Lilium Firecracker

The morning after Lilly passed away, we found a wrapped gift on our front porch. Inside was a wonderful, handmade present. My friend K.M. had painted a lily flower and behind it had written this scripture:

“Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? Which of you by worrying can add one cubit to his stature? So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these." - Matthew 6:25-29

In little letters along the left side of the flower, K. wrote "Lilium Firecracker" - which was a tribute to our Lilly, aka "Little Firecracker." The gift made me cry happy tears at the beautiful job K. did and her kindness and thoughtfulness. If you came to Lilly's viewing, you probably saw this gift displayed up front with other framed pictures.

K., her husband, and four young children came to Lilly's viewing and funeral. We were able to have a good talk after the funeral. Then yesterday I got word that K. was found passed out and her husband took her to the hospital. She is a diabetic and has been having trouble with her blood pressure. The whole thing quickly turned into a life or death matter. Apparently her heart is not firing correctly. Last night they almost lost her. She had to be intubated and heavily sedated and put on a pace maker. (As I learned from when Lilly almost died on Mother's Day, if you're intubated you have to be sedated so you won't try to rip the thing out.) She seems somewhat stable at the moment, but not out of danger yet.

It was so upsetting and we are continuing to plead with God for K's life and healing. Interestingly though, through it, I have developed a much better sense of peace about Lilly's death. Lilly suffered a lot off and on throughout her short 17 month life. But she did not seem to suffer in death. On her last day, she had a great day at home with her family, enjoying her routine and smiles and kisses, and seems to have passed gently in her sleep. As much as I miss her, I am not selfish enough to want her back in this life where there is pain and suffering, especially when I think of how miserable she was in hospitals. I am so happy for her that she is completely free now of her limited earthly body. It has been extra hard the last two days as I have had to pack up some of Lilly's things, including the pallet she died on. But focusing on HER happiness, has made it bearable.

This morning, my daughter T. and I went to our local scrapbook store to get some pages for our Lilly scrapbooks. I wanted something special for the funeral pages. I told the store owner that Lilly had died and she offered her condolences. Then she began to recollect how she remembered us coming in with Lilly before, and how cute she was, and how she remembered Lilly's story. I was just beaming as this woman talked!

Something I have learned since Lilly died, is an answer to a question I used to wonder. I used to be afraid if I said very much - other than express my sympathies to the survivors of someone that died - that I would hurt them more. I was afraid that the more I talked about the deceased, the more pain I would cause the survivor. I have since learned that is NOT the case! I have found that I LOVE to talk about Lilly! And that when someone will not even acknowledge that she has died, that that is what hurts. I'm not sharing this so that everyone will run up to me and start talking about Lilly. I'm sharing this because it is something that I learned, and maybe it will help you to know how to better support someone that is grieving.

God puts it this way: "Rejoice with those who rejoice; mourn with those who mourn." - Romans 12:15

A Lilly Poem

Below the lily flower picture is a sweet poem that Lilly's Uncle D. wrote right after she passed away.

Thank you D. !










Lilly by D.J.G.

Lilly God lent us a little angel, named Lilly, for a while
We watched her grow, and watched
her learn to coo, and laugh, and smile.

He chose the perfect family
And placed her in their care
Sister, Brother, Mother, and Dad
The best, beyond compare.

Some of us were privileged,
to hold this child so sweet
We felt her gaze, held her hand,
And kissed her rosy cheek

So many held her in their hearts
In places near and far
Because Lilly’s face is the type of face that
Facebook was made for.

When God looked down He was pleased
With the love this angel had sown
In His wisdom He said it was time
For Lilly to come home.

We will miss her, and we will cry
But maybe our tears will stop
When we remember, Lilly is in heaven
Celebrating Christmas there, with Pop.

A Review: The Viewing, Funeral, and Burial

I've been putting this blog post off. I just don't feel like revisiting these two days. But I do want to have the information here, for our family record.

On Sunday, December 18, Lilly's viewing was held at the Thomas Funeral Home in Fuquay-Varina, North Carolina from 3:00 - 5:30 p.m. We were amazed at the number of people that came and we thank each and every one of you that did. It was so wonderful to be able to talk briefly to most everyone as they came through in the line. One woman shared that she had had a child with Trisomy 18. That child lived 2 hours. One of my best friends and her husband drove for 10 hours to come to the viewing. That meant the world to me. Then we had the special blessing of meeting another Trisomy 18 family. This family drove all the way from South Carolina to be there. It did my heart so much good to see their Lily, who was so cute and active. You can read about this little girl we call "The Other Lily" on her blog.

Here is our beautiful Lilly at the viewing. Her faithful stuffed caterpillar Hank watched over her. We put him in the coffin with her at the end of the viewing.

I thought we needed the mood to be lifted a little at the viewing, so I pulled off one of Lilly's shoes and socks. "Sneaky Lilly" one more time! (I put them back on before the coffin was closed up.)

The next day, Monday, Lilly's funeral was held at 10:00 at Peace Presbyterian Church in Cary, North Carolina. (We don't attend this church but our church used to meet in the afternoons in their building.) Both my husband and G.L., our pastor, spoke. My brother P.H. and a man that leads singing at our church, J.M., lead the songs.

We sang: "As the Hart About to Falter" (and no "hart" is not misspelled - it is a very old word for "deer"), "How Firm a Foundation," "My Jesus I Love Thee," "Amazing Grace," "The Lily of the Valley," and the "Doxology."

We were told by a number of people that came that the service was very uplifting. We were so glad to hear that!.

You can listen to a recording of the service here.

This picture is at the church:

After greeting and thanking the many people that came to the funeral, we drove to Washington, North Carolina for the burial. Lilly was buried at Oakdale Cemetery. She was in a family section, right next to my husband's youngest sister (who died in a car wreck many years ago) and across from my husband's father (who died this summer).

At the burial service we had prayers and I shared about Lilly. (What I said is here.) Then we sang "Jesus Loves Lilly." ("Jesus Loves Me" but with a few word changes.) I thought it was a wonderful service. Here are a couple pictures:

I am really feeling a sharper sting of missing Lilly right now. What a blessing she was to our family! A blessing beyond words.

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

Lilly's Christmas gifts

I was running way behind on all things Christmas this year (except our Christmas tree!) So it was Christmas Eve night when I was finally wrapping our children's gifts. We had a couple things for Lilly so I decided to go ahead and wrap them too. Then I put everything under the tree. I put Lilly's Christmas stocking out with ours too. (You can see her stocking in pictures from last Christmas here.)

After everyone was done opening presents on Christmas morning, I opened Lilly's gifts. I had bought her an insulated lunch bag with owls on it. I thought it would be the perfect size for carrying all her food and her feeding supplies with us when we went out.

For Lilly's main gift, we had bought her a 4 foot artificial Christmas tree. This was because Lilly had loved our big tree so much! So we thought we would have a special tree just for her that we left up all year long. My daughter T. and I decided we are going to go ahead with that plan. It will be a tree honoring Lilly. We want to put different decorations on it each month. We plan to set it up on New Year's Day. January will be "angel month." I'm going to hang Lilly's two angel ornaments that are hanging on our tree now on her new tree, along with a few others I had already. Plus she got two special new ones for Christmas, which I'll post about when we put the tree up. I plan to continue to get her a new angel ornament every year, for as long as I'm alive.

I'm so happy we had these gifts for Lilly. Even though she doesn't need them now, I do. :)



"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." - James 1:17

Merry Christmas

The Saturday before Lilly passed away, I did a photo shoot with all three of our children for our Christmas cards. After that I did a photo shoot with Lilly in her new fancy red tutu dress and headband. (I got them here on Etsy.) I'm so grateful to have these pictures! My intention was to save them and post them on Christmas day. So I am doing just that now. Isn't she sooooo adorable?!

This morning I was thinking about Mary giving birth to Jesus. It seems that very early on she understood that the special purpose for her baby would involve suffering. And yet she responded to the angel's message: “I am the Lord’s servant,” Mary answered. “May your word to me be fulfilled.” - Luke 1:38. I admire her faithfilled response to God's soverign will.

We are grateful, that in God's kindness, He allowed Lilly to die so peacefully, in her sleep. Lilly did not suffer in death.

We still miss her greatly and her absense makes us sad of course, but we are thankful beyond words that she did not suffer in dying.

Everyone is asking how we are doing. Well this Christmas didn't go as planned of course. But we are doing well overall. Posting these pictures of Lilly today really made me smile. And miss her chubby rolls! It gives us immense comfort to know that Lilly is celebrating this day with her Lord and Father and she is perfect.

Merry Christmas Lilly! We love you forever!

Surrounded by lilies

We have received quite a number of beautiful flowers and plants in honor of Lilly. The majority have lily flowers in them! We love them! They smell so wonderful in the house and brighten up the rooms they are in.

I need help solving a mystery. We have one bouquet that I don't know who it's from! Please scroll down to the second picture and if it from you - please let me know in the comments section or email me. I would feel terrible not getting a thank you note out to this person. For some reason I'm wondering if it is from someone who has brought food to us. But I just can't remember.

My brain is seriously not functioning well right now. I am having a terrible time remembering things and it is frustrating. But I imagine that will get better soon.

I've been pondering the following two questions today.

1) There are widows, widowers, and orphans. Why is there no name for parents that lose their children?

2) When someone asks how many children do we have, how do I answer? Two with us and one with Jesus?

I don't know. I think I'll go back to wandering through the house and looking at all the flowers!

[Jesus speaking] "Which of you by worrying can add one cubit to his stature?'So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these." - Matthew 6:27-29

We ordered Lilly's gravestone today

After Lilly's burial on Monday, we went to stay with my mother-in-law, who lives about 30 minutes from the cemetery. It was good to stay with family and not at our home for a few days.

On Tuesday, my mother-in-law had the lovely plan of going and seeing a couple of the family homesteads and eating at my sister-in-law G's bakery. My other sister-in-law, N, came with us and we had a good day. On Wednesday we helped my mother-in-law with things around her house. It was very satisfying to accomplish some projects for her. It can really keep your mind off yourself when you help others.

Tuesday morning at breakfast, my son announced he wanted to be buried next to Lilly. And he wanted to be buried with her other caterpillar. He's so sweet. I told my husband we needed to get plots for us at the cemetery Lilly is buried at. We hope to do that before too long. Lilly was buried next to my husband's youngest sister who died in her teens and across from my husband's father. It gave me great comfort to bury her by family.

Today we went to the funeral home and ordered Lilly's gravestone. I had actually designed it before Lilly was even born. It will have her name, birth and death dates, and that she is our beloved daughter. In the bottom left it will reference "2 Samuel 12:23" and on the bottom right will be an engraving of an Easter lily flower and cross. The stone will be a polished gray color. I can't wait until it is ready.

I was afraid to come home this afternoon. I felt sick inside I dreaded it so much. But it's going OK. Walking in I was so touched by the huge stack of sympathy cards and gifts on our table. And the whole house smells like lily flowers! We have a number of bouquets and plants we received and they are all so beautiful. And as I type this I have a picture of Lilly propped next to me and she is just so cute! What a beautiful little girl God created in her. I ache to hold her. But I still feel so very grateful that we had her 17 months! The majority of families with Trisomy 18 children don't get to do that with their babies.

"Surely God is my help; the Lord is the one who sustains me." - Psalm 54:4