Friday, December 26, 2014

My heart just skipped a beat

I was in the middle of a job application that asked you to fill a portion on disabilities. I scrolled quickly past then stopped and scrolled back up... My heart skipped a beat, or maybe it stopped, but I'm pretty sure I'm having palpitations currently. Do you see what I see?
___________________________________________________________
You are considered to have a disability if you have a physical or mental impairment or medical condition that substantially limits a major life activity, or if you have a history or record of such an impairment or medical condition.
Disabilities include, but are not limited to:
  • Blindness
  • Deafness
  • Cancer
  • Diabetes
  • Epilepsy
  • Autism
  • Cerebral palsy
  • HIV/AIDS
  • Schizophrenia
  • Muscular dystrophy
  • Bipolar disorder
  • Major depression
  • Multiple Sclerosis (MS)
  • Missing limbs or partially missing limbs
  • Post-traumatic stress disorder (PTSD)
  • Obsessive compulsive disorder
  • Impairments requiring the use of a wheelchair
  • Intellectual disability (previously called mental retardation)

I'm not sure I understand how "Missing limbs or partially missing limbs" is considered a disability. How does this "substantially limits a major life activity"?  My heart is aching for my daughter. How is she limited? There is not a single thing that she hasn't been able to do yet. She does everything every other 5 1/2 year old little girl does. It doesn't "limit" her life or her activities in the slightest. This stopped me in my tracks. It crushed me to my core. I still can't understand this... 

Sunday, December 21, 2014

The birth of little Bella

While planning the fall kindergarten party, I met a lovely woman named Amy. Here's her story of how "little Bella" came to life...

"Meet Bella. My son, Samuel, met her this year in Kindergarten and he just adores her (so do I....LOOK at her!)Coincidentally, shortly after I made my first doll with a limb difference, Sarah (Bella's mom) and I were put on a fall party committee together. I don't believe in fate, but the timing was pretty amazing!!!
Samuel has been begging me to make Bella a doll, so Sarah and I decided that she'd have one by the time Bella went to Camp No Limits in January. Unbeknownst to Sarah, her neighbor Sherry (whom I also know) contacted me to make a surprise doll for Bella. Tonight, Sherry and her daughter played Santa Claus (because they couldn't wait any longer) and gave Bella a doll that looks just like her (hand and all  ) Introducing Little Bella...I have been dying to post these pictures of her doll, but I figured that Sarah would figure it out...."

Amy is right, I stalk her page and wondered when it would come up for Bella to have one. I know she's eyes deep in orders right now and I didn't want to overwhelm her by begging at her doorstep for one for my girl. I refrained (which is totally not like me!)

Back track a little... Every day we wait at the bus stop with the neighbors. We've chatted about random things like parents do. Sherry is there with her two elementary school kids. There are such sweet kids and so friendly. Luca is obsessed with their cat :) Anyhow, Sherry reached out to Amy to order a doll for Bella behind my back. Sherry did not know that I had already told Amy that I wanted one and was on the list, I did not know we were coming up the list so soon.

Sherry told me one morning that her daughter got "a little something for Bella for Christmas". I was shocked, what a sweet thing! She asked to bring it over Sunday evening but we weren't home. I told her she could bring it any evening during the work. I was working on a Monday evening when Sherry and her two kiddos stopped over. The details are lost from here, husbands aren't reliable for re-telling stories :) Anyhow, they gave Bella her doll that Amy made with a hand just like Bella's!! Ryan sent me a text with the picture. I almost lost my cool at work, I had to wipe the tears and pull it together quick style. First, Amy didn't tell me we were coming up on the list or that had one in the works for Bella. Second, I had no clue Sherry had contacted Amy, I didn't even know they knew each other! Third, how could a family that we didn't know that well do something so incredibly kind?! I was in complete shock at the whole thing.

That's the birth of our fourth child, Bella's sister, Bella. Who knew I could have two Bella's?! Sometimes one is more than enough :) She's taken up residence in Bella's bed and I kiss her goodnight and tell her good morning. I asked on day one "How did Bella sleep in her new house?" The response, rolled eyes and a groan "Mom, this isn't her NEW house, I mean she's always been a part of our family"... I should've known as much!

So there you have it, Bella and her sister Bella. I'll try to get a picture on the blog soon. She's adorable! Well made, perfect features, crazy hair, a cute little outfit, just like our Bella. Two peas in a pod!

Monday, November 17, 2014

Family


Being a part of the limb different community is nothing short of incredible. Of course it's scary when you first find out as a parent that your child has a limb difference. I've written before about the many emotions that I felt. It's like a tidal wave, ups and downs initially. Then you reach out for guidance, for support and get scooped up by the many families who have children with limb differences and adults that have limb differences that are making a difference in the lives of children.

When Bella was a few years old, a mom named Stacy reached out to me. She and her husband Jon were pregnant with a son who would be born with a limb difference. His name is Logan. We've emailed back and forth and became friends on Facebook. I feel like I know their family. On Friday, we got a package in the mail from their family, a shirt in Bella's favorite color, a card with adorable little owls and a handwritten note from Stacy and money for us to go to Camp. Bella immediately had to wear the shirt and sported it all over town. The note is in her purse. This is just one of the many examples of our community. I hope that someday we'll get to meet their sweet little family. For now, I stalk their Facebook for pictures of their wide-eyed smiley guy. He reminds me a bit of Grayson with his giant eyes, I love it! They just so happen to live in North Carolina, a place that Ryan and I have never been. Maybe there will be a vacation sometime in our future to meet the three of them!

I'm here to support our community in any way that I can. I've talked to several moms on the phone about our experiences and Bella. If it helps them, it's worth it. It's a small difference that I hope to make in our community of children with limb differences. For now, I hope that we have a new pen pal. Snail mail is the best! I guess you could say I'm a tiny bit old fashioned :)

Thursday, November 13, 2014

Family Tradition

A little family tradition that we started at dinner time is "best part of the day". As parents we all know that there are rough days and kids have rough days too. This reminds us all to think of the highlights of our day instead of the negative. This brings the focus back to the good! I love it. When we are all sitting around the dinner table someone starts it "Best part of the day ____, GO!" and the person who's name is in the blank starts with their favorite part of the day. We do this, until our whole table has had a chance to have a turn. We even include Luca even though he's not fully able to verbalize, he laughs or does something silly and then we respond with "oh that's great" or "oh that sounds like a great day" then giggles start from the other kids because we all know that no one has any idea what he said.

Sometimes we can't think of one best part and have a few! Other times when someone is really thinking, we'll say something like "what about doing ___?" then they say something about that not being it and fill in the blank with something else. It takes the focus off of people not eating or throwing food and onto something fun instead. It's something the kids and our family look forward to each evening. It gives us a chance to really hear what's important to them. Often times I think they'll say one thing and they pick something completely different. It's a fun way to get to know what they love most and what matters to them, it really allows their personality to shine through. It also allows us as parents to think about how different they each are and what makes them tick.

Last night, I sat on the couch after working. All of the kids were fast asleep (that's the toughest part about having long shifts, missing them all day). Ryan was watching TV. He stopped the TV as I was working on homework and said "Best part of the day, GO!" and I told him finishing my paper before work. It brought a conversation about me going to school and my grades and such. His favorite part of his day was picking up the kids and making a great dinner. In the midst of the madness of our life, it was nice to take a little break and think of the good. I encourage you to take time to think about the best parts of your day!

Thursday, November 6, 2014

I just emailed Miss Iowa

There was a post by Molly, the mom that started the Lucky Fin Project, about Miss Iowa coming to Wisconsin. Nicole Kelly is a beautiful example of what all women should be, smart, beautiful and confident. I think all girls should have someone that they can look up to as a role model. Bella is blessed to have so many positive role models in her life! The thing that I've found about the limb difference community is that all of the girls and women older than Bella are happy to guide and help her in any way that they can. To describe it as amazing would be an understatement. To have girls and women that are like her is important. They know how to do things that I can't teach her, like tie shoes or button buttons. They also know how to teach her how to deal with the tough situations, the questions, the curiosity. I can guide her in all of these situations but since I was born with both hands there are just some things that I don't know how exactly to guide her. Having these people in our lives is important.

So I emailed Nicole and asked her to come to speak to Bella's school or to have dinner with us. I would LOVE the opportunity for Bella to meet yet another incredible role model. Nicole is on a mission to speak to schools and help them grow and learn. This is a tremendous thing for her to do. To go on a "stage" in front of little curious children, full of curiosity, full of questions, full of excitement. I have no doubt that they can be greatly impacted by her. She has the ability to shape and influence these kids in a great way. To show them to be confident, to go in the direction of their dreams, to be kind and understanding. I'm hoping Bella gets to witness first hand what Miss Kelly has to offer!

Tuesday, October 21, 2014

"Mom, what kinds of kids did you take care of today?"


I got off work yesterday and Bella came running down the hall and jumped into my arms. She had already been in bed and came out to greet me. I had a rough day at work and this just made the entire day melt away in my mind. Nothing else seemed to matter except this 5 year old who's arms were around my neck and legs were around my body. Her body was pressed to mine like a big koala bear. My day floated away and I soaked in this moment. She asked me to come cuddle her in her room. Usually I'm hungry and exhausted, last night, I needed that moment with my girl.

I carried her "like a tiny baby" as she requested and plopped her back into bed. I covered her up then snuggled in next to her. As I snuggled next to her she asked "Mom what kinds of kids did you take care of today?" I proceeded to tell her a little bit about my day. We talked about what we in the pediatric nursing world call "special needs" kids. I explained that some kids I take care of can't talk or walk. She said "Mom there's a girl at my school that's like that, she's in a wheelchair and doesn't talk". We'll call her Kyra.

"Mom, I know a girl at school named Kyra and she's like those kids. Do you talk to them?"

"Yep I talk to them but they don't talk back. Sometimes they laugh or smile or even giggle.  You can still talk to them and smile at them even if they don't talk." I told her.

"Yeah I sometimes I say Hi Kyra. She doesn't smile or do anything she just sits in her wheelchair" Bella replied.

"Well that's really nice honey. She may not smile but I'm sure she hears you and that probably makes her happy to have you talking to her."

"Mama, when I grow up I want to be a nurse like you and take care of kids. I want to work at the same exact place as you. We can go to lunch together and ride to work together. We can have the same days off and do things together on our days off.

"Well that would be awesome. I would love working with you and having you take care of kids with me!"

It's moments like these, when your kids have your full attention and are asking what seem like simple questions that you should take full advantage of. Yes, I was hungry. Yes, I was exhausted. All that mattered in that moment was my daughter and the questions and excitement that filled her mind. It's times like these that I get to teach her about my life outside of my most important job, motherhood. I'm a pediatric nurse and was long before she came into my life. Nursing is a passion that I love and adore and I can't imagine who I am or what I would be without it. I'm glad I get to teach her why I work and what I do. I'm glad she has questions and I'm able to answer them. I want her to spread her wings and grow into something she loves and is passionate about. 

Baby girl, I hope your life is full beyond measure with love and passion! 

Monday, October 13, 2014

Online fundraisers

We have several online fundraisers going on currently. We decided now is a great time of year to do fundraisers so that you can buy your Christmas and birthday gifts now and part of the profit will come back to us to help Bella get to Camp No Limits once again!

I was a wedding crasher at Steph's wedding, not really but it's a long story! She offered Jamberry to help us raise funds and keep your nails looking great. Buy 3 get 1 free!

My friend from years ago, Stephanie offered up her business. Silpada is beautiful .925 sterling silver jewelry. This is her direct link for our fundraiser. Silpada

My friend, TMI Amy offered to help you become addicted to essential oils. Young Living is the brand of oils I use for our family. I'm continuing to learn how to use them properly and Amy is an incredible resource! You should see her oils collection, it's pretty impressive! Each premium kit purchase gives us $10 for camp. Use think link and email me to let me know you ordered so I can tell Amy to receive our $10! My email is sarahzizzo@hotmail.com or bellacampfund@hotmail.com

Angela is someone I've never met in person but helped us get pregnant with Bella, I'll spare you the details! She was one of the first people to know that Bella was conceived. She's also a Norwex rep and has offered to help you become healthy and chemical free. Follow the link and enter Sarah Zizzo when prompted. Chemical free cleaning

Think about your family, your friends, your coworkers, bosses, all of the people in your life with upcoming birthdays... Think Christmas, get that shopping done early. Help us reach our goal of attending Camp No Limits again this year and continue to raise awareness about limb differences in the process! If these products aren't of interest but supporting us is, follow the paypal link to donate directly. We appreciate your love and support!!

Saturday, October 11, 2014

Siblings

In one of the limb difference groups we are a part of, a mom posted this:

"I felt like adding a discussion post of the siblings of limb differences. The awesome kids who may lead the way and very protective of younger kids with limb differences or admire the older siblings who are different. Then the challenges of creating balance of fair between the normal and limb different siblings. For example my youngest daughter gets more attention at times and she is very limited in amusement parks. Then I am sure in the future she will attend special camps and conventions to meet kids like her. Then have more specialized extracurricular activities for balance, flexibility, confidence and strength.

Is it weird to seperate kids based on abilities? The boys go on fun amusement parks, get bikes early, and play a wider variety of sports while their sister is left out. Then she goes across country, go to camps, and enjoy specialized extracurricular activities that I will likely deny the boys for cost reason"

My response was this:
"I think it's also important to recognize the siblings. I also think it's important to recognize that each child is different whether or not they have a visible difference! My youngest son loves balls and being outdoors. My middle son loves baseball and playing catch. My daughter (who has a limb difference) loves arts and crafts and prefers to be inside. Embrace them all for their differences! As for camp, we all go as a family. It's important for the siblings to be supportive and get an opportunity to see all different kids and met other sibs of limb different kids."

I thought more about this post all day. I couldn't shake it for some reason. Is my daughter "limited"? In my opinion, she anything but limited! Does she have to adapt, you bet! We all adapt in different situations that are new or uncomfortable to us. I always wondered how my brother and I were so different when we were raised in the same house, with the same parents and the same rules... then I had my own children. From get go, they were SO different! I learned as I had each baby, that you have to adapt to each child. You must figure out what works for THAT baby! It was like starting all over each time, hell I was starting all over each time! 

Bella is independent, strong and stubborn. She falls and hurts herself and she pushes you away (she's just like I was as a child!) She's strong willed and has her opinions. Her style is very unique. She's picky about how things feel on her body, how socks lie across her toes and how waistbands feel on her belly. She's a leggings girl all the way, she hates wearing shoes and would rather be barefoot. She loves arts and crafts and being indoors. She's quick to make new friends anywhere she goes. This girl could run on no sleep for days, I'm pretty sure she did as a baby :/ 

Grayson is hot or cold. He is a lover, a "nuggler" and desires to be curled up in your arms. He loves being outside and playing catch. He's easy going with his clothes and will wear almost anything. He loves wearing shoes and zip up hoodies. He's quiet and is timid to put himself out there to meet new people. He can go from happy to ticked in 2 seconds flat. He's NOT a morning person at all. He's a master sleeper. He loves dance parties.

Luca is a circus animal. He will walk into a wall and not even realize he did it! He loves to be naked. He loves to kiss and also loves to hit. He'll play with any kind of ball and has a heck of a throw. He's a wild toddler, a climber, no fear at all. He loves to read books and be dirty... really dirty! He's a fickle sleeper to this day. 

My point with all of this? My kids are all very different. Bella's limb difference does NOT define her even though it is part of her. Each child should be embraced for their differences and those differences should be celebrated. We don't treat her different because of her limb difference. We treat her different because different things make her tick.

As for camps and activities, Camp No Limits is a family affair, at least for now. The boys don't have a choice in that one. It's a good opportunity for them to see other limb different kids and adults, to ask questions about differences, to be exposed to siblings of limb different children and it's a fun vacation with great people! There will be times in their lives when they do go to different camps due to their different interests. There will also be times in life when we all go to camps together to have a vacation or show support of one of our family members. For us, each of our children will be treated different. Not due to their physical appearance but due to their needs, whether that is physical, mental or emotional. As for sports, so far Bella likes to talk too much and isn't into sports yet. We've given her the opportunity and she's been part of the parks and rec soccer program, it just wasn't her thing. We are all about exposing our children to a variety of things so they can explore what makes them happy. As for this mom asking about amusement parks, I have a strong sense that their daughter will have fun even if she doesn't get to ride all of the rides! Maybe she won't even like the rides! It's hard to say because she's so young. 

As for us and our family, parenting each child is different. We treat them with love and support no matter what. We will also teach them to be supportive of each other's hopes, goals and desires. 

Tuesday, October 7, 2014

Our first ONLINE fundraiser!

This is the first of MANY online fundraisers to come. Think of Christmas, think of teachers, wives, mothers, friends, sisters, daughter, cousins, aunts, nieces, all of those important ladies and girls in your life! My friend Steph is doing very well with Jamberry and graciously offered a percentage to give back to Bella's Camp No Limits fund.

This is your opportunity to purchase things that you want or need and give back to Bella as well!

Bella's Online Jamberry Party

Wednesday, September 24, 2014

Camp Re-cap

I didn't post all the pictures from Camp No Limits last January. Life and these kids make putting pictures into albums almost impossible. Here is our album that's now on it's way to us... almost 9 months later. :) Enjoy!
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Thursday, September 4, 2014

And so it begins...

Bella asked me to talk with her class. So the next day, I emailed her teacher. She was right on board and welcomed me to come to class THE NEXT DAY. As a mother, with my first child, who happens to be a beautiful girl, who happens to be smart and kind hearted, who just so happened to be born a little different, I'm learning as I go. Even with the second kid and the third one, I'm still learning. Being a parent is no joke! The pay is not in cash money but in hugs, tears and kisses instead. I'm learning, I'm growing, she's learning and growing too. One thing is for sure, we are all in this together, united we stand.

Today, I braved the crowd of twenty-something kindergarteners and one teacher (who has been doing this for 20+ years). I was nervous, my stomach hurt, my heart ached. Would I say the right things? Would they understand what I was telling them? Would they understand her difference and her abilities? I hoped, I prayed, I crossed my fingers and I went for it.

I sat on the floor with Bella by my side and my arm around her as I talked.

"Who has seen the movie Finding Nemo?" *everyone raised their hand except one.

"You seriously haven't seen Finding Nemo?" I asked him.
"Oh yeah, I have" he replied. Wake up little guy, I thought, you've only been here for 30 minutes.

"So who can tell me what's different about Nemo?" Many raised their hands with responses "He has stripes", "He's orange", "his brain doesn't work the same way as ours" (To which the teacher responded, um yes it does, I think you've got that part a little wrong), "OH I know, I know, he has a big flipper and a little flipper"

"Great job guys! You are all right! Now, who noticed something a little different about Bella?" Again, hands raised and responses started "She has blond hair!", "She has one hand and all of the rest of us have two!" "She's the only kid in the class with one hand!"

"You guys are all right! Way to go!"

I went on to explain that she was born that way. That when she was in my belly her hand never grew and it was just the way she was born. She could do everything that they did but she sometimes did them different. Then I said each of us do things a little different because that's the way we were made, all different. Some have blond hair or brown hair, green eyes, brown eyes... I explained that she can cut paper, write her name, get dressed by herself, hold hands, play play dough. I showed them how we held her right hand and then how we held her left hand and said "See it's just a little bit different but she can still hold your hands!" I explained that it doesn't hurt her or bother her at all and it's nothing to be scared of at all. There's nothing scary about it. It's no big deal! Then I let them ask questions.

"How can she play play dough?" One girl asked.

"Hmm... how do you play play dough anyways?" I looked at her. She showed them how she rolled things with her left hand and pressed down with her left hand.

"How come she has that little ball on her hand?" I explained that would have been where her thumb was but it never grew so it's just a little ball that doesn't bother her or hurt her or do anything.

"How does she cut paper if she can't hold the paper?" Again, I looked at her and said "How do you cut paper?" And she showed them that she holds the scissors in her right hand and uses her left hand to hold the paper down.

"But she can't trace her right hand because she can't hold a pencil with her other hand"
"You are right, but I bet someone could help her... who do you think could help her?"
"A grown up"
"The teacher."
"Or a FRIEND could help her too" Her teacher piped in. They liked that idea!

"What if we hold her hand too tight?" I told them that she would tell him, "won't you?" I asked her.
"Yep, I will" Bella said.

The end... well almost. It was short and sweet and only a little bit overwhelming for me. She seemed to be very happy that I was there and that we talked about it.

From one parent to another, do what's best for your child, whatever that may be. It was best for us to tell her that we could talk to her class if she wanted. She said no initially and that's A-ok! Then a day later, she changed her ming. That's ok too. For us and our family, that was what was best.

As parents, we consistently struggle with doing what's best and what's right and worry about being judged. I'm here to tell you, YOU are doing a great job! Your child may not be able to tell you that, but you are! Congratulations, you've made it! The sleepless nights are worth it. The tiny soap eating monster at my house, he's worth it. The little lover boy that "nuggles" is worth it too. The days I spent standing up wondering how much longer I could stand and bounce my tiny baby girl to sleep, they were worth it too. It's hard work. It's no joke, it's the thunder dome baby! You've got this! We've got this! We are all in it together!

Kindergarten day one

The first day went off without a hiccup. Ryan, Grayson, Luca and I took Bella to school and walked her down the hall and into her class. As her mom, I could tell she was nervous.

"Hold my hand!"

"Hold my hand TIGHTER!"

She walked into the school hand in hand with Daddy and Grayson and I carried Luca. She was dressed in a beautiful outfit her Tutu bought that had a bright yellow tutu and a white top with ruffles on the sleeves and a big bright flower on the front, her hair in pigtails. Where had our baby gone? Who was this big girl walking into school?

We walked into the classroom and got settled. Unloaded her backpack and hung it on her hook, sat the treats for the class on the table and got her situated in her seat with the other 3 littles waiting at her table. We kissed her goodbye...

"Wait I need to go potty!"
"Come in here with me!"
"Adults can't come into the kid bathroom, we'll wait right here for you and we won't leave" said her Daddy.
"Don't worry honey, we'll be right here when you come out," I told her.About 12 seconds later the door opened to an unflushed toilet.
"You have to flush. Did you wash your hands?" Daddy asked.
"No, don't leave!"
"We won't but you have to flush and wash" he told her. Once again she got settled back at her seat. Daddy hugged and kissed her and so did I. 

"Just one more hug and kiss mom" and I proceeded to hug and kiss her and take a picture.
"Ok... no wait, ONE more!" once again, I kissed and hugged her. I held back the tears. We blew kisses from the door way with well wishes "Have a great day, we'll be waiting for you at the bus stop!" Down the hall the four of us walked. What a lonely day I would have without my girl, I thought. My heart raced, my eyes welled up. Please God, don't let me cry until I get outside, I begged. My feet hit the blacktop of the parking lot and tears rolled down my cheeks. How could I just leave her? With a stranger! Ryan poked fun "You're going to get dehydrated!" Tears continued to roll. Then the ugly cry.

"Are you sad Mama?" Grayson asked me.
"No honey, I'm happy for her. She's going to have lots of fun. I just miss her already"
"When is Bella coming back?" He asked

"When school is over, after naps for you" I told him. Many times that day I heard the same question "when is Bella coming home?" and I replied the same way each time.

Then up the driveway she strolled. Her bus was EARLY! We completely missed her getting off the bus at the end of the street, our neighbor, who happens to be her best buds dad, got her off the bus with his daughter and walked them both home. OMG Seriously? Parent fail!!

Her favorite part of the day: Riding the bus with Hannah and the "Totally awesome playground"
Her least favorite part of the day: Leaving us

As I tucked her into bed that night, we talked at length about her day. She said "Mom, I think it's a good idea if you do come to my class and talk. The kids ask lots of questions about my hand and I get tired of it. Maybe you should come tell them like tomorrow". I explained that I would talk to her teacher and see what day worked best for her and the class to have time to listen.

"One kid was a little scared, Mom. He said my little hand was scary" I assured her that it wasn't scary, that it was just new to him, like he was new to her. He was learning about her. He didn't know how she was born different and I bet there were different things about him that she would learn about too. I assured her that people just had to ask questions to learn and I would tell him not to be scared. She was perfect and I would tell him that, I promised.

TO BE CONTINUED... 

Wednesday, August 27, 2014

Starting Kindergarten


In less than a week, our baby girl, will be starting kindergarten. How is that even possible? We've been super busy since we came home from camp and quite honestly, it's hard to even shower some days with 3 little kids. We've been running and exploring non-stop! It's been a fantastic summer and we have no complaints. The weather was perfect, a great mix of hot days and cool nights. We've gone to Ryan's families cottage as many times as we possibly can and we've lived it up for sure! Our fire pit that was built last year was put to use plenty of times.

Tonight was open house night at school. Bella was nervous, which is completely the opposite of her typical personality. It's weird to see her like that and it takes some time for me to figure out how to respond.  I held her left hand and she reached her right hand across to hold my hand tightly, either that or daddy and I each had a hand. I think she's like me, nervous to start a new adventure but excited too. She keeps talking about going to school, riding the bus, packing lunch and what ifs...

"What if EVERYONE wants to be my friend, I can't have like 27 friends"
"Oh sure you can, you can have a TON of friends, it's best to be nice and be friendly with everyone!"
"Well, mom, that's totally impossible"

Ah the joys of being five and spreading your wings outside of your safe little nest. It's going to be an adventure for her and the rest of us as well. What will my days be like with just the boys and not her? I feel like I'll miss her terribly. With my job, I'm so blessed to be home with them all day four days a week. It's more than most parents get. We get to go on adventures, go exploring, spend our days giggling, fighting, snacking, playing and making each other crazy. What more could you ask for in life? I know this will be good for all of us. She loves learning and making friends, she makes friends every place she goes.

Her teacher seems nice and welcoming. She has over 20 years experience. When I quietly told her about Bella's hand and that if kids seemed to have questions, that she could have their parents email me, she said "Well if she's open to it or you guys want to, we could have a little time that we could explain that, just let me know what you think. There are plenty of kids that are different here and there's special needs students and we just do what we need to do to be sure they are all successful, it's kind of our culture here." She made me feel like everything would be just fine and that I had nothing to worry about. I hope that's the case.

You see, Bella's been in her safe little nest since she was born. It's been all of us and she's been at the same daycare (which her Aunt is the teacher) since birth. She's been going to the same gym daycare since she was a few months old and all of those people know her and love her just the same. No one really notices or mentions her hand. It makes me nervous. Kids are curious and some kids are downright cruel. I'm hoping that her answer of "I was just born this way" will suffice them. She's a smart girl and knows to tell her teacher if her space is being invaded or she feels uncomfortable. I'm just hoping that doesn't happen.

Wish me luck that I don't bawl like a baby when she heads off to school. I always wondered why moms did that. It's a bittersweet moment for sure. I'm hoping to hold back the tears so she know her wings can soar as high as the sky!

(Why can't I upload photos any longer into my blog??!)

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!

On being thankful...

Each November I try to write on Facebook some of the many reasons I am thankful. This November started out with a bang. So far it went like ...