Controversial

In the limb difference community, things come up that I sometimes have certain "feelings" about. Sometimes those feelings are hard to explain or put into words. The following can be summed up by the feeling of sadness...

There was a post today in one of my limb difference Facebook forums that discussed a gofundme account for a little girl. The account was set up by the mother of the child because she wants her child to have a hand transplant so she can "make heart shapes in photos like her cousins, to play baseball with her cousins, to tie her shoes, to do back bends, cut out her artwork, ride her bike without leaning forward, and hold two Barbie’s and have them talk to each others" Those are the mother's words, not mine.

Following the post on this page, parents of children with limb differences and adults with limb differences posted their views. One things I have learned and love about our community is the mass amount of support and love that surrounds us. I feel that there are always people I can reach to if I have a question or concern, if I'm feeling sad or need help with a situation. We are blessed beyond belief to have so many people around us that are available. The community is truly a family. Our camp family is just that, a family.

I've learned that sometimes we have different opinions and I'm always surprised by the people that weigh in, yet still remain kind and respectful. It's incredible. It's not just people pressing their opinion or thoughts on you. I think many of us agree that what works for one, does not always work for another. That's the thing about life and parenting too. I'm a working mom, some people don't agree. That's ok, it's their opinion. What works for one, does not always work for another. It's called acting like an adult and showing respect when voicing your thoughts.

(Bike riding with her own style!)

A flood of emotions came over me as I continued to read the gofundme page. I felt heartbroken. I fought back the tears. This is a life changing procedure. The child will have to be on antirejection medications for the rest of her life for something that is unnecessary. My daughter "makes heart shapes in photos" if she wants too. She ties her shoes!! She cuts out her artwork, heck she just cut out a bunch of stuff she wanted for Christmas from the toys R us catalog, I've never seen a child cut out so much, so fast :) She holds Barbies and they talk to each other. Often though, I'm playing Barbies with her.

(Painting jets at a Home Depot event)

The mama goes on to say her daughter "will never wear a wedding ring, paint her nails or braid her hair". My baby paints her nails if I let her :) She put her hair in a ponytail for the first time last week (THANK YOU CARRIE D.!) I would be willing to bet anyone that she will wear a wedding ring on her right hand. I mean, if she is in fact my child, she'll want to sport a little bling! The mama says "everyday things most take for granted are an obstacle for X" and "daily she feels defeated". I'm telling you people, my heart was breaking for the little girl and for her mama. This mama needs support, she needs encouragement so that she can give her daughter the confidence to go forth in the world with her head held high and her smile bright. I whole-heartedly believe that Bella doesn't view most things as an obstacle. I do not feel that she feels defeated daily or even weekly due to her difference. I would be be shocked if that were the case. I believe that Bella knows life no different, I believe she does everything to the best of her 6 year old ability, I also believe my boys do everything to the best of their abilities as well. Every child develops and learns at a different pace. In our house, we embrace those differences.

(Homemade play dough, as you can tell, the boys are thrilled!)

I'm not bashing this mama for her feelings. I've reached out to her. I want her to feel loved and supported. I would want nothing more to have her come to camp with us or any limb difference camp. I want her to feel the love in our community, the support, the encouragement. I want her to know that her child will grow to be successful and passionate about being the best that she can with the help and support of her mother. I believe that Bella is the way she is because we are encouraging and supportive. I also believe that she's my child so she inherited a fair share of sass and stubbornness as well (oh Lord, help her!!). I KNOW with 100% of my being that she can and will do anything that she puts her mind too!

(How she rolls! She dresses herself, picked out sunglasses, popped out the lenses and asked for pink spray in her hair. How I roll, I said sure!)

How do you make your kids feel special?

 I came across this blog yesterday. I don't usually link to other blogs but I instantly fell in love with this woman and her thoughts. Being a parent is the hardest job I've ever had in my entire life. Did I mention I've been working since I was 15? So yeah, I've had a variety of jobs in my life.  I've been a cashier, worked at the mall, McDonalds, nanny, a waitress, a beer tub girl, a secretary, a chiropractic assistant, a bagger, babysitter, a checker, a lab assistant, an intern, a charge nurse, a pediatric staff nurse, learned a new hospital system in one shift, women's health nurse, a clinical instructor, a classroom instructor... yeah I'm pretty sure I'm forgetting one... or ten! Whatever, regardless, being a mom is HARD!

This blog spoke volumes to me. When we decided to have 3 kids, I struggled with how I would love each one. How would I make EVERYONE feel special? loved? important? Was there enough of me to go around? Would I still be a good wife? A million questions came into my head. Do I have a favorite? Yep, I sure do. It's the one who sleeps the best and doesn't wake me up at night, so it changes often :) All kidding aside, I love my kids, they are each unique and special for different reasons.

(Parenting at it's finest!)

The post I linked to above, spoke volumes to me. I really LOVE the idea of having one night a month that each kiddo gets their own special time with both parents to have undivided attention. It's hard to be pulled in 3 different directions and while I try to do what I can to be sure everyone gets enough of me, I wonder what they think. Do I do okay? I think I could do better.

I'm lucky to have such an incredible husband that really is my teammate in life and in parenting. It makes a world of difference. I never feel like I'm in this alone. I never feel like I don't have help. I always feel like I can reach out if I'm struggling. I can take "me" time if I need it. He understands. He gets me. He gets parenting 3 little kids. It's a giant blessing to have him on my side.

We talked about it tonight, about implementing this at our house. We talked it over with the kids. Bella LOVED the idea, maybe because the 24th is right around the corner :) Whatever the case, she thought it was a cool idea. I think so too. I'm curious though, how do the rest of you make your kids feel special? If you have one child, what is a tradition or something you do that makes a difference? If you have more than one, how do you be sure each kid gets enough of you? Do you do "alone" time with them at all? Or a "date" day? What WORKS for you? What have you tried that hasn't worked?

I may have lost my mind

This year, we've had a lot of transitions, like a whole lot. Ryan started a new job. I resigned from my job of seven years. I got a new job and a second new job. I'll be wrapping up graduate school in about a week. The kids started a new daycare. Bella started first grade. Yeah so we've had a few transitions. I'm now home every evening and get to spend the evenings with our little family. Remember that saying "the days are long but the years are short"? It's SO true. It was a really long day just the other day when we did a ton of yard work, cleaned out the garage and Luca flooded the bathroom... yeah that's an entirely different story.

I've opted to take the kids to Kansas City on my own... without Ryan... on a train...that takes 12 hours... shoot me now? Wine? Drink and ride? Baby leashes? Sedatives? Benadryl? Whiskey gums? Oh wait... all my kids have teeth and I don't drink whiskey. Yeah so I may have just lost my mind... or was it gone long ago? Yep, I'm pretty sure that's the case.

Let's be real there is no *easy* way to travel when you have three kids that are 6, 4 and 2.  Let me talk you through my though my thought process. We've driven (all 5 of us) many, many times. Like, twice a year or more since we've been in Wisconsin (7 years in case anyone is counting). So with Ryan's new job, he can't leave when any snow fall is predicted. Did I mention we live in Wisconsin and it's like butt cold and snows forever?! Okay maybe not forever but you get the idea, a really long time! So yeah, he can't go at all.

This is the first year in the history of our relationship that I'll have several weeks off for the holidays and be home without work to do. *Side note- I still can't believe I get holidays off, it's like Christmas came early for me! For 13 years, I've worked holidays.* While thinking all of this over, I still want to spend part of the holidays with my family in Kansas City. We usually go every year for Thanksgiving, however because of timing with Bella's school, I figured if we went later we could stay longer and really have a great time visiting and vacationing. This prevents complete stress from running place to place to see everyone in a three short days.

What about me driving? It takes 10 hours from here to there without weather coming into play. I traveled 6 hours to a family reunion this summer alone and the thought of 10 hours makes me want to seek therapy. Traffic, construction, yelling, fighting, boredom, constraint, hunger, weather... are we done yet? Ok so that was nixed.

Flying? Have you taken 3 kids on a plane? Yeah I have and it's tough with Ryan there. Without him? yeah not happening. Three hours in the airport (checking in, security, screaming, crying, fighting, luggage, did I mention security with 3 kids?) then a flight with the kids being trapped in a teeny weeny space without car seats (because no way could I lug 3 car seats and 3 kids on a plane). Did I mention it cost $1800 for us all to fly to KC from Milwaukee? Uh yeah, not so much. That's out.

So how COULD it happen? Ryan and I just took the train alone to Chicago. It was dreamy, relaxing, wifi, plug in, space to move. Could anything be relaxing with 3 kids in tow? Likely not but could I make it work? I checked costs, less than 1/4 the cost of airfare. Score! I checked travel times, 11.5 hours. Yes it's long but not that much longer than the car and we could move around. No stopping to eat or refill gas, no weather to worry about while driving, no construction or traffic. Will the kids be bored? Probably but I can pack snacks and the train serves food. There's no crazy security to go through with all 3 kids. There's plenty of room to walk around and move about. You can sight see along the way and actually enjoy the time with my babies. Did I say enjoy? Wait, I may have seriously lost it! Do I dare say that I'm actually looking forward to it? I am, honest. I'm planning ideas of snacks and things to do. I'm excited for this new adventure, a first for my babies. I'm sad Ryan will miss it and miss KC. I'm thrilled that we have found a budget friendly way to make this still happen for the rest of us to go. I'll keep you posted on my plans of activities and snacks too. I'll even blog about it when we are done!

A glance into my daughter as a teenager...

We've been knees deep watching the World Series and rooting for the Royals (my hometown team). I let Bella stay up late and watch part of a game with me one night. She's curled up under my arm, cuddled tight into my body, rubbing her bunny just like any tired little six year old. Then she says it...

"Mom he's SOOOOO handsome" talking about Gordon, one of the Royal's players.

"I thought you said the Royals were SOOOO gross!" I responded and we both laughed.

"Well the Brewers aren't playing and I do kinda like em" she's trying to support her local team while her mom brainwashes her about the Royals and Kansas City :)

"I mean he has face stuff like daddy and that's so handsome" I couldn't argue with that. I like the few day old scruff too. It is handsome and manly. Wait, she's six! What the hell! We talk about how daddy or the boys look handsome or they comment how we look pretty or beautiful. I think it's important to grow up in a house that bleeds love. I want my kids to have zero question in their minds that we love them, that we think they are the bees knees and that it's nice to compliment someone when they did something well or they look nice. It makes people feel good. She's used to hearing those compliments and seeing the love that her father and I share. I'm proud of that. I'm proud that she knows her daddy and I love each other. I'm not so sure that she thinks a Royals player is handsome!

The Royals won the series and I've been sporting my gear for the last few weeks. Bella refuses to wear hers. She's a closed doors fan. She may never admit to her friends at school that she likes them... or maybe she will. She's strong and confident. Quite honestly, I wouldn't put it past her.

This morning, while getting ready for school things were rolling along nicely. She was playing and coloring and writing spelling words. The boys were wrestling and laughing. There were no tears or fighting... until she was mad about picking her outfit.

"Mom, I have NOTHING to wear. There's seriously nothing!" She yelled from her room.

"Boo you've got to be kidding me, your closet is full of clothes".

"Mom no seriously there's NOTHING! It's all gross" and so it continued.

She has her "own mismatched style" and she doesn't care if she matches. She cares that she feels good in what she wears. Sometimes she goes to school looking like a circus clown dressed her. Other times I'm shocked that something actually really does go together. She certainly has her own sense of style and expresses it without fear. Heck, she pops the lenses out of sunglasses and wears them to school because "they look cool". This used to cause tears every morning and now we just don't fit it. She's dressed, it's weather appropriate, she dressed herself= WIN! The two non-negotiables are brushing teeth and hair. I've offered to cut her hair if she doesn't like brushing it. So far, she brushes it or lets me.

This morning, I swear I had a glance into our future. How on earth will I deal with the teenage years? Mom, Dad, I'm sorry. So sorry. I was a teenage girl. Bella is my daughter. Paybacks are hell. You can celebrate that I'm getting mine :)

Parent Teacher Conferences- Oh my!

Last night were parent teacher conferences at school, I might be the odd ball parent because I love them. It gives me insight on how things are going at school, academically and socially. It's important to me that my kiddos are respectful and get along well with others and that others see that.

Bella's teacher does a self-report tool with each child. They grade themselves on how well they are doing in certain areas. I was so proud to see that Bella seemed to really pay attention to the questions and provided rationale to the teacher as to why she rated certain things the way that she did. She rated "I participate well in class" as middle of the scale because she said "sometimes I just sit and listen and don't raise my hand to participate". Mrs R agreed that sometimes she just is an observed and not an active participant. We both agreed that there are times when it is ok to observe instead of actively be participating.

Bella had warned me that she "had a really messy desk". The only thing she rated herself poor on was organization. I laughed when I saw it because I she had already told me. Mrs R and I looked in her desk, GROSS!!! Her room is typically messy too if it's up to her. So I went home and warned Bella that her "job" friday was cleaning out her desk. She thanked me for bringing home a few tupperwares that had snacks in them. Silly girl!

She is most challenged by literacy or reading. She says that sometimes "tough words are hard for me". She's one of the youngest kids in her class and she's reading right on schedule with the others. We both would like to see her reading a little higher level books. She choses F level books but they are very easy for her. We talked about both encouraging her to pick G books so that she can advance her reading. Mrs R said "you guys must be reading a lot at home". We do read a lot and I'm glad it shows in her classroom. All of the kids love reading!

Mrs R described Bella as a good listener, friendly, gets along well with others, has lots of friends, social, respectful and confident. I was thrilled by hearing her description of her. Not only was it nothing negative, it is all qualities that I hope to see in my daughter. Even though we have three kiddos, they are each very different and unique in their own ways. Bella is very confident and secure in who she is and I'm happy that we can continue to allow that to thrive and develop. I hope those are traits that continue to stick with her throughout her life.

We briefly discussed her hand. She said that quite honestly it isn't an issue at all and it's never mentioned or talked about. The kids just don't really care about it. This is what I'm most excited to share with other parents. I want you to know that your child's difference does not have to define who he or she is! They are their own little person who just happens to have a visible difference. Bella is so much more than her limb difference. I'm thrilled to hear that it's openly accepted and a non-issue for her or others. I was worried when I was pregnant that this may be something that could define her as a person and I did not want that. All of the things mamas and daddies worry about! So many of them seem so significant at the time and later we look back and laugh at it later.

Who wouldn't want 11 fingers?

While Bella was reading Dr Seuss' one fish, two fish, red fish, blue fish, she came to the page "One, two, three four, five, six, seven, eight, nine, ten. He has eleven! Eleven! This is something new. I wish I had eleven, too!" We both giggled.

Then she said "Mom I wish I had eleven fingers, wanna know why?"

"Yeah why?"

"Because eleven is my favorite number EVER! Duh!"

Of course, who wouldn't say that. This girl surprises me every single day!

So proud

Today and always, I'm proud to call my mama mine. She's been through a lot in her life and to say she's a strong woman is a bit of an understatement. Three years ago, she worked to raise money for Bella to go to camp through something she called "Bikers for Bella". She did a poker run and it was nothing short of incredible. A TON of work and she didn't bat her eye once about it. She was excited to be involved. Well through that, relationships formed. She's became close friends with Harley and her boyfriend, Chad who own a bar in Missouri. It's called Charley's Roadhouse. Last year and this year, they once again raised money for Camp No Limits. I'm so proud of my mom, Harley and Chad for continuing the efforts.

This year was ultra-special. They raised money for another family to go to Camp No Limits. Brandon was born with a limb difference and he's the little guy that we supported this year through Bikers for Bella. Not only was enough money raised for Brandon to go to camp, enough money was raised for his ENTIRE family to go to camp. My mom cried. She's SO excited to share the love with someone else.

My mom seriously has a heart of gold and there's a special place in her heart for children. She fell in love with Brandon and his family. Not once did she say she wished we would've done this for Bella. She knows how special Camp No Limits is for Bella and our family. I've said since we first went two years ago that camp is life changing for kids and their families. I have no doubt that Brandon's experience will be the same. I have no doubt his family will come back changed from the experience. I'm thrilled that our family, my mom and Harley and Chad are involved in making changes in the lives of others.

Bikers can appear rough around the edges to some people. Riding in with the load pipes, leather jackets, chaps, long hair, tattoos, cussing, dropping f-bombs (as I always told my dad), drinking... There's often a stereotype related to bikers. My dad fit the stereotype pretty well, my stepdad fits the stereotype in some ways too. I will tell you right now, any of those men would do anything for you. They are the most gentle souls on the planet. I want you to know it was BIKERS that worked with my mom to raise this money for Bella in the passed and Brandon this year. The bikers are "my bikers" Bella says. She loves them all. Bikers for Bella was successful for Brandon this year and I'm thrilled to see what they will continue to do in the future.

Mom, I'm beyond proud of you. Harley and Chad, you have a special place in my heart and in our family. We are blessed to know you and have you be so dedicated to our goals. To all the riders in this years ride, THANK YOU!!!