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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

Saturday, March 31, 2012

A beautiful Easter lily

Late this afternoon the doorbell rang. When I opened the door, my friend C.S. was standing there with this beautiful Easter lily plant. She handed it to me and said that she and her family wanted us to know that they were thinking of us and Lilly.

Wow. I was so touched and uplifted by her words and the gift. It really gave such a happy burst to my day.

Thank God for friends!

"Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up." - Ecclesiastes 4:9-10

Not only do I love the plant, but that is great purple polka dotted paper! :)






Thursday, March 29, 2012

A Change in Perspective

The other night, I saw this picture on a post by Caleb's mom. The words struck me:

The sky never looked so beautiful until Heaven took you.


Ever since Lilly died I've felt like the sky has dimmed. The sun was no longer as bright. Even though I see all the beauty of spring outside, it's not the same.


However, yesterday I kept thinking of the words on this picture. I used it to begin to transform my thinking. Now my eyes are so often drawn to the sky and I think "How beautiful! My Lilly is up there smiling!" Thank you God!


In thinking about how just a few words could help me change how I felt, I was reminded of the part of 2 Corinthians 10:5 where we are urged to "take captive every thought to make it obedient to Christ." There is freedom and power in being able to do that. Not that it's always easy!


Today I skimmed a short e-book that I saw linked in a post in a Trisomy Angels group. It is written by a mom of a baby named Cora that lived for five days. (She had a heart defect and her death was a surprise.) The e-book is called "When A Friend's Baby Dies." (Click the title for a direct link. Here is the homepage of the website: http://corashopesanddreams.org/ ) I thought the author had a lot of very useful things to say and that the e-book is a very good resource. It is FREE. So download it and save it for when you might need it!


I've mentioned several times before, that this grieving process over Lilly has been teaching me a lot about how to better support others going through this. I still have a lot to learn though, so I appreciate ideas from others.

Tuesday, March 27, 2012

Lilly Lilly on the wall ... sweetest girl of them all!

Our latest Lilly memory project: enlarging and framing some of our favorite pictures of Lilly. The group of pictures in photo 1 is in our office/schoolroom over our computer desk. The pictures in photo 2 are in T.'s bedroom.

All of these pictures of Lilly were taken shortly after her milestone 1st birthday by our photographer from Now I Lay Me Down To Sleep.

Photo 3 shows two jumper's hanging in T's room. The larger one, in fireworks fabric, she made herself last July. I made the small one, with firecracker fabric, for Lilly last July. Unfortunately it didn't fit her well! It wasn't wide enough in the leg area. But I got some pictures, we have a memory, and T has something cute for her wall to remember our Little Firecracker by.

Memories are indeed such a blessing! Along with photos!

We're going to be going to another funeral on Saturday. (This makes 5 in 8 months.) My son said excitedly today that Lilly sure does know a lot of people in heaven! He is right.

Thank God for the hope of us all being reunited in heaven one day.









Saturday, March 24, 2012

Planting our Lilly Memorial Garden

After Lilly died in December, I decided I wanted to have a garden with lily flowers in her memory. So I bought my daughter T. and I both used copies of a book on lily flowers. Wow - there is a huge variety!

We found a couple packs of lily bulbs at the store recently and bought them. We got star gazer lilies, oriental lilies, and a pack of assorted Asiatic lilies.

There are so many varieties of lilies we've seen in plant catalogs that we'd like to try planting, but it's probably best to start small and add to the garden each year.

Yesterday my husband tilled a patch of our yard for the garden, right next to our butterfly garden. Today I hoed the dirt and T. helped plant the lily bulbs. Then my husband put down a light covering of mulch, and put a little fence around it.

We put a memory stone at the front of the garden. I will be on the lookout for some angel and cherub statues to nestle in once the flowers start to grow. I really hope that the flowers do well! We don't know a lot about growing flowers so everything we do is a bit of an experiment.

Today's last picture shows an Easter lily that is growing. For the last two Easter's we've gotten an Easter lily plant. After enjoying it inside for awhile, we plant it outside. I'm so excited to see the two we've planted coming back up this year! The one in the picture is the one we got last year when we had Lilly with us. It makes me smile and I think of her wearing her bunny ear hat.

"My beloved is gone down into his garden, to the beds of spices, to feed in the gardens, and to gather lilies. I am my beloved's, and my beloved is mine: he feedeth among the lilies." - Song of Solomon 6:2-3

Wednesday, March 21, 2012

"Rainbow babies"


I saw this dress at Kohls a few days ago and it reminded me of our Lilly - our Independence Day girl! (Not sure why the picture turned out so small - I took it on my cell phone at the store.) I had the idea of hanging up a bunch of Lilly's red, white, and blue clothes across the fireplace mantel (on the Christmas stockings nails) in July for the memories and decor. :)

I learned a new term last week - "rainbow baby." It seems that is a term for a baby born after a sibling that has died. So the baby I am pregnant with is referred to as a "rainbow baby." I had also heard the term "therapy baby" but I think I prefer "rainbow baby." It's so colorful and cheerful!

In our Trisomy 18 circle, there are a number of mama's that are pregnant with rainbow babies. One mama posted this picture which has this explanation on it:

"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with the aftermath. What it means is that something beautiful and full of light has appeared in the midst of darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."

I think that's beautiful. My emotions are all jumbled up about losing Lilly and being pregnant and these words just help some of that fall into place in my mind.

[God speaking after the flood] "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth." - Genesis 9:13

Sunday, March 18, 2012

Trisomy 18 Awareness Day - March 18

The month of March is "Trisomy Awareness Month." The different trisomies then have their different days. Today is March 18 so it is Trisomy 18 awareness day.

I don't know who assigns different things the different colors of ribbon which we see so much of now. But whoever did, choose blue for Trisomy 18. My daughter and I wore blue ribbons on our clothes today. I also put a little blue ribbon on our "Lilly bear." (I found this bear in a thrift shop and it just called to me. You know - it's so fun that Lilly was born on July 4 - but I have to be careful not to get sucked into buying every red, white, & blue thing I see!)

There is a section of this blog that only I can see called "Stats." It tells me several things about the blog including how many people view it each day and what the most popular posts are. On September 9, 2010, I did a post describing Lilly's Trisomy 18 features. That has remained the post I get the most hits on. You can read it here. Be warned! The Lilly you see there is super skinny! (She had dropped from her 5 lbs. 4 oz. birth weight to just under 5 lbs.) After you look at those pictures, be sure to scroll to the top of the blog and remind yourself of how far she came in her 17 months! (13 lbs., fat rolls, smiling, and interactive!)

The day after Lilly died, another little girl named Julia, that had Trisomy 18, suddenly died. I've since gotten to know her mama. I love to see pictures of Julia - she reminds me a lot of Lilly. And interestingly, Julia's family lives where I grew up. Her mama did a good post today called "18 Things You Should Know About Trisomy 18." You can read that list here. Julia's mama liked our idea of doing a memory tree and you can see the one they did for Julia here. The tree style is completely different from Lilly's tree and very pretty. Julia's mama sweetly sent us an ornament like one she hung on Julia's tree - it has a butterfly and says "Hope." It will be perfect for May and maybe June too when we put some butterflies on the tree.

"Hope" is a wonderful thing. There is so much negativity about having a child with a trisomy. Even though they do not have "normal" lives, I can tell you, these children are an enormous blessing. They will change your life and make you a better person. They will touch people all around you. Or even all over the world! (I am still amazed at how many readers this Lilly blog has of people from other countries.) If you find yourself pregnant and are told your baby has a trisomy - don't give up and think the worst. Have HOPE.

"Rejoice in hope, be patient in tribulation, be constant in prayer." - Romans 12:12

Friday, March 16, 2012

Lilly was an author?!

This past Monday we visited Lilly's grave. We took the beautiful "Lilly themed/colored" wreath we had been given as a gift. I had wired it well to the wreath stand and I pushed the bottom parts of the stand a couple inches down into the ground. I hope that it is secure!

Lilly is buried at Oakdale Cemetery in Washington, North Carolina. It is an old cemetery with quite a number of people buried in the 1800s. There is a confederate monument there. There are a number of wonderful, big old trees. I've realized that trees in a cemetery are useful in many ways - one way being that they help block wind! But it's still pretty windy there. I hope the wreath lasts a long time anyway. (I'm thinking of the beautiful flowers we took that blew away.)

While we were there we cleaned up Lilly's stone a little. There was some dirt in the lettering. She is buried next to my husband's youngest sister and her stone needed a lot of cleaning and the grass cleared back some from it. I had never really thought about grave upkeep before this year. But it's definitely something I want to do throughout my life.

After being at Lilly's grave for awhile, we continued on to my mother-in-law's house and stayed there through yesterday. She has several dolls displayed in her home and one kept catching my attention. I wasn't sure why at first but then it suddenly it me - this doll (2nd photo) reminded me of Lilly! Something about the little mouth and nose, and big eyes, something in the expression - it's just Lilly-ish.

On a recent blogpost, my sister-in-law N. left a really neat comment :

Happy Memories.... My friend Lou from England told me last night that she was out and about yesterday and saw a lady with a baby. Lou was intrigued by this baby which reminded her so much of Lilly and evidently was staring so, that the mother finally told her to "take a picture!". The mother thought Lou was being rude. Lou apologized but the mother was offended and told her that her daughter was not a freak show. When they got outside of whatever store they had been in, Lou approached the mother again and apologized and asked if her daughter had Trisomy. The mom was shocked and pleased and asked if Lou was a doctor. She'd never had anyone know about Trisomy besides doctors. This lead to a short discussion of how Lou knew about Trisomy and the mother was so touched that Lou cared and she WANTED to talk about her daughter. :) Thank you for sharing Lilly with the world and educating the public. Including myself.

I was so glad N. shared this! And it shows you - so many of these Trisomy 18 babies just have so many similar features. So that Lou, who had seen pictures of Lilly, was able to recognize one in public! I love it. Trisomy 18 awareness at a "grassroots" level.

My mother-in-law gave me a delightful book by an author named Lillian Hollowell! (Lilly's full name is "Lillian Eva Hollowell.") I was so surprised when she told me recently about the book, which she bought off Ebay. If it weren't such an old book I'd be suspicious that our Lilly had been busy working on it at night while we slept. :)

The book is titled A Book of Children's Literature and was published in 1939. The author complied many many classic stories, prose, poetry, and biographies for the book. We will be using it for homeschool for sure!

Yesterday marked 3 months that Lilly has been in heaven. It seems like forever ago. We remain grateful for every second we had with her. I think of Lilly when I read this scripture:

"Thanks be to God for his indescribable gift!" - 2 Corinthians 9:15