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

A Slightly Different Christmas

Written by Katie. Posted in Family, Holidays, Memorable Experiences

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Christmas. It has always been one of my favorite holidays.  I love everything about it; having that special feeling of peace and hope, spending time with family, Christmas mass, the food, the traditions, the love that is felt all around…

Despite how beautiful Christmas was for us this year, I have to admit that something was missing.  That something’s name is Allie, the youngest of the four of us siblings.  I know, I know, as I grow up and get older I must accept that change is inevitable.  I am aware that I can’t expect to have everyone always together as we all continue to grow as adults and go down our separate paths.  But it was still weird.  Really, really strange.

We have this tradition that when we open gifts, we always start with the youngest.  This year we started with Andy.  Andy, Kristen, and I kept looking at each other and saying, “This feels so wrong.”

I hope I am not sounding spoiled, or entitled…I get it.  I really do.  Allie is in Indonesia with her boyfriend spending time with his family, soaking up the culture he was born into, seeing sites that people only dream of.  Currently, she is at a 5 star hotel, enjoying 80 degree temps in Bali.  I know in my heart that this is where she needs to be.

It’s just that Christmas and Allie is such an emotional thing for me and my family, ever since we almost lost her to PAN Vasculitis Christmas night, four years ago.  Call it PTSD, call it what you want.  Allie had been in the hospital sick for weeks with no diagnosis, when she spiked a major fever and had a seizure in the middle of the night, that according to her doctors, “was supposed to leave her brain dead.” My Mom and Dad were told to say their goodbyes.

It still haunts me…Four years later it is still something I continue to work through.

Every Christmas since that night, I hold her a little closer…I hold everyone a little closer.  At mass, I always write God a small letter in the prayer book thanking him for not taking her that Christmas night.  I always pray for her hospital roommate who was the one who paged the nurses over and over again as Allie seized; the woman who essentially saved her life.

Christmas came to mean so much more after that year.

Loved ones.





I missed Allie a lot this year.  Her sarcasm.  Her quiet confidence. Her healthy face.

However, the fact that she is currently halfway across the world living life to the fullest, instead of in University of Maryland’s ICU makes me so very thankful…Brings me so much comfort.

Allie is a survivor.  She is, and always will be one of my heroes.

I love you, Al.  I can’t wait to celebrate with you and Gabe soon.

There’s so much to celebrate.

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