being different…..

zach is your  “typical” 17-year-old boy in every way except that he wears leg braces and does not have full function of his hands. lately things have begun to bother him about having charcot marie tooth. he can only drive his own car. it is adapted so that he controls the gas and breaks with his hands along with a few other tweaks. he asked me last week if he could move my car from the sidewalk to the driveway. i said no. my car is not adapted for him. he became very angry and frustrated with my answer. he has realized that as much as he can do anything, he cannot.

at an age where kids like to drive their parents “nice” car, he can’t. no big deal right? to him it is a big deal. i can tell him that he should be thankful that he can drive a car and that we are fortunate to be in a position to outfit his car for him. he doesn’t care. in his eyes he is different than other kids and will never be able to just get in a car and drive. he will always have to adapt things to make it work for him. why isn’t our society more aware of people with a different ability? why is it in 2016 we are still fighting to get paid as much as an able bodied person? why aren’t there more accessible entry ways? how about opening a can of soda? zach has to compensate for everything that people take for granted.  someone the other day asked me “how does he tie his sneakers”? i had to think about that for a second. he finds a way to do it.

in an age of self driving cars and phones where you can see someone on the other end, we are very antiquated with what is available to differently abled people. we have come a long way but we have so much farther to go. being a mother of a person with a physical disability, i also take things for granted. i don’t realize how hard it must be for zach to type on a computer or open a door. all door knobs are round. he cannot open his hand. wow, right?

20% of our country is made up of people with an intellectual or physical disability. thats a lot of people. i don’t want this post to come off as preachy. i just want to make people aware of this. I’m just a mom trying to make a better place for my kids. i have the means and ways to do this. many people don’t. making ones car adaptable to them should not cost a fortune, but it does. wearing legs braces should not cost someone 2 months salary. that is insane. i don’t want to hear about obamacare and health insurance. it is not about that. it is about quality of life.  yes quality of life. zach should not be frustrated because all shirts have buttons and he can’t button his shirt. make shirts that are adaptable to him.

i started this blog to try and make a difference for my child and other people like him. awareness brings about change. lets change the perception of people with disabilities.

#cmtmama #endcmt #charcotmarietooth #cmtausa.org

 

 

 

 

pity and I’m sorry…..

yes my son has charcot marie tooth disease. yes he was born with it. yes he has to wear leg braces and no i don’t want your pity.

the definition of pity is “a strong feeling of sadness or sympathy for someone, and/or something that causes sadness or disappointment”.

i am neither sad nor disappointed about zach and his having CMT. from the day he was diagnosed with this disease i promised myself i would not feel sorry or pity zach or myself. nothing i could have done would have changed the outcome of his being born with CMT. CMT is usually hereditary. in zach’s case it was a spontaneous mutation. gosh that sounds alien like lol. but thats what happened. my dormant CMT gene and my husbands dormant CMT gene produced a child with CMT. its a little bit more complicated than that, but in a nutshell, thats what happened.

sometimes when i tell someone that my son has a neuromuscular disease and has to wear leg braces, they say “I’m so sorry”. what are you sorry for?  are you sorry that he was not born “perfect”? are you sorry that he has to grow up that way? what exactly are you sorry for?

why does society feel  the need to say “I’m sorry”? do i say I’m sorry if your child has blue eyes? do i say I’m sorry if your child has huge feet?  why does society get so tongue tied when they encounter someone who has a disability? as far as I’m concerned, being different is what makes the world go around. having a “disability” just means zach does things a little differently than others. he drives a car. instead of using his feet, he uses hand controls. zachs uses a computer. but instead of using his fingers he uses his knuckles. he compensates and finds what works for him. i have seen people that use their feet to paint because they have no arms. i have seen people run with no legs. just think how amazing that is!!!

 

unfortunately it is a majority of the “able-bodied” community that insists that having a disability is a terrible thing. don’t think of a disability as being a burden or a sad. i feel that its the feeling of pity and sadness that needs to change. don’t pity zach because he needs help doing things or does things differently. would you pity someone that asks for help getting something off a tall shelf? would you pity someone because they ask for help carrying in groceries?  do you pity me because i am left handed and its primarily a right handed world? being left handed has forced me to do things differently than a right handed person. think about when we were in school. most of the desks were made for righties? you know what I’m talking about!! the table where you slide in to the right and as a lefty you must contort your body around so you can write on the desk!!

i guess what i am trying to say is, instead of pitying zach and my family, look to the positive in our lives, and oh we have so many!!! for example: i don’t need to wake up at 630am anymore to drive zach to school. he drives himself!!!