Today is Trisomy 18 Awareness Day. I never heard of Trisomy 18 until doctors began talking about it at my first ultrasound with Lilly. Since then I've heard about it, read about it, and breathed it - living it for 17 months with Lilly.
My prayer is that as more people learn about Trisomy 18 then there will be more acceptance of it. No longer will a baby with Trisomy 18 simply be thought of as "incompatible with life" but will be a baby worth fighting medically for. Just like babies with Trisomy 21, Down Syndrome, now are.
Though Lilly had Trisomy 18, that did not mean that Trisomy 18 defined her. She was still a real person! She was a little girl that had feelings, that responded with smiles and laughter, that loved her family, and that had an intense curiosity of the world around her. And an intense hatred of what she considered boring hospital stays!
"Trisomy 18 Awareness Day 2015: 18 Things You Should Know"
and
"Why Trisomy Awareness Matters"
I did some searching on the hospital computer and after several contacts, finally found myself in touch with a woman here in North Carolina that sews for "Precious Little Angel Gowns." (Note - I initially contacted "Angel Gowns by Michelle" who was able to send me a list of email addresses for contacts in many states.)
For years, my wedding dress has just hung on the wall.
So I took it out of the plastic, and took a few pictures:
Then I put it back in the plastic, put it in a box, and added a note about my donation:
I learned from the seamstress, that when a dress is donated in honor of someone, that she makes a little keepsake from the dress to send them. I think that is so thoughtful and look forward to seeing what it is.
St. Patrick's Day 2007 |
That's so, so beautiful. Because really.... The dress is beautiful, but it's just a dress. Are we really ever going to wear it again?
ReplyDeleteThank you Megan! And LOL - no I wouldn't wear it again - I don't think I could even fit in it! :)
DeleteOh, Lisa, I am in tears! You have blessed me so much in sharing this part of your life. Beautiful Lilly! I love that you can donate your wedding dress and love your Big, Big heart! God bless you, dear Mama <3 Thanks for stopping by the blog!
ReplyDeleteThank you so much Jacqueline, for your comment. It means a lot. :)
DeleteI love this idea! Where did you send it? Thinking of you all and of Lilly today with much love.
ReplyDeleteI sent it to "Precious Little Angel Gowns" - they have a FB page. There seems to be a group for almost every state. FYI the Virginia contact is:
DeleteChesapeake – Sandra -- sewcaring@cox.net
Thank you for posting this. I have been looking for something like this to do with my dress! Praying for your family!
ReplyDeleteI'm so glad! Let me know if you need help finding who to contact about your dress. THANK YOU for your prayers - we need them! :)
DeleteAwesome! That is a great ideal! Babies are so precious and we dont understand why some have this but God has his reason. Hugs and prays for Lilly and your family, all the family that have to go thru this. They are a precious in his site
ReplyDelete