Lights out!

Just about an hour ago, my son and I were started by a sudden darkness in our living room.  It was the colored lights on Lilly's tree.  They all suddenly burned out.  :(  The middle section had burned out awhile ago, then earlier this week the bottom section.  Now the top is out.  It was rather sad.  I have to say, I am NOT impressed with pre-lit trees.  The tree instructions said that the lights would last for years and if one burned out, then the others would stay lit.  Hmmmm.  I'm not interested in returning it though, I bought the tree while Lilly was still alive and that makes it special.  So - tomorrow morning I'll get up into the attic, and get out a string of  colored lights we use on our big Christmas tree, and wrap them around Lilly's tree.  The lights definitely add cheer to the tree.

T. made herself a Trisomy awareness/in memory of Lilly T-shirt.  Here is the front:

And the back:

Rainbow Baby and I have our own special t-shirt, from grandma.  It's too tight for us now, but we wanted a picture in it:

Kisses from H.:

I went to my appointment at the birthing center this afternoon.  Everything with new baby seems normal and good.  H. was delighted to help the midwife check the baby's heartbeat.  He held the end of the doppler onto my tummy.  Heartrate was 135 bpm.  T. commented that Lilly's heart was faster.  (And it was - 160 bpm.)  The midwife felt the baby's position - he's head down, but has not started to descend any.  My next appointment is in two weeks - the date the baby is due.  Wonder if I'll be at the appointment or not??!!

Beautiful symbolic butterflies ...

This heart is a bit hard to read, but it says "Trisomy Families touch the hearts of everyone around them forever."  I thought that was beautiful and so true!  I continue to be amazed at the number of people who tell us how much Lilly, and our family, has touched their lives.  I love know that Lilly's life was so far reaching and had so much meaning.  And I can see that in the lives of other Trisomy children who's families I have gotten to know.

I got an email from D.P. who keeps an eye on Lilly's grave when she can.  She said that in driving by the cemetery the day after a storm, she noticed Lilly's wreath had blown over and so she stopped and put it back in place.  I was so thankful!  Because if it was left on the ground, the wreath probably would have blown away and gotten thrown out.  D. shared that when she stopped at Lilly's grave, there were two butterflies fluttering over Lilly and Wendi's stones.  (Wendi is my husband's sister, who died in her teens, and Lilly is buried right next to her.)  The butterflies continued to circle until D. fixed the wreath, then fluttered off together.  I love it!  My children often say that Lilly lives in a mansion in heaven with Wendi and Pop.  (Pop is my father-in-law.)  T. said that the smaller butterfly D. described must have been Lilly, and the larger, Wendi.  Thank you D.!  (I've never even met this woman, but so appreciate her kindness.)

Lilly had the first Trisomy 18 angel story posted on the Trisomy 13 support group - Living With Trisomy 13.  I love the butterfly frames added around Lilly's pictures on the webpage.  You can read her story at:  http://www.livingwithtri13.org/albumlittlefirecracker.html .  I've used the same story for Lilly before.  I just haven't been able to write another summary like that.  Thank you Vanessa for posting Lilly's story!

Speaking of butterflies, Lilly is on a waiting list with Triplet Butterfly Wings  for a special butterfly release and photo in her honor.  This mom, who lost triplets, raises butterflies and then releases them in her special garden (a garden in memory of her own babies).  Each butterfly is in honor of an angel baby and she photographs them as they are released.  Look at her blog and see how beautiful the pictures are.  I recently noticed that this mom makes and donates burial wraps and hats to hospitals. 

My own Lilly Memorial Project, in honor of angel babies, is slowly coming together.  I got another preemie boy outfit off Ebay the other day:

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." - 2 Corinthians 1:3-4

"How Firm a Foundation"

Today T. asked me to record her playing "How Firm a Foundation" on the piano.  This is her fourth video in the "Lilly funeral music" series she is doing. 

I had to fight back tears while recording this today.  (Those tears that "pop up out of nowhere!")  I think "How Firm a Foundation" was Lilly's very favorite song.  My husband discovered this when she was first hospitalized, in September 2010.  When I was holding Lilly and she was upset, I would hold her tight against me and hum this song and it almost always calmed her down. 

On the night Lilly died, when the paramedics got through trying to revive her, they left me alone in the ambulance with her.  I carefully redressed her, wrapped her in her blanket, and then held her and found myself rocking her and humming this song.  This time it calmed ME down in a way.  I knew she was with God and was happy to be there.

OK ... enough!  I don't want to cry again.  In the video, the plaque is entitled "The Reunion Heart" and we received it from Giuliana's family shortly after Lilly died.  The words are so sweet:

The Reunion Heart

Since Heaven has become your home
I sometimes feel I'm so alone;
and though we now are far apart
you hold a big piece of my heart.

I never knew how much I'd grieve
when it was time for you to leave,
or just how much my heart would ache
from that one fragment you would take.

God lets this tender hole remain
reminding me we'll meet again,
and one day all the pain will cease
when He restores this missing piece.

He'll turn to joy my every tear
with thoughts of you I hold so dear,
and they'll become my special way
to treasure our Reunion Day.

Finally, here are the lyrics to the hymn "How Firm a Foundation":

How firm a foundation, ye saints of the Lord,
is laid for your faith in his excellent word!
What more can he say than to you he hath said,
to you who for refuge to Jesus have fled?

Fear not, I am with thee, O be not dismayed,
for I am thy God and will still give thee aid;
I'll strengthen and help thee, and cause thee to stand
upheld by my righteous, omnipotent hand.

When through deep waters I call thee to go,
the rivers of woe shall not thee overflow;
for I will be with thee, thy troubles to bless,
and sanctify to thee thy deepest distress.

When through fiery trials thy pathways shall lie,
my grace, all-sufficient, shall be thy supply;
the flame shall not hurt thee; I only design
thy dross to consume, and thy gold to refine.
I think verse 2 is my favorite right now.

What do a cupcake, rock, and tiny knitted hat have in common?

In the Trisomy angel world, we families have a special bond.  Part of that is including each other's angel children in celebrations and in other ways.  Frequently this is done through balloon releases.  I continue to be amazed at the creativity of some families!

This adorable Lilly cupcake was made by Mia's mom.  If I recall correctly, she had about 70 cupcakes representing other Trisomy angel's at a birthday/memory celebration for her angel Mia. I think Lilly's mouse is just too cute!  (The mice were made out of fondant icing.)


The family of angel Dominic is making a memory rock garden for their son.  They are adding the names of other angels on rocks in his garden.  You can see Lilly's rock in the lower right area of the photo.  I thought this was another really creative idea.

It is such a heartwarming feeling for us when someone acknowledges our angel children.  One mom said that just hearing her son's name made her feel so good.  So I appreciate being able to be a part of the Trisomy angel community.  Of course we all wish we still had our special children, but since we don't, it is good to have each other for support when we need it. If you are in need of support I encourage you to reach out!

A Trisomy mom posted a link to a website called Recover From Grief.  (http://www.recover-from-grief.com/)  I've only had a few minutes to check out their website, but see they have a lot of good ideas and resources on it.


One more special thing I wanted to share today is this adorable tiny little Kaia Angel Hat ornament.  I received it from Kaia's mom along with a beautiful card.  I printed out my favorite picture of Kaia to keep tucked into the card.  (I have a box of cards from other Trisomy families.)  I am going to hang the little ornament hat on Lilly's memorial tree.

I know that it helps in the grief process to both give and receive things. 

I hope that today's post isn't even relevant to most of you reading this.  But I like to continue to post on memory ideas because it is very helpful to some - including my own family.  I appreciate those of you who have referred people specifically to this blog to check out these ideas.  We all grieve differently, but hopefully people can find an idea or two that will help them.

"Therefore encourage one another and build each other up, just as in fact you are doing." - 1 Thessalonians 5:11

Yuck - new ad bar at top

Sadly it seems that this blog, along with any other through blogspot/blogger now have ads that we can not control across the tops of our blogs.  I dislike ads anyway.  But I've seen a couple now that I just find plain offensive.  :(

If anyone knows if there's a way to get the ads to go away - please share it with me!

UPDATE:  Several people now have told me they don't see the ad bar.  I see them on this blog, and any other blogspot blog I look at.  So I'm wondering if there is some setting on my computer I can get rid of.  Hmmmm ....

FINAL UPDATE:  Problem solved!  I wanted to share this in case any of you suddenly have this problem.  I was getting those banner ads across the top of any page of this blog, and on the blogspots of others.  A friend suggested that it was malware.  So I ran my anti-malware program (a free one called Malwarebytes anti-malware) and it found some items.  I deleted them, restarted my computer, and poof! the banners were gone.  I was so happy!  And honestly I'm surprised the fix was that easy.  :P

I'm glad Lilly never had to deal with any viruses or other computer issues!

Missing: grave flowers

Today we were able to briefly stop by Lilly's grave to check on it.  The last time we were there was July 4, her birthday, when I brought the flowers in the picture and clamped them onto the large gravestone between Lilly's grave and her aunt's and grandfather's.  Sadly today the flowers were gone. 

That's the second time the flowers have disappeared.  Do they blow away?  Are they taken?  I wish I knew.  But I was glad that her wreath and other things were still there.  They are all things that we pushed deep into the ground, so I guess that's why.

H. stood by Lilly's grave and said "Hi Lilly!  I love you!"  It was so sweet.  I stood there thinking about the missing flowers and what I might do next time to try and make the flowers last longer.  I also thought about grave flowers in general and their purpose, and that reminded me of a quote from Karen Andreola's book Pocketful of Pinecones which sums up what I was thinking perfectly:

"Flowers placed at gravestones are not for the benefit of those beyond the grave.  They are for those left behind." (pgs. 196-97)

We went with my mother-in-law to her church today.  We sang a line of "Jesus Loves Me" that I didn't remember:

Jesus loves the children dear,
Children far away or near,
They are safe when in his care,
Every day and everywhere.

I prayed a thank you to Jesus for taking perfect care of our Lilly right now.  I don't think I'll ever get tired of looking at my portrait of Lilly in the arms of Jesus.  :)

By the way, if you're interested in nature study, the book I quoted above, Pocketful of Pinecones, is an excellent read.  It is a teacher's guide but written as a mother's diary in the 1930s.  The author is well known for her writings and teachings about the Charlotte Mason method of education.   

Finally, if you know a way to really get grave flowers to stay in place, I'd love any tips you can offer!

Multiplying sock monkeys

It all began with Lilly and her Crazy Sock Monkey, a present from her great-aunt on her first birthday:

Then earlier this year, I bought a game called "Where is Sock Monkey?"  T. and H. had a lot of fun playing the game with me and H. claimed the little brown monkey that came with it.  T. ended up falling in love with sock monkeys.  She bought herself a pink one.

Recently T. began worrying that Rainbow Baby did not have a sock monkey like T., H., and Lilly had.  It's funny how God can answer random wishes.  Rainbow Baby suddenly received a sock monkey from one of his grandma's:

 

Now we've got a monkey for each of our "monkeys":

I had a checkup with Rainbow Baby today.  The midwife said he felt like he was in a funny position, though thankfully still head down.  She said that can happen after a breech baby.  (Lilly was breech.)  I had not met the midwife I saw today before.  She was quite interested in talking about Lilly's story and Trisomy 18.  She was amazed that Lilly lived 17 months.  I felt so proud of Lilly telling her that and all about her.

This week as I've watched T. in her many artistic pursuits and writing stories, and H. busy with his math workbooks and hooking up circuits on his own (with batteries, alligator clips, and little lightbulbs), I thought about how different they were.  And how different from them both that Lilly was.  And I am SO curious to know that Rainbow Baby will be like.

All I know at this point, is that he behaves in the womb just like H. did.  Relatively calm, and if I put my hand on my belly when he's moving around, he stops moving.  The opposite of what T. was like.  She was extremely active, and when I'd put my hand on my belly she's push back.  Amazing how they had their personalities from the beginning.  T. is very high energy and interactive.  H. is usually calmer and focused.

I am looking at one of my Lilly "business cards" on my desk.  The scripture I have on it is one that works with all my children.  Indeed it works with every one of us.

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