Wednesday, October 25, 2017

I Never Thought...Day 4

This week for Down syndrome awareness month, I'm sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

When I was told of Jaycee's Down syndrome and associated problems, I never thought I'd see my daughter a community of people in her life supporting and celebrating her. When Jaycee was born, I felt alone. I knew of only one other family in my county who had a child with Down syndrome. I personally knew of no one who had a baby in heart failure and needing an open heart surgery. I felt that no one had a life like mine. It was a very isolating time.

Eventually, I came to meet other families on similar paths, and even some people in my area with children with Down syndrome.

Over the years through various groups, my family has had several opportunities to be surrounded by people supporting Jaycee's diagnoses and meet other children/adults like her. These awareness walks and events remind me that our family isn't alone. We fit into a community of people who understand even if the specifics of our lives are different. Here's some examples:

For a couple of years, the kids and I participated in a local Childhood Apraxia of Speech walk. Jaycee, along with the other children with CAS, were given a medal and made to feel like the stars they are for a day. I met other moms whose children didn't naturally acquire verbal speech and who knew what CAS was (which is a rarity). 

Since Jaycee was 1, our friends and family have attended various Down syndrome walks once or twice a year. When Jaycee is surrounded by dozens of people who love her, I'm reminded of just how many people her life has touched. 

Sometimes, being in a community of people brings special opportunities. Our local Down syndrome group has teamed up with a minor league baseball team to provide a neat experience for those with Down syndrome the past few years. Those with Down syndrome had time on the field and a meet and greet with the players. This same DS group has also held dances, swimming parties, and other events where we can see other families like our own and learn from each other. 

I never thought when I heard Down syndrome (and Childhood Apraxia of Speech) that I would meet so many other people on similar paths as mine. I never thought my daughter would have such a community around her, and that so many people would care about my child! I thought I was alone and on my own when she was born, but I thankfully was wrong

Special thanks again to our Down syndrome Association and the volunteers in the local group for helping families connect and celebrate. A special thank you to all of those who have been on team Jaycee for awareness walks and events. We feel the love!

1 comment:

  1. Yes - childhood apraxia of speech does make you a star.


    And walks are wonderful.


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