why now……

recently many people have been coming up to me and saying “i see your posting more about charcot marie tooth on Facebook. why now?”

i have a few answers to that question–

  1. i have been going through my own health issues for the past 3 years and i feel as if i have awoken from a fog.
  2. i always have posted things on Facebook about charcot marie tooth but i decided that since  september was cmt awareness month i would post something everyday and i have never stopped since then
  3. i have found something i am very passionate about (mid life crisis sort of thing i guess lol)
  4. i want to teach my children that hard work, persistence and tenacity  really does make a difference
  5. I’m trying my hand at this social media stuff and I’m finding that i enjoy it
  6. and most importantly i want to raise much needed awareness and funds for a terrible disease that has affected my son.
  7.  and, why not now???

as a stay at home mom for the past 19 some odd years, my kids are getting older and i find myself with a lot of time on my hands. i know this the fork in the road of life that many moms face at some point. my time at that “road” has arrived. i have worked many part time jobs as my children were growing up. i have tried many “hobbies” also.  what i realized was that nothing was keeping my interest and i was getting bored very easily. i have always wanted to LOVE what i do. i didn’t want to get another part time office job that i would get bored with.

having gone through open heart surgery and breast cancer for the past 3 years has changed me in indescribable ways. i have become  less patient with the (excuse my language) bull#$&@ in life. i don’t know if that is such a good thing lol!! i really have realized that one must live life everyday to the fullest because life can change on a dime. but the thing that has really, really stuck with me is that life goes very fast. you wake up one day and your children are graduating high school and college and all you have left is YOU. yes family and friends are there but YOU are the only one that must find ways to make your days count. you are the only one that can control which road you take.

a wise woman named robin roberts (yes good morning america, robin roberts!) always says “make your mess your message”. that is what i have decided to do. take everything that i have been through the last couple of years and help people.  it has taken me 50something years to realize this. i know i have so much more to learn and experience as i get older but i am so excited to travel on that road!!!

 

i hope you follow me and help me in my journey!!!

#inclusion #cmtmama #endcmt #cmtstrong. if you would like to donate, please go to http://www.cmtusa.org/donate/cmtmamaruthkorowitz/.

i would also love any feedback on topics you would like for me to discuss on my blog!!!!!

 

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

 

 

 

 

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!!!!