A Birthday Invitation Allayed Fears That Our Daughter Would Be Left Out

Jackie Babiarz avatar

by Jackie Babiarz |

Share this article:

Share article via email
Main graphic for column titled

When my daughter Cammy was diagnosed with Rett syndrome at 20 months, I thought about all the life events she would never get to do.

What came to mind first were the big things — having children, getting married, getting her driver’s license, and living on her own. Rett syndrome robs a person of the everyday things we take for granted, such as walking, talking, and using our hands. I also wondered about her college savings plan, and whether she would live with us for the rest of her life.

Then I began to wonder about the little life events, those moments every mom wants their child to experience, such as going on a date, holding someone’s hand, and the first kiss. Would Cammy go to prom? Would she ever be invited to anything?

Recommended Reading
Main graphic for column titled

When Rett Symptoms Change

We were still adjusting to this new reality eight months later when Cammy came home from preschool with an extra big smile on her face. I asked her if she had a good day at school. Her eyes lit up, her eyebrows raised, and she beamed ear to ear. For a nonverbal person, all those facials expressions meant an absolute “Yes!”

I turned on her Tobii Dynavox eye-gaze device. Cammy immediately navigated to her “about me” page set, combining the two buttons “My best friend” and “Jefferson Preschool.” She repeated it over and over. I smiled and asked, “You had a good day with Oliver?” Her smile never left her face as she looked over at her backpack. I knew something was in there to tell me more about her day.

Life events and Rett syndrome | Rett syndrome News | Picture of Tobii Dynavox device used by Cammy to communicate

Photo by Jacqueline Babiarz

Cammy used her Tobii Dynavox eye-gaze device to let her mother know she had been invited to a birthday party only months after being diagnosed with Rett syndrome. (Courtesy of Jacqueline Babiarz)

Inside was a card addressed to Cammy. I opened it. I looked up at Cammy. She was overjoyed, proud, and eagerly waiting my response. The floodgates opened as I wrapped my arms around her. The card was an invitation to her new best schoolmate’s birthday party.

This was the first birthday invitation from a friend who was not one of our friends’ kids or a family member — the first invitation from a friend all her own. A special note inside said, “Oliver REALLY wanted to invite Cammy to his small party of family and close friends.”

Life events and Rett syndrome | Rett syndrome News | Oliver puts his arm around Cammy's shoulder in their preschool classroom

Oliver and Cammy were inseparable when they attended preschool together in 2013. (Courtesy of Jacqueline Babarzi)

Ten years later, Cammy and Oliver are still dear friends. They live in different states now, but along with Oliver’s parents, we make sure they still see each other at least once a year.

Life events and Rett syndrome | Rett syndrome News | Oliver kneels beside Cammy at her 12th birthday party

Cammy and Oliver have remained friends through the years, and last year, Oliver celebrated Cammy’s 12th birthday in March. (Courtesy of Jacqueline Babarzi)

I will always worry about whether my daughter will be accepted and included, and how she will navigate big life events. But isn’t that everyone’s worry, special needs or not?

***

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

Comments

Corinne avatar

Corinne

What a lovely story. My daughter is 43 and just received a rett diagnoses after genetic testing. Finally the puzzle of what was wrong with her from age 2 was, solved. I have learned to to not have expectations and to accept in a positive way the, way she is. She has, always lived with us. At first it was, devastating to know she would not have a normal life but we adjusted and we just make the best of it. It definitely is, a lonely and isolating condition. All you cando is shower them with love.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.