caption - title

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

Sunday, April 29, 2012

Lilly and lilies

I've had a couple days where I was getting that "I need to have a bunch of good crys" feeling.  There definitely seems to be a cycle in grieving.  But I pretty much snapped out of it yesterday when my friend K.L. drove up and she had a beautiful oriental lily potted plant for us.  She said she was out buying plants and everytime she sees lilies she thinks of our Lilly.

“The Lord bless you for showing this kindness . . . ." - 2 Samuel 2:5

I was so touched by this and the lily was was beautiful and smelled sooooo good!  I decided we needed to have it inside for the rest of the day so we could enjoy it:

Ummmm ... the flowers smelled so good!  And the colors are beautiful:

Today my husband planted the liles in Lilly's memorial garden.  How nice to have a burst of color:

After that, the kids and I came in and made some caterpillars for Lilly's memorial tree for May.  They turned out cute.  Caterpillars are in memory of Lilly's favorite stuffed toy, Hank, who is buried with her.

T. made a paper caterpillar with a space for each of us to write a message to Lilly on:

Thursday, April 26, 2012

Lilly buys herself a present

Throughout Lilly's life, kind relatives or other people would send encouraging cards with a "little money" tucked in for "something for Lilly."  I saved all that money in a jar until I could think of the perfect thing for it. 
Well I finally decided what that "special something" was.  A really great frame for the collage we made for Lilly's viewing and funeral.  I found a beautiful wood frame - in Americana red (how appropriate) in a catalog and knew that was IT. 

The frame arrived yesterday and I excited put the collage right in.  Then I noticed the large crack at the bottom of the frame.  Sigh.  Nothing is easy!  I contacted customer service and they said they would send a replacement right away.  And that no need to return the damaged frame due to the circumstances.  (I couldn't help but share what it was for so they would see the importance of it!)  So yay!

I've mentioned before about how much I love the morning sunrise.  One Trisomy angel mom recently posted this picture of a gorgeous sunset:

The caption:  "At the end of the day all the children of heaven come together to paint the colors of the sunset."

It's so easy to forget how beautiful the sky is - at so many times of the day - because we're such a self-focused culture that tends to just stay inside so much.  And much of our modern way of living does not lend itself to us fully enjoying the beauty of the outdoors.  But when we do take the time, it is so incredibly refreshing.

"And God said, “Let there be lights in the vault of the sky to separate the day from the night, and let them serve as signs to mark sacred times, and days and years, and let them be lights in the vault of the sky to give light on the earth.” And it was so. God made two great lights—the greater light to govern the day and the lesser light to govern the night. He also made the stars. God set them in the vault of the sky to give light on the earth, to govern the day and the night, and to separate light from darkness. And God saw that it was good. And there was evening, and there was morning—the fourth day." - Genesis 1:14-19

Tuesday, April 24, 2012

A before ... and after

Last month I hung all of Lilly's pretty dresses up on a rack on the wall.  I love seeing them.  But lately there are two that keep drawing my eye, just because of the big difference in them.

They are the two in this first picture.  The tiny blue dress, a preemie size, was one Lilly wore when she was just a few weeks old.  The green dress was a 9 month size and she wore it last fall.  What a difference!  When Lilly was born she was 18 inches long and weighed 5 lbs. 4 oz., but dropped to 4 lbs. 8 oz. at her lowest.  When she died, she was 27 inches and weighed a few ounces over 13 pounds.  That was a huge accomplishment for her!

Here is a picture of tiny, skinny Lilly wearing the blue dress.  She is about 1 month old.  She is laying in a wicker bed that my mother-in-law made for T's dolls!

Here is Lilly in the green dress sitting propped up.  She is chunky and happy and is 15 months old.                         

I'm sure those of you that are parents look at your own children's clothing and marvel at how much your kids have grown.  I do with my other two.  But Lilly is probably more dramatic in my mind just because it was always such a fight to get her to gain weight.  (I think mostly due to the holes in her heart.)
(Last picture) I was happy to see on Saturday that the lily-of-the-valley plants I planted are really growing and most even have flowers on them.  (The one here does but they don't show up very well in this picture.)
Speaking of lily flowers, our church had out 4 nice potted Easter lilies for several weeks this month.  This past Sunday we got to bring them home and plant them!  Our pastor suggested that we might like them for our Lilly memorial garden.  My husband already planted them and we have a nice row of Easter lilies now. 
Growth is an amazing thing.  In children, plants, and animals!  And that's just the physical aspect.  I've said many times that Lilly grew us to be better people, and we thank God for the blessing that she was - and that her memory still is. 
"For as the soil makes the sprout come up
   and a garden causes seeds to grow,
so the Sovereign LORD will make righteousness
   and praise spring up before all nations."
- Isaiah 61:11

Friday, April 20, 2012

A visitor for Lilly

The other day, I was so touched to receive an email from D., who said that she had been reading Lilly's blog for the last year after a cousin of my husband had told her about it. She said she had been at Oakdale, the cemetery Lilly was buried at, to check on her parents gravesite. She knew that Lilly had been buried in that cemetery and as she was leaving, a beautiful red, white, and blue wreath caught her eye.

D. felt it was Lilly "winking" at her and she stopped and checked and sure enough, it was Lilly's grave. She said she knelt down to say "hello" to Lilly, and to say a prayer for us.

She took the picture I posted today and said everything seemed so peaceful. I was SO happy to see Lilly's wreath was still there and intact. I had been worried it would blow away like her beautiful flowers we had placed there.

It doesn't look like we will get a chance to visit Lilly's grave this month, unlike every month since she died. (She is buried a bit over 2 hours away from us.) And that bothered me. So I was extra thankful to get D.'s e-mail and pictures that all was well. I told my husband the other day that it would mean a lot to me if we could visit Lilly's grave on Mother's Day. Somehow it would just feel more complete.

So thank you again D. for your kindness and for taking the time to visit Lilly and to contact me. My family and I are so grateful!

I have had a number of things happen in my life that have left me tending to be standoffish and untrusting of people. But so many people, including strangers, continue to reach out to us with such thoughtfulness, that it has made a huge impression on me and has really restored a lot of my faith in people. I find myself reaching out to others a lot more. So thank you God and thank you Lilly! :)

Wednesday, April 18, 2012

Lilly's baby ... BROTHER!

This morning I had an ultrasound of my rainbow baby. I'll get right to the point because I know so many are wanting two answers right away:

1) It is a boy!

2) The baby appears to be healthy and normal in every way.

Even though I knew it is very very rare to have more than one baby with Trisomy 18, I admit I felt flashes of nervousness. (That uptight feeling where I feel I can't breath well.) I was most anxious to see the hands, to see that they were not clenched. (Lilly's always were, and that is a marker in the womb of Trisomy 18. You can read my ultrasound posts about Lilly, where I mention the clenched hands here and here.)

Well this baby had both hands opened and we could see all fingers extended and accounted for. (That's it's hand waving in the last picture.) Our ultrasound tech was a very kind woman and she printed the hand picture for us, after we told her about Lilly and why I need to see the hands.

We ended up sharing quite a bit about Lilly and it was so wonderful. It turned out that this tech had even seen the wonderful quilt that our genetic counselor had made for Lilly. I showed her pictures I carried of Lilly in my purse and she was able to then put a "face with the quilt." She was amazed that Lilly looked so normal. And she really did, especially once she started plumping up! Though she kept those T-18 eyebrows. :)

The tech explained a lot of what we were seeing (much of it I knew well from having a number of ultrasounds with Lilly) and she was very reassuring that everything looked good and normal, many times.

When she was done I gave her one of Lilly's "business cards" (last photo) and she said she would post it the bulletin board for other employees to see too. She thanked us several times for sharing Lilly's story. I was thankful that she listened!

Then she took the ultrasound results to the doctor to review, and he came back in with her.

We remembered him from before, when I had ultrasounds with Lilly. I reminded him that we had been in with the baby girl with Trisomy 18. He was very interested to hear that she lived 17 months, had heart surgery, did physical and occupational therapy, and that she could smile and laugh and interact. And that she spent most of her time home - not in a hospital! He gently asked how she died, and I was glad to share that too.

I ended up giving him one of Lilly's "business cards" too after he asked if there was a way he could put other moms in contact with me, if a baby with Trisomy 18 was suspected.

All in all it was a good experience today. A chance to see our little boy, who did a lot of moving around, and then curled up to sleep in a funny position. (Which is why we didn't get any of the 3D pictures - he kept his legs and hands blocking his face.) And a chance to share that having a special baby with Trisomy 18 was something we felt was a blessing and we treasured every minute.

Two last questions to answer:

1) Did I prefer a boy or girl? I didn't have a strong preference. But I did wonder, if we had a girl, if we would be trying to make it a "Lilly clone." (Wearing the same clothes, wanting her to fill that Lilly void, etc.) And of course that wouldn't be healthy for us, or the child. This baby deserves it's own identity.

2) What names are we thinking of? Well I actually refused to think of any before today. My husband shared several he was thinking of. I need time to think now. And no I'm not ready for us to share any possibilities yet. (Some people can be amazingly opinionated when you share a name you are thinking of for a baby and they will actually tell you they don't like it or something else negative!)

The ultrasound tech said she liked the verse on Lilly's card. I do too. It fits not only Lilly, and rainbow baby, but ALL children:

"I will praise You, for I am fearfully and wonderfully made...." Psalm 139:14

Tuesday, April 17, 2012

The amazing subconscious level

This past Sunday, so many things made me want to cry but I wasn't sure why. In the evening I was sorting through stacks of Lilly pictures, a project that I had been working on a little each day all week. All week long I found myself smiling at the pictures. But Sunday they all just made me want to cry. Especially Lilly's big smile in the first picture I posted today. She was soooooooo beautiful!!!

Why? What was different? I mean there are up and down days. And I need a "cleansing cry" every once in awhile. But I couldn't figure it out.

Then Monday morning, Julia's mom posted that she missed her little girl and it was the 4 month anniversary of Julia's passing.

That was it! I couldn't believe I hadn't thought about the date on Sunday. It was the 15th! (Lilly died December 15, one day before Julia.)

That actually made me feel better to understand what was going on. I share this not for sympathy, but honestly I find it amazing, absolutely amazing, how even when we don't consciously think about something, our subconscious mind still does.

I remembered a post by Caleb's mom where she said she woke up one day feeling really down. It wasn't until a bit later that she looked at the calendar and realized why. It was the anniversary day of her son's death. So this is "normal."

I have heard from so many people that the days in general will get easier. But that anniversaries (death date, birthday, etc.) can remain hard. I'm sure everyone reading this has lost someone they are close to and find themselves thinking about that person more as an anniversary approaches. We Americans like to build up and even glorify birthdays and holidays. But I can see it can make it harder sometimes.

My intention for my family is that we create special traditions for Lilly's birthday and angel day anniversaries. My daughter T. and I have been talking about ideas. Often we can find comfort in traditions, so over time I think these expressions would be very positive.

I took the photos that I posted today shortly after we returned from Florida last November, after Lilly's heart surgery. I used the last photo on the front of thank you cards I made for several of Lilly's doctors. (Her cardiologist, the surgeons, the nurses - I think it's important to thank people, and I also wanted to encourage them to help any future children with Trisomy 18 they came in contact with.) And also Lilly's obituary.

Finally, I wanted to share two posts by Hannah Grace's mom that I found very touching. (Hannah is a little girl that lived two months with Trisomy 18.) In the first, she share her reflection, regarding Hannah, in light of this scripture:

"As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him." - John 9:1-3

In the other post, Hannah's mom shares a thought on losing Hannah, and what is to come, after posting this scripture:

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." - 2 Corinthians 4:16-18

Amen! :)

Monday, April 16, 2012

The Lily of the Valley

One of the songs we sang at Lilly's funeral was "The Lily of the Valley." My daughter T. has decided she wants to learn how to play all the songs we sang on the piano. She's still working on it, but I decided to record her playing "The Lily of the Valley" this morning. (She didn't want to be in the video, so I just filmed Lilly's angel baby picture which is right next to the piano.)

I've planted six lily-of-the-valley plants in our yard, between two Easter lilies, and yesterday I saw green shoots. Yay! Now I'm thinking of one of Lilly's nurses who would whistle "The Lily of the Valley" whenever he came into her hospital room. When we named Lilly "Lillian" we never thought of all the fun connections we'd have with lilies.

The Lily of the Valley by Charles W. Fry

I have found a friend in Jesus, He’s everything to me,

He’s the fairest of ten thousand to my soul;
The Lily of the Valley, in Him alone I see
All I need to cleanse and make me fully whole.
In sorrow He’s my comfort, in trouble He’s my stay;
He tells me every care on Him to roll.

Refrain: He’s the Lily of the Valley, the Bright and Morning Star, He’s the fairest of ten thousand to my soul.

He all my grief has taken, and all my sorrows borne;
In temptation He’s my strong and mighty tow’r;
I have all for Him forsaken, and all my idols torn
From my heart and now He keeps me by His pow’r.
Though all the world forsake me, and Satan tempt me sore,
Through Jesus I shall safely reach the goal.

He will never, never leave me, nor yet forsake me here,
While I live by faith and do His blessed will;
A wall of fire about me, I’ve nothing now to fear,
From His manna He my hungry soul shall fill.
Then sweeping up to glory to see His blessed face,
Where rivers of delight shall ever roll.

Thursday, April 12, 2012

Lilly's new Trisomy 18 ornament

Lilly has a new ornament for her memorial tree. One that I will probably leave up permanently. It has a blue ribbon (representing Trisomy 18) and that is on angel wings.

Last month, the mama of Sophee (a little girl with Trisomy 18 that lived from 11/23/10 - 6/12/11) hosted an online auction to raise awareness for Trisomy. Proceeds benefited a Trisomy support group. I wanted to help out so I bid on a few things. I won this ornament.

The auction also had a special teddy bear giveaway. I actually won that! I am so excited! I think the only thing I've ever won was 1st place in the Metallica Club contest two times in a row back when I was in college. (Ha! That feels like a million years ago! But I guess almost 20 years is more like it.) Anyway, what makes this teddy bear so special is that it is being handmade by a mom in memory of her baby girl that was born sleeping. (The baby, Maisie, had Trisomy 18.) She is using one of Lilly's flannel receiving blankets to make the bear with. I'll share more about the other special features when I get the bear and post a picture.

Thinking about this bear, and now seeing rays of sunlight stretching across our lawn, have put cheer in my heart this morning. Yay! I LOVE the sunrise - we really can't see it well in our neighborhood - too many houses and trees in the way. I hope that one day, we can move to our own little farm that's on several acres and that it will have a clear view of the sunrise. It can be such a renewing thing to clearly view another of God's masterpieces painted in the sky each morning.

"[God] is like the light of morning at sunrise on a cloudless morning, like the brightness after rain that brings grass from the earth." - 2 Samuel 23:4

Tuesday, April 10, 2012

Green in Lilly's memory garden

I was so excited to find last week a lily flower bulb has grown in Lilly's memory garden that we recently planted in our yard. As of today we have three growths like today's 2nd picture. The 1st picture today shows the little statute I got for Lilly for Easter, right outside the garden. I will probably put it inside the garden once everything grows in. (I just don't want to cover anything up accidentally by putting it in now.)

The lily plants in this garden all need direct sunlight. Last week I bought some lily-of-the-valley, which like shade, so I planted those along our fence between some Easter lilies. I also planted a pink bleeding heart right in the middle - I think that will give it a beautiful burst of color. Hopefully everything will grow.

I was happy to read today that Bella Santorum was released from the hospital today. She has pneumonia again. It is the most incredible feeling walking out of the hospital with a child that you're not sure if will make it or not. I felt that every time we left a hospital with Lilly. (Five times total.) Such a feeling of triumph! I would carry Lilly in my arms smiling and thanking God for pulling her through again.

Here is a link to a good article that I was happy to read, entitled "Trisomy 18 and 13: More Children Like Bella Santorum Survive." A new study was done which showed "a significant number of children with the condition are actually surviving to older ages, though it takes a lot of medical care to keep them going." The study was published yesterday in the journal Pediatrics. So many in the medical community need to be educated to this fact.

For those that have been asking, we now have a date for Rainbow Baby's ultrasound. Next Wednesday, April 18. I feel a mix of emotions but am overall excited about it. I'm curious, what will God do next?

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

Sunday, April 8, 2012

Lilly's Easter basket

Happy Easter! I decided Lilly was going to get an Easter basket this year along with her siblings, even if she wasn't able to eat her little chocolate bunnies. I also got a sweet cherub statute that says "LOVE" to put in her lily flower garden. (Some of the lily bulbs we planted have started to grow! I need to take a picture and post soon.)

Lilly's basket is perfect for our Little Firecracker. I got it off Ebay. My mother-in-law makes baskets and I was thinking perhaps at some point, we would have enough time for her to help me make a special basket for Lilly, in "Lilly colors."

Picture 3 is our Lilly bunny in a basket. She wasn't too impressed with being put in a basket but the pictures were cute anyway.

Pictures 4-5 are flashbacks from last year. After church service, my children took turns holding Lilly in front of a bunch of Easter lilies. (Another little girl at church - named Lily - held her too!)
I've heard a number of people say that they miss their loved ones even more around holidays. It's true. But I'm so happy for Lilly - she's having Easter in heaven with Jesus. Who could ask for more?

Saturday, April 7, 2012

Those fragile immune systems

A few days ago, I read an article called "Pass Not Thy Germs: Do's and Don'ts of the Flu-Spreading Season" in the latest Beeyoutiful catalog. (Hopefully it will soon be posted to their articles page on their website.) Even though Lilly is no longer with us, I still find myself reading every article I come across on ways to not spread germs.

Bella Santorum is back in the hospital. The family has not released details yet as to what Bella is sick from this time. One newspaper article I saw reasoned it was "due to Trisomy 18."

I'd say "yes" and "no" to that. Trisomy 18 doesn't send these kids to the hospital. However, Trisomy 18 does cause problems within their bodies with one of the results being a very weak immune system.

In the article I mentioned at the beginning of this post, the author wrote that whenever her family went out, she carried her baby in her Ergo or Mobi. (Baby carriers that you wear on your body.) She wrote: "Studies have shown that natural immunity is passed from skin to skin contact from mom to baby, so having her next to me boosts her immunities." I had never heard that one before, but I did "wear" Lilly a lot in baby carriers. We both enjoyed the snuggle time and I like knowing I was boosting her immune system too!

In photo one, Lilly is in a "ring sling". Look how tiny she was! She was 3 months old. In photo two I'm wearing Lilly (11 months) in a water wrap by Gypsy Mama. She loved being in this and being in deeper water. I also had a regular Gypsy Mama wrap that I carried Lilly in. It was my very favorite. But when Lilly got older, about 15 months, she began protesting about the closeness of the wrap. So I dragged out the Snuggli (photo 3), my least favorite carrier (it pulls on my shoulders and back) and found Lilly LOVED that one.

I finally decided that Lilly must have liked that Snuggli so much because it held her out a big farther from me so she could see around much better. After all, she may have been physically and mentally delayed, but she was getting to be a big girl and she was so interested in the world around her. Plus it helped hold her head up. (Her neck never got strong enough for her to hold her head up for very long.)

I wrote about the various supplements that I used to help boost Lilly's immune system in this blog post from January. Two things that I didn't mention in that article that we started doing during Lilly's life was to for each family member to use a different hand towels to dry their hands. So that means in our two biggest hand washing areas of the house - the kitchen and the privy (powder room) we each have designated hand towels. Another thing I do is run an essential oil diffuser most of the day. These are wonderful for killing airborne germs and help in healing. You can read a number of different articles, and see a video, on the Beeyoutiful website here. My current favorite blend is to add these essential oils to the water in my diffuser: (several drops each of) Eucalyptus, Sweet Orange, Lemon, and (a drop or two) peppermint. (I did a lot of research to select what I do use.)

I hope these ideas might help someone else out there! We still use many in our family.

Oh - I can't neglect mentioning one more HUGE immune booster. PRAYER!!! And lots of it!

"Pray without ceasing." - 1 Thessalonians 5:17

"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." - Mark 11:24

Thursday, April 5, 2012

The Dragonfly Project

Lilly's crazy sock monkey has a new friend. A rainbow bear. It's in honor of our rainbow baby.

Today I had an appointment at the birthing center to check up on rainbow baby. My son went with me and was so excited to hear the heartbeat. Only we didn't hear it as clear as usual - the baby kept moving around really fast. I'll be 17 weeks tomorrow, and will be receiving a call shortly to set up the ultrasound.

Last week I got a really neat dragonfly card and keychain in the mail from The Dragonfly Project. I had never heard of this group before. But apparently they send sympathy cards out, a few months after the death, to let family and friends know their loved one is not forgotten. I don't know who submitted our name, but we are thankful!

The card had this story in it by Walter Dudley Cavert:

"In the bottom of an old pond lived some grubs who could not understand why none of their group ever came back after crawling up the lily stems to the top of the water. They promised each other that the next one who was called to make the upward climb would return and tell what had happened to him. Soon one of them felt an urgent impulse to seek the surface; he rested himself on the top of a lily pad and went through a glorious transformation which made him a dragonfly with beautiful wings. In vain he tried to keep his promise. Flying back and forth over the pond, he peered down at his friends below. Then he realized that even if they could see him they would not recognize such a radiant creature as one of their number. The fact that we cannot see our friends or communicate with them after the transformation which we call death is no proof that they cease to exist."

I thought that story was beautiful and imagined what our Lilly might look like in heaven right now. :)

Wednesday, April 4, 2012

Lilly's memorial tree - April

Photo 1: Our Lilly bunny! See photos 2 and 3 to see what we've done with Lilly's special bunny hat this month.

Today marks what would have been Lilly's 21 month birthday. So we put new decorations on her memorial tree to honor her. April's theme is crosses and Easter lily flowers, honoring both Lilly and Jesus.

We made the crosses out of cardstock and decorated them. I don't believe I've ever done anything like that and actually felt a bit odd decorating crosses! I know that the cross represented a terrible way to die. There was no beauty in it. That is in any cross but the one Jesus was crucified on. Jesus died a horrible death on the cross, but he took our sins upon him. Because of Jesus we have the hope of eternal life in the new heavens and new earth. Because of Jesus I will one day hold my Lilly girl again! That is a gift that is too wonderful for me to ever repay!

Our Easter lilies that I hooked onto the tree turned out a bit disappointing. I thought I'd gotten a real bargain - a bag full of fake Easter lilies at a really really cheap price. But when I opened the bag, many were completely flattened. And the fabric is just so terribly cheap that even when I fluffed them up, the wouldn't stay that way. I guess you really do get what you paid for with fake flowers! Oh well Lilly, mama tried - it's the thought that counts, right?

Still, the tree looks good. Especially with Lilly's special Easter bunny as the tree topper!

Monday, April 2, 2012

Rememberance jewelry and documentary star Lilly

Recently my kids and I made playdoh. What fun! My son ended up building stuff for his toy cars. My daughter had fun writing words. Of course she had to write "Lilly."

My friend Michelle of Six Sisters Beadworks makes beautiful keepsake jewelry. I've actually never been much of a jewelry person, but I love the things she makes. They are so special to me. She made Lilly two bracelets and a necklace during her short life. Then she made my other daughter and I bracelets like Lilly's in memory of her. You can see them here, along with Lilly in her special bracelet.

Michelle is the mama of a little baby boy that passed away, a few weeks before his due date, shortly after Lilly died last December. Little Henry had Trisomy 18. Michelle has created a line of special "remembrance jewelry" for mama's like us. (And grandma's and whoever would like a necklace - or bracelet - in memory of their angel!) You can see her designs at her Etsy site here. Scroll to "women's necklaces" and you will see a number of different options. Michelle also takes special orders. If you order something from her I am sure you will be as blessed as my daughters and I have been!

So what is my "documentary star Lilly" all about? Well my girl is the star of two short videos that were just released for Trisomy Awareness Month! OK - so "star" is a slight - I mean BIG - exaggeration. :) But Lilly does make an appearance in them and as brief as it is, we love it. My son was watching the videos with me for the first time and as soon as he saw Lilly he smiled so big and said "Awwww ... Lilly is so cute!"

The first video was made by Giuliana's mom. She called it "We Are the World of Trisomy 13 and 18" and you can see it on YouTube here. It has three pictures of Lilly starting at minute 1:36. The first picture is of Lilly in September 2010 at Wolfson Children's Hospital. The second picture shows her in all her chubby glory in December 2011, just a week or two before she died. The last picture is of her little coffin at her burial site.

The second video is a Trisomy Awareness Video called "What to expect when expecting a child with Trisomy." This video is also on YouTube and you can view it here. There is one picture of Lilly in it - she is sitting on the couch between her brother and sister and they are both kissing her. That is at minute 5:06. This picture was from May 2011, after Lilly was released from the hospital after almost dying from a virus.

Seeing these videos made me want to put one together of Lilly's life. But I've never made a video online before. If you know of an easy program to use to make one, I'd be grateful if you would leave a comment (or e-mail me) and let me know about it! I am in the middle of another major "Lilly project" right now, but would like to make a little video presentation at some point.

"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