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!

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!