and he fell…….

falling is a part of charcot marie tooth disorder. people with CMT tend to have drop foot and a high arch. zach has the drop foot but not a high arch. CMT has affected his hands much worse than his feet. he still has to wear leg braces to compensate for his drop foot. before zach was diagnosed, he used to fall a lot. i used to say “he is like a puppy that hasn’t grown into his paws yet”. if you know me, you know i love animals, and i compare people to animals a lot. what can i say? I’m quirky. since zach has been diagnosed with CMT, he doesn’t fall as much BUT when he does watch out!!!

zach is a big kid. he is 6 feet tall. lets put it this way…his position was nose tackle when he played football. if you know anything about football, thats a big boy!!!! when zach falls, he falls hard. the anger, frustration and embarrassment he is feeling is translated into him yelling at me. i freeze when we are together and he falls. i don’t know what to do first. whether it be help him, calm him down, or do anything at all, nothing seems right.

the last couple of months zach has been falling more. his leg braces are broken and until his new ones are ready he has to be more careful. like any other teenager, he doesn’t pay much attention to what is going on around him. he fell the other day. he was with his friends, the sidewalk was uneven and down he went. i was not there with him. he hurt his hand and his pinky finger is bruised and black and blue. my heart drops into my stomach anytime he falls. a panic goes through me.

teenage years are just as difficult on a parent as it is on the teenager. as a parent all you want to do is protect your child from any hurt (physically or mentally ). as a mother of a child with a disability that “protection” is magnified. as kids get older, we cannot shield them from everything. it’s impossible.

let them fall and get up themselves. our job is to be there for them, not hover over them so they cannot handle what life is going to throw at them. its hard. believe me, i know.

and he fell again……

falling is a part of charcot marie tooth disorder. people with CMT tend to have drop foot and a high arch. zach has the drop foot but not a high arch. CMT has affected his hands much worse than his feet. he still has to wear leg braces to compensate for his drop foot. before zach was diagnosed, he used to fall a lot. i used to say “he is like a puppy that hasn’t grown into his paws yet”. if you know me, you know i love animals, and i compare people to animals a lot. what can i say? I’m quirky. since zach has been diagnosed with CMT, he doesn’t fall as much BUT when he does watch out!!!

zach is a big kid. he is 6 feet tall. lets put it this way…his position was nose tackle when he played football. if you know anything about football, thats a big boy!!!! when zach falls, he falls hard. the anger, frustration and embarrassment he is feeling is translated into him yelling at me. i freeze when we are together and he falls. i don’t know what to do first. whether it be help him, calm him down, or do anything at all, nothing seems right.

the last couple of months zach has been falling more. his leg braces are broken and until his new ones are ready he has to be more careful. like any other teenager, he doesn’t pay much attention to what is going on around him. he fell the other day. he was with his friends, the sidewalk was uneven and down he went. i was not there with him. he hurt his hand and his pinky finger is bruised and black and blue. my heart drops into my stomach anytime he falls. a panic goes through me.

teenage years are just as difficult on a parent as it is on the teenager. as a parent all you want to do is protect your child from any hurt (physically or mentally ). as a mother of a child with a disability that “protection” is magnified. as kids get older, we cannot shield them from everything. it’s impossible.

let them fall and get up themselves. our job is to be there for them, not hover over them so they cannot handle what life is going to throw at them. its hard. believe me, i know.

and he fell again ….

falling is a part of charcot marie tooth disorder. people with CMT tend to have drop foot and a high arch. zach has the drop foot but not a high arch. CMT has affected his hands much worse than his feet. he still has to wear leg braces to compensate for his drop foot.  before zach was diagnosed, he used to fall a lot. i used to say “he is like a puppy that hasn’t grown into his paws yet”. if you know me, you know i love animals, and i compare people to animals a lot. what can i say? I’m quirky.  since zach has been diagnosed with CMT, he doesn’t fall as much BUT when he does watch out!!!

zach is a big kid. he is 6 feet tall. lets put it this way…his position was nose tackle when he played football. if you know anything about football, thats a big  boy!!!! when zach falls, he falls hard. the anger, frustration and embarrassment he is feeling is translated into him yelling at me. i freeze when we are together and he falls. i don’t know what to do first. whether it be help him, calm him down, or do anything at all, nothing seems right.

the last couple of months zach has been falling more. his leg braces are broken and until his new ones are ready he has to be more careful. like any other teenager, he doesn’t pay much attention to what is going on around him. he fell the other day. he was with his friends, the sidewalk was uneven and down he went. i was not there with him. he hurt his hand and his pinky finger is bruised and black and blue. my heart drops into my stomach anytime he falls. a panic goes through me.

teenage years are just as difficult on a parent as it is on the teenager. as a parent all you want to do is protect your child from any hurt (physically or mentally ).  as a mother of a child with a disability that “protection” is magnified. as kids get older,  we cannot shield  them from everything. it’s impossible.

let them fall and get up themselves. our job is to be there for them, not hover over them so they cannot handle what life is going to throw at them. its hard. believe me, i know.

disability and politics…..

i am not here to endorse anyone. as election day is getting closer, we all need to think about this very seriously. who is going to run our country for the next four years? who is going to help the disability community in a positive way. 1 in 5 americans represent the disability community and rarely has a presidential nominee ever addressed them.

almost 60% of adults with disabilities are not in the workforce. they get paid below minimum wage and the stigma of having a disability is viewed negatively. how do these candidates plan on changing this?

again, i am not here to endorse anyone but in a rare move hillary clinton has bought up the subject of how she is going to address some of these issues. from what i have seen, donald trump, made a disgusting attempt at making fun of a disabled journalist. he has not addressed this issue on his website at all.

being a mom and having a child with a disability, this topic is very important to me and my family. we need to change the way this nation looks at and judges people with disabilities. I’m sure that i am not alone with my frustration. we should do our research and really think about who we want to lead our country for the next 4 years.

i want to make it perfectly clear, i am NOT endorsing one candidate over another. i am saying…do your research and make an educated decision. i am “just” a mom trying to make the world a better place for my children!!!!

charcot marie tooth and fashion….

now that autumn  is upon us, i get all excited for the new fall fashion trends. i don’t have a disability but my son, zach, does. he has charcot marie tooth disease. he is at the age where he is starting to care about his sense of style and the clothes he wears.

he has minimal use of his hands, so jeans are pretty difficult for him. as are button down shirts, and jackets with zippers. basically anything that has buttons and zippers, which as you know is almost every article of clothing we wear. yes he can wear sweats everyday and a pullover t-shirt or sweater but why should he have to?

why don’t we have more “adaptable clothing” for people with disabilities? zach doesn’t wear jeans to school mostly because he can’t button or zip them up after using the restroom. isn’t that insane? a person NOT using the restroom because they can’t  zip or button their jeans. how demeaning and embarrassing is that for anyone but especially a teenager? we live in the year 2016. w have put men on the moon. we have phones with FaceTime but a person with a disability cannot wear a simple pair of jeans because they can’t close them?  sure he can carry a button aide around with him, but why should he have to? what if he forgets it at home? what if it breaks while he is using it?

zach is graduating high school this year and going to college next year. zach has always loved being independent. so why must he be dependent on a button aide or a person to help him get dressed?  simple things that people take for granted on a daily basis, zach must constantly worry about because of his charcot marie tooth disease. isn’t it hard enough growing up in this day and age? why should something as simple as getting dressed be an issue for people with disabilities? don’t people have enough to worry about?

there are a few designers that are making adaptable clothing. IZadaptive makes a fashionable and functional clothing line for people in wheelchairs. Runway of Dreams has partnered with Tommy Hilfiger to make adaptable clothing for children. MagnaReady has come out with a magnetized dress shirt for people with limited mobility. ABL Denim is a denim collection with adaptive features making them easier to get the jeans on and off. these are just a few but we need all designers and manufacturers to make adaptable clothing. people with disabilities make up more than 20% of our population. why should they not be able to dress comfortably, stylish and fashionably?

 

clothes make people feel good about themselves. there is nothing like a man in a crisp suit and tie or the feeling of putting on a new sweater on a cold day. don’t you remember being excited to wear your new outfit to school?  fashion is our way of expressing ourselves.  lets give everyone that opportunity. lets start somewhere!!!!

 

 

 

Fashion Is For Every Body: We Did It

If you’re reading this you probably know that I spend a lot of my time swimming upstream and contradicting stereotypes. I’ve been called fiesty, firey, bitchy, stubborn, ballsy, badass, leader and queen (among other things). Last week I got to add co-founder, co-producer and runway model for Nashville’s first inclusive fashion show to the mix.

Source: Fashion Is For Every Body: We Did It

found the post very interesting on spashionista.com

don’t know if i did this right but i hope you go to her blog if i didn’t. sorry still trying to figure this blogging thing out! please bear with me. thanks

opening a fortune cookie wrapper….

i watch as zach struggles to open a fortune cookie wrapper. he is biting the plastic, trying to pop the air out of the bag, anything to get this wrapper open. it breaks my heart but i let him struggle.

my question is…should we always jump in and fix everything for our kids or do we let them struggle a little bit?  in the age of every child gets a trophy for participation and the helicopter parent, are we really helping our children get ready for the “real” world by always “fixing” everything for them?

we often forget that struggling and failing is as important as success. disability or not, our children are going to encounter many hardships in their life. i think about zach and his future. we don’t know how his cmt is going to progress. is he going to be in a wheelchair one day? is he going to completely lose the use of his hands? we just don’t know. that scares the heck out of me. there are some days that these thoughts overwhelm me.

as i sit here and watch him struggle to open his fortune cookie, i know there will be much tougher things coming his way.  i let him struggle and he figures out a way to get it opened.  as much as it kills me not to just grab the cookie and open it for him, i know i am doing the right thing.

 

 

 

 

 

the day of burps,pin pricks, and other happenings

i have 2 dogs. a black one named bella and a white one named melkie. little did i know after letting them out this morning that melkie would come in from outside covered in mud. MUD!! a white dog covered in mud. oy….. i  couldn’t get him into the groomers for a bath so i basically washed him myself. that was 830am this morning. that is how my day began!!

i was starting my first sewing class (yes, sewing) today. i was a little nervous. I’m trying new things. i park my car and proceed to the muni-meter. for those of you that don’t know what a muni-meter is, it is a machine that you pay for your spot and get a piece of paper with how long you have for parking and you stick it on your dashboard. Well, lets just say it took me about 15 minutes to figure this out. what happened to the old fashioned parking meters? this thing might have well have asked me for my first born.  it needed so much information to get a little piece of paper. i was talking to the machine. it’s a machine, it doesn’t answer back!!! i was talking to myself, unfortunately i was answering myself back!!! when did a parking meter become so complicated?

anyway, i get to my sewing class. i am one of three students. i  have never used a sewing machine in my life. the teacher starts explaining how to thread the bobbin, the needle, go over this, get the thread over that. what the heck? i thought this was a beginner class. the other 2 students have made their own clothes, and have their own sewing machines. this is a beginner class right?  ok i go with it. next thing i know I’m measuring and taping and ironing and pinning. in the midst of all this my glasses are falling off my head, i can’t see a thing, i am shredding the fabric trying to cut it. oh and as i am pinning i forget that i have fingers attached to my hands. in my head i am thinking that i am never going to come back here. i don’t care how much this cost me. in reality, i kind of liked it and i am curious to see how this thing comes out. i will keep you posted on my sewing endeavors !!

later that day i go to a bookstore. i LOVE bookstores and books. i ask someone who works there to help me find a book. he looks straight at me and says no and keeps walking. i just started laughing. so much for customer service! after an hour i find what i am looking for and go stand on line. this man behind me starts burping. no excuse me, nothing, just keeps burping. i thought it was a joke but it wasn’t. the guy must have had wicked gas!!! again i just start laughing. in fact i start cracking up!!! i hope this man is feeling better!!!

its now dinner time and i finish cooking dinner and move the pan filled with oil. it slips out my hand and oil goes everywhere!! i could cry but instead i just start laughing!! this has been one  the strangest, funniest days i have had.

the point that i am trying to make here is that you can choose to cry and get angry over everything or you can laugh and find that life is unpredictable and sometimes you have to laugh over spilled oil. get it? don’t cry over spilled milk, spilled oil?

I am a mom of a child with cmt….

I have never heard of charcot marie tooth until my son was diagnosed with it approximately  ten years ago. I always knew something was “wrong”. He was clumsy and fell often but i thought he was just growing into himself. One day in second grade, his teacher called me. She was screaming at me and asking me what is “wrong with your son?” “Doesn’t he realize he walks into everybody?” “I can’t have this in my class”. She basically went on a screaming tirade about my son. I hung up both so angry at her words and they way she spoke about my son that I wanted to just march up to the school and get her fired and then kick her ass. But I didn’t. I took a few deep breaths and remained calm. After a ton of research I had him tested at a local hospital. They did a myriad of tests and came back to me with a very puzzled look. They said cognitively there is absolutely nothing wrong with this child. In fact he was above other children his age in many subjects. O.K.? Now what? Me and my husband took him to a neurologist and there began our journey!

The neurologist asked my son to walk for her. He did and she looked at me and said “He has Charcot Marie Tooth” I asked her what shark tooth disease was. No joke! Never heard of it. No one in either my husbands family or mine had any neuromuscular disease. What do we do? Is it curable? Is he going to die because of this? All these crazy thoughts and questions were going through my mind. What is our next step? Do not go on the internet the doctor said. It will scare you and upset you. So, of course, as soon as I got home, I went on the internet. Never tell  person not to go the internet because that is the first thing they are going to do! What I saw scared me and encouraged me at the same time. I couldn’t fathom my beautiful, happy, sport playing son never doing any of those things again. What a heartbreak. I had a pity party for my son for exactly one day. That was all. One day. After that my husband an I did massive research. Went to all different hospitals and doctors. My son had all different tests. Finally we ended up with the organization and neurologist that would lead my husband and I into the cmt world. Dr. Shy is his name. The most brilliant, compassionate doctor I have ever met. He is part of the cmta. He put all our fears to rest and so began a relationship of trust and true understand for what cmt really is.

Do not be afraid of having cmt. It takes a while to get used to. You will have to do things a little differently than everyone else but it does not have to stop you from living your life. My son is an active 17 year old boy. He might not play sports as well as the other boys, or walk as fast as the other kids but he is one amazing soul. He never lets cmt stop him from doing anything. He drives. He plays sports. He lives his life. He does it with some modifications but he lives his life.