A Mother’s Words for Jessica

Our daughter Jessica is 43 and has severe intellectual disabilities. This is a parent’s perspective of defining our daughter by her abilities and strengths, seeing past the disability.

I am not defined by my rare chromosome deletion —but some dismiss me immediately

crop chemist holding in hands molecule model
Photo by RF._.studio _ on Pexels.com

I am not defined by my wheelchair—although many people can’t see past that

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Jessica 2020

I am not defined by the assistance I need to get through each day — yet, many cannot overlook the daily moment-to-moment care that I need

Driving Miss Jess
Mitch Helping Jess out of her Van

I am not defined because I cannot speak words —You do not know what I understand

A woman and a young adult with disabilities are engaged in a lively conversation at a table, with a piano visible in the background.

I am not defined by pity—because I, my family, and friends do not feel pity for me.

Dear Colin Farrell
Jessica and Housemate-Friend Playing the piano

Please, if you are going to give me a label—Let it define:

  • My love of friends and family, music and food, community and temple, and all the things that make me who I am.
  • My ability to show and share joy
  • My right to experience each and every day, just like you
Happy Birthday Jess

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For inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

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Calling All Book Clubs! 

Have you read Raising Jess: A Story of Hope? I’d love to join your book club for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.

Disability & Family Life