Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Thursday, January 19, 2012

I Don't Want to be Normal


Julia one year ago today, 1/19/2011.
She slept a lot back then!


Julia changed us in so many ways. We experienced new things, we adapted to new ideas, and we learned to love in deeper ways than we could ever have imagined. My days were filled with caring for Julia and keeping her doctor and therapy appointments. Caring for a child with special needs is consuming but in a fulfilling and inspiring way. We worked hard on typical things like learning to eat from a bottle, strengthening neck muscles and core muscles, and practicing playing with toys. Results took so much effort. Every new skill, no matter how tiny, was celebrated like a major milestone. I am forever grateful to Julia's therapists for helping me to recognize the progress Julia made and to rejoice with me in each accomplishment.

We also met new people and joined an online community of parents of children with special needs, and more precisely parents of children with trisomy 18/13. It took me a few months after Julia was born to find this community but they have been unbelievably supportive and helpful. There are members of this community with living children with t18 and some with angels who were stillborn or who were blessed to live with their families for a weeks, months, or years. All are included and supported. It is a group of people who "get it" without explanation and without judgment. I continue to keep up with this online support group even though it is sadder to do so without Julia. I realize, though, that Julia's story can still encourage and inspire other new parents and I want to offer that. Each child with trisomy 18 has their own unique set of challenges and each parent's perspective is valuable. On average, a baby born with trisomy 18 lives 5-15 days, and Julia lived 12.5 months. Hers is an amazing story, and I can't lose sight of that in the midst of my sadness.

I dearly miss my not-normal days with Julia. However, I know that I will never be "normal" again, and I am so thankful for that. It is part of Julia's lasting and immeasurable impact on my life. I love you, my special girl!

2 comments:

Jodie said...

Julia's story has been life changing for many people. We think of her and talk about her daily. She is greatly missed.

Juliana Abraham said...

This is a beautiful picture of her. So sweet and serene!

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