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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

Friday, November 30, 2012

Day 2: Lilly's namesakes

This is my second post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Once we knew from the second ultrasound that Lilly was a girl, we gave her her name:  "Lillian Eva."  "Lillian" was after her great-great-grandmother on my side of the family (photo in below left of the scrapbook page) and "Eva" after her great-grandmother (below right) on Frank's side.

The Bible was Lillians's and cranberry colored glasses were Eva's.

"Lillian Eva" is such a beautiful name to me.  Yet soon after she was born, we seemed to mainly be calling her "Lilly."  That made me think of beautiful white Easter lilies.  :)

“Rise in the presence of the aged, show respect for the elderly and revere your God. I am the Lord.” - Leviticus 19:32

Thursday, November 29, 2012

Day 1: Learning about Lilly

This is my first post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

My first ultrasound when I was pregnant with Lilly was on January 11, 2010.  We did not find out if she were a boy or girl - she was too abnormally small for the technician to tell.  We found out that instead she had several "soft markers" of a genetic disorder we had never heard of.  Trisomy 18.

On March 18, 2010, I had a second ultrasound.  This time we learned that our baby was a girl.  That the Trisomy 18 "markers" were still there.  And that she had a heart problem.

There were no problems in our hearts in loving Lilly dearly already. 

"Before I formed you in the womb I knew you, before you were born I set you apart; . . ." - Jeremiah 1:5

Wednesday, November 28, 2012

LillyBear's house tour - part 2

As LillyBear promised Tabby and Hunter, here are their Lilly things in their rooms.

Tabby has Lilly's quilt that she died on on her bed.  Lilly pictures over her bed:

Here is Tabby's memorial shelf:

Hunter's framed photos (which he selected himself) and the collages he made:

Both children also have a couple of Lilly's stuffed animals in their rooms.

In the first picture of Hunter's room, notice the round blue "bunny clock" on his nightstand.  I often tell people what a wonderful clock it is.  I set the time on it for when Hunter is allowed to get up in the morning.  When that time hits, the light behind the picture of the bunny sleeping will switch to the bunny walking.  Amazingly, Hunter has always obeyed bunny clock!  (except once I think and I sent him back to bed.)  He is an early riser, so it has just been a big help to me.  (You can get this clock here - they also have a pink cow version for girls.)  When Hunter sleeps in and bunny clock is awake before him, he gets so excited and tells me "how kind" bunny clock is being.  Other days, I will hear him pleading "oh please bunny clock - please wake up! Wake up NOW!!"

One more tip for the day - a baby tip.  I had to use this trick on Solomon this afternoon.  Tabby had been playing with him and then had him posed and playing so she could take pictures of him:

He was completely exhausted by the end and started crying.  Really crying.  Hysterical crying.  My usual bouncing-jiggling-patting-humming trick only made him cry harder instead of soothing him as usual.  So we went and stood by the dustbuster and I turned it on.  Within seconds Solomon had stopped crying.  His body went limp and he was very quiet in my arms for several minutes and then fell asleep.  Ha!  This trick used to have the same effect on Hunter when he was a baby.  Dustbuster, vacuum, hairdryer - a loud steady noise - makes them quiet and calm.  Definitely a blessing when you need it! 

"In peace I will both lie down and sleep, for You, Lord, alone make me dwell in safety and confident trust." - Psalm 4:8

Monday, November 26, 2012

My Irish Lilly girl and The Craftsy Kitty

I am very honored to share that Lilly's story is now a part of a new support website in Ireland!  It is called "Every Life Counts." ( The theme:

"A place where parents can share their memories, their stories, their love and their pain; where their children are remembered and cherished; and where we acknowledge that every life counts."

You can read about their outreach here.

I was recently contacted by Una, who had come across Lilly's blog online, and she asked my permission to post about Lilly on their website.  Of course I said "yes!"  I thought she did a wonderful job on Lilly's page, which you can view here.  It makes me so proud to see Lilly's face smiling back at me when I go to that page.

Part of my background is Irish.  So when I shared with Una that Lilly had Irish blood, she replied "she comes from good stock."  :) 

Another new blog has been started by none other than my daughter Tabby.  This is a girl that simply HAS to create.  Doing crafts is a part of most every day for her.  She recently decided to try selling some of her things in honor of Lilly.  She has listed the things she has for sale on her blog "The Craftsy Kitty".  "Kitty" is a play on her nickname "Tabby."  (Tabby cats.)  Directions on how to order items are at the top right area of her blog.

One thing that she will be selling that she has yet to list are her famous "chollipops."  These are chocolate lollipops that she makes in a candy mold.  Available flavors: dark chocolate, light chocolate, peanut butter, white chocolate, and white chocolate with crushed candy canes.  She has a lot of different candy/lollipop molds.  I think she will be asking 75 cents per chollipop.  Discounts for larger orders.  I need to remind her she also has several molds that are for the pretzel rods with the chocolate on them.  YUM!!!

Another thing she is still getting together to sell are nature note card sets.  She loves taking nature pictures.  I suggested she sell note card sets with some of these pictures.  A blue bird themed set and also a flower set are in the making.  More varieties to come.  Of course I know handwritten notes are a dying art - but she and I think they should not be!  We still get a thrill when we get an actual letter in the mail!  Don't you?  :)

"Now therefore, our God, we thank thee, and praise thy glorious name." - 1 Chronicles 29:13

Sunday, November 25, 2012

The Cherry Picker

First things first - LillyBear offers Tabby and Hunter her sincere apologies as she forgot to photograph their Lilly things in their rooms yesterday for her post.  She will do that soon!

What is Solomon looking intently at?

The cherries on my tablecloth!  He is fascinated with them and repeatedly tries to grab them with his clumsy little hands.  (By the way, the tablecloth is made of oilcloth.  I LOVE it.  Definitely kid friendly.  It wipes up so easily and when there is a spill, the wetness just sort of puddles rather than going everywhere.)

This past Friday, Solomon began using the potty.  Yes the potty!  A TINY potty:

I did "infant potty training" with Hunter too.  I never did try it with Lilly.  There just were too many other things going on with her.  (Note:  There are some children with Trisomy 18 that do become potty trained!  Not many - but it is possible.  Lilly's little friend Giuliana is one of those remarkable children.)  Anyway, like with Hunter, I noticed that Solomon would wet his diaper within a few minutes of nursing.  So instead of just waiting and then changing his diaper, I just plop him on his potty and wait a few seconds or minute or two.  When he begins going I make a certain sound.  Hopefully he'll begin to learn to associate the sound with going. 

From what I've read, many babies will make a sign when they need to go.  Honestly I never really noticed one with Hunter.  But he did learn to respond to the sound I made.  He was not fully potty trained early on though.  However, I am glad I had him use the potty, starting at 6 weeks, because we saved an awful lot of diapers.  (And wash, since I use cloth diapers too.)  And we never had any of the potty training issues that many parents talk about.  (Fear, battle of the wills, lack of interest, etc.) 

So we'll see how it works out with Solomon.

Saturday, November 24, 2012

LillyBear's house tour

LillyBear riding up for her house tour with Hunter.  (Hunter saved and saved and saved to buy his tractor himself):

I have been surprised at the number of angel moms that have shared that they have received negative comments about how they keep their angel children in their life.  For example, criticisms in having a lot of pictures of the angel child in the home, mementos of the angel child, frequently talking about them, family celebrations of the angel child's birthday and death day, etc.  Of course the people that are making those types of critical comments, which by the way hurt the moms dreadfully, think they are being helpful.  (I suppose.  Maybe they're just really uncomfortable.)  They seem to think that if those moms will just put all those reminders away then they will heal and life will go back to "normal."

Well that won't ever happen.  Those that have not lost children simply don't understand.  We don't fault them for that.  But I do hope to help my readers understand that they should never make negative comments to those of us that are doing our best to cope with loss.  We all do so in our own way and express it differently.

We are now settled into our new home.  (It feels funny saying that since the home is 102 years old!)  I thought about the above as I decorated.  I put "touches of Lilly" in almost every room.  Even the coat closet has her little pink fleece jacket she wore during her last few months.  Why did I do this?  It helps us feel closer to Lilly.  We see each other every day.  We all like seeing Lilly around the house too.  She is an important part of our family and always will be.

Now that I've shared that, LillyBear asked me to post pictures of her showing many of those "touches of Lilly" around our house.  :)  So here goes!

The outside of our Lilly Colored Farmhouse (it's actually red white and blue!):

Tabby dug up Lilly's birthday tree from our other house and replanted it on the side of our house.  (She also has replanted the Easter lilies.  We'll replant Lilly's memorial garden this spring:

For some reason, I've always thought it would be neat to have a church pew in our house.  My mother-in-law gave us this wonderful red pew.  Lilly's special quilt is on the back and her scale is underneath:

Near the pew, I have an old pie safe, also from my mother-in-law.  On top are special boxes with cards from friends in the Trisomy world.  I used one of the cherub statues at Lilly's viewing and funeral.  Hanging on the wall are special Lilly pictures from another Trisomy angel mom and from CarlyMarie:

Here's LillyBear sliding down the banister by Lilly's bunting (it says "In Memory of Lilly):

Our living room has Lilly pictures, of her alone and with us.  All the dried flowers are flowers we received when she died:

In the dining room, my special Lilly and Jesus picture is hanging over the piano.   I need to get flowers for the red clear and blue bottle vases:

Bookshelf by the piano:

This fireplace is also in our dining room.  We've got Lilly's memorial tree on the hearth, and her collage we made for her viewing and funeral on the wall over the mantel.  Lilly's crazy sock monkey on one side, the angel doll Tabby made me on the other with the r-w-b candles.  (Sock monkey needs something else by him but I haven't decided what yet):

In the kitchen, on the window sill is a jar of Lilly's therapy beans and the flag from her 1st birthday cake on the window:

Lilly's VitaMix is on the counter (I wrote her name one it!):

We have a hallway that is a bit wider than usual.  We dubbed it the Lilly Hall.  I want to paint the walls the vintage kind of green I like and maybe stencil lily of the valley flowers on a few places.  We have Lilly's scripture picture up that my friend K drew for us right after Lilly passed away, and my bag of Lilly's folders and memorial project ideas underneath:

Finally, in our bedroom we have a Lilly corner.  I have some Lilly memorabilia on my dresser and Lilly's dresses hanging on the wall.  Hanging in the corner over them is a beautiful light that Lilly and I just loved.  She loved to stare at it.  We just had to bring it with us, even though it's not hooked up to electricity right now:

The pole that held Lilly's feeding pump is now where I hang my diaper bag, Lilly's insulated food bag, and Solomon's sweater:

My husband has Lilly's funeral program and some letters "from" Lilly hanging up:

Under my nightstand is a Lilly colored basket which has the last outfit Lilly ever wore (her sock monkey pjs) and the blankets that were on her bed the last time she ever slept in it.  Unwashed of course:

Finally, here is Solomon and LillyBear in Lilly's old bed:

So what do you think - are we crazy people for having so many Lilly things up?  No we're not.  We're just a family that loves our Lilly and loves to talk about her and remember her. 

And yes - I have pictures up of all my other children too.  :)

Thursday, November 22, 2012

A thankful Thanksgiving

"To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven." - Johannes A. Gaertner

Lilly in her pumpkin hat last Thanksgiving:

"Would you know who is the greatest saint in the world: It is not he who prays most or fasts most, it is not he who gives most alms or is most eminent for temperance, chastity or justice; but it is he who is always thankful to God, who wills everything that God wills, who receives everything as an instance of God's goodness and has a heart always ready to praise God for it." - Wiilliam Law

Solomon wearing Lilly's pumpkin hat this Thanksgiving:

"If a fellow isn't thankful for what he's got, he isn't likely to be thankful for what he's going to get." - Frank A. Clark

I know this picture portraying the first Thanksgiving is supposed to be historically inaccurate, but I like it anyway:

"O give thanks to the LORD, for He is good; For His lovingkindness is everlasting."  - 1 Chronicles 16:34

(Above photo) Lilly's turkey handprints from the two Thanksgivings she was with us.  I'm off now to help Solomon make his first turkey handprint!

"[I]n everything give thanks; for this is the will of God in Christ Jesus for you." - 1 Thessalonians 5:18

Sunday, November 18, 2012

Recently my boys and I were driving home one evening and I turned classical station on.  We listened in silence for a few minutes and then Hunter asked "What does this song make you think of?"  I said "Well, it sounds both beautiful and sad to me.  What does it make you think of?"  He said "It makes me think of Lilly."  It was interesting to find out what the piece was - it was Schumann's "Scenes from Childhood."  (You can listen to it on this YouTube clip.)

Ever since that evening, it seems that Hunter has been thinking about Lilly and talking about her more than usual.  He has been drawing pictures of Lilly.  Here is one he did of "Lilly at her house":

That's Lilly in the bottom left area. 

Last month, for Pregnancy Loss and Infant Awareness Month, quite a number of Trisomy angel moms all lit candles at the same time one night, in remembrance of our angels.  It was called the "Wave of Light."  Jordan's mom recently posted this framed and matted picture of her candles, and the names of angel children written on the mat:

Lilly's name ("Lillian Eva") is at the top.  I am grateful for the Trisomy community I am part of online. 

I am participating in a special angel rememberance project for Christmas.  But I'll have to share more about that later, I just realized that Solomon has leaked in my lap.  Babies can be so messy!  But so can we - just in different ways . . . .

Thursday, November 15, 2012

2 and 11

Today Solomon turned 2 months old.  Today marks the 11th month since Lilly passed away.  Our rainbow boy has taken some of the sting out of "The 15th" though of course we still miss our Lilly, and always will.

Solomon has some things in common with his big sister Lilly.  Neither of them like/liked to sleep with their arms under the blankets:

Notice in Lilly's picture she also has pulled a "sneaky Lilly!"  (sock off)

Solomon has found the couch corner to be a good place to chew on his fingers, just like big sister Lilly did:

I read the other day that "one thing to NEVER say to a grieving parent" is that "their child is in a better place."  I imagine that is true for many.  But knowing that that brings me more comfort in my missing Lilly than anything else - knowing that she is in a "better place."  I know you had another perfect day in heaven, my sweet Lilly girl ....

Sunday, November 11, 2012

Turkeys on the tree

I feel like such a bad mommy - we just decorated Lilly's tree for the month today - a week later than we wanted too.  But it is done, though I think we'll need to make a few more turkeys to fill in.  (Turkeys are this month's theme.)  We had to get new lights again - our last string burned out.  Here is the tree:

Each Thanksgiving, I have the children draw a "turkey hand" and we put it in a notebook.  I copied the two I had done of Lilly's hand (2010 and 2011) and put them on the tree:

I like how Lilly's hand turkeys show her growth - not only in size, but in how she wasn't clenching her forefinger as much.  (Many children with Trisomy 18 keep their hands clenched.  It loosens up as they grow, though mom's of older children have told me that when their T-18 child gets sleepy, they often softly clench their hands again.)

Hunter made a big turkey for the tree with cardstock and popsicle sticks:

Tabby made the turkey topper with a tiny flower pot and pipe cleaners: