LTYM Milwaukee

Yesterday was a crazy day. Oliver likes to say I was at my wedding. Not sure where he got that but I kinda love it.

It was a big day for me, so he was on the right track I guess...

I stood in front of a bunch of strangers seated along with 22 of my favorite family members and friends (you know who you are...xoxo) and read a letter I wrote to Oliver.

It carried a similar message to the stories I share on my blog. But hiding behind my laptop is much safer than on a stage, with a spotlight on my face.

The experience was an honor, pushed me to new limits and in the end I loved every second.

I totally encourage you to audition for the 2014 LTYM in your city.

Below is the piece I read. The YouTube video should be up soon.

My Life as a Disabled Mommy
In my life as Oliver's mom, I feel like I can't keep up. In my journey as a disabled mom, there are days when I long to skip ahead a few years. But despite the challenges and occasional tears, I am forever blessed.

Dear Oliver:
Yep, I use crutches to walk. This may sound weird, but I often forget. When I dream, I never have them. My body is strong. It doesn't cross my mind until someone on the street or in an elevator asks "How'd you break your leg?"

Looking back, my life before you was pretty easy.

It was on St. Patrick's Day, when I peed on the stick and saw the results. I was excited, I was scared. I was mad. There were still things I wanted to do. I mean I felt a crazy love for you, but guilt, too – because I wasn't 100 percent excited that you would be camping out in my belly for nine months.

Throughout my life, I became comfortable with my disability, Formy life story, it made sense. But that didn't mean that I didn't desperately want you to be normal.

Months passed and my belly grew. I would sit in your bedroom and pray to the heavens above that you would be born with a strong body. Hands that could bend straight. Legs strong and sturdy enough to run and jump and dance their way through life. I wanted you to be able to flex your ankles if you wanted to, and give high fives when life called for it. And I wanted you to know how insanely lucky you are to go through life without physical limitations.

It's taken me a whole life to learn how to find a way. I mastered things in my time. Have you was scary. You were little, so small,helpless, and needed me.

We figured things out together. When I was slow changing your diaper and you screamed, I would just cry along with you. When we were home alone without daddy and I wanted to go to another room, I'd stick you in the stroller and take you along. I asked those who cared for you to not stand and rock you. I was afraid that you would grow used to that and I wouldn't be able to soothe my baby.

That would break my heart.

During your baby months, we called you "Angel Baby." You were so easy, I like to think you knew mommy was different and wanted to help her. But as the toddler smarts started to brew in, things changed. You became opinionated. And you noticed things.

Your dad was the one to carry you and give airplane rides. He was the one to scoop you up when you got hurt and the one with the strong arms that carried you to the car after a long day at day care. No one held a candle to "Dada."

Some things you never think about, until they happen. One morning I went to get you out of your crib. You shook your head and crawled to the far corner – away from me – and said over and over "no, no, no. Dada."

It made me so sad.

I carried you for nine months.
I prayed over you in my belly for 270 days.
I devoted a year to nursing you.
I tell you every day that you are perfect.
I was the one who shed tears on your first day of day care.

I am your mommy!!
It's not fair.

But you're noticing things. The other morning I was fixing your hair and you grabbed my hand and just stared at it. You then poked my wrist, where it stays bent and said, "mama."

Then you smiled at me.
I almost cried.

That night, I went to give you a bath and you leaned against me and let me fight my way down the row of tiny little buttons on your shirt. I was halfway down when you looked at me with your big eyes and said, "mama stuck." You know more than we think.

And you keep learning.
You know you can out run me.
You know I can't carry you away when you act up.
You run to the other side of the car now, wanting me to chase you.

When you've had enough of my kisses, you brush me away, saying "no no no."

But then we have moments.
Nights like this.

We were all home after a long day at work, the weather was perfect. The leaves were floating down from the trees and filled our street with color.
You started walking down the sidewalk and grabbed dada's hand. Then you held out your hand to me, looked at me with big blue eyes, and invited me join you.

But I can't walk and hold your hand like that. I can't hold my crutches and your hand, too.

In that moment, my heart shattered.

I would have given everything to take your hand and walk with you. I want so desperately for you to understand why.

A few days later, as I got into an elevator, a man holding the door open for me said, "Uh oh. That doesn't look happy."

That doesn't look happy.

In the end, how we feel is up to us.
Yes, life with a weak body stinks.
Crutches are annoying.
I can't do all the things I want to do.
I hate asking for help.

But I also have learned this… we are all given a hand of cards in life. How we choose to play our hand is up to us. You can dwell on the bad cards or embrace your pair of eights.

And I hope that having me as your mommy will make you a better person.

So love yourself, Oliver. Be your own biggest cheerleader. You can do anything. Take small steps and it pieces together, in the right time. You just have to get off that chair. Laugh at yourself. Never lose that twinkle in your eye.

And know your mama is not done kissing you yet.

Feeling Green...in the the Green Room

The world can be mean. 

With that said, I make a point to not tear others down in my blog…unless you are a handicapped parking spot violator…then it is my life mission to embarrass you and make you wish your legs didn’t work. Being lazy isn’t cute. Harsh but true.

Anyway, back to my point. I am breaking my rule. In the spirit of a good story and a new perspective, I think it’s worth it..?

Last week I was on our local show The Morning Blend with another gal who has a disability. Our segment had a Mother’s Day theme and offered some insight on what it’s like to be a mom who uses crutches or a chair to get around.  I liked to think it was an inspirational piece on motherhood, embracing small victories and living the life you were given to its fullest. I was pumped for the show and to finally meet Becky.

We were sitting in the Green Room watching the show begin on the TV screen. Sipping coffee, having our first encounter small talk and joking about how we wore black to trick the viewers that we were skinny.

Another guest appeared in the doorway.  For a second all I saw was bright pink.  It was Miss WI. She came strutting in with her clear bedazzled crown case in hand, silver sash and hair/make up posse. I’m pretty sure a faint OMG or even a WTH slipped out of my mouth.   

I sat back, drank my coffee and soaked her in.  She insisted on a tall chair so she could get done up in front of the Green Room lights and mirror.  They fussed over her and put about 50 coats of mascara on while she talked about botox, her sister’s bad lip job and the journey to being beautiful.

She pretty much pretended we were invisible and perched on the chair gazing in the mirror and talking to her crew.  Somewhere in all the chatter I heard her mention wanting to inspire girls.

I wanted to barf.  Her sheer presence tainted the good mojo in our room. I hated that I let her get under my skin.

We started the morning excited about how we had a view that could change and inspire others to embrace the skin they were in and be thankful for things they might rightfully take for granted.  Under the twinkle and light reflecting off her crown, lip gloss and sash our story began to seem lame. Who were we kidding? It was like I was transported back to middle school and needed out of that room fast.

No worries. I found myself before our segment was up.

Inspiration.

I was sitting next to a lady who oozed with determination and a good heart. She raised two kids from a wheelchair. Trained her body to not go to the bathroom at work because there is no assistance.  Imagine the coffee we drank, the pre-TV nerves and not being able to go…

She mastered life, college, a family and has a classroom of her own “kids” that occupy her day when she puts on her teacher hat.  

I thought about people who try harder when things are not easy. Who pave a new course when the traditional path doesn’t work.  The detour ends up being filled with unexpected victories and good people.  Yeah, it may take longer and you are almost out of gas by the time you get there but the stories and adventure are so worth it.  

So long story short - the ironic placement was eye opening.  I’m guessing it was missed by everyone except two girls who would eagerly cash in any good skin, full lips or beauty for the chance to walk unaided, carry babies on our hips, push a shopping cart while talking on our phones and dance through life.  

So in a weird way I was inspired by her. I felt really lucky to have that perspective.

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}

Listen to Your Mother

Some of you might know that I recently auditioned for a part in this year’s Listen to Your Mother production.

 It is a national event that is held in cities across the U.S. during the month of May in celebration of Mother’s Day.  The event features a collection of live readings by local writers who publish online.     

The event excited me. I felt like my journey as a mom might be a good fit.  Having a disability and raising a toddler comes with a unique perspective.

I also am not a huge fan of public speaking.  I like to think we only fear the things we haven’t experienced much – so I am trying to do it more often.  I’m not going to go through life being afraid, I’m only hurting myself.  

I stayed up crazy late one night crafting my message.  My monologue had to be five minutes which was really tough, I started with like 15 minutes.  I read it to myself throughout the weekend, whittled it down.  Certain parts always choked me up. I was afraid I’d end up crying at my audition.

On Sunday I went to the audition site and read my piece.  When I finished and looked up the producer and director were sitting there teary-eyed and silent.  I knew the story touched me because it was my life but I never expected that reaction from them.

I hide behind my laptop shooting out these posts. I never see my reader’s response, most of the time I figure it’s just my mom reading them {Heyyy Mom}.

So reading in person was a very surreal experience.  

Well…

I am really excited to share that I have been chosen to be part of the 2013 Listen to Your Mother cast for Milwaukee.  In addition to that, I will be part of a Morning Blend {I love you Molly Fay} segment in the end of April featuring a few local moms with disabilities.  It is amazing. I’m really thankful for the opportunities and crazy excited.  I hope you can tune in to the show or attend the Listen to Your Mother production May 5th. 

Amazing AMCers: Meet Hajnalka and her baby bump...

I love getting the chance to know other AMCers. There is something really priceless about finding another girl who like myself watches in awe at the girl sitting in front of her in class, on the bus, in a meeting – whip her hair into a ponytail. We are blown away at the ease and hope they know how insanely lucky they are… oh to have strong hands.

Through the AMC ladies group on Facebook, I found other AMCers that long for strong leg muscles, hunt for products to make life easier and do weird things around the house to survive. I’m actually quite normal, there’s a gang of ladies around the world doing things and seeing the world similar to  me. It's awesome.

One of the scariest things to face is the day you become pregnant. AMC is something we can deal with and figure out as we grow older but things change when you throw a baby into the mix... And even though we love ourselves and see the rewards of growing up with a disability, we still pray with everything in us that our sweet baby can grow up healthy, strong and normal.

Meet Hajnalka.

She is 26 years old, lives in Hungry and having her first baby! Her hands and feet are affected by AMC but she is able to walk unaided.

When asking Hajnalka about this new chapter in her life, this is what she had to say:

Week 12: I am feeling fear, excitement and joy. He/She is now being 64mm. The doctors say, good hands, good feet. I've seen this. But I'm a little scared.

Week 16: I am scared  - I do not want the baby to get sick. (AMC) We had two extra ultrasounds. I calm down a bit. The doctors say the baby is healthy. Don't worry, mom... In two weeks I go to genetic counseling. There will also be high-resolution ultrasound examination.  My husband and I are very happy together. We are glad that our daughter will be ok.

My stomach is getting large. It is not difficult to walk but I'm afraid that the 9th months will be difficult. But it's worth the suffering.

I think about a lot:
How well I'll do with diapers
How am I going to feed the baby

... but I'm very happy! Fortunately, there is my wonderful husband who will be there to help.

There are lots of tricks I learned throughout the baby years with my son.  I’m sure many of you have them too. Please leave any tisp on this page for Hajnalka and the other AMC mommies that might be out there reading.

The one thing I learned is that our babies come to us as a blank page. Having a mom who uses crutches, uses her feet to write, gets around in a wheelchair is all they know. It’s not weird to them, that’s just mom. Other kids always want to play with my crutches, my son never even touches them unless he is being a helper and bringing them to me. I never asked him to not mess with them, he just figured out those are mommy’s magical walking sticks and it’s hands-off.

Every month brings relief as they get more self-sufficient and the challenge of a new stage to figure out. You will probably cry together a lot in the beginning but in the end I think our kids will be more sensitive and thoughtful.  They will see people for what is really important, their hearts.

Good luck Hajnalka, I’m so excited for you!

Here are some of my blog posts on life as an AMC mom. I hope they help.

Metroparent Article: My Life as a Disabled Parent
OMG we're pregnant
no...no...no...DADA
Needing Others
Toddler Trials
25 Rules for Moms with Sons
Buttons

Chris P Bacon

I am in love. It comes with some guilt.

I cringe at the thought of being treated differently for having a disability.

Here I sit doing the very thing I hate...but look at that face! Look at that nose!

Have you heard of Chris P Bacon?  

He is crazy cute and I like to think a determined fighter. He is hungry, he wants to play, he's dying to go places. All he wants is a fair chance at this game of life.

We tend to root for the underdog, err pig, in life...wanting them to shine. Well, my heart thumps for this chunky little porker. I want him to be able to get around and snack-it-up.

He was born without the use of his back legs.  However, some amazing people have used their talents and creativity to help him mosey around. It's brilliant and makes me smile.  

He has a Facebook page and a blog. Stop by and give him some love or just treat yourself to a good giggle.  I heart you Chris P Bacon. I'd love to kiss your nose. 

Weird Things...

I’m not sure if other AMCers feel this way but sometimes it is the normal people that make my life hard.  

I might do weird things like not screw the pickle jar lid on tight, make pill bottles no longer childproof, keep favorite cups and bowls at a level that I can reach in the cupboard even if the rest are in a different place, leave gas caps loose, park in a weird place to avoid slants that make the car door close when I am trying to get out, stab a hole in the chip bag to open since I can’t grip and pull it apart…. and the list goes on and on.

These quirks are actually quite strategic.  They are my methods of survival.

So with that said, when I reach for Nyquil and it’s screwed on tight or my favorite cup is up high - I get so annoyed. I know deep down it is not like the world is trying to mess with me.  My beloved friends and family are just doing what to them is normal.  Still it messes my mojo and suddenly it takes me twice as long to do something.

Tonight I was driving home in my husband’s car. His gas light came on and I stopped to fill it up. It was rainy, windy and January in Wisconsin. So basically it really sucked outside.  A cold that chilled you to the bone.  I fought with his gas cap for like 15 minutes.  Cursing the audacity of putting the cap on right. 

WHO DOES THAT?

Finally I gave in and asked the girl at the pump next to me for help.  She was like 16 and opened that sucker in like 2 seconds.  What a show off.  I’m sure it was because I loosened it up for her.  *wink*

Am I alone or does anyone else do things like this?

    

Moving Sidewalks

I spent the last 10 days in London for work.  I could write a small novel on the things I learned, saw and felt.  It was amazing.  For now I’m starting at the beginning.  The airport.

I have used moving sidewalks before but only with my husband. I’m usually more courageous when I’m with people that know my capabilities and wouldn’t encourage me to do anything crazy.

The Chicago and London Heathrow airports are massive.  Using the moving sidewalk is a major arm pit saver but also a touch scary.  Same as escalators, stepping on to a moving platform and aligning legs and crutches in sync without a free hand to hold on is intimidating.

My friend Neil gave me the gentle nudge to be brave.  He’s huge so I knew he could catch me before any major crash happened.   I knew the gist of how it felt getting on and off from attempts years ago.   So I stepped on, found my balance and the sidewalk carried us away.  

YES!

I understand they put breaks in them so people can get off but if you don’t need to it just means a lot of scary stops and starts.  After going on and off a bunch of times I started to get in the groove. Before leaving my country I became a moving sidewalk ninja!  Thanks Neil.  :)

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? 

Dear lady with the big SUV...


My day at work was long. We turned back the clocks – it’s dark and I was feeling cranky.  I pulled onto the street by daycare and saw your big gas guzzler parked in the handicapped spot. I parked on the street and walked past your car on my way in.

No handicapped sticker hanging from the mirror...

Just an oversized black purse spilling out on the passenger seat.  A purse no girl in a chair or using crutches would want to haul. No way.  I could have curled in a ball and climbed inside that thing.

I started to feel really mad.

After greeting my son and making our way back outside, there you were.  Strong legs.  Big boots.  Young and healthy.

Maybe your day sucked too.  Maybe you were feeling lazy or had to go to the bathroom really bad.  Perhaps you were conserving energy so you could Drop It Like It’s Hot and rock it Gangnam Style at the club this weekend.

I don’t know your story.

I do know that you quickly shut your door and wouldn’t look me in the eye.  So I knocked on your window.  I thought I should point out how you were illegally parked.  You played dumb so I felt inclined to point out the large handicapped sign about five feet from your face.  If I had guts I would have also pointed out that I confronted you on this same thing like 6 months ago.

You just shrugged and shut your door.

I walked away and was mad.  I went from mad to steaming.  On my way home it morphed into a wave of embarrassment over the reality that I just confronted a fellow mom at my son’s school.  This was quickly replaced with disgust.

Your laziness and lack of compassion for others leaves me speechless. You are teaching your son to break laws, bend rules and put his needs before others.  

It’s been three days and I’m still fuming.  So I’m writing you this letter.

Until we meet again {with you illegally parked},
Rachel

pillowcases in the sky

My flight was eventless - the walking around the airport portion is not really an issue - I actually prefer it. I want my Nike Fuel points. {wink}

The tricky part for me is how to get my suitcase from my car to check-in and then from baggage claim to my taxi. I know I could ask for help but it's totally on my bucket list to figure it out on my own. Even if I only do it once and then ask for help for the rest of my days.

I think I can...I think I can...I KNOW I can!

I'll test out the suitcase gadget soon and report back.

After boarding my plane which was open seating (that was new to me...) a man plopped down to my right. He was carrying his items in a new twist of a man purse....a pillow case!

A trendsetter? A terrorist?

I am the queen of over thinking, the nancy drew in me went into high alert. So I did the normal thing to do, ya know... Read all of his texts out of the corner of my eye as he juggled his collection of phones.

Not sure if his phone collection depleted his bag budget... However, he was harmless. I'm still alive. Life is good.

Luggage Hitch

I'm traveling next week.  I am super thankful to have an awesome colleague on my flight that is willing to help with my bag.  However, this is something I need to master so I can travel alone and still use a suitcase. It's on my bucket list.

In the past I'd cram everything into a huge duffel bag so I could sling it over my body. It works...but the bag ends up weighing almost as much as me and it is brutal.

I noticed this gadget on the website of my beloved crutch tip designer.  I am completely sold on his crutch accessories so I'm dying to know if this would work for me too. I'm going to add it to my "Christmas wish list" so I'll let you know how it works.

Anyone have any tips on what you do with hauling luggage when you are also maneuvering crutches or a chair? Have you ever tapped into the airport assistance? Was it a hassle?

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!

 

 

dreams

Oliver's teacher had a dream about my family the other night. We were all running down the sidewalk. She saw us and asked what we were doing. We shared how we wanted to get to Hart Park before dark. She said I was on crutches but running really fast.

I loved this - dreams are really interesting and can be so weird!

In my dreams I never use crutches. I do have dreams about my crutches, either I lost them and can't get up a hill or one of them is broken, but I'm never actually using them.

For those of you in chairs, with braces, crutches, etc...how do you physically appear in your dreams?

Even on a more "normal" basis, do you with glasses, wear them in your dreams?

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.