Various videos

One of Lilly's little Trisomy 18 friends, who is still on earth, is 3 year old Faith. Her parents were blessed to receive good advice early on in Faith's life from Rick Santorum. The Detroit Free Press has a good article and video about this in today's edition. You can read the article and watch the video here: http://www.freep.com/article/20120213/NEWS05/202130359/Rick-Santorum-s-advice-helps-metro-Detroit-family-with-Trisomy-18-child

Anyone who has read this blog for awhile knows that Lilly loved to eat coconut oil by mouth. The main reason I gave it to her was for the calories and immune boosting benefits. But there are also quite a number of other health benefits which you can read about here. I was interested to find out yesterday that coconut oil can really help with Alzheimers. You can see a video about that here. I guess that Alzheimers would have been one problem Lilly would never have had to worry about!

In doing a photo project this weekend, I came across a couple Lilly videos that I had forgotten about. They were so sweet to see. I was smiling with tears in my eyes as I watched. I thought I would share one here, that I don't think I ever posted. The video is from March 2011 and Lilly was 8 months old:

Now I need to get all our videos backed up on DVD or something so that we don't lose them if the computer crashes!

Lilly's sock monkey is ready to box

This crazy looking sock monkey in the picture was Lilly's. (I now keep it in Lilly's bed.) My aunt got the sock monkey special made for Lilly for her 1st birthday from an Etsy shop called hoffeeandanuffin. It was perfect for Lilly - red, white, and blue - those July 4th colors. The monkey has detachable hair bows on the top of its head. Unfortunately Lilly never had enough hair for them.

A few weeks ago, I picked up Lilly's blue hand splints from my nightstand. Then I found myself picking up sock monkey and putting the splints on the sock monkey's hands. It felt good to put them on! I miss Lilly's bedtime routine so much and putting on those splints were part of it. Every night after I put them on Lilly, I would hold her hands and she would box her daddy with her "boxing gloves" on. She found that amusing and would even box daddy all by herself. After I put the splints on sock monkey, I had it box my husband. It wasn't the same as Lilly doing it of course, but it brought back fun memories.

A few days ago, we received our quarterly issue of The SOFT Times. This is a support organization for Trisomy 18, 13, and related disorders. There was over a page dedicated to Lilly. It was so sweet seeing the pictures and text I submitted of her in print, knowing that others would read her story.

On the opposite page of Lilly's story, was a story about Lakaia. Lakaia was a little girl with Trisomy 18 that lived to be 8 months old. Her family lives in a town near us and I met her mother at one of Lilly's hospitalizations last May. It was special seeing both girls on pages by each other. I wish our girls had gotten to meet each other on earth, but it never worked out. But I'm sure they're friends in heaven now.

In my last blog post I mentioned a little girl named Emily, who has Trisomy 18 and is 6 years old. Yesterday, I received in the mail a package from Emily's two older sisters. Inside were beaded felt hearts that the girls made for Lilly's memorial tree. (February's theme is hearts.) I was so touched and after taking a picture, hung them on the tree. Thank you girls!

"How precious is Your loving kindness, O God!Therefore the children of men put their trust under the shadow of Your wings." - Psalm 36:7

Educating the medical professionals one at a time

I was thinking about Lilly and her laptop earlier and thought it would be fun to post these pictures. They are from mid-July of last year. The laptop was a birthday present from her little friend Emily. Emily, who has full Trisomy 18, is now SIX years old. Yay Emily!

Last week my friend H.B., who is pregnant, e-mailed me that she had gone for her ultrasound and ended up doing a little "Lilly evangelizing" while there.

As the ultrasound tech looked for "markers" for several Trisomys and other conditions, H. asked a lot of questions. The tech finally asked H. if she was in the medical field. H. told her "no" and then told her about Lilly's LIFE with Trisomy 18.

The tech asked if Lilly died because of her heart. H. told her that Lilly had had heart surgery the month before she died. The tech was shocked - and said so. She asked H. in bewilderment "She had heart surgery? They were able to get someone to do heart surgery on her?" H. told her "yes" but that we had to go out-of-state to Florida for it.

H. said that the tech finally said that she learned something new every day at her job. And that that day she learned that babies with Trisomy 18 can get heart surgery. She said that she was going to share that with the perinatologist she worked with.

H. urged her to do so and stressed that Lilly was a happy, sweet girl and that she died peacefully and quietly in her sleep. And that she brought a lot of joy and love to others around her. H. told me that she wanted to say things to get the "painful, miserable life" pictures out of the tech's mind, as that is what so much of the information out there leads medical professionals to believe.
I so enjoyed reading H.'s description of all this, and I really was happy that Lilly's life could be shared with yet someone else. Not long ago, H. had also told me that she had told her O.B. about Lilly and the doctor had been so shocked to hear Lilly lived to be 17 months that her jaw literally dropped.

Yay Lilly! I'm just so proud of my little girl. She was so amazing. And amazing things still happen to us because of her. Thank you thank you God for choosing us to be Lilly's family. We were and are blessed beyond measure for every second we had with her.

And thank you H. for sharing Lilly's life with others! I can't wait to go in for my ultrasound this spring so I can share Lilly's life with the tech. I have my purse ready with pictures of Lilly smiling and my Lilly "business card." I want her story told to anyone that will listen. I want more people everywhere to know that Trisomy 18 is not a horrible thing. I want them to know that there are children that live for years with it. There is so much misinformation out there. But by being vocal we can change that.

One other interesting thing H. told me (which has nothing to do with Lilly) was that the tech said she usually tried to wait until the end before she would tell people the gender of their baby. She said otherwise most people that come in are texting, distracted, or just plain disinterested. I was surprised as I read this. How can people not be interested in watching their baby on the monitor? It's fascinating! And honestly - you never know if that will be the last time you see your baby alive. Every minute should be treasured. I know I felt that way with every one of the ultrasounds I had with Lilly.

Every baby - including Trisomy babies! - are "fearfully and wonderfully made."

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well." - Psalm 139:14

Heart ornaments and the gravestone approval

Thank you to the anonymous person that made Lilly this heart ornament (1st picture). Hmmmm ... your handwriting looks like the anonymous person that made the knitted angel last month. ;) Thank you!

Today T's piano teacher brought an ornament made by her daughter. (2nd picture). It is made out of duct tape. Wow! I would have never thought of that. It is a reversible ornament and the other side is mainly the zebra sripe, and has a small pink heart. It is amazing the variety of duct tape that is out there now.

Earlier this afternoon I signed our approval for the design for Lilly's gravestone. (3rd picture - the scanned copy doesn't show up very good but perhaps you can click on it to enlarge it.) The design I initially came up with had a different lily flower and cross. (The one I use on Lilly's "business card" and our return address labels.) Unfortunately that didn't work out. But the engraving company had two different lily and cross pictures so we selected one of those. I'm very pleased with the overall design.

Yet I have to say, it still seems so strange to be doing this kind of thing for my own child. I know this was pretty common in the past. But I wonder if it felt any different for the parents? It's hard to imagine it would.

I keep thinking of our little Lilly's soft cheeks and smile and her pretty eyes. I so look forward to seeing her again one day!

Sometimes when Lilly was in the hospital and often when I did massage on her, we would sing hymns about heaven. I don't know if I've sung this one since I was young but I was thinking about it today:

"Sing To Me of Heaven"

Sing to me of Heaven, sing that song of peace,
From the toils that bind me it will bring release;
Burdens will be lifted that are pressing so,
Showers of great blessing o’er my heart will flow.

Refrain
Sing to me of Heaven, let me fondly dream, Of its golden glory, of its pearly gleam;
Sing to me when shadows of the evening fall, Sing to me of heaven, sweetest song of all.

Sing to me of Heaven, as I walk alone,
Dreaming of the comrades that so long have gone;
In a fairer region ’mong the angel throng,
They are happy as they sing that old, sweet song.

Refrain

Sing to me of Heaven, tenderly and low,
Till the shadows o’er me rise and swiftly go;
When my heart is weary, when the day is long,
Sing to me of Heaven, sing that old, sweet song.

Refrain

(You can hear the tune for this hymn at: http://www.cyberhymnal.org/htm/s/i/singtome.htm )

Memorial jewelry

For Lilly's first birthday, we bought her a special bracelet that had red white and blue on it. (Celebrating her special day on July 4th!) I ordered it from Six Sisters Beadworks and it was called "Americana." Instead of a flag charm, I had Michelle, the woman that makes the jewelry, put on a little silver "L." The bracelet was so pretty on Lilly's chubby little arm. We buried Lilly with her bracelet. (And a necklace that Michelle also made that I had bought Lilly for a Christmas present.)

This past Saturday, I received a package from Michelle. Inside I was delighted to find two bracelets - one for me and one for my daughter T. They looked just like Lilly's special bracelet. Except instead of the "L" charm, they have "Lilly" in little silver blocks. And mine has a heart charm with two baby footprints inside. T's has a heart clasp. The bracelets are so beautiful and so Lilly! Definitely something to wear often and treasure.

I've never really been a "jewelry person" other than loving my wedding and engagement rings. (They're copied from designs from the 1920s.) But I've really been comforted by having some Lilly memorial jewelry. The day after Lilly died, I got out a little baby shoe charm that has Lilly's birthstone on it, and put it on a chain to wear. (My aunt had bought it for Lilly for her birthday.) Then for Christmas I received a charm to add to it "from Lilly" (my mom) that has a little heart, and a little silver circle with an "L." I love these charms and what they represent in my mind.


Michelle is planning to design some special memorial jewelry to sell on her website and Etsy site. She lost her own little boy, who had Trisomy 18, in December, shortly after Lilly died. She said she wears an angel's wing with an "H" for his name (Henry). I look forward to posting the link for the memorial line once it's available. I think there are other mothers and sisters out there that would like something special like that.


T. likes special necklaces - she has several and I'll post pictures soon of what she wears to remember Lilly.

In the Trisomy 18 world, four babies died in the past two days. And another (in Israel) went to heaven last week. I know those parents cherished every second with their children. And I know that their lives will always have a void in them now. But Lord willing, as the days pass, they'll be able to focus on all the happy memories and take comfort in them.

I miss Lilly's smile so much! Yet it makes me so happy to remember her smiling and knowing that she was such a happy little girl!

For me it really helps to focus on the happy Lilly thoughts and to do memorial projects and for our family to talk about Lilly every day at home.

"A merry heart does good, like medicine, But a broken spirit dries the bones." - Proverbs 17:22

Lilly's memorial tree - February

Today Lilly would have been 19 months old. Wow! I hope our big girl had a fun celebration in heaven. (And how could she not have - in the presence of Jesus?!)

We celebrated at our house by taking January's angel ornaments off Lilly's memorial tree and putting up hearts, for February's theme. T. and I spent some time last month sewing stuffed hearts. We all used fabric markers to write messages for Lilly on the hearts. They aren't the most professional looking things, but they're made with love. And oh how we all love our Lilly!

"He who does not love does not know God, for God is love." - 1 John 4:8

Lilly's memorial tree notebook

We've all been enjoying Lilly's memorial tree this year. January was (and will always be) "angel month." We received so many special angels from people to hang on the tree. I was afraid we would forget who sent what, so I made a special notebook to keep track of them all.

In the notebook I made a divider tab for each month. Behind "January" I glued a picture of every angel that we received. (Plus what we started with - Lilly's own angel ornaments and some T. and I made.) I wrote the name of each person that sent the ornament. And if there was a story they shared about their ornament, I put that in too.

I figure the notebook will be a good keepsake. Plus, whoever inherits the tree (probably T.), will have the story for all the ornaments compiled in one place.

We decided that we will change the decorations each month on the 4th, since that would be an anniversary of Lilly's, being born July 4. So tomorrow is the day for February! The kids and I made some paper hearts for the tree, and T. and I have been sewing stuffed hearts to hang too. I have some fabric markers and we're writing on the stuffed hearts too. "Mamma Loves Lilly" and "Jesus Loves Lilly" etc.


I got some plastic tote bins to store the monthly ornaments in. Tomorrow's the 4th so we'll remember Lilly by changing out the angels for hearts.

We continue to collect ideas about preserving and sharing memories. One I found earlier this week was on Ali's blog (a little girl that lived over 2 years with Trisomy 13). Her mama has put together a baby board book of pictures of Ali for her baby sister. She ordered it from:
http://mycustomstory.com/ I thought this was such a neat idea and am looking forward to making one of Lilly for our baby-on-the-way. So many wonderful, comforting and healing ideas out there!

"The earth is full of the goodness of the Lord." - Psalm 33:5b