Tuesday, January 28, 2014

CAMP NO LIMITS!!





Camp No Limits came and went. It seemed like we worked hard to raise funds and we waited all year to go and then it was here and in a flash it was over. I first want to thank so many of you that donated so we could meet our goal of going to camp. I must admit, I was sad to see it all end. In a matter of four short days, these children and their families became an extension of our family. They became a community we can reach out to for whatever we might need or have questions about. I'm hoping to make a photo album soon of our adventures so that she can look back on all the joys that those four short days brought her and our family.

This is a pivitol year for Bella, with people teasing her at the playground this summer, her asking all sorts of questions, us trying to learn how best to help her and her trying to learn and embrace so many new tasks. Ahhh the life of a four year old and all that it brings! I think it was important to go and for her to see there are other kids like her prior to entering the "real" school world in the fall. We've been with our same daycare friends for 4 1/2 years, our same friends at the gym for 4 years. This will be her first time in a big fishbowl of kids her age. She's a social butterfly and I know she will grow tremendously in the years to come!

For Camp No Limits, we arrived and checked in at the check in area and quickly started chatting with other kids and families. There are upper limb differences, lower limb differences and amputations of all sorts due to various reasons. Checking in was a very eye opening experience for me. There were all sorts of kids and adults there dealing with and embracing their challenges. The room was filled with people. Some talking, some hanging out doing crafts, some walking around the building looking for turtles, some playing basketball, hugging old friends and welcoming new. We were welcomed with open arms by every single person we encountered. Check in day was just that, a day to get settled and get to know others. We ate dinner in a giant cafeteria kind of place at big tables with other people joining your family. It was like one big (like 150 people big!) happy family. 

The next couple days were filled with activities. We had group sessions in the morning where we were split into groups. Our group was the upper group, so every person in our group for the morning had an upper limb difference or amputation. We talked about challenges, about things we wanted to work on, things the kids wanted to work on, any questions or concerns the parents had. It was incredible to have so much support and get so many answers. This group is where magic happened! Bella worked on buckling buckles (which she completely rocked!). She practiced zippers, snaps, buttons. Things that are very simple for two handed folks, things that we don't even think about. These things sometimes challenge people with one hand. I learned how to help her learn to put her own hair in a ponytail. She practiced tying shoe laces and we learned how to teach her how tie her own shoes one handed. This group was amazing!



We spent one morning going as a BIG group to see Winter the Dolphin at the Clearwater Aquarium. Winter is the star of the movie Dolphin tale. There were probably 100 people or more that went. Winter ended up getting her tail amputated from being stuck in a net. She has learned to swim with a prosthetic tail and without one. We got to watch her swim without her tail and hear about how Dolphin Tale 2 is coming out. We were lucky that this was all provided for us because we were part of the Camp No Limits group. Bella and Grayson even got to touch stingrays in a tank as part of the experience there. Bella LOVED that part! She stood at the tank for a long time and just kept touching each of the stingrays that passed by. She was so gentle with them and very excited. Grayson, well he's not quite as adventurous. He did it but not willingly at first. He wasn't as impressed with the rays as Bella was. He really enjoyed watching the nurse sharks in the tank. Luca loved making noise and trying to be disruptive during the presentations, ah the joys of being a little dude! 

Who touched our lives at Camp? Who didn't! Some of the all stars that stand out can't be forgotten. Josh was someone special to Grayson. Josh was born without arms from his upper arm down and without lower legs. How do we know? The ultimate form of flattery is when my kids pretend to be someone else. They were playing after our first night and Grayson said "I'M JOSH!" That truly melted this mama. 

Carrie was someone special to me, she was born without a left arm. She rocked a hook myoelectric arm that she blinged out with some sparkles. She took her time with me to answer my questions. She sat in the middle of the floor and practiced buckles with Bella until she mastered that task. She did countless ponytails so Bella and another child could learn. I videotaped that! 



Keegan, a 15 year old girl, was Bella's best bud. Keegan was born without a right arm. Bella and her have almost identical limb differences except on opposite sides with a nub and all. Bella keeps asking when we get to see her again and if we can facetime her. She even said "Man, I wish we were neighfurs (aka neighbors) with Keegan". Every opportunity she had, she followed Keegan around. Bella kept asking her to take off her prosthetic and Keegan happily obliged. I tried to explain to Bella that Keegan's arm was part of her and she liked to wear her prosthetic and that's ok. Bella verbalized how she wanted to just be like Keegan and have matching hands, not prosthetic hands. I think she was thrilled to see someone like her. Not to mention, she adores most girls older than her. Keegan was no exception. She was patient and friendly. Even Grayson tried to flirt and play with her. 

Jerry was Luca's buddy. I didn't ask what happened to Jerry's leg and it doesn't matter. He had a prosthetic leg and he builds prosthetics for a living. Talk about cool! He reminded me of my dad, only he has a strong east coast accent! Every single time Jerry walked in the room, Luca reached for him. I was teasing Jerry that when he was fussy, I was going to come find him. Well one afternoon, Luca was fussy. Jerry walked in and I teased that it was perfect timing because he was fussy and Jerry was "up" for his turn. Jerry laughed and happily took him... well he instantly got smiley and quiet! Little stinker! 

We couldn't have asked for a better experience. At the end of our journey, we left with many more members to our family. People we can reach out to if we have a question or concern. It's invaluable! It was perfect timing for our family and I'm hoping we can make it back in years to come. I think every Camp No Limits can only bring more confidence. Confidence is key, especially when you are a woman growing up in the world today.

Thank you to all of you that made camp possible for us. Any funds raised from this point forward will be put towards our Camp No Limits fund for the future. We're already looking forward to our next trip with all of these amazing folks. What will we learn next time?!

Our experience at Shriner's


(At soccer practice)

We had our first appointment at Shriner's in Chicago on December 20th. I was super emotional prior to our visit and had a hard time blogging because every time I sat down in the days before our appointment to blog , I would cry. I've said it before and I'll say it again, I can be an emotional person, especially when it comes to something that involves my children. I felt like we were going to Shriner's to modify Bella and in our eyes, she's already perfect. I'm thankful for the Lucky Fin Project and the many other resources in the limb difference community. After talking with some of the other parents and the limb different adults, they put it in a different light. They said not to think about modifying her to make her different or better but to think of it as giving her a tool to make her life easier if she chose a prosthetic.
 
Shriner's was amazing! I think they fed all of their employees happy shots before they started their shift. Everyone was smiling, happily greeted us and thanked us for chosing Shriner's for Bella's care. Their attitudes were incredible. I'm a tiny bit jealous that they were thrilled about their jobs. I love my job but don't we all have those days? Not one single person was having one of "those" days. People were warm and welcoming and took their time with us. We didn't feel rushed at all.

(Because I love this picture of her excitement!)

 
We checked in at the front desk, went over insurance information at another desk, then went into our room. Bella was given 2 little stuffed animals and they were so sweet to her, kneeling and getting on her level to talk with her. We then met with the doctor about prosthetic options, his nurse, a resident and a representative from a prosthetic company sat in on the appointment with us. The doctor showed us about 10-15 different hand/arm options. We saw a passive arm, which is an arm that just looks like an arm and hand and does nothing functional. It's meant for cosmetic purposes. We saw a arm that has a hook at the end (Bella calls this a "snapping hand", it looks much like Gary Wetzel's) that has a strap that goes around the shoulders like a harness and can open and close with moving your shoulder in certain directions. A myoelectric arm which has electrodes that would connect to Bella's forearm and by moving her forearm, the hand would open and close. We saw various types of sports hands, one for gymnastics and one for biking or kayaking. We also saw multiple styles that were somewhere in the middle. I must admit that the advancements in lower limb prosthetics is much better than that for upper limbs, in my personal opinion.
 
The doctor asked Bella "Do you want one of these?"
 
She said "No, I don't want one of those."
 
"Do you want one of these for Christmas?" He asked.

"No, I want a baby doll for Christmas."
 
"Well if you could have a baby doll and one of these, do you want one then?"
 
"Um, No. I don't NEED one of them."
 
(Concentration at it's finest)

You are SO right my sweet girl, you don't need one. You are absolutely perfect just the way you were born! We wouldn't change you for the world. However, if there ever came a point in Bella's life where she felt like she needed or wanted one, we would be on board 100%. Part of being a parent in my eyes is knowing when to step up and intervene and when to back down and let things be. I'm a firm believer that what is right for one child, may not be right for another child. There is no right or wrong way to handle a child with a limb difference. As far as Bella and her limb difference, we are doing the very best we can. We are learning as we go. We make a decision and we go with it.
 
Some have said that we should have started her with a prosthetic from the get go. I've also been told that we shouldn't let our 4 1/2 year old make such "big" decisions. We did not agree. We wanted her to be strong and confident without it. We wanted her to learn to do things without it and not feel like she needed to hide her hand. My fear was what if it broke and she was without it and then didn't know how to do something without it. As for her making "big" decisions at 4 1/2, she's a strong, opinionated, smart, confident little girl. This "big" decision is something that would impact her life in a HUGE way, make no bones about it. She would have to relearn how to do nearly everything she already does without one. She feels good about the way she is and we want to continue to support her.
 
The physician at Shriner's said that there is no right or wrong way to handle limb differences. He said there's children that have used a prosthetic from 6 months old and then stopped using it as a teenager and never looked back. Then there's other people that have never used them in their life until they hit adulthood. He said there's people that also use them only for certain tasks, like biking or hockey. Like I said, I'm not saying those who start early are wrong. They are making the best decision for their child, so that's the right decision for them. Basically what I'm getting it, is go with your gut, follow your heart, do the very best you can in the situation that you are given and feel confident in that decision. I know we do.
 
Ultimately, it was a productive visit. She saw options, we saw options. We gained insight on how to modify her tricycle so she can steer it easier. We gained insight into what kinds of things are available if she needed or wanted something. We also got into the Shriner's system, which is important. It means that should she change her mind or need something in regards to her limb difference in the next 18 years, they will treat her.
 
That's big people, real big!

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.