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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, December 30, 2011

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

Thursday, December 29, 2011

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.

Tuesday, December 27, 2011

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

Monday, December 26, 2011

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

Sunday, December 25, 2011

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!

Friday, December 23, 2011

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

Thursday, December 22, 2011

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

Monday, December 19, 2011

My Grave side Reflection from yesterday

Our family drew great comfort from Lilly's funeral service and burial yesterday. We are so greatful to everyone that joined us - either in person or in spirit. I will be posting details about it soon, for those who were unable to attend.

I have had a number of requests from people wanting a copy of my husband's reflections on Lilly that he gave at her funeral service. He handwrote it out so I will transcribe that soon in the future and post it here. I gave my reflections at Lilly's grave side. I had typed mine out, so I copied and pasted it below.

What follows is not what I said verbatim, but it is generally what I shared. I found I was so excited to be in front of everyone talking about Lilly that I didn't end up needing to read it exactly.

Lilly’s Mamma’s Grave Side Reflection

My husband Frank has already shared a wonderful summary of Lilly’s story at her funeral this morning. I have the need to talk about Lilly too. But I think that I am somewhat still in shock and my brain feels confused. It is strange not being able to share as I’m used to since it’s been so easy to write Lilly’s blog. But maybe it’s because it’s always been easier for me to share by writing rather than talking. I have written 355 blog posts since I started it August 12 of last year! Lilly certainly gave me enough material during her 17 short months. Life was never dull with her! Every time things would seem like they were settling down Lilly would pull a fast one on us. My mind is still swarming with ideas so I will probably continue to update it for awhile, in hopes that it may bless others. I know that I have been helped by looking at the blogs of several Trisomy children that have died this year because their mothers have continued to post. I sincerely thank you all of you who take the time to read Lilly’s blog. I never thought we would get as many readers as we did. I still am wondering who are all these people that read the blog in places like Pakistan, Russian, Hungry, and Israel? We remain humbled by the number of people that have taken such a genuine interest in Lilly and are grateful beyond words for your support and prayers. We feel it and that is what is getting us through this.

Anyway, I finally decided that what I wanted to share about Lilly was simply what an average day was like with her. Not her days filled with sickness or going to doctors. (I still shake my head about the number of doctors Lilly had. Types of doctors I had never even heard of.) But about our favorite days. Just the regular days at home.

Lilly was my living baby doll. (Tabby’s too - whenever she carried her in public people often thought Lilly was a doll at first!) Just about the only time I was ever apart from Lilly was during my weekly grocery shopping. I just refused to take her to Walmart aka the germ factory! But other than that, I was pretty much constantly with Lilly, day in and day out. I LOVED it and I don’t recall ever thinking I needed a break from her.

Every morning when I woke up, I would thank God for another day with Lilly. Then I would set up “Lilly T.V.” [explain] On a typical day, Lilly would wake up anywhere between 8:30 and 12:30. As I sang her her good morning songs, I would take what we called her “boxing gloves” off her hands (they were splints to help train her hands not to clench so tight) and unhook her from her feeding pump. And up until last month, I would unhook her from her oxygen. (It was glorious for Lilly to not be on oxygen at night for a whole month!) I’d carry her downstairs for a diaper change which she loved. She was one of those babies who liked being “clothing free.” Then suction her nose, clean her g-tube area, and get her dressed for the day. Big sister Tabby usually liked to be the one to do her hair.

If it were before 10:00 a.m., Lilly would then join Hunter and I for pre-school. [explain] Hunter loved when Lilly would join us. He loved his baby sister and would kiss her and tell her he did. He’s our expressively affection child. Then it would be time to help Tabby with some of her homeschool lessons. Lilly would usually be in my lap during this time. Or Tabby’s lap during Literature. I have to put in an aside here - there are many many reasons I am grateful that homeschooling is legal. But a big one is that homeschooling allowed Tabby to be home every day with Lilly. She got to spend a maximum amount of time with Lilly and learned lessons that no school room could ever teach her.

At lunchtime Lilly would sit in her bouncy seat and bop the animals hanging on the arch over it. If it were a nice day we would go for a walk. Unfortunately that didn’t happen as much as we would have liked though. We didn’t want to take her out if it was too hot or too cold or too windy or there was too much pollen. But when we did go, she enjoyed it.

During the afternoon I would take 20-30 minutes to do some therapy with her. I kept good notes on things her regular physical therapist and her occupational therapist did with her so I could do the same things. This was truly one of Lilly’s favorite times of the day. She LOVED to stretch and practice sitting and standing and play with her dried beans and get into crawling position, etc. She just loved to work! Both therapists always said Lilly was such a hard worker. One commented once that Lilly wasn’t all whiny like a lot of her patients. I loved that! Lilly especially loved when I rolled her back and forth. This was a guaranteed smile and look of pure delight on her face.

Every hour to hour and a half of Lilly’s waking time, I fed her. It was called a bolus feed where we hooked a tube to her g-tube and then filled a big syringe with an ounce of pureed food or breastmilk or water and fed her. I took such satisfaction in this. As Lilly’s mamma I had such a need to feed her well. One thing I learned when Lilly got her g-tube put in this past May, was that most people with g-tubes simply eat man-made liquid formulas. I knew they are supposed to be scientifically balanced and all, but I just didn’t like the idea. I found out about a book that was all about giving your g-tube fed child real food. I got really into it and started pureeing foods for Lilly. I would puree foods in the blender then pour them into ice cube trays and freeze them. Pop them out frozen into baggies and store in the freezer until she needed them. Lilly was eating so healthy and I was so excited about it. I want to post a list on the blog soon of all the foods she was eating before she died. I was so proud of her! The day she died, I had pureed chick peas for her to try. They’re still in the ice cube trays in the freezer. I’m disappointed I never got to give her any. I was so into the every hour pattern of feeding that I am feeling rather lost without it breaking my day up.

Around 3:30 or 4:00 it would be time for Lilly’s nap. I would lay her down on a soft pallet on the floor and put toys by her and her mirror. She would smile and talk to her reflection in the mirror as she fell asleep.

Depending on when she fell asleep, I would wake her up at 6:00 or 6:30 so she could eat and also because we didn’t want her awake all night. She would usually greet daddy first. He was almost always guaranteed a big smile from her. Except when she would tease him and pretend to be aloof. (He would try to make eye contact with her and she would keep moving her eyes away every time he got in her line of vision.) Then it was time to eat and join us for family worship time. Next she would help me get Tabby’s school assignments for the next day in order. Then it was usually playtime with Daddy for awhile.

Tabby liked to dress Lilly in her pjs most nights and even made up a song to sing about it to her. She was such a loving big sister. At bedtime, I would lay Lilly on our bed and she would begin to look expectantly at the ceiling fan, waiting for Frank to turn it on. Oh how she loved a ceiling fan! I would put Lilly’s handsplints, aka boxing gloves on her and she would pretend to box Daddy in the face. Then he would tell her good night. Lilly and I would be night owls for a little while and snuggle and kiss and smile. Then when I laid her in her little co-sleeper bed next to me, she would just grin so big. She loved “Lilly’s bed.” After I had her tucked in and blessed her she would then start looking in the direction of the lantern I kept on at night so that I could peek at her when I would wake. She would then fall asleep looking at that light. And I would lie down and fall asleep looking at her while praying over her.

So I hope that wasn’t too boring to listen to, but that was a typical Lilly day. We had a general routine, peppered with lots and lots of hugs, kisses, and smiles. Lilly was such a happy and content little thing, always patient and only crying if her tummy hurt. She loved to watch her siblings and be apart of everything that went on. Because she was such a part of everything, in her own little way, I know that when things settle down again that will be when we miss her most. A regular day without Lilly just will be filled with huge voids.

However, I really can’t complain. God was so merciful and generous with us and allowed Lilly to live longer than most babies with Trisomy 18. When Lilly was first born and I would talk about how I needed her to be around longer, Frank would tell me that it would probably just keep getting more difficult to let her go the longer she was with us. When Lilly was really sick and I would say that it wasn’t a good time to for her to die, he would remind me that there would never be a good time. He is right.

It wasn’t until the last few years that I really began to believe that God is sovereign in all things. I used to think that God initially set the world in order and then just sort of let things go and really wasn’t involved much other than answering a prayer occasionally. But in watching Lilly’s life, I know that couldn’t be farther from the truth. I could see God in Lilly every day. I have learned more things during our Lilly’s life than I have ever learned before. And I will always be indebted to Lilly for that. And to God for creating Lilly in the first place.

The closing thought I wanted to share is that special needs children really are special. I often said that Lilly’s equipment took more work than she did. I saw that her seemingly limited knowledge was really a blessing. Life was simple to her. She knew she loved her family. She loved her toys, especially Hank the caterpillar who is buried in her coffin with her. She loved her days at home. And she loved all these purely and freely. She was joyful. She was more consistently joyful than any one of us will ever be. She was one of God’s little angels that was simply on loan to us for a too brief of time. But she was a glimpse into His glory. I am grateful beyond words that she was my daughter. We loved her just as she was, Trisomy 18 and all. I admit I still hate the short life span and all the sickness that goes with T-18. But there really was so many endearing things about it. Like Lilly’s extra long eye lashes and absolutely crazy cowlicks.

The hardest thing I’ve ever done in my life was last night when after the visitation I held Lilly once more. Then I had to lay her in her coffin and walk away from her. This just seems unnatural for a mamma to leave her baby. It made me long for the old days when you could keep the body in your house for a week. But I know even that wouldn’t satisfy me. It just doesn’t feel right not to have my Lilly in my arms anymore. But I know now that the easiest and most wonderful thing I’ll do one day is to die. I can not wait to see my Lilly again - to see her whole and perfect - and to be in the arms of my Jesus who welcomed Lilly there. Praise God that this life is just a short phase until the next where we will be for eternity.

Sunday, December 18, 2011

Lilly's Obituary

Lilly's Obituary is in two of today's newspapers. The News & Observer (Raleigh, NC) and The Washington Daily News (Washington, NC).

The link to the Obituary in the News & Observer:

The Washington Daily News:

If you get one of these newspapers, but don't plan on keeping today's edition, we would be so very grateful if you would let us have the section with the obituaries. We would like to have a number of copies. THANK YOU!

Saturday, December 17, 2011

Sweet Lilly's last day on earth

I wanted to share some details about Lilly's last day. This may be a long post, but bear with me. I have the need to get it all written down for our family record.

It was a wonderfully happy ordinary day! In fact the first half was so ordinary I have suddenly found myself hazy on the details. Lilly woke up and we did her usual morning routine. She was happy and smiling a lot. I got lots of neck sugar from her! Her congestion seemed a bit better, though she was coughing occasionally a cough that sounded a bit barky. I did her nebulizer treatment, gave her the antibiotic, and she had yogurt with it. (I had planned to do a post soon about how Lilly's blenderized real food diet via g-tube was going. I still want to in case it helps someone else. So that will be forthcoming.)

While I was washing Lilly's things in the sink, I had her in her bouncy seat. That was when she was really playing well and I got my camera and shot a short video. I'm so thankful I did!

In the early afternoon, Lilly had physical therapy. She did great, working hard, and seemed to be really enjoying practicing sitting. Her therapist even commented, at least once, that it was hard to believe Lilly was sick because she was acting the best she had since we brought her home from open heart surgery last month.

It really seemed that overall Lilly was doing well. I knew she still had some congestion so that something was going on inside. But she was on the antibiotic, and Xopenex, and was just acting so Lilly-like that I thought she was really on the mend.

Lilly was usually in my arms, lap, or close to me throughout the day every day. That day was no different.

After a feeding and nebulizer treatment, Lilly and I sat on my exercise mat while I did my afternoon set of exercises to try and heal my diastis. (My stomach muscles are still split apart some from being pregnant with Lilly.) She laid in my lap for one type of exercise, then we both laid down on the mat for the other. This always made her grin!

At this point my husband came home from work early because he had been at the dentist. (Praise God for that appointment or else he would not have seen Lilly alive that day!) He enjoyed coming in and seeing Lilly laying there smiling. He held Lilly some and talked with her. Then it was time for her afternoon nap so he put her down on her pallet where she always naps. She had her toys around her and her face turned towards her mirror. She loved looking at herself in her mirror as she feel asleep!

Lilly fell asleep pretty quickly, which was normal.

We usually let her sleep until about 6:30 p.m. She often woke before that, or around that time. I liked to feed her and we liked her up by then so she'd be sleepy at bedtime. But this evening she didn't. And because she had been sick, I decided that we'd let her sleep until 7:00. So we had our family devotion after dinner. Then I went to wake her.

As I usually did, I knelt down by her and started speaking to her as I pulled off her blanket. When I did I suddenly noticed she felt cold. REALLY COLD. I exclaimed "Oh my poor Lilly!" and grabbed this flannel blanket and began to quickly wrap her as I lifted her up.

Then I saw her face.

The coloring was completely wrong. It resembled some of the pictures I had seen in a class I took on death investigation back in college.

I yelled that something was wrong and told my husband to call 911. He did and then began trying to do CPR. I ended up with the phone in my hand. The operator kept talking to me and asking me questions. It was all I could do to keep from screaming at her as I found her questions so irritating. I knew she was doing her job. But I just wanted the paramedics there. It was too hard to focus on a phone conversation.

They arrived within minutes and grabbed Lilly. I ran with them out to the ambulance which was parked in our driveway. We got in and they immediately began trying to revive Lilly. (We didn't go anywhere but stayed in the driveway.) Lilly looked like a rubber doll lying there. I held one of her little hands as they worked. I felt numb with shock. Perhaps that was good though, I was able to mechanically answer all the questions coming at me about Lilly's complicated medical history. I appreciated the group of paramedics. Especially one that had a scripture bracelet on. I even thanked him for wearing it.

From what I could see out of the ambulance, it looked like the street was filled with flashing lights. I later learned there was a fire truck, another ambulance, and many police cars. Neighbors too.

Lilly wasn't responding to anything they tried. They told me that they would keep trying as long as I wanted them too. My husband was finally able to join me. We decided that it was time for them to stop. Lilly wasn't coming back.

A certificate of death was needed. They asked about calling Lilly's doctor. I said "Which one? She has so many!" But I remembered that her pediatrician had been ready to do this, at the end of Lilly's first week, when we thought she was dying. So they said they would try and reach her. And they left my husband and I alone with Lilly in the ambulance.

The first thing I did was to carefully re-dress Lilly. Then I wrapped her back in the blanket and held her tight. I hummed "How Firm a Foundation" - her favorite song to her. I talked to her about God and Jesus and heaven. I told her I loved her. I kept kissing her. Then my husband held her for a little while. He prayed. Then I got her back. Her head was cold but she felt just right snuggled in close.

Finally the pediatrician was reached and she said she was on her way to our house. My husband went in and talked to T. our 10 year old daughter to see if she thought she wanted to see Lilly. She did. So we took Lilly back inside the house, and all the vehicles left, except a police officer that was waiting for the pediatrician.

My brother P., and mom and stepdad were inside with T. and H. (our 3 year old son). After a few minutes, T. was holding Lilly and crying and talking over her. It was so precious! Then she gave her back to me to hold so she could do Lilly's hair. She gave her the "Lilly bug" hairdo. (Looked like Lilly had two antennae sticking up on her head!) Then H. got in my lap and I helped him hold Lilly for a few minutes. When he got back down I snuggled Lilly as close as I could again.

The pediatrician arrived and hugged us and checked Lilly's pulse. It was obvious she really cared about Lilly. She stayed extra and hugged on T. and talked to her. The next day she even sent T. a peace lily plant! A "lily" to give her "peace."

It was starting to get late now and my husband went to call a funeral home. He opened the phone book. We should have had a plan all ready but we never did. He stood looking at the page but not knowing who to call. My mom suggested one that she had been at recently. I really liked the picture in the ad of that home (a large old house) and so my husband called them.

It wasn't too much later that a man from the funeral home arrived to take Lilly. I couldn't stand giving her up. But I did know I couldn't hold her forever. T. was so worried that Lilly would be cold at the funeral home. But when the man came in, he had a big, thick pink blanket with him and he had me wrap Lilly up in it. And he said for us to tell our children that he would keep Lilly safe and warm!

I kept the flannel blanket I had had Lilly wrapped in and held it close as I watched him carry our precious baby's body out the door. (This flannel blanket is very special - it was made for Lilly by the sister of a Trisomy 18 baby that had died. See the link above to read the story. I thought about this baby Hannah Grace meeting Lilly in heaven. Along with Lilly's Pop and a number of other Trisomy 18 babies who I was familiar with.) I told the man to keep the clothes Lilly was wearing safe because I wanted them back. Even her cloth diaper! (She was wearing new sock monkey pjs from my cousin M.)

The blanket is now in Lilly's co-sleeper bed, which is still by my side of the bed. I love to touch it.

I really didn't cry so much until the next day. (Yesterday.) Even now, I think I'm still in shock. And we've just been so busy that it hasn't really sunk in. But I am feeling the huge void of Lilly not being here. I have the need to take care of her still. And so I'm feeling lost without doing that. Without getting her neck sugar. Without holding her.

But it really does give me great consolation to know that she is in heaven with a Lord and Savior that love her even more than we possibly can. It amazes me that that is even possible! But I know it is!

"But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast." - Ephesians 2:4-9

Our Little Bride of Jesus

Today our family went to the funeral home. I dressed Lilly and my daughter T. did her hair. I put a vintage christening gown on Lilly that I had gotten in a consignment store quite awhile back. It fit wonderfully! A slip, gown, and over-jacket. I put on a soft cloth diaper. (I know she doesn't need it but it just seemed right!) And a lace diaper cover. Her lace "church socks" and her knitted black Mary Janes. T. put Lilly's hair up in a band and then clipped on her pink bow. I put on Lilly's birthday bracelet (red, blue, white pearls, and silver). And finally a new necklace that I had gotten her for Christmas. It is a pearl, a cross, and an "L" on a silver chain. Beautiful.

I bought Lilly the necklace from a dear woman I know who is pregnant with a boy with Trisomy 18. He is due New Years Day. Please pray for this family and sweet baby. You can buy beautiful handmade jewelry from her at:
(See an upclose of this necklace in today's last photo.)

I was so proud of T. for being able to fix Lilly's hair. What a brave, strong girl!

After I laid Lilly in her beautiful white coffin, my husband carried Lilly into the room where the viewing will be held tomorrow.

We all gave Lilly kisses.

We decorated the room with photos of Lilly. Yesterday we made a big collage on a posterboard and wrote Lilly notes. It was so theraputic.

We continue to be so thankful for all the blog comments, the e-mails, the phone calls, and the visits. It is all very encouraging.

This morning our pastor came over and we worked out the order of the service for Monday. Our pastor and my husband will be speakers. I want to speak too, but I am going to speak at graveside.

Speaking of the burial, the time for that has changed from 4:00 to 3:30. We will have directions to the cemetery at the service Monday morning. Please know that we don't want anyone to feel obliged to make the 2 hour drive to the burial. Do what is right for you and your family.

We continue miss Lilly terribly yet all smile as we imagine her in heaven and how she's so perfect and happy. It's so exciting to talk about! A place where:

"‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, . . ." Revelation 21:4

Friday, December 16, 2011

The Lilly Memorial Fund

Our church has set up the below. I am posting because of the many inquiries.

The Lilly Memorial Fund has been established to help with the many medical expenses Lilly incurred. Checks may be made payable to Christ Church and mailed to P.O. Box 1034, Cary, NC 27519. Contributions will also be accepted during the Visitation at Thomas Funeral Home in Fuquay-Varina and the Funeral at Peace Presbyterian Church in Cary.

Flowers may be sent to the Thomas Funeral Home in Fuquay-Varina, NC.

Funeral arrangements

Here are the flowers that the funeral home brought to our house this morning.

Here is are plan for Lilly's funeral:

Viewing: Sunday, Dec. 18 from 3:00 - 5:30 p.m. at Thomas Funeral Home, 401 N. Ennis St., Fuquay-Varina, N.C.

Funeral Service: Monday, Dec. 19 at 10:00 a.m. at Peace Presbyterian Church, 1777 W Chatham Road, Cary, N.C.

Burial: Monday, Dec. 19 at 3:30 p.m. at Oakdale Cemetery, 180 E. 15th Street, Washington, NC

Thank you everyone for the kind comments you have been leaving on this blog. It is so encouraging and comforting to read. Thank you for your prayers. It hurts so bad I don't have my baby to hold anymore, but by God's grace we are feeling His comfort. And we are smiling through our tears as we picture Lilly in heaven "running and leaping and praise God!"

Thursday, December 15, 2011

Lilly is in the arms of Jesus

My heart breaks to say that Lilly went home to be with her Lord and maker this evening. She passed away in her sleep, after having a good day.

"The LORD gave, and the LORD has taken away; Blessed be the name of the LORD.” - Job 1:21

[King David when his baby died] "But now he is dead; why should I fast? Can I bring him back again? I will go to him, but he will not return to me.” - 2 Samuel 12:23

Lilly boxes her friends

Lilly's nose is much better today. We're not having to suction it nearly as much. She is coughing more though. But that's supposed to be a good thing - to help loosen stuff up. Her cough is a little too close to "bark like" for my taste (thinking of croup) but she is very happy today. She enjoyed her physical therapy and worked hard at sitting.

This morning she was really wacking her "friends." That is what we call the animals on the arch on her bouncy seat. A turtle, snail, and frog. Lilly can pull the loop on the frog and play the music. Here's a little video of her bopping everyone one:

Wednesday, December 14, 2011

More junk for Lilly to get out

I'm not sure if we're in a new phase of Lilly's illness or if she now has a cold. (Her brother seems to have a light cold today.) Off and on all day her nose has been running with thick greenish yellowish stuff. I use the NoseFrieda to suction her nose and the stuff I'm getting out has actually turned my stomach a few times when I clean out the nose sucker after a suction.

Nice image, huh?

But we do what we need to do to try and help our kids. Even when it makes us queasy!

Lilly is getting irritated with having her nose messed with, but other than that seems OK today. For the past two mornings she has spit up shortly after having her antibiotic - and I can smell the medicine in the spitup. I hope she is keeping enough inside to help her properly. (She gets a dose at night too.) I'm trying to give her the medicine with yogurt, to help her stomach. It's been working for the most part.

I took the pictures I posted today this past Saturday. It was my second round of having all three kids in front of the Christmas tree to try and get a good picture for our annual Christmas card. NOT EASY TO DO! I'm glad I'm not a professional photographer. Group pictures are hard. Seems like someone either blinks, makes a bad face, turns out a little blurry, or something.

Yesterday my husband got an e-mail for us from A.W., a friend of his mother's. She shared some kind thoughts and ended with a poem entitled "Hope" by Emily Dickinson. I thought that was neat since I had mentioned hope in yesterday's post. I admit I'm not a huge fan of poetry (though I used to crank it out as a kid) but I liked the poem enough that I have posted it below.

Hope - by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

Tuesday, December 13, 2011

Get the junk out Lilly!

Weight check = 13 lbs. 1 oz.

Lilly is still doing well overall as her body fights the lung infection she has. She's still on an antibiotic and will be until Saturday. We're doing three nebulizer treatments a day. And lots and lots of hard back patting. (I can actually feel congestion breaking up in her as I do this to her.)

I had my 10 year old daughter "nebulize Lilly" yesterday for the first time. What a blessing to have her help! Though if you look at today's second picture you'll see that Lilly looks like she could just about nebulize herself.

Lilly has had A LOT of mucus coming out the past two days. Big traumatic spit ups - food mixed with lots of thick junk. But we're so glad it's coming out. Lord willing that means she's getting better! This morning's spit up was so messy she had to have a bath. I don't think she minded the bath part. She loves her bath!

Yesterday the genetic counselor that saw us when I was pregnant with Lilly contacted me to see if it was OK with me if she used some pictures and excerpts from this blog in an upcoming presentation she is giving to various medical and laboratory professionals in genetics. I am so excited for Lilly to be used as a positive example! (This kind woman made the red, white, and blue quilt that is behind Lilly in my blog header. You can read that story here and see a picture here.)

Here is a wonderful story about a woman with Trisomy 18 that lived to be 28 years old!
Every time I see a story like this I think "why didn't I find something like this when I was pregnant with Lilly?!" Hope is a wonderful thing.

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

To "Anonymous" that asked for prayers for herself and her mother in recent comments - we are praying for your requests. ANYONE that would like us to pray for them - please follow Anonymous' example and leave your prayer requests in comments. It would be an honor for our family to pray for you.

Saturday, December 10, 2011

What a weird illness!

Look at Lilly's smile in these first two pictures. Does that look like the face of a girl that is sick? This pneumonia - or whatever it is - that Lilly has is so strange. She does tire a little more easily. But other than that, it is business as usual for her. She's happy, chatty, tolerating her feeds well, loving her stretching and practicing sitting, and sleeping well.

The only evidence we can see/hear of her being sick is that we can hear her congestion rattling off and on. Today has been good - she has been coughing even more and getting some junk out.

(Last picture) Lilly enjoyed being outside this afternoon as we put up some Christmas lights and garland. Our lights are pretty pitiful - just about every string has burnt out sections. But hopefully the overall effect at night will be fine.

One of my special Lilly prayers has been to stop and thank God for that exact moment with Lilly. I have been praying that a lot extra today, after talking to a woman today that is honoring her angel baby, Lakia, today on her first birthday. (She died in September, at 8 momths. Trisomy 18.)

I have been learning to do that prayer for many more things in my life. Another Lilly Lesson.

Thank you God for this moment. For my warm sleeping baby in my lap. For all the people reading this that pray for Lilly. For caring about us so much you sent your son to die for us. In Jesus name, Amen!

Friday, December 9, 2011

Annual angel ornament

Lilly is having a good day. She slept until 12:55 this afternoon. Didn't set the pulse ox off too much. She woke up around 1:00 a.m. last night and was talking and blowing raspberries and when I leaned over to look at her she grinned at me. I think I slept a little better after that since she was obviously feeling pretty good.

She still has plenty of rattling congestion. Though today she has coughed more and gotten some up, which is great. She had occupational therapy today and all that moving seemed to help get some more stuff up too. She worked hard and enjoyed it. The therapist and I were ready to stop her session early if she seemed tired but she didn't. She wanted to do a lot of sitting today (can't sit completely on her own yet) and reaching. This was really the best she's ever done in reaching during therapy.

After therapy I pounded her back some and got more junk out. Then she fell asleep, as she often does when I do that. She really is handling this pneumonia well. But we are continuing to be very cautious and observant. (Like we ever even get a break from that!)

I took the picture posted today this past Sunday when we decorated the tree. I gave Lilly an angel ornament with her birthstone (July) and her name engraved on it. (I give each of my children an ornament for their own each year. If you want to see Lilly's ornament from last year, click here.)

"For he will command his angels concerning you to guard you in all your ways;" - Psalm 91:11

Thursday, December 8, 2011

Hangin' In There

Lilly slept soundly for about 13 hours last night. Her pulse ox alarm woke us up a number of times. She dipped into the 80s about every 2 hours. But the numbers jumped back to the low 90s quickly. Not great but not horrible. (These numbers represent the saturation percentage of oxygen in the blood.)

When she finally woke up, she was smiling and happy. She ate, had a breathing treatment with the nebulizer, then lots of back patting.

As she is napping this afternoon, I have been so encouraged that her numbers on the pulse ox are ranging from 97 and up! YIPEE!! Definite answer to prayer. Lilly is not out of danger yet, but this is improvement.

The pulse ox is one of our most important pieces of equipment for Lilly. It's one thing that we will always want to have for her. So we decided that there was no point in continuing to rent one, and just bought one. (Thanks cousin M. for helping finding one!) (2nd picture - You can see it in the right corner of the changing table that Lilly is napping on.) So far it's working well and is much smaller than the huge one we're renting.

My son - the little mechanic - loves all of Lilly's medical equipment. He's fascinated how everything works. Today he wanted me to make
a pulse ox for his Doggie. He stayed busy with it all morning, and would talk about Doggie's numbers not being good, or that he liked the quiet alarm on Doggie's pulse ox, or the sensor needed changing. It was pretty funny.

Though it also reminds me how different life is for siblings of Trisomy 18 children. (Or any special needs child.) On Monday as my son and I were walking through the parking lot to the emergency room with Lilly he exclaimed "This is a hospital where Lilly almost died at!" I confirmed "Yes, one of several."

This morning I read about the apostle Paul pleading with God to remove a "thorn" from his side. (The Bible doesn't specifically state what that thorn was.) It did make me think of Lilly as I thought about God's reply to Paul:

"'My grace is sufficient for you, for my power is made perfect in weakness.'" - 2 Corinthians 12:9

Sometimes all this stuff with Lilly seems so hard and overwhelming. But God's grace IS sufficient for Lilly. And us.

Wednesday, December 7, 2011

Urgent prayers needed! Lilly is sick. Again.

Today's picture - Lilly waiting for a chest x-ray. Turned out she had good reason to look a bit annoyed! They had to re-do it a second time because their computers wouldn't send the images to the pulmonogist. That made Lilly MAD!

After listening to Lilly's chest and lungs this afternoon, Dr. H, Lilly's pulmonologist, ordered an x-ray. I was sad to see the results. There is a large white mass behind her heart. Dr. H said it probably started out viral, but has consolidated. Perhaps bacterial.

She said to start Lilly on the antibiotic that we had a prescription for, do several nebulizer treatments a day, and lots of back patting to help loosen the gunk. She was pretty amazed that Lilly didn't have a fever and was so happy, smiling and chatting.

Dr. H said she felt "very protective of her children" and asked if I would like her to have Lilly admitted to the hospital right away. She is concerned about Lilly's record. How things come on fast all at once.

I thought about it but declined. I promised we would continue to monitor with the pulse ox and if her levels dropped or her breathing got bad again, then we would take her right in.

It's a hard decision. Very hard. We've certainly had a number of scares with Lilly. But right now, in spite of being so sick, she is happy. (She's in my lap right now grinning at me!) And she is sleeping normally. If she were in the hospital, she would be very agitated at staying in bed with all the monitors on and she would have her sleep frequently interrupted. (Sleep is important for healing!)

So - we'd rather her have a better quality of life right now at home. And we're praying like crazy that this pnemonia - or whatever it is! - will clear up quickly and Lilly can just work through it safely staying home.

Please pray that with us. And THANK YOU! We are so grateful!

“For with God nothing will be impossible.” -Luke 1:37

“'For I will restore health to you and heal you of your wounds,' says the Lord." - Jeremiah 30:17

Tuesday, December 6, 2011

More details about yesterday's emergency room visit

Weight check = 13 lbs. 2 oz.

Yesterday Lilly woke up early and sounded congested and her breathing wasn't quite normal. There was a little pause between breaths at times. I spent from 5:30 - 7:30 a.m. pounding on her back and chest and suctioning her nose and wiping mucous from her mouth. It helped some and she seemed to feel better when I did that. But off and on during the morning she made wheezing sounds.

So I tried a nebulizer treatment. That didn't seem to have any effect on her. Hooked her up to the pulse ox and her numbers were OK. Wondered if Lasix would help so I gave her some of that. Then I rubbed Lympha Rub on her chest and neck and sat with her in the bathroom with the shower on hot. Results weren't good enough.

By this time I was feeling almost sick from the constant knot in my stomach. The special "Uh oh what is happening with Lilly! knot." I called my husband to tell him I was taking Lilly to the emergency room. The breathing reminded me of the two times she had viruses, both of which just about killed her.

I packed for the hospital in record time and my son and I rushed with Lilly out the door. She was actually acting normal, but her breathing was still wrong. We headed to a hospital about 40 minutes from here. The one with the children's emergency room and best-PICU-to-stay-at if you have to stay.

Once we were in the emergency room I told them I wanted a chest x-ray done on her and an RSV test. (She's on Synagis, but just in case!) The RSV test came back negative, thank God. The x-ray showed some white spots. As I said in yesterday's post, the cardiologist on call said Lilly was in early heart failure and to re-start her Lasix.

Dr. S, the emergency room doctor (who knew my husband - how great to have a connection!) said we could leave or stay - whatever I was comfortable with. Lilly was smiling and carrying on (today's picture) so I said I would like to leave. That we have a pulse ox and oxygen at home. And that we'd be back if it got worse.

Today I heard from Lilly's regular cardiologist, Dr. R. He disagreed with the other cardiologist's conclusion. (I was amused that the cardiologist on call was "Dr. C" whom I mentioned here. I wonder if he was surprised again that Lilly is still alive.) Dr. R said that her heart is completely repaired and there is no reason for heart failure. He said viral pneumonia will give the same chest x-ray findings as heart failure, but that heart failure will not cause the wheezing and congestion. Lasix won't hurt, but it may not do much. And to please take her back to the ER if her breathing got worse.

I had Lilly on the pulse ox all last night. Her numbers weren't too bad and she slept all night long and until 1:00 today when I woke her up for physical therapy. She still seems a bit congested but her breathing is pretty normal. She seems to be feeling well. Her therapist thought she seemed even more like herself that she did last Friday.

I am glad that Lilly has a pulmonologist appointment tomorrow. Maybe we can get another x-ray or even an echo done to check on things.

Never a dull moment with Lilly!

"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall." - Psalm 55:22

Monday, December 5, 2011

Back home from the emergency room

Amazingly we're home from the hospital - Lilly's shortest hospital stay ever. Turned out her heart was beginning to fail. They think it was because she came off her Lasix (heart medication) too soon. So, Lilly is back taking Lasix once a day for awhile. I am SOOOO glad I took her in.

I'll post a little more detail as to what exactly happened asap. For now I need to just sit and snuggle my Lilly.

Thank you everyone for your prayers. Thank you dear God for your continued protection.

Going to Emergency room

Lilly's breathing isn't right today. She's acting fine. But I'm scared. Taking her to the emergency room to have her checked. Please pray for her!

Saturday, December 3, 2011

Cutting a Christmas Tree

Today we made our annual trek to our favorite Christmas tree farm. It was so wonderful having Lilly with us again this year to go! The weather was sunny and cool - perfect! Lilly wore her sunglasses and Santa hat and seemed to really enjoy herself.

We got to go on a hayride around the farm, pulled by a tractor. (Our son made sure he could watch the tractor wheels going around.) Then after we found the tree we wanted, my older daughter and her dad cut it down. We rode with it on a trailer hooked to a four-wheeler back to the parking lot. (Our son was thrilled with those wheels too.)

The farm has a farmhouse on it that was built in the late 1800s. Wish we could see inside! We love old houses! They have a swingset and one of those inflatable jumps for visitors. My oldest wanted her brother to jump with her in it. But all he wanted to do was watch the generator powering the jump.

My only disappointment to our outing was that my camera batteries died early on. Too bad - it's such a great place to take pictures.

If you want to see Lilly from last year's Christmas tree farm visit, click here. She's changed a lot! (And thank God - again! - that her NG tube is gone!)

Thursday, December 1, 2011

Celebrating the first day of December

December 1st! Wow - where has the year gone? Lilly's brother and sister got their annual chocolate advent calendar this morning. Lilly is not jealous - at least not yet - she hasn't seen them. She slept until 1:30 this afternoon! (She averages between 8-14 hours a night. I've gotten the idea that in the Trisomy 18 world that is a huge blessing! Seems that many of these children don't sleep much.)

This evening Lilly got dressed up in her new red velvety dress and snowflake stockings (courtesy of her Mah-Mah), knitted Mary Janes (made by her Aunt K.), and a brand new super soft Santa hat that I bought off Etsy ( She looked very festive. :)

We had a night out to big sister T.'s annual Keepers at Home Christmas banquet. Lilly enjoyed being out and finding new lights to look at. Everyone in our group was happy that she came. They've all been praying for Lilly during our journey with her. We are so blessed to be a part of the group.

"The prayer of a righteous person is powerful and effective." - James 5:16b