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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, May 30, 2012

My Memories Suite free software giveaway (Digital Scrapbooking)

If you've read this blog at all much, since Lilly went to be with Jesus 5 months ago, you know that we have done a lot of memory projects about Lilly.  And we don't seem to be running short of ideas either!  Memory projects are, for us, a way of working through grief, helping to heal, and keeping Lilly's memory alive.

Recently I was contacted by a woman named Liz from My Memories.  (Think digital scrapbooking.)  She had come across Lilly's blog and said she really liked it.  She wondered if I would like a free copy of the My Memories Suite software program to try myself, and one to give away.  My first thought was "LOL - I've arrived as a blogger!  A stranger has contacted me for a giveaway!"  Then I was a little suspicious.  But I did a google search and found that Liz has done this deal with a number of other bloggers and it seemed to go very well.  Then I read the reviews of the My Memories Suite software on and found that they were all very positive.  So I agreed to give it a try.

Let me first say that I love the idea of scrapbooking. And at the same time I find it completely overwhelming!  Shortly after Lilly was born, my nephew's wife L.S. gave me a scrapbook for Lilly where she pre-made a bunch of pages and had them all ready for me to just add pictures.  I loved it.  And because I was so busy caring for Lilly, that was all I could handle.  During Lilly's life, I collected scrapbook pages I liked here and there and have just saved them.  Then our local scrapbook store shut down recently and I got a stack of paper and embellishments for pennies.  I even bought a couple scrapbooking idea/technique books at used book sales.  (Yes I like to research everything!)

So why haven't I completed my amazing Lilly scrapbook yet?  Pictures!  I have 1000s of pictures!  And I had them developed in big batches and they came back to me all out of order.  I am STILL sorting them out when I have time.  (There are times I enjoy going through them and other times it's just too upsetting, so it's hard to make steady progress.)  Since I have so many supplies, I am determined to finish the scrapbook, Lord willing, before our rainbow baby's birth in September.  But it's still overwhelming.

However, after I downloaded the My Memories Suite I was able to crank out several experimental pages in a short amount of time.  It was so easy and fun!  I got to just paste in pictures, which were all on my computer already (and importantantly - IN ORDER!)  No searching to find them. 

On the software, when you make a page, you can select from a "designer template" or make your own from scratch.  Here are two I did with the pre-designed format, adding photos, text, and embellishments:

It only took me about 15 minutes per page, and the majority of that time was in just selecting which pictures I wanted to use.  The software program is truly so easy to use, I was able to figure everything out without clicking on "help."

I also made a scrapbook page where I just started from scratch.  It too was very very simple.

I'm not an expert on page layout and design.  But I was still pleased with how the page turned out.

So what do you do, once you create a whole scrapbook?  You can upload it to the My Memories website and select a cover and have it printed.  I thought the cost was very reasonable.  I am by no means a scrapbook expert but I've observed just how expensive all the stickers and special papers and other embellishments can be.  Making a scrapbook digital can be much much cheaper.

The My Memories Suite does more than just digital scrapbook pages.  You can also create calendars.  Here is one I made in minutes:

I read somewhere that you can make greeting cards too.  I haven't figured that one out yet.  I am wondering if perhaps that function is not on the version of the software I have.  Or maybe it is done directly on their website.  And, there is a function to add music, but I did not try that one.

So!  If you've read this far I know I must have your interest!  How about it?  Want to take part of a little contest to see if you can win this simple, fun, and powerful software?  (Great soundbite, huh?)  Here is what you need to do:

1) Visit the My Memories website at: and pick a digital paper pack or layout that you really like.  Then leave a comment on this blog, or e-mail me at LittleFirecrackerLilly (at), telling me what you chose.  (If you choose to leave a comment rather than e-mail me, please be sure you leave a way I can contact you if you win.)

2) For a double chance at winning, also share with me a favorite memory of Lilly that you have, or a blog post you liked, or a picture of her you really like.  :)

This contest will END on Friday, JUNE 8th, at 6:00 p.m. (EST).  I will take everyone's names and put them in a jar for a drawing.  (Remember - if you do steps one and two above - you get TWO entries!)

If you don't win, or if you would like to just buy the My Memories Suite software, you can get a $10.00 discount on your purchase, plus a $10 coupon for the store, by using this discount code at your checkout:


Note that you can instantly download the software after purchase, or have the software shipped to you.  On that same page, you can also click to download a free trial. 

Feel free to share this contest with your friends, family, or anyone you feel would be interested.  I look forward to hearing from you!  :)

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." - James 1:17

Tuesday, May 29, 2012

All that Red White & Blue

Photo: This patriotic rabbit is one of my favorite decorations at my in-laws river house.  Our son calls it a "Lilly colored bunny."

My family has enjoyed all the extra red-white-and- blue everywhere this weekend, in honor of Memorial Day.  Of course we know it is to honor veterans and we are very grateful for them.  But it sure honored our Little Firecracker in our minds too.

Just a note here about colors.  Obviously we associate red,white, and blue with our Lilly because she was born on Independence Day.  Another Trisomy angel mom recently shared with me that she loved the color green and often bought things she needed/wanted in green if they were available.  Green is the color for the month which her angel baby was born.  And so, it has become a color that just makes her feel closer to her daughter.  (You can see birthstone colors by month here.)  It's sort of funny how simple things like this can help in healing.

We were able to make a brief stop at Lilly's grave yesterday.  Much to my huge disappointment, I realized a few moments ago that I managed to delete the photos I took without loading them!  :(  But the cemetery looked nice. All along the edges it was lined in little American flags.  Lilly's had her angel wings for 5.5 months now yet as we left I still found myself shaking my head and thinking "I can't believe I've buried a child."

In honor of all the red-white-and-blue ("Lilly colors") below are a couple more pictures from the last week or so.

I've been wanting to buy or make a tree skirt for Lilly's memory tree but couldn't decide on just what or how.  Then I found this star table runner and I decided it would be perfect.  For now anyway.  It has four cloth stars and they button together.  I unbuttoned them and just laid each around the base of her tree.  It looks quite nice.

I found these pretty red, white, and blue bottles and thought they would be just right under Lilly's framed collage which hangs over our kitchen table.  I want to try and keep flowers in them year round. Thankfully our butterfly garden is bursting with flowers right now. 

T. painted this flower pot:

I bought this outfit for our rainbow baby.  T. talked me into it.  It is the first thing I've bought for him.  I felt completely numb about it.  But after a few days I started thinking it might be fun to bring him home after his birth dressed in it.  Also, I am happy to share that I have finally started to bond some to this baby.  What changed?  Well I think confessing my lack of bonding out loud to my midwife and then sharing on this blog and getting some helpful feedback, then going through with buying the below outfit, and then going to our state's homeschool conference last Friday and seeing lots of babies strapped on their mamas in baby carriers, have all helped.  And maybe people have been praying for me too?  But I do know my feelings have begun changing and that is a relief.

H. is wearing his "Lilly colored outfit."  He always likes wearing it because he says it "makes him think of Lilly."  He seems to be worrying lately about forgetting her.  H. is happily standing before a display of old cars, including a toy milk truck. (He has a thing for old milk trucks and even bought one off Ebay with his own money.)  This picture was taken at the Pantego Academy, located in Pantego, North Carolina.  (If you're ever in the eastern part of the state - or not! - you should really visit here.  It is such a fascinating museum!  My mother-in-law helps with it so we got a special tour yesterday after helping her carry in some things she was bringing for displays.

I am so thankful for the array of colors God has created, and for memories.

"At all times and for everything giving thanks in the name of our Lord Jesus Christ to God the Father." - Ephesians 5:20

Thursday, May 24, 2012

Announcing the arrival of ... our new special Lilly Bear!

 This past March was "Trisomy Awareness Month."  The mother of Sophee, a little angel girl that lived almost 6 months with Trisomy 18, had an auction to benefit a Trisomy support group.  (Sophee's mama has a non-profit shop on Facebook that helps other families going through hard times.  You can read the mission statement here.)  

One of the items in the auction was a special bear that would be handmade for the winner.  (Unlike the rest of the auction, this would go to the person who's name was drawn rather than the highest bidder.)  K., the seamstress, is a mama who volunteered to make a bear in memory of Maisie, her angel baby girl that had Trisomy 18 and was stillborn.

Amazingly I won the drawing for the bear!  I sent K. two of Lilly's flannel receiving blankets to use to make the bear, and shared a little information about Lilly with her.

 Today the finished bear arrived, much to our delight.  It was even better than I imagined!  K. put so many "Lilly details" into the bear.  Red, white, and blue bows grace the bear's ear.  The heart on the bears chest/tummy says "Lilly 7/4/10 - 12/15/11."  It has red, white, and blue star buttons sewn by it.  (And as T. pointed out, the stitching is like little firecrackers.)  The inside ears, hand and foot pads, have two fabrics.  One is red with little white hearts and the other is blue with white flowers. 

On the bear's footpads is embroidered Lilly's birth weight:  5 lbs. 4 oz.  And the amazing thing is - the bear actually weighs ... 5 lbs. 4 oz.!  Of course the bear's weight is distributed a bit different than Lilly's was, but it is still quite amazing to think about and feel.

K. made the bear from a pattern and it is 19" long.  How fun because Lilly was 18 inches long when born.  T. and H. and I all had to take turns holding Lilly Bear - she just feels so good!  H. gave her lots of kisses and T. wanted to carry her around.  

Finally, here are two pictures of baby Lilly, with the blankets K. used to make the bear.  One is green with little white polka dots and the other a solid green.

Lilly is about 3 months old here:

And about 9 months old here:

THANK YOU K.!!  We all are in love with our special Lilly Bear! :)

Wednesday, May 23, 2012

Gift of a Lifetime perinatal booklet

"There is no footprint too small that it cannot make an imprint on this world."

I love this quote that is used by Now I Lay Me Down To Sleep.  It is so true!  (NILMDTS is a worldwide group of photographers that volunteer to take beautiful, black and white photos of babies with their families.  Babies that are stillborn, or aren't supposed to live long.  (Read NILMDTS "about" statement here.)  We first learned about this service when I was pregnant with Lilly.

Four days after Lilly was born, a photographer came to our house to take pictures.  (Often the pictures are taken in the hospital, but we left so quickly with Lilly, that did not happen with us.)  Today's pictures feature Lilly's tiny feet, a perfect illustration of the footprint quote above.  :)

About a month after that, through our photographer from NILMDTS, we found out that Focus on the Family was looking for photos from NILMDTS families to use in a new booklet called "Gift of a Lifetime" by Tammy Tate.  The purpose of the booklet was to give information and resources to expectant parents that receive the news that their baby may not survive birth.  We agreed that he could submit our information.  We were excited when we ended up being one of the families choosen to be in the booklet!  (You can see my August 28, 2010 post about it here.) 

The booklet was published and is available through  here.  (You can also click through the picture on the right sidebar of this blog to get to the ordering page.) 

This past March, I heard from our contact at Focus on the Family that they needed to do a second printing of the booklet.  This kind woman, who had followed Lilly's story through the blog, said they were very interested in getting some newer pictures of our family with Lilly to show that we were blessed to enjoy an unexpected 17 months at home with Lilly.  So I submitted one of our family that was taken by our NILMDTS photographer (he came back several times!), and a couple I took of Lilly.  The Focus on the Family team selected our family picture and the picture of Lilly from this blog header for the booklet.  What a blessing to be able to share these pictures with others, to give them HOPE.  No matter what doctors tell you - they really just don't know if your baby is going to survive and if so - for how long that might be.  So never give up HOPE!

"All the days ordained for me were written in your book before one of them came to be." - Psalm 139:16

Sunday, May 20, 2012

A lily blooms!

Yesterday we were thrilled to find that the first lily flower in Lilly's memorial garden had opened.  It is yellow and on the row where I planted "lily asiatic mix" bulbs.  Beautiful!  (Just ignore all the weeds - ugh.)  I put the angel I got on Mother's Day next to it to mark it as the first bulb to grow and bloom.

I wanted to share a poem that was on a bookmark that came with the heart ornament I also received on Mother's Day.  That last stanza is my favorite.

A Gift From Heaven by Kristan Dean

I am with you always
I live in your heart
I speak to your soul
We are not far apart

When you feel a light breeze
Hear the songs the birds sing
Know that I see every smile
Your kindness can bring

I see you building your dreams
With wisdom and grace
And asking His guidance
With each challenge you face

I am more than a memory
You will feel our love grow
I am forever your angel
Some things you just know

Please tell me your thoughts
Your hopes and your fears
And know that through faith
He will heal all your tears

For today, I can share
That in Heaven above
God has taken my hand
I am complete, I am in love

Thinking of you, my angel girl, Lilly!

Friday, May 18, 2012

A delightful surpise on SOFT's website

Painting by T.

Yesterday I had a check up for Rainbow Baby at the birthing center.  I was so happy that the midwife I saw yesterday was the one that I spent the most time with when I was pregnant with Lilly and who  helped deliver Lilly.  I feel like we have a special bond.  She said she is going to try and be the one to deliver my Rainbow Baby.

My son H. went with me and he told the midwife what he and T. wanted to name the baby.  A name my husband suggested.  She asked me what I thought.  I said I still didn't feel able to think about names yet.  I admitted I've been having trouble bonding normally to this baby.  She said she knew, she could see it in my eyes.  I feel horrible admitting that because I am so grateful to God for this baby.  But, according to a number of other Rainbow baby moms, this is normal.  Some were able to bond later in their pregnancy.  Others did instantly once they finally held their babies in their arms.  So I guess I'll stop feeling guilty and just give it time.  I share this to help anyone else out there reading this that may be having the same emotional struggles.

The appointment went well.  It is so reassuring hearing the heartbeat.  I did find out that baby boy is breech, something they didn't tell me when I had the ultrasound.  The midwife told me "no more breech!"  The baby still has lots of time to turn on his own, and I'll do all I can to turn him.  Still, because I delivered Lilly breech and it was "quick and easy" so to speak, we aren't going to automatically say "c-section" if he stays breech.

H. really enjoys going with me to the appointments.  He was fascinated watching me get my blood drawn at the glucose test and he thinks the doppler that we hear the heartbeat on is amazing.  I am glad as it really helps me a lot to have the cheerful little guy with me.  Driving to and from my appointments I pass so many doctors and pharmacists where I had taken Lilly during her life.  I could do the trip alone, but really would rather not at this point.

Last week I was on SOFT's website (Support Organization For Trisomy 18, 13, and related disorders) getting some information, and I was surprised - and THRILLED - to see a picture of Lilly staring back at me from the top of the website of pictures of Trisomy children that flash up.  As I watched I saw several other children I recognized and then TWO more of Lilly.  That made me feel so good.  :)  The three pictures of Lilly in today's post are the ones that are on SOFT's website.
If you ever need a carebook about Trisomy 18 or 13 children, you can get the best one on SOFT's website:  Care of the Infant and Child with Trisomy 18 or Trisomy 13 by Ann Barnes with John C. Carey, MD.  (Ann had a daughter, Megan, with Trisomy 18 that lived almost 20 years!  She lives about an hour away from me and came to visit Lilly at one of her hospital stays.)  Here is where you can order the 2nd edition in paperback.  Or, you can buy and download the 3rd edition (updated 2011) from here on their website. 

It makes me happy to share that there are two quotes from this Lilly blog that are included in the book.  One from this post regarding results from her audiologist (that as Lilly grew, and her ear canals got bigger, perhaps she would hear better), and the other is compiled from these two posts (one and two) and our discovery about preventing her obstructive apnea.  (Have her sleep only on her tummy or side to keep her tongue from obstructing her breathing!)  I hope those two tips will help parents of other Trisomy children.  I know Lilly's life was not in vain!
"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
Lilly photos today:
1 - at her first sleep study - Feb. 2011
2 - after her heart repair surgery - Nov. 2011
3 - just after turning 1 year old - July 2011

Wednesday, May 16, 2012

Name in the sand

Last week we were blessed to be able to spend two days at Atlantic Beach, N.C. for free.  My husband was thankfully able to take off work. We all really needed a break to do something different. 

We spent time with some relatives, on the beach, in the ocean, and in the pool.  We enjoyed writing in the sand with our fingers and with shells.  Our son H. recently learned to write the letter "H" and wrote dozens of "H's" in the sand. 

This was a great time of year to go because there were so few people there.

Of course Lilly was in our thoughts much of the time.  As we walked the beach our first evening, our daughter T. wrote "In loving memory of Lilly" in the sand.  (photo 2)

I love the pictures on the names in the sand blog and was really hoping to take one like them of Lilly's name.  I could see it clearly in my head while packing for the beach - the beautiful sunset beyond the ocean and Lilly's name sparkling in the sand before it.  It didn't hit me until we were almost to the beach that the sun probably wouldn't set in that direction over the ocean we were going to!

It turned out my guess was unfortuntately right.  The sun set  across the sand, not the ocean.  I took a bunch of pictures but thought it was interesting that only two turned out with some sun reflecting on the sand.  They look very pretty and peaceful.  But you can't see that reflection in any of the others for some reason.

The woman that takes the wonderful names in the sand photos is the same one that did the photo of Lilly's butterfly in the sand.  By the way, the notecards I had made of that picture turned out great!
Speaking of butterflies, I found out from another Trisomy angel mom that there is a mother that lost triplets that does butterfly releases in honor of other angel children.  Her blogspot is called triplet butterfly wings.  As she releases the butterflies, she takes pictures, which are beautiful.  My kids and I recently raised painted lady butterflies from caterpillars.  We released them by Lilly's garden hoping that we would get some great pictures of them crawling over Lilly's cherub statute.  But no luck.  Ours went crazy flying all around the yard.  "Wheeeeee!  We're free!" they all shouted.  So I requested a butterfly release for Lilly from the triplet's mom, and Lilly is on the waiting list.

Yesterday marked 5 months since Lilly went to be with Jesus.  It seems horribly long and yet in some ways fast.  My husband remembered her by wearing his "Lilly colored" tie to work:

T. drew a picture of Lilly's hand reaching for a lily flower:

Last week H. wanted to cut and glue some pictures.  I asked him what he would like me to print for him to use.  He asked for pictures of Lilly.  He said he needed them right by his bed so that he would see them when he woke up because it would help him remember about Lilly. 

On a completely different note, our two homeschoolers had quite a nature study today.  This morning when we were working in our office/schoolroom, we looked out the window and saw a big snake (Eastern Garter?) on our porch.  It had just come down from a hanging fern and had a bird feather hanging out of it's mouth.  Yuck!  We, like most people, think snakes are gross and creepy and yet really interesting.  Thankfully there were no baby birds in that plant like there have been all the other years we've been here.  After the snake ate the feather, it slithered down the porch rails and into a bush.  (You can see the snake in the first picture - it is the long dark thing to the left of the flower box - part of it is still in the flower box.)

We were worried about baby birds after seeing this.  We recently discovered that some birds (Carolina wrens?) had built a nest in H's seat on my bicycle and laid 5 eggs.  So after seeing the snake, we went to check and see if the eggs were still there.  As I pulled the bike out of our little shed to check, one of the parents knocked into my hand in its hurry to fly out of the nest.  We found that 3 of the eggs had hatched, and there were some hungry baby birds in that nest!

Sunday, May 13, 2012

"True love is always alive"

Mother's Day.  What a mess of emotions that can be for so many women.  I am blessed to have two healthy children and another baby on the way.  Yet my heart is broken that one of my girls is in heaven.  I have several friends that have suffered numerous miscarriages or were simply never able to get pregnant.  Some were able to have children but others have a handful of children, that they never met, in heaven.  My heart goes out to them every day, but especially Mother's Day.

I came across an interesting scripture last week.  A promise God made to the Israelites:

"Worship the Lord your God, and his blessing will be on your food and water. I will take away sickness from among you, and none will miscarry or be barren in your land. I will give you a full life span." - Exodus 23:25-26

That's a pretty incredible promise - all the people had to do was worship and obey God.  But they just kept messing up.  Like we all do.

My day today was certainly different than last Mother's Day when Lilly and I were at the hospital and she "code blued" and almost died.  It was a horrible, frightening scene to watch as doctors and nurses worked quickly to save her life after her breathing stopped and heart rapidly dropped.  (You can see pictures of that hospital stay, including Mother's Day, here.)   But she pulled through, and amazed the doctors and they began calling her "Lil' Fighter."  Ten days later we triumphantly left the hospital.

Today my Lilly is in heaven having a perfect day.  My day wasn't perfect, but it was not bad.  We were out-of-town, staying with my mother-in-law since yesterday.  Today we went to church with her and then out to eat at Andy's, my favorite restaurant.  (Yum! I love the cheesesteaks without onions or peppers!)  Then my family and I went to visit Lilly's grave.

I had bought a new decoration for Lilly's grave site - an angel chime on a stake.  It says "True love is aways alive."  The chimes sound so pretty!

T. and H. had painted rocks for Lilly's grave and T. also painted a butterfly and rocking horse.  They set the rocks on Lilly's gravestone and the ornaments nestled into her wreath.

Then we sat around her grave and shared some M&M's.  Wish I had brought some of Lilly's super healthy chocolate!

Then I had a few minutes alone.  I thanked God for Lilly's life and allowing me the honor and blessing of being her mother.  I prayed for a number of mom's I know, some of Trisomy children and some not, all who have children in heaven.  Then I had a good cry.

When we got home this afternoon, I found that Little Firecracker had left me a gift in the yard, next to her crape myrtle tree.  (Thanks mom!)

Lilly wasn't done with her gift giving.  She also had my husband hand deliver two more gifts.  A heart ornament with chimes (the smaller heart says "Lilly 2010-2011") and a memorial stake for our lily garden with an angel that is holding a heart that says "Lillian Eva 529 :) days".  Thank you F.!  I love them!  :)

Here's is Lilly's message on a card attached to the gifts:

I thought the typo in what is supposed to be "happily" was funny - it says "happLILY."  I miss my Lilly too, and every day I am glad it's a day closer until I do get to snuggle with her again.  But I know my children and husband need me and so I still have things to do here. 

Thank you Lord for blessing me to be a mama to an angel in heaven, and several on earth.

Monday, May 7, 2012

Miscellaneous pictures and tidbits

"If Love alone could have spared you ... you would have lived forever. Lillian Eva 2010-2011" 

Thus reads a stone we have in Lilly's memorial garden.  Of course Lilly is living forever.  Just not on earth with us.  The love of Jesus has spared her for eternity.  :)  Still, I like the wording of the stone.  It's hard to see in the picture, but one of the bulbs in her garden is growing through the heart hole.  It is a star gazer lily.

We bought a couple of plants this past Saturday and I just had to get this one as well. It has red, white, and blue flowers!

I recently asked on the Trisomy 18 Mommies group where I could get a T-18 Awareness sticker for our vehicle.  In general I don't do bumper stickers!  But sitting in traffic recently I realized what an opportunity it would be for others driving behind us to read "Trisomy 18."  All part of our grassroots effort to help other people learn a little something.  :)  Two moms answered that they would be happy to send me some magnets for free!  (They both have children with Trisomy 18 that are currently alive, and over one year old - one is a girl, the other a boy.)  Both moms kindly sent two magnets each.  So, that gave me one for each vehicle, and one of each for the refrigerator. 

My daughter T. enjoys beading and she made me a special bracelet with red, white, and blue and stars, in memory of Lilly.

The weather last week was HOT.  Several days in the 90s meant that the kids could do some water play after schoolwork was finished.  My son was anxious for me to get Lilly's pool out, dubbed "the lily pad" because he said it made him think about Lilly. 

Here's a picture of Lilly last July, with big sister T., staying cool in her "lily pad."