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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

Wednesday, February 29, 2012

A valuable life and more memorial ideas

My daughter T. reminded me about these cute pictures of Lilly from August 2011, so I thought I'd post them. In the first Lilly is with Hank the caterpillar and Jo Jo the dog. (Hank was from Uncle Hank and Jo Jo was from her cousin Josiah. Lilly was buried with Hank and big brother H. now takes care of Jo Jo.) I love the sweet grin in picture #2! And check out that chubby hand and arm in picture #3! We call that "hard earned chub!" (If there is one thing I could change about how we cared for Lilly it would have been to get her feeding help much more quickly. She could drink from a bottle, but wasn't strong enough - because of her damaged heart - to drink long enough at a time. We did our best but just really didn't know what to do at first. When she was 2 months old she got a NG feeding tube and wow - what a difference that made!) We miss you and your chub Lilly!!



My husband shared with me an article yesterday by conservative commentator Cal Thomas. It was dated January 6, 2012 and Cal had written about his brother Marshall, who has just passed away the day before. Marshall had Down syndrome. Cal titled his article "My Brother's Valuable Life." Just as we felt Lilly's life was precious and "valuable", the Thomas family believed that about their son Marshall's life.


Cal wrote that when Marshall was born (1950) and diagnosed, the doctors told the parents that "he would never amount to anything and [they] advised them to place him in an institution." Apparently this advice was commonly taken in the 1950s.


Cal noted that if you measure life to be a success by fame, wealth, possession, or by making a major contribution through things like medicine, sports, politics, or the arts - then his brother was a failure. Cal writes "If, however, your standard for a successful life is how that life positively touched others, then my brother's life was a resounding success."


That is exactly how we feel about Lilly's life. The general population would think Lilly's life worthless - she couldn't care for any of her basic needs herself, she never said any "real words", and she was expensive to care for. BUT ... she impacted so very many lives. It is amazing how God will often choose the one of the very weakest people to show His glory and power!

In his article, Cal also mentioned that when he was about 8 or 9, he bought a popular book for his parents called Angel Unaware. It was by Dale Evans. I did not realize before reading this article that Dale and Roy Rogers had a little girl named Robin that lived for two years with Down Syndrome. Dale took the title of her book from Hebrews 13:2: "Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares."


In our current time, people don't think of hiding their "embarrassing" Down Syndrome children in institutions anymore. Instead they receive good medical care and are accepted by doctors. Lord willing, there will come a time when children with Trisomy 18 are treated the same way. How wonderful that time will be when we parents, who are already trying so hard to care for our children, don't have to also fight doctors to get help for them. For a time when we no longer hear our children are "incompatible with life" and therefore not worth it because of "ethical" reasons. I praise God that the majority of Lilly's doctors really did grow to love her and helped her the best they could. But there were some that refused to help.


Finally I wanted to share a link to good list of memory making / healing ideas. Click here for that. There are separate lists for activities for children and for parents. If you've read this blog much lately you know how important I feel these activities are! Right now my daughter T. and I are working to make ornaments for Lilly's memorial tree for March. :)

Sunday, February 26, 2012

A beautiful letter

This is the picture of Lilly that I used on the front of her acknowledgment cards that I made after she passed away. I took this picture of her back in October. She is holding her favorite stuffed animal - Hank - who we buried with her. I wish the lighting had been better - but we all love the picture anyway.

I'm done! Done with what? Tonight I finally finished responding to all the wonderful sympathy cards, gifts, etc. that we have received from people since Lilly passed away. It has taken me almost two months to do so. (My husband helped a lot.) At first I was feeling a bit bad for taking so long but then tonight I counted up everything that we sent an acknowledgment card for. That totalled around 250! OK ... now I can cut myself some slack. That WAS a lot. (And we're still occasionally getting cards!)

It was an enormous comfort when the sympathy cards began pouring in in December. However, I confess was not able to read most for several weeks. I looked at the return address and then put them in a box. But this year, when we began writing our notes to people and thanking them, we read the cards and it was good. I was ready to read what people wrote. And we so appreciated each and every one.

I wanted to share a beautiful letter "to Lilly" that we received from one woman, that we don't even know. (She is a member of Samaritan Ministries - our medical needs sharing group.) It was so touching it made me cry but I love it. Here it is:

Dear Little One,

Jesus has created you, in His eye, perfectly! How I envy you your daily walks with our Friend & Savior, Jesus. He has called YOU to grow in character & wisdom with Him, in heaven. As you continue your dwelling there, may He hold you & tell you of loving parents who yearn for the day when THEY can hold you & enjoy your precious companionship! You know, firsthand, of the Father’s sufficiency, His faithful love for us, & His complete trustworthiness for our needs each day. You know if there are puppies in heaven! Your parents are RICHLY blessed to have been touched by your life, yet are POORER for having had to say "goodbye" so soon! If you could, would you tell them you are well & happy & not to cry? Would you lift their chins & tell them that God still has need of them; to look within the cheer & the good purposes the Holy Spirit has designed them for? Would you laugh & break their hearts all over again with love for you?! You are a treasure! And I look forward to touching your cheek & hugging you as family-in-Christ one day! Welcome! And goodbye ... for a short time.

Your Samaritan Ministry’s "Aunt",
Jan
With deepest respect & ongoing prayers!

Friday, February 24, 2012

Request: Does anyone (local to us) have an exercise bike they want to sell?

I though I'd give this request a shot on the blog: We live in a town outside Raleigh, North Carolina. Does anyone living in the general area have an exercise bike that they don't want anymore and would like to sell? "New baby" and I are wanting to get one. If you do, please e-mail me at:

LittleFirecrackerLilly (at) gmail.com

Thank you!

Another beautiful "Lilly colored" gift

The other day we received in the mail a beautiful handmade table runner - sewn in red, white, and blue - from a family in Virginia. We had never met this family before, which made the gift even more touching. In a enclosed letter, S.H., the mom, shared about their family and about how they learned about Lilly, and how Lilly's story blessed them. Wow. THANK YOU!


I don't think we will ever cease to be amazed at how many people Lilly's life has touched. All by the grace of God. I don't think I can express in words just how much it means to me to know that. I feel like Jesus's mother Mary, and how she would be told things about her son or would just observe him, and she "kept all these things in her heart." (Luke 2:51b) Every time I hear one more person say something positive about Lilly, I save that in my heart. It helps to heal the brokenness.



For Valentine's Day, my daughter T. helped Lilly ;) purchase a pink Calla Lily plant for me. T. and I love lily flowers! We want to have a whole garden of different kinds of lilies. I was excited yesterday to see that an Easter lily we planted in the yard a couple years ago was starting to grow. This year I hope to plant a bunch more by it.

Spring is definitely coming. It is sunny and 73 degrees as I write this! It has been the warmest strangest winter. Many times I thought this would have been a perfect winter for Lilly. She would have gotten to go outside so much.

In homeschool we've been studying a different bird each week. Yesterday while outside I was pleased that I could identify four different birds by their song. Such nice little diversions.

"The flowers appear on the earth; the time of the singing of birds is come, . . ." - Song of Solomon 2:12

Tuesday, February 21, 2012

Full of (therapy) beans

One thing of Lilly's that I just knew I couldn't get rid of was her therapy pinto beans. (She also had dried chick peas but I was OK dumping those into her brother's box of beans that he plays with.) I had them saved in a baggy in the attic and then I read an idea by Caleb's mom about how she was had saved her son's therapy beans and noodles and someone had suggested putting them in jars. What a great idea!

Once when our family was on a walk, I found an apothecary jar that was out by the side of the road with a pile of junk. I grabbed it and brought it home. Lilly was with us. :) I've had it on a shelf but hadn't figured out the perfect thing to put into it until I heard about the beans in a jar idea. Lilly's therapy beans filled the jar perfectly. It was very satisfying.

To see pictures of Lilly playing with her beans click here. She liked to play with them with her hands - and feet.


While I was looking for the above link, it made me smile to find this link to a short video of me rolling Lilly from side to side. She always thought this was wonderful fun! It always made her smile!

Today I had my first appointment at the birthing center for "the new baby." The birthing center is the only free standing one in the state and is about 50 minutes away. I went there for care with Lilly and my son and was so pleased with the care I got. The center is only 5 minutes from a huge hospital where Lilly had a lot of appointments. So it was sort of sad driving there and thinking of her and missing her. But it was good to be at the center today - to have several people say "welcome back." And the midwife that delivered Lilly came out of a meeting to give me a hug. For some reason - that made me want to cry. But it was so good to see her.

I firmly believe that this new baby is a gift from God. ALL my children are. But this one seems extra special because of Lilly. I was so very very grateful to hear the baby's heartbeat today. I had been nervous off and on that I was going to lose the baby, for some reason. So it was just such sweet relief to hear it.

Due date is September 16 or 18. I don't know what to except - my son was born a few days early and Lilly was born 2.5 weeks late. My next appointment is in 6 weeks and we'll have our first ultrasound shortly after that. Now I'm sure that will bring up a lot of memories! But we'll cross that one when we get to it.

"Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble." -Matthew 6:34

Monday, February 20, 2012

Lilly's new gravestone

Saturday morning we went to see Lilly's new gravestone, which had been installed earlier in the week.

We got a flat stone on the ground, instead of the raised stone. (I don't remember the proper terminology.) Lilly is buried next to my husband's youngest sister, and across from my husband's father. In the middle of their graves is a large upright stone with the family's last name on it. Because of this, we got Lilly the stone you see here. It is the same size as my husband's sister's stone.

I am very pleased with how it turned out. The original cross with lily flowers that I found didn't work out for the stone, but we liked one they had fine. The scripture that is referenced at the bottom of the stone is 2 Samuel 12:23 which is King David speaking after his baby died:

"But now he is dead; why should I fast? Can I bring him back again? I shall go to him, but he shall not return to me.”

The "I shall go to him" part of the verse gives us immense comfort.


The only disappointment we had while at Lilly's graveside was that her beautiful flowers were gone. All that was left was the stake of the flower holder. I guess the wind whipped them away. Thankfully her cherub statute was still there. I spent some time looking at flowers by other people's graves to see how they had them anchored in so we could make Lilly's more secure in the future.

We plan to go back to Lilly's grave in a few weeks. We have something special to take then. Recently, three families went in together on a patriotic wreath at an auction and bought it for our Little Firecracker's grave. We were so touched! I've ordered a wreath stand (with stakes) to put it on and we will take it next month.

This evening we have been listening to Johnny Cash's cd "My Mother's Hymn Book." I like that so many of the hymns he sings are about heaven. I just need to hear that right now. Here are the lyrics to one of the songs:

In the Sweet By and By

There’s a land that is fairer than day,
And by faith we can see it afar;
For the Father waits over the way
To prepare us a dwelling place there.

Refrain: In the sweet by and by,
We shall meet on that beautiful shore;
In the sweet by and by,
We shall meet on that beautiful shore.

We shall sing on that beautiful shore
The melodious songs of the blessed;
And our spirits shall sorrow no more,
Not a sigh for the blessing of rest.

To our bountiful Father above,
We will offer our tribute of praise
For the glorious gift of His love
And the blessings that hallow our days.


Well - tomorrow is a big day. I have my first appointment at the birthing center. (I am a little over 10 weeks.) I am really looking forward to hearing the baby's heartbeat. That will be very reassuring.

Friday, February 17, 2012

Lilly's story on the Trisomy Advocacy Group

Lilly was featured as the Trisomy Advocacy Group's "Thursday Tri ~ Kid" this past Thursday. Her story is on their Facebook page here.
I think anyone can access the story. I ended up using the same story I wrote for SOFT's newsletter, and adding a few paragraphs to the end.

"TAG" also has a regular website here: http://www.trisomyhelp.org/ There are some things on the website, and a lot to be added.


Guest post by T. - My Lilly memorial jewelry

This post is by Lilly's big sister, T. I want to share about the jewelry I have to remember Lilly.

My lily flower locket has two pictures of Lilly inside. On one side is a picture of her wearing a big bow, and on the other side there is a picture of her in her special swing:


My great-aunt Shisshy made me this one:

On the back it says, Lilly Hollowell - July 4th, 2010 "Little Firecracker" - Pray4Lilly.blogspot.com :



The bracelet matches the one Lilly was buried in. It says "LILLY":


This pretty angel necklace was a present from Lilly's friend, Giuliana's mom after Lilly died:


This lily flower necklace was made by A., who's little brother Henry had Trisomy 18 and he sadly died right before he was born:


This necklace has four charms. It has a purple Lily, a silver heart that says "Big Sister," a blue stone, and a "T":



This bracelet is red, white, and blue. It has some beautiful blue liles on it. It says "Lilly". It was made by a girl at our church:


Wednesday, February 15, 2012

Safe in the arms of Jesus

Last year I found myself more and more drawn to drawings/paintings of Jesus with children. On the Trisomy 18 Mommies Facebook group I learned that a couple mama's had pictures drawn of Jesus with their children. I thought that was a fantastic idea.



After Lilly passed away I decided I really wanted a picture of Lilly with Jesus. After asking around some I mentioned it to my aunt and she suggested one of her artist friends, K. K said she would give it a shot. I don't know how far along she is on the picture, but I am really looking forward to it.



I have mentioned before on this blog that instead of having regular health insurance, we are members of a Christian medical needs sharing group called Samaritan Ministries. (I think we only pay in the low $300 range a month for our whole family!) Lilly had HUGE medical bills and Samaritan Ministries covered over 90% of them. As wonderful as that is, honestly the biggest blessing in being part of the group is that your medical need(s) are prayed for. We've probably received hundreds of checks and cards from other members and all of the people said they were praying for us and Lilly. In the last Samaritan Ministries newsletter, they printed a modified version of Lilly's obituary that I sent them in their "Final Rewards" section. Since the printing of that, we have begun receiving some amazing sympathy cards from members.



Yesterday we got the most wonderful package from a member named Anna. She enclosed a beautiful note card which has an adult hand holding a little child's hand and says "Touching our hands for a little while; but our hearts forever!", a drawing of Jesus holding a baby, and a pewter ornament of Jesus in a rocking chair holding a baby. Anna shared that these things brought her comfort after she had a miscarriage. We were incredibly touched by this gift. How kind and thoughtful of Anna - who we don't even know! I noticed that at least the note card and ornament were from http://www.aliceart.net/ . I think I'd like to order some of the note cards to have on hand as it seems we are often sending cards to grieving Trisomy families.



As I look at these pictures and the ornament today, which is exactly two months since Lilly left to be in the arms of Jesus, they really are bringing me comfort and peace. I am so happy for my little girl! I hope Jesus reminds Lilly how much I love her.

Tuesday, February 14, 2012

Lilly's first Valentines Day in heaven

Happy Valentine's Day my little Lilly in heaven! We love you so much and miss you! But we know you are so happy beyond measure. Remember these pictures from last Valentine's Day? Ha! No NG-tube anymore! And no g-tube! Nothing at all sweetheart - you are perfect! And what could be better than being in the arms of Jesus? Even Mamma can't compete with Jesus! We can't wait to see you again Lilly! In the meantime - never forget how much your family loves you!

To see some more pictures of Lilly last Valentine's Day, click here. Lilly was 7 months old.

I had to smile as I listened to myself talk on the below video. Lilly never did get any teeth! She would have spells of heavy drooling and chewing. I could see top and bottom teeth under her gums, but no tooth every broke through.

Oh well. Maybe I'll see her with a mouth full of teeth in heaven! I'm so curious as to what everything will be like!



"There will be no more night. They will not need the light of a lamp or the light of the sun, for the Lord God will give them light . . . ." - Revelation 22:5




video

Monday, February 13, 2012

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:




video



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!

Saturday, February 11, 2012

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

Thursday, February 9, 2012

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

Tuesday, February 7, 2012

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 )

Monday, February 6, 2012

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

Saturday, February 4, 2012

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































Friday, February 3, 2012

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