Poop in every yard...

Every day I am reminded that having a disability gives you a different perspective from the norm.  We dream of capabilities, face struggles and long for things that may never have even crossed another’s mind.

But to be honest, I think this goes beyond disabilities – it is just being alive. Old people long for energy and good knees, young people long for independence and wisdom, etc.

The grass is always greener right?  But we forget there is probably squirrel poop in every yard.

My new buddy from Listen to Your Mother (heyyyy Lindsay) was telling me how my ponytail blog stuck with her.  She laughed when I told her that walking and doing a pony was awesome. HECK, just doing a ponytail is amazing to me.  I want to be you.

As I continue to get to know my community of AMCers, I have found that we all have different levels of severity.  I describe them to my husband like we are cans of beer or diet soda…

“Oh he has strong legs but weak hands…totally AMC Lite”

"ehh she has a limp and weak hands.

..AMC 10 calories"

“Yep, she uses a chair and mouthstick…she is legit AMC”

So even in my pool of fellow AMCers we all face different challenges.  Until I tapped into this group online I never knew anyone who thought like me.  When I see questions in our group page I can’t help but smile. It’s like they crawled inside my mind.

Will the person giving me a manicure/massage be creeped out by my differences?

Did you get anything special to drive?

How do you flat iron/curl your hair?

What tweezers work best for you?

How do you exercise? What works with weak arms/legs/hands?

What kind of shoes did you wear to your wedding?

Any nail clippers that are easy to use?

The internet allows us to ask these questions that the normal world might never think about.  When I kick back and reflect on it, I almost tear up.  We are so lucky to be born now with the gift of technology and cyberspace - I can’t even imagine how it would have felt to be me 200 years ago or in other countries that were not as equipped to tap into the abilities rather than the limitations. I’m sure life was not easy.

“Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.” 

― Robert M. Hensel

mama...is it cuz you're old?

I think I have mentioned in the past that Oliver never paid much attention that his mom was different.  He’s now 3 and is becoming rapidly aware of what other kids say and do.  On pajama day at daycare he walked in the classroom eyeballing the kids to confirm his Batman jammies were the norm or he was going to pitch a fit and demand his “real” clothes back. I could read his mind as his big blue eyes scanned the crowd.

The kids who transitioned from room-to-room at daycare with Oliver are used to me and they don’t think anything about my crutches. However, new kids and the random ones who cross my path at night on the playground  tend to greet me with a sea of questions. Oliver always listens in and likes to tell them that they are crutches and I use them to walk. However, I wonder at times what else is rolling around in that wild toddler mind.

So the other night as we were leaving Qdoba the conversation that transpired didn’t shock me.  It still makes me giggle though…

OLIVER:  Mama why do you use crutches?

ME:  I was born without strong legs, they help me walk.

OLIVER:  Do you use them cuz you’re old?

OLIVER’S DAD: Yeah, mama is really old…

*insert snickers*

ME:  Nope, I need them to help me get around, my muscles are not strong.

OLIVER:  If you eat more you’ll get strong mama

ME: I like that idea, good plan! 

*dreaming of our pile of Easter candy*

I also caught Oliver imitating my gait when I walk without my crutches.  I don’t use them around the house and can get around fine for short distances but my walk is not completely smooth.  When I’m in the privacy of our home - I don’t care, it is just nice to be able to carry plates, laundry baskets and get a vacation from having to hold onto crutches.  I know Oliver’s reenactment is crazy innocent and he just likes trying out everything he sees. 

In my gut though, I know it is just the beginning, I can only imagine what is to come…

Elephant Rides

Life is always a wild ride. Half of me loves all the exciting stuff that is up in the air, the other part of me really wants to be on a warm beach...sleeping in the sun by myself. Just for a day or so, for those of you who know me... I'd last a day and then I'd be bored.  I'd miss Facebook.  Yep, Twitter too.

The next two months will be exciting.

I am pumped to be part of the Milwaukee cast for 2013 Listen to Your Mother. I can't wait to meet the others at practice and hear their stories. I am giddy to be around strong writers and soak up their words. It is crazy cool.

To top it off, the Morning Blend segment has been scheduled for April 25th at 9am. I will be on there with a woman named Becky who has her master's degree, a career, two children and also happens to use a chair to get around. I had the chance to get to know Becky a little when writing a MetroParent article last March.  The archive link to this issue seems to be down but the article is still on my MilwaukeeMoms blog.   We have never met in person so I am super excited for the opportunity. She is amazing. 

It gets even a little sweeter...my colleague Barry and I are working on a short children's book.  It is going to be through the eyes of Oliver and how I think he views his mommy with "magical walking sticks."  As Barry has been working on the illustrations I have been providing pictures so he can capture how my hands are positioned and accurately depict AMC.

Tonight I had to show how I give elephant rides. It went against everything I once was. I was not the person to take photos showcasing how I am different. I loved winter for all the clothing. Less people eyeballing me.  {shudder}

Even as I type this it's still sinking in, I have found a freedom and pride in my differences. I am so glad that even if I can't bend my hands the right way, I still crawl around the house with Oliver on my back, bossing me around. There's no pity party this house. 

This appears to be a post with no real point beyond some updates and excitement for life. Thanks for all the love on Facebook. Knowing I have such awesome friends, family and fellow AMCers cheering me on makes my heart smile. 

OH...one more thing...

Barry has recently finished another book, Blue Moon, A Cat's Wish and it is amazing. I felt kinda teary reading it the first time to Oliver. Maybe it was pride for Barry, maybe it was because I wanted the poor cat to find someone to love him, maybe I was sad that the moon borrowed Nicki Minaj's lipstick, who knows...please check it out. It's a good Easter basket stuffer. {shameless plug}

Toddler Trials

I always felt like my son and I had an unspoken understanding.  I like to imagine that in the final seconds before he was born God sweetly whispered to Oliver, “be good for your mommy, she needs your help.”

Throughout the past three years my husband was more of the “mama bear” in the house since he had to carry him and help with the things I couldn’t do.  Oliver tends to give him a hard time on things that he easily does for me.  I’m not sure why but it gets frustrating.  

Last Friday my husband had a fairly serious ear surgery - removing a cyst/tumor-like growth and rebuilding bones, using a drill, etc.  You can imagine how his head and ear felt after all that. As we came home from the hospital and he landed on the couch, I began my brief journey with solo parenting.

Let me start by sending any single moms out there a hug..and a nap…it’s exhausting!

My husband was around but he was in pain, tired, medicated and under strict orders to rest and not lift anything.  

One night Oliver asked my husband to lift him and he said he couldn’t. Then Oliver said, “mama you can’t carry me, you’re too short.” This was the first time he verbally recognized that I don’t carry him. His reason behind it still makes me grin…I know I’m no giant but sheesh, 5’1 isn’t THAT short…

Since he turned three it seems as if he has learned a few new tricks.

He likes to negotiate.

He knows he can out run me.

He knows I can’t grab him and carry him away when he’s acting up.

Day one of getting him ready for daycare involved major drama getting him dressed.  He wanted to chill in his jammies and stay home with dad.  Once we got outside to the car, he ran to the other side of the car wanting me to chase him around the car.  Knowing it was a battle I’d never win, I just opened his door and stood there surfing Facebook on my phone until he got bored.

The next day came with an instant replay of getting dressed.  My husband was trying to help which just made it worse.  By the time it came to the final battle of getting on his jacket, I was feeling like a sweaty mess. I threw my coat on the ground while trying to put on his coat.  After getting him set, he managed to trip on my coat…fall…hit his head and major waterworks followed. 

Shoot me now.

I was insanely happy to go to work.  Almost giddy. 

That night when I picked him up I was hoping for a clean slate and some much needed mercy.  He followed me to the car like an angel. He climbed in great.  After that it all went downhill. He refused to sit in his car seat.  In the awkward cramped car I didn’t stand a chance of pulling him up into the seat and buckling him in without his cooperation.  It was dark, cold and I just wanted to go home.  So I stood there in his door while he sat in the front seat refusing to get buckled up.  I have no idea how long it took but eventually I outmatched him and he made his way back to his seat.

As time passes the challenges change.  The days of dealing with carrying a car seat are gone. No more changing diapers.  The new battles are totally easier on the pride because in the end I WILL win but are emotionally exhausting.

AMC mommies out there…what have you experienced? 

are you in the gutter too?

We are all in the gutter, but some of us are looking at the stars.
- Oscar Wilde

The other morning as I was getting in the elevator at work, a man held the door for me and said, “uh oh that doesn’t look happy”…

I simply smiled at him and the elevator whisked me away from him and an awkward conversation that was right around the corner.  It was way too early for that. I needed my skim vanilla latte or Diet Mountain Dew fix first.

As I sat down at my desk and started my day, his comment rattled around in my head.

That doesn’t look happy.

It is really easy to let situations and others tell us how to feel.  I am the first to admit that when I’m sick, my shoes are uncomfortable, days when I can’t do anything right or when those I love are down…I want to hide under a blanket or run away to a warm sandy beach by myself.  

In the end, how we feel is up to us. Every gloomy thing has an angle of sunshine. 

Yes…life with a weak body bites the big one.  Crutches are annoying.  I can’t do all things I want to do.  I have to ask for help.  People stare at me trying to figure me out.  Kids ask me why I have crutches every morning at daycare.  I want to run, jump and feel strong.

But…having AMC has introduced me to the world of doctors, therapist and other people with challenges. I met amazing people that I would have never known.  I am way more perceptive of how others feel. I have tapped into a world of people doing really cool things for others with what they learned from being sick, different, etc.  I learned how to feel okay about needing others. In a weird way I sometimes think that giving them a chance to help me can brighten their day too.

We are all given a deck of cards in life. How we chose to play our hand is up to us. You can dwell on the bad cards or embrace your pair of eights. 

hey baby, let's go for a spin...

I received an email today from a fellow AMCer looking for adaptive ideas on driving.  It's tough because we all have different challenges and our symptoms vary. 

It was not a big deal for me when I turned 16 because my hands are bent but my elbows are straight. I have enough reach and strength to steer, shift, etc.  My legs are also strong enough to push the gas/brake without any special gadgets.

However, I'm guessing some of you might use some things to help. I'd love it if you could add a comment on here with some ideas on what has worked for you. 

I love watching Little People, Big World to see all the things they have come up with to drive, reach things and live a normal life. 

The smallest tricks can make life so much easier. {like the 1-up ponytail...WOOT}

Please help!

 

 

operation skinny

My dream for this blog was to network with other AMCers to share tips, inspire each other and bring awareness to those "normal" peeps on what it's like to have a disability.  

So when I receive messages from readers, I get really excited. I got one this week on a topic that I think we all struggle with...OPERATION SKINNY.

Well, there are those girls who seem to be able to eat everything and anything and remain tiny, cute and chipper from the latest sugar cookie high...but we don't like them.  They never had to lie on the floor to button their jeans. {wink}

Maintaining weight takes work, willpower and dedication.  When your ability to move is limited, this adds a whole new twist.  A fellow AMCer who uses a chair asked for some tips on losing weight.  I am hoping you can comment on here and share what you do to stay healthy.

The level of mobility we have impacts so much. We are all different, but to get things started, I thought I'd share the things I try to do. However, I love pizza..fries...ice cream much more than my 5'1 frame needs...so these are just the things I know I should do, when I'm not being a pig.   :)

1. Nike Fuel Band

I love this thing and like to track my steps. It inspires me to take a parking spot at the end of the lot or walk a few laps around my neighborhood at night instead of surfing the web. Yep, picture me doing laps around the hood with Carly Rae Jepson belting out Call Me Maybe in my headphones.

Basically, I try to not let my head hit the pillow at night until my 10,000 steps have been walked.  I was on a roll and then work became busy and followed me home, my son got sick, I got sick, a new show came on TV, etc. I have officially fallen off the wagon.  I need a kick in the butt to get back on. 

 

2. My Fitness Pal

This website and iPhone app rocks! You can scan the UPC bar on packages and it calculates the nutrition. You can also search for food or manually enter calories.

Set goals for your ideal weight and it will help determine the calories you need. I usually eat whatever I want but when my calories for the day are gone - I am done eating.  I found it made me become much more thoughtful about what I put in my mouth.

 

Both of these tools incorporate social media and the option to add those you know as friends. This helps motivate me and makes it a little bit more fun. What works for you?  

 

 

don't cry over spilled milk

Have you ever dropped an entire gallon of milk?                                                       

Let me tell you, it makes a horrifying mess.

It bounces. The plastic cracks. Milk sprays, pours and splatters.

AMC hands are not super strong. I learned the hard way for trying to put away groceries fast. Should have used two hands. The mess was not worth those few seconds I was saving...

I saw this Magic Tap automatic drink dispenser infomercial and want to give it a try. I think it might make life easier and will decrease the odds of soaking up puddles of milk off my kitchen floor, running down my walls and in my shoes.

Check it out, maybe it would make your life easier too.

 

superheroes in my car...

I can't believe an entire month passed since I last posted on here.  It's pretty terrible. I think of things almost daily that would make great blog posts but it seems like work, laundry, family, friends and well, life in general, sucks up my time.

I'm not so sure how I'm going to find time for my fall TV line-up that's about to return. My DVR is going to be smoking! {grins}

I went to pick up Oliver from daycare again the other day. This new sense of freedom is amazing. I'm still holding out for the day we go to Target together and can shop alone. Maybe he'll carry the basket for me. I'll probably cry. It will be sheer magic.

So back to the whole picking up Oliver from daycare story... All went well, we got in the car, cheered on the way home, I told him how awesome we are and then we landed in our driveway.

The small red button on car seats are brutal, they are so hard to push and totally hurt my finger. 

I climbed in the backseat and fought with it.  Meanwhile, Oliver made grunting noise and comments like, push hard mama, as I fumbled around, sweat dripping down my forehead...thanks to the never-ending heat wave this summer in WI.  {major dislike}

On the seat next to me was a pile of Oliver's superheroes. I grabbed one and quietly pleaded, Dear Lord, please help me get him out. Oliver smiled at me and said, Dear Lord, help mama. I smiled back at his sweet face and with renewed zest, I attacked the red button with the hard plastic foot of good ol' Aquaman. 

The button instantly popped open and Oliver scrambled out of the seat.  It was a sweet moment of victory, hearing my son's first prayer for help and being with him as it was answered.

Life is good.

 

729 days

In my 945 days post I shared my victorious first outing alone with my son.

We hit a new milestone today. 

729 days ago Oliver started daycare. We were really lucky to have our cousin Brittney care for him until he was 8 months old.  The thought of leaving this sweet face alone with strangers all day broke my heart.  So the very first morning when we dropped him off I sobbed like a baby. 

Over the past two years we have established a routine.  Since my job was downtown and parking was a small fortune, my husband and I started carpooling. We'd ride together, drop off Oliver and then go to work.  This was perfect since I could not carry his carseat and I liked being part of the drop off experience. 

I wanted to know his teachers, ask the questions my husband never would and be able to see that our boy was in good hands.

Most of the time this was ideal.

However, there were days when I got out of work early. My son was sick and needed to come home. My husband had to travel for work.  I wanted to be able to swing in and pick him up but I couldn't.  It was so annoying. I was constantly arranging help or waiting around on others.

Today I decided on a whim to try and get him myself. He's older now. He listens fairly good and can walk with me to the car himself. His teacher knew this was a milestone so she peeked around the corner to make sure we got in the car okay but let us fend for ourselves.

WE DID IT.

I told Oliver about the awesome team we are as we drove home and snapped a quick shot while waiting at a stop light. He loved it and shrieked, take another mama!

Yeah, we probably could have tried this sooner, but the routine we established when we first became parents has become life. It's just what we do.  I need to remind myself more often that I can be more independent now and try new things with Oliver alone.

I saw this quote on Facebook today and it seemed fitting.

You must always remember. You are braver than you believe, stronger than you seem and smarter than you think.  -Christopher Robin to Pooh Bear

clever clasp

Like most people, I am not a fan of asking for help.  I love gadgets that make it possible to do things myself.  I willing to bet most ladies out there have struggled putting on a necklace or two, but it's really hard when you have "AMC hands" on top of it.

I hate to say it but once and awhile infomercials sell some really good stuff. The hands-free dryer I mentioned in my Things That Rock post still is one of my favorites. 

Have you ever used the Clever Clasp?  It is honestly one of the best things out there. You hook the magnetic pieces to the ends of your necklace and then you can avoid having to clasp your necklace shut.

Some might need help getting the magnets hooked to the necklace, but after that you are free to change your necklace as much as you want...without help.

No more going to bed with a huge chunky necklace because you can't get it off...not that something like that would ever happen to me!  {wink}

Here's a really terrible video that highlights the amazing Clever Clasp.  My camera cut off the "clasp" 75% of the time but watching it back made me laugh...  I don't know if As Seen on TV sells these anymore, but I looked on Amazon and saw a bunch for really cheap. 

 

 

Amazing AMCers: Meet Nichola Smith

I recently “met” a fellow AMCer and despite the fact we live in different countries, we were instant buds. Through our chats via messenger and email it was like we were the same person. She understood me. While every AMCer seems to have their own unique spin of symptoms and severity, we still shared much in common.

Nichola found me on YouTube and when she showed her flatmate the video of me doing my hair, they laughed since she wondered what the heck Nichola was doing when she found her lying on the floor doing her hair for the first time. It feels good to know there’s a group of girls out there who share my ponytail woes.

Without further ado, let me introduce you to Nichola Smith, a 30-something gal from New Zealand. She is a nurse who focuses on the education side of the profession. She is the epitome of the word amazing.

Her life motto is “Use Your Voice.” We are given a powerful voice that WILL enable others to achieve, and the voice she has is no quieter because of AMC.

I asked Nichola a few questions about her life with AMC. Here’s what she has to say:

ME: Does anyone in your family have it?  Did your mom know that you had a disability before you were born?

NICHOLA:  Mum never knew I had physical issues, but she did notice that I was much less active in utero, and she just had a ‘feeling’ something wasn’t right. I was born by emergency c-section 8 weeks premature, and fought for my life. We obviously know how that one turned out. I still have my very first casts, they are tiny!!! The doctors and my earliest orthopedic surgeon told mum and dad not to have any more kids, as I am the eldest, but I have one younger brother and two younger sisters who are all fine.

ME: What is one thing you have always been envious to do?  

NICHOLA: One thing I have always been envious of is being able to do my hair. Hands down this is the biggest thing I think. I’ve always had boring ponytails, and they are very difficult to do at the best of times. I would LOVE to be able to put my hair up wherever and whenever I wanted without lying backwards!! I’m always captivated by others when they do this.

ME: What is one of your fears? 

NICHOLA: One of my fears is if we were ever in a war and I wouldn’t be able to run away, or I’d be a burden to others. This terrifies me.

ME: Do you want to marry a person with or without a disability?

NICHOLA: My ex-husband was ‘normal’. He was awesome, helped me out heaps and was very patient. He got very good at doing my hair. Over the years I learned to let him help me more. Admitting we need help is very difficult. We are now divorced and I live with my border, Chloe, my dog and 3 cats.

ME: Do people often ask about your disability - how do you explain it?

NICHOLA: 99% of people presume I have rheumatoid arthritis, and they ask me about it. I rarely correct people now. People can tell there is something wrong with my feet/legs (I don’t always use crutches), and I answer questions. The most common one is if it is painful. I tell people that my feet do get sore. I don’t like talking about it too much as it draws attention to me. I just get on with it despite the issues.

ME: Are the any special items that you use?

NICHOLA:  I have a Tom, a Dick, and a Harry. They are my shower and toilet chair and my rails outside. My crutches are called Betty and Bertha. I hated having to use all these things, so I figured if I gave them a personality it might make me feel better about it.

ME: If you could be granted one wish and could be "normal" would you do it?

NICHOLA: Granted one wish??? Be pain free. Hands down. The pain I get is awful, it radiates, the nerves then get confused and cause headaches, pelvic pain and back pain. I take heavy duty pain relief just to walk to the toilet in the morning. I am under a pain specialist. My feet swell enormously, go bright purple, and water, air, socks, bed sheets, etc hurt more than anything.

One frustration, is even medical professionals get it wrong, when it is written all over my medical notes.  If they are not sure, all they have to do is ask!

945 days

Since my son was born we have been at the mercy of others.

Losing my independence was one of the hardest parts of becoming a mom. It's enough to make me in no rush to have more kids. I know everyone loses freedom when our children are born but for me it was different.

I couldn't go to a single place alone with him. No quick runs to Target to get out of the house. Not even a simple walk around the block on a sunny day. If he had a doctor appointment both me and my husband had to take off work.

When we were alone, we stayed in the house where I could keep him safe.

As an infant, I couldn't carry him or the heavy carseat. As he grew older I couldn't carry him and struggled with the buttons to open the straps on his booster carseat.

He is now more self sufficient but I still worry about him in parking lots and crowds. He's only 2 1/2 and his ability to follow instructions waivers.

Lately he has started climbing in his seat by himself. I have also become an expert at getting him to cooperate with me - making simple tasks seem fun.

I thought this Father's Day would be a good time to try out our first taste of independence.

Following our family traditions, my husband left at the crack of dawn to golf with his dad. Me and Oliver stayed home and ate breakfast, watched cartoons and got ready to go visit my dad for awhile.

The moment had arrived.

Our things were packed, the car was loaded and I yelled to Oliver, let's go visit grandma and grandpa.

He let out a whoop and raced to the door. I held it open and he followed me to the car. I opened the car door and he climbed in. I buckled him up and grinned.

The past two years we all started our Father's Day hours before things started and left the house insanely early when my husband left for golfing - I had no choice because I needed help getting him in the car.

It felt so good. We could follow our own schedule for the first time.

As we backed out of the driveway I smiled at Oliver and said, we did it buddy, just you and me. I let out a celebratory YIPPEEEE and he echoed back at me.

After 945 days of always needing others, this was a moment I'll never forget.

13

My room was pink.  I loved my cat Whiskers more than anything. She knew me – when I was happy, sad, when my friends were mad at me. I told her my secrets before I went to bed.  She purred and snuggled close. I had her from age 3 to 18 and I like to think she stuck around just long enough to see me off to college. 

I had a New Kids on the Block pillowcase. I was in love with Jonathan Brandis (RIP adorable boy). I’d wake in the morning, scoot down the big staircase to eat breakfast. My mom often helped me with my socks. I’d eat breakfast and she’d give me a ponytail.

We’d finish and my brother and I would head down the winding driveway to wait for the bus. I’d head out a little before him since his strong legs were faster.

The bus would come to screeching stop and the doors opened. My brother held my crutches as I climbed up and I held on to the seat tops as I walked to my seat. He handed me my crutches and made his way to the back, where the older kids sat.  I always felt bad that he had to help me. I assumed he secretly hated it but our parents made him do it or guilt because his body was perfect. Heck, maybe both.

I was 13. It is a terrible age but even worse when you have a disability.  Hmmm…where to begin…. 

School Dances
I can't dance and hated watching my friends do the things I couldn't.  They’d kick off their shoes and dance around in cute dresses. Sitting off to side seemed lame but standing in the center of dancing girls was not any better.  Those were the days I was crushingly aware that I was “different” - it sucked and life was not fair.

Cute Boys
I liked them but none liked me. That is not the age for taking risks. I’m sure even if one did like me he would have never told me – what if others teased him? I was afraid I would never have a boyfriend. Looking back now, 13 is young and who needs boys anyways! {wink} But at that age I felt old. I was missing out on the things other girls were experiencing.  I wanted a note slipped in my locker too. 

What Will I Be
I couldn't do a job that required lots of standing or a steady strong hand.  That ruled out being a doctor (oh yeah and the fact I took my math/statistics classes over a few times in college). I thought being a teacher sounded fun but I was scared of kids picking on me. Even worse the parents not thinking I would be good enough. I can remember thoughts of how kids might pick on they way I write when using the chalkboard or how every year I would have to explain my disability to a fresh set of kids and teachers. There was no way I was going to subject myself to a lifetime of that.  

School Lunches and Mean Girls 
The hot lunch lines at school and using crutches are not friends. I hated asking people to carry my tray. To top it off, in Junior High and High School it seems like us girls were always in "fights" so there were days when my friends were mad at me and I might not have help. It was easier to bring stuff from home. 

Envy
Dreams of wanting to run, jump, twirl, climb and feel really strong. I would see girls in track. Cheerleaders at football games. My brother climbing a tree. Little girls twirling in a cute dress. I wanted to know what strong legs feel like. That dream hasn't changed. 

With all that said, I’ve learned something over the last 30-something years. It’s not all bad.  Maybe we are the lucky ones? 

I like to think being born with a disability makes us amazing.

In the end it sets us apart and even though if you are anything like me - you would kill to just blend in – it’s a good thing. Our perspective is beyond the average girl, we can give an hour long presentation on using crutches in all terrains, eating with our feet, opening doors in a wheelchair, using a stick to type, we know pain and we are quick to notice when people hold their bodies funny and are secretly in pain/uncomfortable, we know how to guide conversations and turn awkward back to okay and we know how to ask for help.  

Our compassion is huge and our determination is out of this world. Some will call it stubborn. We will see it as survival.  We will be more than a pretty face and some day boys will want to know us. Our personalities and substance will matter. Employers will be proud to have us because we aren’t lazy and we care.  Mean girls grow up too. They will end up being some of our best friends. Our kids will have mommies with magical walking sticks or hot wheels. They will grow up seeing determination and zest and I pray that they soak it in too.

So for those of you out there who wonder, wish and worry about what’s to come – that is what I’ve discovered in my short time here in this world. And I like to think the best is yet to come.

chick fight!

Today was one of those days. When you just want to go back to bed. But you can't - you have to suck it up and go about your day.

My headband totally gave me a headache. It seemed cute at home and really lame in the bathroom at work. Not worthy of a headache so I took that baby off and dealt with weird smooshed hair.

The stitching on the elastic band of my cute flats broke. So before I left work I did what any normal person would do, I grabbed the stapler off my desk and did my own quick "fix" to get me home.  Sigh.

I got to daycare and planned to take the handicapped spot in hopes of avoiding extra steps and having staples stab my foot. Tuesday is just too early in the week to deal with blood.

Parked in the handicapped spot was a seemingly healthy, young woman sporting leggings, tall boots and taking her sweet time buckling in her child. It was obvious that she was parked there out of sheer laziness. I instantly hated her.

Maybe it was my headache. Or the fact I had to go to the bathroom insanely bad. Perhaps my despair over my shoe. Fear of the staples puncturing my flesh.

I like to think it was a combo of it all. I wanted to turn into Hulk or a WWE wrestler. I had crazy urges of running up to her and knocking her down, pulling her hair and calling her lazy. I'd dent in her car door with my super hero strength and run away and hide in my car.

Rest easy, none of this happened. I parked on the street and walked.

I must confess I took a picture of her car. Made me feel better, like I was going to send it to the police department and they'd stop over at her house and school her on how to be a good person...

Looking forward to a fresh start tomorrow. As for tonight, I'm sending myself to bed.

25 rules for moms with sons (tissues required)

My son is rapidly changing. Soaking up the world around him. Acting out what his friends from the Fresh Beat Band are doing on TV and warming my heart with Itsy Bitsy Spider remixes and Peanut Butter Jelly Time dance-offs. He has his “I’m two” moments and I wonder how we will survive the next few years but one good week makes me forget.

Right now he thinks we are awesome. He adores his dad with a love that I can’t even put into words. As I watch them play I find myself longing to freeze time. I love our nights snuggled on the couch. Knowing he has not experienced the frustration of being hurt or backstabbed by others. He is safe from the age of peer pressure and temptations. He doesn’t know of cliques, bullies and feeling uncool. All the stuff you so desperately want to protect them from forever. I know that’s impossible but I still hate to think of the day something happens that makes feels sad, rejected and/or heartbroken.  

I read the 25 rules for mothers with sons online awhile ago and loved it. I tried to tuck a few key points in my heart so I never forget. In case they haven’t yet crossed your path, I thought I’d share. 

25 Rules for Moms With Sons

1. Teach him the words for how he feels.
Your son will scream out of frustration and hide out of embarrassment.  He'll cry from fear and bite out of excitement.  Let his body move by the emotion, but also explain to him what the emotion is and the appropriate response to that emotion for future reference.  Point out other people who are feeling the same thing and compare how they are showing that emotion.  Talk him through your emotions so that someday when he is grown, he will know the difference between angry and embarrassed; between disappointment and grief.

2. Be a cheerleader for his life
There is no doubt that you are the loudest person in the stands at his t-ball games.  There is no doubt that he will tell you to "stop, mom" when you sing along to his garage band's lyrics.  There is no doubt that he will get red-faced when you show his prom date his pictures from boy scouts.  There is no doubt that he is not telling his prom date about your blog where you've been bragging about his life from his first time on the potty to the citizenship award he won in ninth grade.  He will tell you to stop.  He will say he's embarrassed.  But he will know that there is at least one person that is always rooting for him.

3. Teach him how to do laundry
..and load the dishwasher, and iron a shirt.  He may not always choose to do it.  He may not ever have to do it.  But someday his wife will thank you.

4. Read to him and read with him.
Emilie Buchwald said, "Children become readers on the laps of their parents."  Offer your son the opportunity to learn new things, believe in pretend places, and imagine bigger possibilities through books.  Let him see you reading...reading the paper, reading novels, reading magazine articles.  Help him understand that writing words down is a way to be present forever.  Writers are the transcribers of history and memories.  They keep a record of how we lived at that time; what we thought was interesting; how we spoke to each other; what was important.  And Readers help preserve and pass along those memories.

5. Encourage him to dance.
Dance, rhythm, and music are cultural universals.  No matter where you go, no matter who you meet - they have some form of the three.  It doesn't have to be good.  Just encourage your son that when he feels it, it's perfectly fine to go ahead and bust a move. 

6. Make sure he has examples of good men who are powerful because of their brains, their determination, and their integrity.
The examples of men with big muscles and a uniform (like Batman and LaMarr Woodley) will surround your son from birth.  But make sure he also knows about men who kick a$s because of their brains (Albert Einstein), and their pen (Mark Twain), and their words (Dr. Martin Luther King Jr.), and their determination (Team Hoyt), and their ideas (The Wright Brothers), and their integrity (Officer Frank Shankwitz), and fearlessness (Neil Armstrong), and their ability to keep their mouths closed when everyone else is screaming (Jackie Robinson).

7. Make sure he has examples of women who are beautiful because of their brains, their determination, and their integrity
The examples of traditionally beautiful women (like Daphne Blake, Princess Jasmine, and Britney Spears) will surround your son from birth.  But make sure he knows about women who are beautiful from the inside out because of their brains (Madame Marie Curie), and their pen (Harper Lee), and their words (Eleanor Roosevelt), and their determination (Anne Sullivan), and their ideas (Oprah Winfrey), and their integrity (Miep Gies), and fearlessness (Ameila Earhart), and their ability to open their mouths and take a stand when everyone else is silent (Aung San Suu Kyi).

8. Be an example of a beautiful woman with brains, determination, and integrity.
You already are all of those things.  If you ever fear that you are somehow incapable of doing anything - remember this:  If you have done any of the following:  a) grew life b) impossibly and inconceivably got it out of your body c) taken care of a newborn d) made a pain go away with a kiss e) taught someone to read f) taught a toddler to eat with a utensil g) cleaned up diarrhea without gagging h) loved a child enough to be willing to give your life for them (regardless if they are your own) or i) found a way to be strong when that child is suffering...you are a superhero.  do not doubt yourself for one second.  Seriously.

9. Teach him to have manners
because its nice.  and it will make the world a little better of a place.

10. Give him something to believe in
Because someday he will be afraid, or nervous, or heartbroken, or lost, or just need you, and you won't be able to be there.  Give him something to turn to when it feels like he is alone, so that he knows that he will never be alone; never, never, never.

11. Teach him that there are times when you need to be gentle
like with babies, and flowers, and animals, and other people's feelings.

12. Let him ruin his clothes
Resolve to be cool about dirty and ruined clothes.  You'll be fighting a losing battle if you get upset every time he ruins another piece of clothing. Don't waste your energy being angry about something inevitable.  Boys tend to learn by destroying, jumping, spilling, falling, and making impossible messes.  Dirty, ruined clothes are just par for the course.

13. Learn how to throw a football
or how to use a hockey stick, or read music, or draw panda bears (or in my case alpacas), or the names of different train engines, or learn to speak Elvish, or recognize the difference between Gryffindor and Slytherin, or the lyrics to his favorite song.  Be in his life, not as an observer but as an active participant.

14. Go outside with him
turn off the television, unplug the video games, put your cellphone on the charger, even put your camera away.  Just go outside and follow him around.  Watch his face, explore his world, and let him ask questions. It's like magic.

15. Let him lose
Losing sucks.  Everybody isn't always a winner.  Even if you want to say, "You're a winner because you tried," don't.  He doesn't feel like a winner, he feels sad and crappy and disappointed.  And that's a good thing, because sometimes life also sucks, no matter how hard (as moms) we try to make it not suck for our kids. This practice will do him good later when he loses again (and again, and again, and again, and again.....)  Instead make sure he understands that - sometimes you win - sometimes you lose.  But that doesn't mean you ever give up.

16. Give him opportunities to help others
There is a big difference in giving someone the opportunity to help and forcing someone to help.  Giving the opportunity lights a flame in the heart and once the help is done the flame shines brighter and asks for more opportunities.  Be an example of helping others in your own actions and the way your family helps each other and helps others together. 

17. Remind him that practice makes perfect.
This doesn't just apply to performance-based activities (like sports and music) but also applies to everything in life.  You become a better writer by writing.  You become a better listener by listening.  You become better speaker by speaking.  Show your son this when he is just young enough to understand (that means from birth, folks - they are making sense of the world as soon as they arrive), practice trick-or-treating at your own front door before the real thing.  Practice how you will walk through airport security before a trip.  Practice how you order your own food from the fast food cashier.  Practice, practice, practice.

18. Answer him when he asks, "Why?"
Answer him, or search for the answer together.  Show him the places to look for the answers (like his dad, or grandparents, or his aunts/uncles, or his books, or valid internet searches).  Pose the question to him so he can begin thinking about answers himself.  Someday, when he needs to ask questions he's too embarrassed to ask you - he'll know where to go to find the right answers.

19. Always carry band-aids and wipes on you.
especially the wipes.

20. Let his dad teach him how to do things
...without interrupting about how to do it the 'right way.'  If you let his dad show and teach and discover with your son while he is growing up, some day down the road (after a short period of your son believing his dad knows nothing), he will come to the realization that his dad knows everything.  You will always be his mother, but in his grown-up man heart and mind, his dad will know the answers.  And this will be how, when your son is too busy with life to call and chat with his mom,  you will stay connected to what is happening in his life.  Because he will call his dad for answers, and his dad will secretly come and ask you.

21. Give him something to release his energy
drums, a pen, a punching bag, wide open space, water, a dog.  Give him something to go crazy with - or he will use your stuff.  and then you'll be sorry.

22. Build him forts
Forts have the ability to make everyday normal stuff into magic.  Throw the couch cushions, a couple blankets, and some clothespins and you can transform your living room into the cave of wonders.  For the rest of his life, he'll be grateful to know that everyday normal stuff has the potential to be magical.

23. Take him to new places
Because it will make his brain and his heart open up wider, and the ideas and questions and memories will rush in.

24. Kiss him
Any mother of sons will tell you that little boys are so loving and sweet.  They can be harsh and wild and destructive during most of the day.  But there are these moments when they are so kind and sensitive and tender.  So much so that it can cause you to look around at the inward, reserved grown men in your life and think, 'what happens in between that made you lose that?'  Let's try to stop the cycle by kissing them when they're loving and kissing them even more when they're wild.  Kissing them when they're 2 months and kissing them when they're 16 years old.  You're the mom - you can go ahead and kiss him no matter how big he gets - and make sure he knows it.   p.s. (this one is just as important for dad's too). 

25. Be home base
You are home to him.  When he learns to walk, he will wobble a few feet away from you and then come back, then wobble away a little farther and then come back.  When he tries something new, he will look for your proud smile.  When he learns to read, he will repeat the same book to you twenty times in a row, because you're the only one who will listen that many times.  When he plays his sport, he will search for your face in the stands.  When he is sick, he will call you.  When he really messes up, he will call you.  When he is grown and strong and tough and big and he feels like crying, he will come to you; because a man can cry in front of his mother without feeling self-conscious.  Even when he grows up and has a new woman in his life and gets a new home, you are still his mother; home base, the ever constant, like the sun.  Know that in your heart and everything else will fall into place.

falling apart

In my last post I mentioned my new ice tips for my crutches. They are cool and work well, however once you reach safe terrain you have to flip them up so you don’t trash the floor or slip on the metal spikes.  I didn’t think it would be a big deal but I have found that it attracts attention. Every person that crosses my path eyeballs the contraption hanging off my crutches.

I love gadgets so on one hand – it is a cool topic of conversation. However, I am also the girl trying to blend in and avoid being asked how I broke my leg all day long.  So my fancy tips backfired.

In addition to the ice tips, I ordered the Tornado Tips which are normal crutch tips but last longer, have better traction and gel to soften the blow of each step on my arms. They rock but have a fat tip which sets my crutches higher.  As you may remember, I fill my crutches with super glue to make them silent, so this also backfired.

My new shoes (that happen to be super flat) were screaming to be worn and combined with my new extra tall crutches was pure badness.

It seemed fine at first. Heck, my shoes were cute. That’s what’s important, right.  Well, then my shoulder started hurting.  Oh and my arm felt cold. It was like I pinched a nerve and messed up my muscles.  I ignored it for a few days and then I couldn’t take it anymore. I would sit at my desk trying to focus on work but all I could think about was my cold arm and knotted up shoulder.  It was freaking me out.

My workplace offers cool perks which I totally appreciate. We have an onsite massage therapist in our health services clinic.  Before I could waste another second I called them up and made an appointment.   As the massage therapist worked my shoulder, I could feel the tight ball of muscles moving back and forth, she made a comment that they were messed up.  Yep, I was well aware!  

The massage worked wonders and by the next day my shoulder was fine and my arm felt warm.  Apparently cool gadgets and cute shoes come with a price. I am pretty sure that means for now I need to go shopping for some shoes with bigger heels {wink}.  

 

things that rock

I have started this new year being a pretty terrible blogger.  Life here has been consumed with returning to work after taking a bunch of time off for the holidays, freelance work at night and writing a story for Metroparent magazine that highlighted some amazing parents with disabilities from my community. I totally loved every second of interviewing and writing that piece, I'll share more once it's published. 

My year has also started off with a few gadgets and some new shoes in the mix. I'm excited to share them, maybe these things could make your life a bit brighter too... 

HANDS-FREE DRYER

Okay, go ahead and giggle. I totally dig this thing and even more I love that my husband bought it for me for Christmas.  My right hand is not as strong as my left. So holding a hair dryer in one hand and a brush in the other is impossible.  Problem solved. Me likes.

SHOE BLISS

In past posts I have mentioned my angst with clubfoot and finding shoes that work. I love a ton of the flats that are in style but couldn't keep them on my feet. It inspired me to find a shoe tailor and add straps to make them work.  

I'm now a shoe monster, I just can't have enough. Here are a few of my new friends. Welcome home sweet shoes, welcome home. My closet is happy to meet you!

AND SHE'S DOWN...

I live in Wisconsin. Normally our winter is filled with snow, ice and slushy mess - this year has been a strange spring-like treat. We finally got our first snow this past week and I had the chance to test out my new Thomas Fetterman ice tips.

Despite the obvious reasons I should hate winter since I use crutches, I really don't. I love winter clothes and jackets a lot and so I like to think it makes it all worth it. 

My mother-in-law bought me these new crutch tip covers for Christmas. They are amazing and work really well. I hope to find myself sprawled one less time on the sidewalk this winter and they will be worth every penny.

These three things make me smile. What kind of things make your life twinkle? 

 

 

 

 

Helloooo 2012, nice to meet you

I love starting a new year. A fresh slate. Renewed zest to focus on the things you want to improve.  Declared goals to become a step closer to that person you want to be.  It makes me a little giddy.

Since I have a boy sleeping in his crib slurping his Nuk and clutching Batman - I know that sparkly tops from Express and fun parties are not part of this season of my life. It’s okay, one kiss from his sweet face and the feel of him on my lap couldn’t even compare. I’m content at home with my hubby, laptop, pizza and watching the Rockin’ in the New Year shows. Since I am 14 at heart and love Justin Bieber and Taylor Swift, NYE programming is right up my alley. Bring it on.

This past year was amazing. I dedicated it to taking care of myself. (See Morning Blend post).  As I took different steps and gambled with new ideas, life simply happened. I believe we are all here for a reason but we need to take some risks to end up where we are meant to be. Last year at this time I had never thought I’d share way too much of my life on the web, end up on TV telling my story, make new friends who share my challenges and wrap up some personal things that I hated – my teeth were shifting (so I got Invisaline braces) and I had crazy ear issues when I would fly (so I had a sinus surgery, tubes in ear and Adenoidectomy).  So again, it took effort and risk but the end result is goodness.

I’m still toying with my 2012 resolution.  I have 2 hours and 29 minutes to decide. No sweat.

May you have an incredible next year filled with new starts, happy memories and be drenched in love.  

What resolutions do you have brewing?

P.S Anyone else as excited as me for the return of the Bachelor?  Eeeeek I love that show. Go Ben!

 

magical blue sticker

I used to be pretty choosy about when I would use my Handicapped Sticker. I saved it for Brewers games and events that would require a ton of walking without it.

I like to think I’m too cool to use it. That’s for the people who need special help, so I save it for them. Yep, go ahead and roll your eyes at me.  

I have started using it more and more during the winter months, every step closer to the door cuts down on my chances of slipping on snow and ice and being more intimate with the pavement than I really desire.

My sticker expires February 2012.  

My husband likes to tease me every time the expiration dates come up.  We like to do a count on the number of days until I’m no longer disabled.  Two months left people, two months.

It really is silly. I have to go make a special doctor appointment and have them sign a form saying “yep, sure enough this girl still has Arthrogryposis”…it’s almost insulting.

Granted I see people all the time with them that make me wonder…I try not to judge but they don’t look all that disabled to me.  So I am grateful they do have some regulations behind this magical sticker.

Am I missing something to this whole process - is there a sticker that doesn’t expire? Have any good handicap parking stories to share? I have a few, one especially that makes me giggle but I’ll save that for another day.  I want to hear yours!