This week for Down syndrome awareness month, I've been 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.
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This post is different today. This post is about a moment that is a blessing and a curse all at the same time. A few years ago, Jaycee was blessed with something I never thought would happen to one of my children. She qualified to receive a wish from Make-A-Wish. Years of medications, hospital admissions, surgeries, and daily medical interventions led to Jaycee's health being serious enough to qualify for a wish. It wasn't necessarily her Down syndrome that put her in the situation. Her AV canal heart defect, Wolff-Parkinson White syndrome (another heart condition of the electrical system), asthma, sleep apnea, recurrent pneumonia, and severe reflux all together make simple colds anything but simple. No one could predict all of Jaycee's health issues when she was a baby, and no one can tell me today what her future holds.
I never thought I'd be the mother of a child with a complex medical history. I never thought I'd sleep in an ICU room watching my child's monitors. I never thought I'd see my child on a ventilator for an illness, but I have more than once.
And in all the craziness of Jaycee's medical history, something good happened. It was Make-A-Wish.
For her wish, Jaycee wanted to meet Barney the Dinosaur at Universal Studios, which meant we stayed at Give Kids the World Village and visit other Orlando area parks. Here's a few highlights:
An amazing picture with the Toy Story characters
Jaycee meeting her favorite! Barney!
Getting some time with Elsa and Anna & the rest of the Frozen gang at Disney was probably the second most magical moment.
I never thought my child would battle multiple health problems. But, I also never thought this would lead to Jaycee becoming a wish kid. The wish was a bright spot in Jaycee's life before, during, and afterward. We looked forward to her trip, enjoyed every minute of it, and still talk about it today.
Sometimes life doesn't turn out how you think it will, but sometimes good comes out of bad situations.
You can read more of Jaycee's Wish Story HERE.
Here's a story of her meeting BARNEY.
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