Happy World Down Syndrome Day!

In case you didn't know today is World Down Syndrome Day, yay!! The reasoning behind choosing March 21st is that it is honoring the 21st chromosome that causes down syndrome. This day is especially close to my heart because my big sister Emy Jo has down syndrome.

Being goofy, as usual!

Warning: I'm about to get really mushy gushy on you but you should enjoy it!

On occasion when I say that I have a sister with down syndrome people apologize and tell me how sorry they are, which honestly just makes me laugh. Sorry? Why on earth should you be sorry it is easily one of the best blessing I've ever been given in my life.

Emy has contributed enormously to shaping the person that I am and the dynamics of my whole family.   Among the great things she has taught me such as being patient (you need A LOT of patience with her), being responsible, being aware of how amazing my parents truly are, she has shown us how to live a life of perpetual innocence.

Emy's favorite person Jale.

She has been blessed with the ability to never see anything wrong in the world. Emy has never meant a bad person and she doesn't really understand that anyone can be a bad person. How amazing must it be to not judge anyone or have any ability to be jaded from the cruelty of the world. Emy loves everyone equally and whole heartedly and I think she has taught us how to do the same.

But, Emy wouldn't be the amazing person she is without my incredible parents. Honestly, and I'm not just saying this, my parents are the most generous, wonderful people in the whole world. They do so much and sacrifice so much for all of us. They couldn't have done a better job with Emy or the rest of us.

Okay, I'm done being all mushy now but truly I wouldn't be the person I am without Emy and I wouldn't even want to imagine what life would have been like without her. So have a great day and remember to never take for granted the blessing you are given no matter how they are packaged.

So I will leave you with the worlds cutest picture ever.


As always, stay classy
XOXO

Hayley Kiah

Baby brother

The Secret Inequality: People with Disablities

Today I found out that a beautiful 25 year old women, that was close to my family passed away early this morning from complications from the flu. She had Down Syndrome just like my big sister does. 

I will call her J for the privacy of her family. She came to the pool I worked at all the time during the summer wearing spider man googles. She was adorable, happy, and above all healthy. 

While we like to pretend that people with disabilities are now viewed as equal in our society the fact is that this is just not true. J could still be alive today if she was given proper medical attention, which didn't happen most likely because of her disability. 

When her mother first brought her to the ER they blew it off as her having the flu. If they had listened to her that it was something more serious J could have been saved. 

This is not the only instance of doctors not taking people with disabilities medical concerns seriously. My older sister this past year had been acting strange and my family KNEW something was wrong. Every doctor we saw (Getting doctors to see her was challenging too) said that she was just "depressed." We knew it was something more serious than that. 

Me and My big sister Emy

Finally we found someone who took our concerns seriously and after tests found out that she has alzheimers. Which is very common among people with Down Syndrome. She is now being treated for it and while there is no cure we can at least hope to slow it's progression and make sure she is never in pain. 

People with mental disabilities are just as valuable as those born without extra challenges. This means they deserve the exact same medical attention as "normal" people. 

Please pray for J and her family in this difficult time and be aware of the inequality in how people with disabilities are treated. 

Thank you,

Hayley