I Am Not Defined by Disability

A Mother’s Words for Jessica

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

(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)

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.

Discover more from Vickie Rubin: Special Educator, Advocate, & Mom

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27 thoughts on “I Am Not Defined by Disability”

  2. Anonymous

    This is beautiful. Thank you for sharing. Your daughter is a blessing to the world. I’m glad you’ve made more people aware of that.

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  5. Ab

    Just beautiful, Vickie. Jess is so much more than people see on the outside and I love that you convey her strengths and gifts so beautifully. Love how she thinks she should be defined as. 💕

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  9. Barbara Mower

    Beautiful!Also, except for the handbag, I thought the curly haired blonde woman was Em!Also, Jess looks beautiful

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  11. Anonymous

    So well said Vicki. So impressive. We all love Jessica and even that there are only 4 of us left from our book club that your mother in law started in 1965, we often speak of Jess and you and Mitch as such a loving, determined family. We remember the patterning and love we all experienced. so many years ago. We are all blessed to have Jess in our lives

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    1. Vickie Rubin Post author

      Thank you!!!! Rita would be thrilled to know that you are still meeting and also thinking of those who are no longer with us! Thanks for taking the time to read the blog and for commenting!!!❤️❤️❤️😊

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    1. Vickie Rubin Post author

      Thank you, Vicki! That means so much coming from you!!! Sorry to make you cry with your coffee this morning😉
      Always sending love and well wishes to you and your family ❤️

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    1. Vickie Rubin Post author

      Oh how I wish I knew who wrote this it says anonymous!! Thank you so much for reading for commenting and for appreciating Jessica‘s “enthusiasm“ at Temple❤️❤️❤️

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Your Turn! Would love to hear your comments