Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.


Written by Katie. Posted in Favorites, Memorable Experiences

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I love my birthday.  I always have.  There is a running joke in our family that my birthday is the “Month of Katie.” I have always loved to prolong my birthday well into the month of November.  I am not sure why I love it so much.  I just do.  So this year, with Brad and my family knowing full well that I love my birthday, they kept asking me what I wanted for my birthday, what I wanted to do for it, yadda, yadda, yadda…

Because I wasn’t doing so hot at that time, I was being a major grump about it. I kept saying, “I don’t want to do anything.” Or “I’m not celebrating 29 until I have a diagnosis.” or “I just want to skip it.” 
But the funny thing is 29 ended up being my most special birthday yet. 

My sister, Allie was supposed to start her new job as a case manager the week of my birthday.  However, her starting date ended up getting pushed back a week.  With her extra week off, she ended up booking a ticket so she could be with me on my birthday.  I kept telling her not to.  I told her I wasn’t fun and I had been having a lot of sick days.  I told her it wasn’t worth the money.

But she came anyway.  Allie flew in on Tuesday and my birthday was on Wednesday.  On Wednesday Allie and I got up and she took me to my first arthritis swim class with Bernice and Esther.  Everyone in the class thought I was the instructor, so they were surprised to learn I was there just like them to work my joints in less gravity.  Boy did I have to answer a lot of questions at that swim class.  Afterwards, Allie took me to the 12:15 Wednesday mass at St. John’s.  We were supposed to go to the mall afterwards but I was feeling really sick so we decided to go back to my house and we watched a channel we both share a love for: Bravo.  My Dad made my very favorite dinner; stuffed shells.  Brad got me the most perfect monkey card and he brought home a beautiful bouquet of my absolute favorite flower-Gerber Daisies!

Despite the circumstances, it was a good day. 

Then a week later, my birthday became even more special.  I was surprised with a very unexpected present.  I found out that a parent of one of the students I used to teach had organized a spaghetti dinner at her church to help raise money for out of pocket medical expenses for Brad and I to use for things like gas to and from doctors appointments, hotel stays in Cleveland, supplements, co pays, etc.  I learned that the dinner occurred on October 20th.  My birthday. And what is funny is that this very special parent didn’t even realize that October 20th was my birthday. 

When this parent came over with another very special friend who had also helped organize a lot of the event, to tell me about it, and bring the cards, donations, and notes of love and support that had been collected I truly was speechless.  I couldn’t wrap my head around the fact that so many students and families, staff members, and community members had shown up just for me.  It still blows me away and brings tears to my eyes every time I think about it.

This amazing act of kindness that I will never ever forget along with being surrounded by my family and support system on my birthday; whether in person, through Skype, on the telephone, through text messages, or through facebook messages really made me aware that turning 29 was not about the gifts to unwrap or the places to go, but instead about the gifts I already have that I need to embrace each and every day.  29 has been my most memorable and meaningful birthday to date thanks to so many special people.

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