From the get go, we knew Emily was different.
Nobody believed us but we knew.
What we didn’t know was why and what it meant.
She didn’t have that survival instinct that makes a newborn latch on their mother or on a bottle…
She didn’t seem to understand how to drink at all…
We knew she was different.
We struggled immensely while trying to feed her but we never gave up.
15 months later we had a diagnosis of cri du chat syndrome.
Emily’s syndrome has changed our life’s.
What many take for granted, we cherish. Accomplishments that are too small for others to notice, we celebrate.
Emily’s diagnosis has changed us.
In the future weeks, I will repost previous posts that explains what Cri du chat syndrome is and share some of my favorite blogs showing how Emily is defining herself as opposed to allowing her syndrome to define her.
If you are new at following my blog and want to learn about other families with a child or adult with Cri du chat syndrome, search my site for interviews.
Emily’s syndrome has given us an extended family of incredible individuals. Come meet them!
If you want to connect on Twitter, you can find me @plebrass
Or if you prefer Facebook, I just created a page for Lessons from my daughter. Please look it up.
Emily loves when I tell her how many followers her blog has. So please follow and share if you like her stories and enjoy sharing our journey.
In the meantime, here is a preview of my next post…
Yes, after years of wanting to be a cheerleader, Emily did it!
She’s a cheerleader, her team had a showcase over the weekend and are now getting ready for competition season.
I’m loving how fearless she is!
amazing! she is a testament to the power of the human spirit. you all are.
My wife use to give parents the book “Leo the Late Bloomer”. As the one article says about the book “Leo isn’t reading, or writing, or drawing, or even speaking, and his father is concerned. But Leo’s mother isn’t. She knows her son will do all those things, and more, when he’s ready.” I think that’s how we approach our Allie. While she may not do things when other kids do, she’s still doing them, just in her own unique way. And that is a special and wonderful thing also.
I agree. Emily is on her own path and the journey is her own… And now ours :). Thank you for reading and commenting. I always look forward to your comments as you can relate to my stories :).
How awesome! I have a daughter who has different challenges but she is an Irish dancer. She love it and I understand how important it is to her just as I am sure that your daughter loves her cheer leading! Good for her!
Emily has tried to join cheer club and take dance lessons in the past and it wasn’t successful till this past summer. Now she’s in a small team, 5 athletes and 3 coaches :). It’s fabulous. If the team doesn’t grow too fast, I think it will continue to be a positive experience. She’s so happy about it.
So glad she’s found the perfect fit!
I’ve said this before, but she rocks! Hope the competition goes well. 😃
Thank you. She does rock! ❤️
That’s really great! Good for Emily. I am so happy for her 🙂 ❤️❤️
Thank you. She is so excited to be part of a team, have a uniform and perform. She’s amazing!
That warms my heart!