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

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

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?

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

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. :)

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!

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