Patient Stories

My Heros, My Children

Living with CIDP for 28 years has been a long rough journey.  I would not be here today if it weren’t for My Heros. My daughter Emma and my son Tyler.   Both of them have had to grow up with a mom who has been ill. Emma was 4 and Tyler was a newborn when I was diagnosed.  They have had to live their lives adapting to me. There were many days I would sit in the car during a cold baseball practice or need help picking things up around the house.  My children have had to rescue me from various falls and crazy accidents.  I vividly remember Tyler at the age of 3 climbing into the washing machine to grab the clothes that I could not reach.  I remember Emma cooking dinner on nights when I physically could not do it. Emma and Tyler have had to deal with a lot.  My husband Phillip died in 2005. Emma was 15 a freshman in high school and Tyler was a 10-year-old in 5th grade.  We all managed to help each other cope while living with my CIDP.

 As adults, they know what it is like to help others and show compassion.  They have moved out of my house but they regularly check in.  Emma makes “mom” meals for me to eat on days when I don’t feel like cooking.  Tyler is my “Mr. Fix it” when I need work done around the house. On “Drip” days they make sure I’m doing good and have something for dinner.  Both of my children can explain CIDP like a professional. I would not be where I am today without my team, my hero’s, my children.