FAMILY JOURNEYS

The stories below, written by parents, describe the experiences and emotions that come with raising a child who has multiple disabilities and how their families’ lives have changed.

Do you have a story to share? Please tell us about it!

Our Journey with WAGR Syndrome

by Debbie Nicholas

My son Danny Nicholas is 34 years old and was born with WAGR SYNDROME, an 11p13 chromosome deficiency. WAGR is an acronym.  

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The Most Pure Love

by Casey Adams

I can’t imagine that the struggles and pain have not strengthened my love for you exceedingly. I am blessed every day to be given more time with you. I am grateful that I get to try again tomorrow, that I get to try to be better and to be just the mother that YOU need me to be.

Moments of Joy

by Jodi Anderson

I did not know anyone who was blind. I did not know anyone who was deaf. Both? How are we going to do this? Can we do this? Well, I channeled that fear and frustration into action. There was something I could do; I could educate myself and research to learn as much as I could and find resources to help us.

By Her Side

by Nicole Hopkins

The system looks at Olivia as her list of diagnoses and fails to acknowledge the big picture. She is still a child, a little girl, and my little girl. She is a sassy, stubborn, funny, and adorable six-year-old who takes after her parents.

Our New Life

by Kortney Calvillo

I feel like the one thing I’ve fully grasped is it’s okay to feel alone…Because you are alone. You’re alone in your heartbreak, you’re alone in your own trials, and you’re alone in your own emotions…I think feeling alone is one of the few things that we all aren’t actually alone in!