It's almost March, which is Trisomy Awareness Month, and I've been thinking of my own Lilly and all the other sweet Trisomy 18 children. I created Trisomy 18 Awareness notecards for myself to use and decided to list them in my Etsy Shop (https://thecuriouscrowpress.
They come in both a printable version (you download and print them yourself) or in a regular version that I print and mail to you. Two sizes available. Here are the links:
Happy Independence Day/4th of July and Happy Birthday, Lilly! She would have turned 14 years old today if she were still alive. I'm so curious what she would have looked like and acted like at 14. I miss her. 💕😇
I still make a cake in memory of Lilly's birthday every year:
I recently planted fresh flowers in Lilly's memorial garden, so everything is bright and cheerful. My Mom gave me the patriotic butterflies:
My Dad and Stepmom sent lilies. They're still slowly opening:
Today, March 18, is Trisomy 18 Awareness Day. What is Trisomy 18? It means there are 3 of the 18th chromosomes in the body, instead of the usual 2. That naturally causes real problems for the body. Early help can give these babies a chance to live longer. Lilly lived 17 months and I was grateful for every minute of her precious life. 💙👼
SOFT (Support Organization For Trisomy) (soft.org) is a group that has been educating and helping families with children diagnosed with Trisomy 18, 13 and related chromosomal disorders for over 40 years. I found them so helpful during Lilly's life and I still get cards from them every year, remembering her. The month of March is "Trisomy Awareness Month." See soft.org for plenty of resources.
A few days after Christmas, my two youngest children, LillyBear, and I took a trip to Chincoteague island in Virginia. We'd never been to Chincoteague during the winter so didn't know what it would be like, except that we wouldn't have to deal with the pesky mosquitoes! My Dad and stepmom, and my siblings and their families, all came to Chincoteague too.
If you've read my book, LillyBear Goes to Chincoteague, or my 2012 blog post, "LillyBear's Adventures in Chincoteague," you are familiar with the activities and things we like to do on Chincoteague and neighboring Assateague islands.
We stayed in a cute little house called the Crepe Myrtle Cottage, which I believe was built in the 1930s. One of my brother's and his family stayed with us. My Dad and stepmom, other brother and his family, all stayed down the road at the Starbright Cottage.
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| LillyBear on the steps of the Crepe Myrtle Cottage |
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| LillyBear is sitting on a table in front of the window with our book next to her |
Because of the time of year we were there, not everything was open. But it was still very nice because there were no crowds either. Just being outside and walking in the fresh air was wonderful.
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| LillyBear climbing a large crepe myrtle tree |
One day it was rainy so LillyBear decided to stay in the cottage. (She prefers to be warm and dry!) Solomon and I explored a little part of the island that we had never seen before - the Chincoteague Waterman's Memorial. We had to drive through the marina parking lot to get there, and then walk up a little hill.
It was so foggy we couldn't see very far around us. The only sound was water lapping on one side. The quiet and fog made reading the plaques even more sobering. Yet there was such a beauty in the place.
Solomon and I followed a trail past the memorial for a while. It was very interesting. We're still not sure what this part, off the trail, was:
LillyBear was happily waiting for us, when we finally got back to the cottage:
For those of you that are Misty of Chincoteague fans, here is Miss Molly's Inn on Main Street where Marguerite Henry stayed at in 1947 while writing her book:
It doesn't seem that Blogger sends out emails to subscribers announcing my posts anymore, so I have no idea if anyone that used to read this blog will see this. But if you are reading this, and for any new people who see this, I just want to say "hello" and that I hope you have a very blessed new year!
LillyBear and I have an exiting announcement to make! We now have a published book on Amazon.com: LillyBear Goes to Chincoteague.
Because the book is self-published through Amazon, it is a "print on demand" book. That means it can be ordered and printed from any Amazon website in the world. So if you live in another country and are interested in the book, you can get it without paying for overseas shipping. 😉
Here is a summary of the book:
When LillyBear travels with her family to Chincoteague and Assateague islands, she is amazed by everything she sees in the natural world around her and inside the many museums she visits. As much as she enjoys her days exploring, she starts to worry that she’ll never see the island’s wild ponies. Will LillyBear find all the historical links to the famous pony Misty? What will LillyBear learn about the lighthouse on Assateague island and why the mosquito was nicknamed their official bird? Will LillyBear ever see those elusive wild ponies before her vacation is over?
A heartwarming and informative story about a little bear and her (human) family as they explore Chincoteague and Assateague islands. Learn alongside them as they visit museums, a lighthouse, and all things Misty of Chincoteague. Hear a recollection of Pony Penning Day and see famous spots on the islands through the eyes of a curious little bear.
Filled with photographs, this “living book” captures the spirit of the family’s adventure and the events and places described.
This book was written in memory of a special little girl, Lilly, who was born with Trisomy 18.
The front and back covers:
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| Lilly sleeping after her 2nd heart surgery (Nov. 2011) |
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| Lilly waving - on the way home after surgery & recovery! |
