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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

Thursday, August 16, 2012

The Lilly Memorial Project

"My Angel Lilly" - I had those three words embroidered onto my "organizing utility tote" from Thirty One.  (I had never even heard of Thirty One products until this summer, when A.S., woman that I made friends with - because of Lilly! - introduced me to them.) 

This special bag holds many of my Lilly files, things I want at my fingertips.  I keep it right next to my desk.  Memorial ideas, my angel projects, writing ideas, Trisomy information, etc.  I came across the idea to put a filebox inside from a homeschool blog.  It really is a perfect fit!  (I bought an open filebox from Staples, added hanging files, and my file folders.  I love organizing so I think it's just perfect!)

If you are interested in Thirty One products, the director that I ordered from is named Nikki.  Here is her website: and her email is: )

Several files in my special bag are filled with ideas of what I have tentatively called "The Lilly Memorial Project."  Right now, the particular project I am focusing on is an "Angel Family Donation" project.  After seeing little crocheted dresses made by J. of Kit's Muse, I felt strongly like I wanted to do something to bless parents of angel babies.  (You can see my blogpost on Kit's Muse and dress photos here.)

So I contacted L.W., a special woman at UNC Hospital that helped me a lot with scheduling Lilly's appointments, and informed me about different services, etc.  I gave her a list of about a dozen things I was thinking if tucking into memorial boxes for parents that end up not getting to take their babies home from the hospital.  L. was very excited about all my ideas.  I'm not 100% of what all will actually end up in the boxes.  That is except for burial clothing.

I was extremely blessed to already have a beautiful gown to bury Lilly in when she passed away.  It was a vintage Christening gown that I had picked up in a thrift shop 9 months earlier!  You can see pictures here.  I can not imagine the stress of trying to find something beautiful to bury a baby in, right after they died.  It was hard enough for me to focus on gathering pictures for Lilly's viewing and writing my graveside reflections.  The night Lilly died, after we brought her body back into the house from the ambulance, I thought of the dress and had T. run get it.  We held it against her and saw it would be a perfect fit.  I was so thankful.

My goal is to donate 17 boxes, in honor of Lilly's 17 months of life on earth, in December, around the time of her one year "angelversary."

Here are two burial outfits that I bought off Ebay.  The first is a preemie sized dress and bonnet (Christening gown):

And this is a boy's outfit, newborn size:

I plan to include a variety of sizes.

The Lord has brought an amazing thing to pass for me regarding the clothing.  As I was looking at white clothing on Ebay recently, I came across a beautiful little preemie sized crocheted dress.  I clicked into the link and read about the dress and the seller's story.  A young woman had made the dress and wanted to donate it to a hospital but couldn't get a response from the hospital.  So she was selling the dress.  And she asked for suggestions on how to donate to hospitals.  AND - she promised to make the buyer of the dress FOUR more dresses for FREE to donate to the hospital of their choice!  I was so surprised and excited to read this - I really believe it is a "God thing!" 

I bought the dress from J., the young woman.  She promptly sent the dress, along with another she had just finished.  They are absolutely beautiful:

I can't wait to see more!
Because not all the angel babies will be preemie or newborn sizes, I am taking a tip from Kit's Muse and making burial "pouches" too.  These will be for the teeny tiny fragile wee babies.  Here is a sample picture, courtesy of J. of Kit's Muse (she also sent directions):

T. wants to take on the project of crocheting several of these.  Because I have no idea how to crochet, I am going to get her help on the first one, then she should be good to go.  (She can already crochet some.)

I know this is all really a sad topic to think about.  But as my family and I know too well - it is a part of life.  Yesterday marked 8 months in heaven for Lilly.  My husband wore his special Lilly colored tie to work.  We all remembered her - as we do every day.  She is still very much a part of our family.  And I hope that our Lilly Memorial Projects will honor her and bless and touch the lives of others.

One more big project I have been working on is expanding my post "LillyBear's Adventures in Chincoteague" into a little book.  (I have been having so much fun with this!)  I want to sell it and dedicate any money I make exclusively to my Lilly Memorial Projects fund.  I want to make the book available as both an e-book and printed copy.  I have no idea if anyone will be interested in purchasing the book, but hopefully a few will!  

If anyone has ideas on how to self-publish a full color book inexpensively (but good quality) please let me know!  I'm not really sure of the best route for that.

I have wanted to write this post for several weeks now, but for some reason, have just had such a hard time writing it.  But now it's done and I am glad.  For those parents of angel children reading this, I'd love your feedback.  Is there anything that you received from the hospital - or someone else - that was a comfort to you after your child passed away?  Or for that matter - anyone can answer this question that lost someone close.

I want to do a good job on this project and I'd love to have your prayers about the details, that it would bless others, and honor God.  Thank you!  :)

"And this is the confidence that we have in Him, that, if we ask any thing according to His will, He hears us: and if we know that He hears us, whatsoever we ask, we know that we have the petitions that we desired of Him." - 1 John 5:14-15


  1. Well it sounds wonderful!!!! I love the tiny sack it would of been perfect for Jonathan. We did not recive anything and that was really sad. I think having resources to talk to other parents is very helpful. I was desperate to talk to someone at first. Love that you are helping other mommies!

  2. Your ideas are wonderful. I am amazed. Is there something I can do to help??

  3. If it will help, I'd love to crochet some of the sacks for you. Or maybe make some tiny hats? Also, Lauren is taking a crocheting class at school with Mrs. Kennedy; maybe the girls in the class could help too?

  4. I am so sorry for your loss... I saw the crocheted pouch and would love the pattern because I make things for the NICU. Could you share it?
    Thank you, Deb

    1. Thank you for your comment Deb. A friend made some of the crocheted pouches for me. She based hers off the pattern at this link: So special you make things for the NICU!