no…no…no..DADA!

I knew when we decided to have kids that it wouldn’t be easy.  It would mean depending on others, which I spent my whole life trying not to do.  It would be a daily reminder that I was different as I compared myself to other moms. I would have to take a backseat and watch my husband do the things I couldn’t. 

I had my whole life to learn how to find a way.  Mastering stairs. Fastening buttons. Learning to drive. Walking in snow. Not falling during the winter months on the wet linoleum floors. Carrying books to class in college.  Commuting on a city bus.

I mastered things in my time and if it took awhile it was okay. I was only responsible for myself.  So having a baby was scary. There was no time.  He was little, helpless and needed me.

When my son Oliver was born, we had no choice but to figure things out together.  When I was slow changing a diaper and he screamed, I would just cry with him.  When I was home alone with him and wanted to go to another room, I’d stick him in the stroller and take him along.  I asked those who cared for him while I was at work to not stand and rock him when he needed soothing. I was afraid that he would grow used to that and I would be unable to soothe my baby.

Overall, during his baby months Oliver earned the title “Angel Baby.”  I liked to think he knew his mommy was different and wanted to be helpful.  As the toddler smarts started to brew in him, I found things to change.  On one hand it was easier because he could walk and understand what I was saying.  However, he was also starting to develop opinions and preferences.

My husband was the one to carry Oliver, give airplane rides and crazy trips around the house in baskets. He was the one to scoop him up when he got hurt and the strong arms that carried him to the car after a long day at daycare.  I quickly knew that in this season of Oliver’s life no one could hold a candle to “dada.”

This was one of the things I never thought about until it happened. There were mornings when I would go to get Oliver out of his crib and he would shake his head, crawl to the far corner and say, “no, no, no..DADA!”

It made me sad at first. I carried you for 9 months and smothered you in prayer. I devoted 365 days to nursing. I tell you every day that you’re perfect. I cried like a baby when I sent you to daycare. I’m your mommy!!!

It wasn’t fair.  

Nothing has really changed but it doesn’t bother me as much anymore. Deep down I know that boys need their dad and Oliver scored an awesome one. He is lucky and should adore him.  So for now, during my tough mornings at the crib I take a deep breath and remind myself this a phase he will outgrow.  Someday I’ll be cool too.  

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behind elevator doors

Many of you who know me seemed surprised by the blog name. Maybe it’s because you quickly identified when we first met that I was not wearing a cast and saw signs of physical weakness and/or disfigured joints… Maybe it’s because you have known me forever and so the question just seems ridiculous…

I am happy to report I did actually break my leg when I was younger. I was in physical therapy on a three-wheeled bike with my feet strapped to the pedals. My older brother was along and we were having fun, him chasing me on his bike. I’m sure I was squealing and driving crazy which led to the big crash.

For as long as I can remember I have been asked if my leg is broken on a daily basis. The frequency of this greatly increases in the winter. I know it is partially due to the weather and the slick sidewalk banter that’s quick to come to mind. My personal theory is that with sweaters and jackets, my hands are more hidden and it must be harder to tell.

When meeting new people or “friends of a friend” I secretly hope that my friends gave them the heads up that I have a disability. It sounds kind of pathetic but it prevents them from asking what happened, having to explain my disability and the awkward silence that follows.

Honestly, how can one appropriately reply and save face, “Oh that’s cool…” doesn’t really cut it. Apologizing adds to the uncomfortable situation, they are sorry for asking and then I’m sorry that I made them feel bad. 

The elevator is the hot spot. They ask, I answer, things get awkward and those darn elevator doors can’t open fast enough.

How I answer is typically a case-by-case scenario depending on my mood, where I am and my own first impressions of the person asking. (yeah, yeah so I make assumptions too. *ducking head)

CURIOUS PERSON: “That doesn’t look like fun. How’d ya break your leg?” 
ME: politely smile and say, “oh it’s a long story”

***EPIC FAIL: Often they won’t get the hint and will push for more “come on tell me, I have time.”  It just gets weird but I still use this line. This is my default “I wish you’d leave me alone”  or “you’re a drunk person pestering me at a bar/festival/etc” reply.

CURIOUS PERSON: “uhh ohh now what did you do?” 
ME: “Nothing, I use them permanently” 
***awkwardness follows

If my husband is with me we also get random jokesters who say things like,  “oh boyyyy, was he being rough with you again?”  I like to think I have a pretty good sense of humor but there are days when you just don’t want to hear it.

My most effective response is typically, I was born with a disability and always use crutches to walk. I usually get an “oh, I m sorry”  response and I offer up my, “don’t be, I’m asked a lot and you didn’t know.”   I toss them a quick grin and the elevator doors open…

I’ve been encouraged to have some fun with these encounters and make up wild leg breaking stories. It’s super tempting but I know my poker face is pretty terrible. One look at me and I’d be busted.

Going forward I plan to test out the new response I’ve added to the collection.
“Nope, I didn’t break my leg, but you should totally go to my blog to learn more!”

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Clubfoot Stinks

Clubfoot should be a crime. It’s cruel for us girls who love shoes.  I have a small pile of shoes that I thought would work.  They were cute, I NEEDED them but in reality I can only wear them if I don’t move.  Sometimes I just try them on for fun, admire their beauty and then whip them back to the deep dark bowels of my closet.

Some of you are asking, “ummm, what’s clubfoot?”  Let me tell you!

Clubfoot is a common congenital disorder of the legs. It can range from mild and flexible to severe and rigid. The condition occurs in about 1 out of every 1,000 live births.  The physical appearance of the foot may vary. One or both feet may be affected. The foot turns inward and downward at birth, and is difficult to place in the correct position. The calf muscles and foot may be slightly smaller than normal. Treatment may involve moving the foot into the correct position and using a cast to keep it there. Treatment should be started as early as possible — ideally, shortly after birth — when reshaping the foot is easiest.  Gentle stretching and recasting occurs every week to improve the position of the foot. Generally, five to 10 casts are needed. The final cast remains in place for 3 weeks. After the foot is in the correct position, a special brace is worn nearly full time for 3 months. Then it is used at night and during naps for up to 3 years.

I had casts on my legs at birth and went to Shriner’s Hospital for Children in Chicago at 3 months for my first surgery.  The process went on over the years.  That’s how I scored those snazzy braces. Not just anyone can have a pair of those babies!

They did a good job but it comes with a cost.  My feet are flat and straight but I’m assuming the lengthening was a trade off for muscle.  I can’t rotate my ankle or flex my feet.  I remember bringing home my son as an infant and watching in awe as his perfect little feet would stretch, flex and tiny toes would curl. He was two days old and already mastered something I would never.  It was a really weird feeling.

There are rules to buying the perfect shoe…Need a strap to keep them on. A little heel because my left foot isn’t completely flat.  Not too big of a heel because my right foot is weaker and can’t handle it. If only my feet would be on the same page.

I can walk through the shoe department and select my options in a matter of seconds.  I am always on the lookout for a cute Mary Jane style shoe.   What have you found that works?  Any good links you could share would be great. I am starting up the chat forum for this topic and will pass on a few of my favorites.

 

great america blues

Last weekend was my birthday. This year I picked an outing for the day to Six Flags Great America. I haven’t been there in a good seven years and always loved the thrill of a roller coaster. Soaring through the wind. Up and down, flipping around through the air. Everyone unified by the thrill of the ride. Good stuff.

Great America had always impressed me with the accommodations they had for us with disabilities. You could go up the exit and they would get you on as fast as possible. If it was not really busy they would let you stay on twice.

When we got to the park we stood in a huge Guest Relations line for 20 minutes to get the pass to go up the exits. Then we headed off to the wheelchair rental booth. My wonderful husband pushed me around the park to save my poor armpits. {that alone is the best birthday gift ever}

The wheelchair cost $25 and then they wanted another $50 as a deposit {gulp}. After dropping a wad of cash in a matter of seconds we headed off to start our day. The Superman ride was first and my husband pushed me up the exit ramps, navigating past swarms of teenage girls and families making their way down. We noticed that as they came in contact with the wheelchair they became almost paralyzed and stopped. This just added to the congestion and the awkwardness of it all.

Up at the top we handed the ride operator our slip and they informed us that we could come back in 45 minutes. WHAT? You want us to go up and down that long and winding ramp again??

I was sad to find out the procedures changed this year.

New Rules:
You go up the exits and get your time assigned – this is based on the average wait time for the normal line. Then you either stand there and wait {and be in the way of all the people exiting the ride} or you make your loved one wheel you back down and then back up when it’s your turn to go on the ride. There is no staying on twice and some rides don’t let you come back for a certain amount of hours.

In the past there were times when I felt guilty being able to skip line but my husband would always remind me the obvious. The people in line have strong bodies. They don’t use crutches to walk. They are not getting sores on their armpits from standing in line. I need reminders like that to help me swallow my pride.

While waiting our 30 minutes to go on the Viper we got to know a lady there with her son and husband. Her son was in a wheelchair and had a condition where he does not sweat. So waiting for 45 minutes to get on a ride just doesn’t work. He needs to get inside after an hour or two to regulate his body temps. In addition to tending to her son, her husband was a quadriplegic. Going up and down the exits, standing around waiting, lifting her son in and out of rides and worrying about how long he’s been outside just seems like a lot of weight for her shoulders. No worries, this lady was blowing down any walls that tried to stop her from giving her family a few hours of fun. She ended up raising a scene and getting a special pass where she got on the rides instantly.

I’m disappointed that it takes just that for a person with special needs to hold their own at Great America. I was also disappointed that once you come back up for your turn you have to hunt down a ride operator, explain yourself again and then wait another 15 minutes until they get you on.

The person who changed this policy needs to try it out for a day. They might start to think it was their worst idea yet.

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ramble, babble and a few deep thoughts

I use crutches to walk. It may sound weird but I often forget. When I dream, I never have them. My body is strong. During the day it doesn’t cross my mind until someone on the street, in the elevator or at the store asks how I broke my leg. That’s my reality check that I’m not normal. Some days it makes me mad. Some days I don’t mind. It can lead to a new friend or become an unspoken reminder that their life could be worse.

Having Arthrogryposis is a part of me but it does not define me. As a 30-something I found there’s not much out there for us gals when we want to start a family. It’s scary and you want to find someone who has walked in your shoes. So here I am. On my journey to meet others and band together. Now that we’re buds. I’m sorry…I lied. It’s impossible to forget that I’m using crutches in the summer. Tank tops hurt. Ouch.

I am not sure where I’m going with this whole thing blog thing. I always wanted to write a book but now I am not sure that’s what I want anymore. I really don’t know what I have to say that could fill an entire book and I struggle with putting my life out there. I spent my whole life working towards being normal and now here I am wanting to write about how I’m not. There are a million people out there with challenges and disabilities, so I have waves of feeling not worthy. I am certain there are much more interesting issues out there that merit a blog, book or your time.

With that said, I’m still here. I love to write and I think I have some good stuff to say. Thoughts roll around in my head all day long and when good topics come to me I whip out my beloved iPhone and send them to myself for a rainy day when I will add them to my “book”… Sadly, my folder of these emails have grown out of control like my closet often does. I just continue to ignore it for another day. {shame}  I am guessing I have over 100 pages typed and collecting cyber dust inside my computer. Work, family, raising a toddler and life in general have gotten in the way.

So here is my story. Here is my life. Bear with me as I have no idea where I am going. Be nice to me as I wear my heart on my sleeve. The Bachelorette this season says “no regrets” and being the intellectual giant that I am…I think I’ll quote her. You can’t really know someone by only showing part of yourself, so I am hoping to be transparent in the hopes of gaining readers, providing some hope and getting the most out of this blogging adventure.

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