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Awareness 21 Project: Isabella

10/14/2019

3 Comments

 
Hey, hey, hey! I hope you are all enjoying reading these awesome stories from a few local families who celebrate Down Syndrome Awareness Month! I have another great story to share with you today from one of my good friends, Stephanie. 

Here is what she wrote about her youngest daughter, Isabella:

October is a special time of the year for our family, not only is it Down Syndrome Awareness, but it is also the month that Isabella was born in. Isabella, or Izzy for short, was supposed to be a December baby, but due to some pregnancy complications, not related to her having Down syndrome, decided to come when I was 7 months pregnant with her weighing a whole 3 lbs and 15 inches long. 

We found out Isabella could possibly have Down syndrome when I was about 5 months pregnant. We found out she did have a heart defect that would require her to have open heart surgery within the first 6 months of life. The type of congenital heart defect she was diagnosed with is called a complete AV Canal. We were told that this type of heart defect is seen in a higher percentage of babies born with Down syndrome. We were in the doctor's office when we found this out, and we were left in a room for about 5 minutes to gather our thoughts and then taken into the geneticist's office. I was so confused as to why we were in there. It hadn't hit me that the geneticist was implying that my unborn baby could have Down syndrome. She started talking about options: termination, adoption, meeting other families that have a child with Down syndrome, having an amniocentesis to confirm the diagnosis. Then she mentioned having a free cell DNA blood test that could possibly predict if I was at high risk or low risk for having a child with Down syndrome. Still, I was so confused, why were they still talking to me about Down syndrome? There was no way in the world that I could have a child with Down syndrome. I was 29 at the time. Doesn't this only happen to older women? Or so I thought at the time.
About a week later, I received a call from the geneticist, stating she had received my blood test results...and it showed I was at high risk of having a child with Down syndrome. My heart dropped... and it was a 95% chance the baby would have it, the geneticist said because of her type of heart defect. You dream about this child that you're going to have and then those dreams are just ripped away from you. There was a grieving process I had to allow myself to go through to truly appreciate the little girl I have today. 
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Isabella has shown and proven that having Down syndrome is NOT disability. She is not disabled, she is not handicapped, and she sure is not the "r"word. But I will tell you what she is: she is a 2 year old, just like any 2 year old. She pushes boundaries, she can walk, she can communicate with words and signs, she plays with her baby dolls, she laughs and smiles, she has tantrums and gets put in time out, she can climb, she can run, she rides horses every week, she feeds herself, she adores her older sister Allie, and most importantly she loves unconditionally. 
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For this Down Syndrome Awareness Month, I encourage people to ask about what they don't know about Down syndrome. Believe me, I was clueless when we were told about her diagnosis, and now I enjoy when people ask me questions because it is spreading awareness and I want people to know about Isabella and what she is capable of doing!
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Stephanie, thank you so much for sharing your story. I agree with you- Isabella is capable of SO much. She is able, she is beautiful, she is amazing. Happy Down Syndrome Awareness Month, and happy almost birthday to your beautiful girl! 
3 Comments
Jack Fussell
10/14/2019 01:51:47 pm

Thanks to all involved for sharing this story.

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Jennifer Warren
10/16/2019 10:32:43 am

Thank you for taking the time to read these stories, Jack!

Reply
F Sick link
10/14/2023 06:22:28 pm

Great read thank yoou

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