|Lilly - 12 months old|
Lilly, aka Little Firecracker, was one of only about 10% of babies with Trisomy 18 to live to celebrate her first birthday. (And that is of the low number to survive birth and then make it past 2 months old.) Trisomy 18 (and Trisomy 13) is unfortunately known as a "lethal condition." Or, as some doctors put it, "incompatible with life."
When I was diagnosed as being pregnant with a baby with Trisomy 18 I thought "what is that?" Like most people, I had never heard of Trisomy 18. The only Trisomy I had heard of was Trisomy 21, Down Syndrome. (Though at that time I didn't know it as "Trisomy 21.")
Trisomy 18 is a genetic condition meaning there are three copies of the 18th chromosome instead of the usual two.
"Trisomy" means three so that is why March, the third month of the year, has been adopted as Trisomy Awareness month. The 18th is specifically Trisomy 18 Awareness Day.
Little Jordan lived three days with Trisomy 18. Her mama is working to raise Trisomy awareness with a fundraiser. She calls it "Trisomy Tea" and seeks to raise awareness "one cup at a time." For $5.00 (plus postage), you can buy a "tea cup". It is a paper "tea cup" card and has a package of tea inside. Jordan's mama suggests:
Have you thought about what you can do with your Trisomy Tea Cups?
Have a tea party with your children,
Share them with the therapists working with your child,
Take some to the hospital/staff/doctors that helped deliver your baby!
The ideas are endless; also consider sharing recent research for them to review; I have a list of helpful websites included with the tea. Last year I took them and research to 2 NICUs in West Virginia to share with the doctors and staff
Here is the Trisomy Tea Facebook page with ordering information: https://www.facebook.com/TrisomyTea I love unique ideas like this!
Now for my book giveaway announcement!
Recently I read a book called Audrey Bunny by Angie Smith. (Angie has also written I Will Carry You: The Sacred Dance of Grief and Joy about her daughter Audrey, who had an "incompatible with life" diagnoses and lived 2.5 hours on this earth.) This is a very sweet children's book about a stuffed bunny, named Audrey, who fears that a mark on her body - an imperfection - has made her unworthy of love. She soon learns though, that that is untrue. And that everyone is special and wonderfully made by God. The illustrations in this book are just precious. They are drawn by a young woman named Breezy Brookshire. (You can see her style in her Etsy shop here.)
Obviously I see the connection with this idea and my Lilly.
|Lilly and Mama - July 2011 - photo credit Steve Rubin Photography|
You can enter by:
1) leave a comment to this post (with your contact info) OR
2) e-mail me at: LittleFirecrackerLilly @ gmail. com (remove spaces) OR
3) message me on Facebook
"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well." - Psalm 139:14