thought she would face and how she answered so many of our questions by just growing. If you have specific questions feel free to email us!

To those who have donated to our camp fund, from the bottom of our hearts, we thank you! We are working hard towards our goal and working on some more fundraisers. Our garage sale was a success and there's still more to sell. We're hoping for one more garage sale in the weeks to come and then on to different fundraisers! Again, thank you all for those who are reading and those who have donated. It means more than we could put into words!


Wednesday, July 3, 2013

Welcome

Welcome to our first blog post! We'll try to give you some background here about Bella and about why we are starting this journey now.


Who is Bella?


Bella is a spunky, sweet little 4 year old first born. We found out at our 20 week ultrasound that our daughter would be born with left hand limb difference, meaning she was born with her left forearm and wrist but no fingers on her left hand. She has grown to not know life any different. Bella has never used a prosthetic. We encourage her and embrace her at every turn. She has more recently started to question why she was born this way and why we can’t plant seeds in her “little hand” to grow fingers. She does everything other kids her age do, she adapts things to her. She makes things work in a way that work for her, often without any guidance from us.


Why did we start this blog now? 

With Bella starting to ask more questions about why she was born this way. She's started to notice the stares and looks that people give her. She notices that people touch her "little" hand and are curious. Curiousity is normal, invading and intruding on someone else's space is not okay. We're working hard to teach her the difference. She feels sad and unsure when she realizes people are drawn to her hand. We're trying to encourage her to explain to people about her personal space and asking before touching. Touching someone else without asking is not okay. Asking questions and listening to their answers is a perfect way for someone else to learn. Due to age, she's curious, she's learning, she's growing. Now is a vital time in her life for her and us, as her parents, to network with others so we can help her become the most confident, independent young girl that she can be. 


What is our goal with this blog? 

 Our main goal is to educate others about her difference. We want to teach them how to educate those around them about limb differences, how to approach people with differences and how to ask questions. Our secondary goal is to raise funds to send Bella and our family to Camp No Limits.

What is Camp No Limits?
Camp No Limits is a non-profit organization that provides camps for children with limb loss and limb differences. It provides education, mentorship and support for kids and their families. It creates an opportunity for these children to meet and see other children like them. It also allows parents to network with one another to discuss how to better educate our children how to do things that may be a challenge, how to respond to stares and questions and more. It also provides us all the opportunity to figure out how to better educate the public about these differences.  More information can be found at


Why we want to do this?
We believe that instilling confidence and high self esteem in young children is important. Bella is a very strong willed little girl. We are so very proud of the person she is becoming. That said, it's our job as her parents to continue to encourage and embrace her. It's our job to be sure that she knows she is in fact perfect just the way she is! Bella is quick to respond to questions from others with “this is just how I was born” or “I was born this way”. We try not to intervene when possible to give Bella the opportunity to respond to situations in her own way. After being followed around by some other children at a local park, I saw her try to hide her left arm in her shirt. She explained that she needed space and didn’t want her left arm to be touched. I promptly intervened and took the opportunity to teach the other kids about differences such as hair and eye colors and about personal space and not touching someone else without asking. 

Please consider donating to Bella's camp fund. 100% of the money raised will be used to send her and our family to camp. You can donate via www.paypal.com by sending your donation to bellacampfund@hotmail.com Feel free to email me with questions or anything else you think would be helpful for our blog! This is a learning process for all of us.

We will be planning some fundraisers in the months to come as well in the Milwaukee and Kansas City areas! Stay tuned for updates!

Our first fundraiser will be July 11-12 in the form of a garage sale and bake sale at our home. We can't wait to see how it turns out. 

Successful 504 meeting

Last week, we had the official 504 meeting. It happened at 7:30 am on a school day. This made it easier for all the parties involved to be t...