Traci’s Story – An Extra Special Child

Traci Lynn (permission)My name is Traci and I am 38, living with Cystic Fibrosis. I was diagnosed at the age of two years and was always told I was going to die very young, which forced me to grow up so quickly. I have been so blessed with the support of my amazing family. My Mom and Dad have always been by my side fighting for me.

My biggest dream as a little girl was to be a mommy. Unfortunately at the age of 22 that dream came crashing down around me. They found I had stage 3 endometrial cancer cells that had spread throughout my reproductive organs as well as my appendix. I remember waking up in my hospital room and the nurse telling me “they had to take it all including your appendix”.

I felt the weight of the world on me, making every breath I took harder and harder. I remember being so angry and asking why as I cried out to God!! Then I had the most amazing wave of peace come over me. I had to trust that God had a bigger and better plan for me.

His plan was more than I could have asked for. 10-years ago I met the man of my dreams and now I have 2 beautiful step-children. My step-daughter, whom I refer to as my baby girl had changed my life and she truly is my Angel. I have been raising her since she was 7 years old. I am her voice as she can’t speak and her legs as she can’t walk. However we share a heart full of love and understanding.

My baby girl had Cerebral Palsy and a seizure disorder called Lennox Gastaut Syndrome (LGS). Unfortunately this means she has about 2-10 seizures a day. It seems no matter how long you have seen them the pain is still there when you watch your child have a grand mal seizure!

For me caring for my baby girl and trying to take care of myself is a lifelong juggling act. I recently had pneumonia and pleurisy and was sicker than I had been in a very long time. I have to admit this really scared me. How was I going to care for my step-daughter who completely relies on me for EVERYTHING, when I couldn’t even take a deep breath without it hurting and bringing tears to my eyes?

I relied on God to carry me through this and he did, he also opened my eyes and made me realize that it’s ok to ask for help. I want to be around so I can be a part of her life and continue to be her voice. My husband and I have decided that it’s time to get a nurse just twice a week to give me the break I need. This will allow me to take care of myself but not take away from precious time with my baby girl.

I will continue to battle living with Cystic Fibrosis. However, I will not let it define me or stop me from fulfilling my dreams. It may take longer but with God by my side I will have the strength to do anything.

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