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. :)

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!

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

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

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.

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.