Text Size: SMALL  LARGE

Jocelyn -  Multiple Lesions and Surgeries

"6 years old, 4 brain surgeries and 5CMs removed...so far"

 

My two year old baby girl was wheeled into surgery in a big red wagon, doped up on versed, with a huge smile pointed with two amazing dimples.  That was the last time I saw that beautiful smile.  Jocelyn came through that surgery with both 6th and 7th cranial nerve damage, leaving her with right-sided facial paralysis.  As a result, she is now blind in her right eye from scarring due to the inability to blink.   She also suffers weakness on her whole entire right side of her body.  Jocelyn’s core weakness, balance and coordination issues still persist today. She has had many bleeds and set-backs along the way, including suffering from seizures daily.   Jocelyn is now 6 years old and has had 4 brain surgeries and 5 CMs removed so far.   

It took almost 4 years, countless doctors and a ton of heartache to be where we are today.  Although we are all still very much in the dark when it comes to these little time bombs, I at least feel that I have an opinion that matters in her medical care and I cannot tell you the difference that makes, especially when you constantly have to trust someone with your child’s life.  Partnership and knowledge are key.   Most importantly, I am extremely proud of Jocelyn.   I watch her struggle with everyday tasks, and see her fleeting disappointment as she watches others do things so easily that she cannot. This little girl reminds me constantly to pick myself up and do what I can when I can.  Life is not easy for anyone, but it is not over!  I watch her make the conscience choice to be part of it, and that fills me with an overwhelming sense of fulfillment, because she is happy. 

My little girl is a fighter and has taught me to fight for her anyway I can, be it with doctors, schools, or for answers alongside the Angioma Alliance.