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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Friday, March 18, 2016

Trisomy 18 Awareness Day 2016 - Donating my wedding dress for angel babies


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.

The Trisomy 18 road is a hard one, especially because it can be so hard to find doctors willing to help, but if you are on that road - keep trying.  There ARE some doctors out there that believe these babies are worth it and are full of compassion!

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!


Families of Trisomy 18 children across the world become linked together.  A part of each other's lives.  One mama that I have a special link with is Julia's mom.  Julia died the day after Lilly and I often think of both of our girls whenever Lilly's December angelversary comes around.  (I have a picture of Julia on our refrigerator too.)  Julia's mom has written several excellent, informative posts for Trisomy 18 Awareness day over the last few years.  Here are two, that I have linked:

"Trisomy 18 Awareness Day 2015: 18 Things You Should Know" 
and
"Why Trisomy Awareness Matters"

When I was in the hospital with Tabby earlier this year when she had pneumonia, we both thought a lot about Lilly.  After all she had been in that particular hospital twice.  I found myself wondering what I could do to honor Lilly for this year's Trisomy 18 Awareness day.  Then I remembered my sister-in-law Nikki sharing an article with me about a woman that turns wedding gowns into burial dresses for angel babies. 

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.


I like it, but I like the idea of it being made into little angel gowns to bless other grieving parents much more.

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

8 comments:

  1. 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?

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    1. Thank you Megan! And LOL - no I wouldn't wear it again - I don't think I could even fit in it! :)

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  2. Oh, 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!

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    1. Thank you so much Jacqueline, for your comment. It means a lot. :)

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  3. I love this idea! Where did you send it? Thinking of you all and of Lilly today with much love.

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    1. I 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:
      Chesapeake – Sandra -- sewcaring@cox.net

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  4. Thank you for posting this. I have been looking for something like this to do with my dress! Praying for your family!

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    1. I'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! :)

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