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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

Sunday, October 13, 2013

Field Trip to the Bentwillow Bunnies farm

Since we have our own little farm now, we have become very interested in the set up of other farms.  So last week we were excited to visit
 Bentwillow Bunnies farm, which is located only about 15 minutes from us and is owned by a family who have students that attend the school my husband works at.  They have rabbits, chickens, and peafowl which they raise and sell.  How cool would that be, to have a peacock strutting around your yard?  Frank remembered when he was a little boy, his uncle down the road had a variety of animals, including peacocks.

There were so many adorable bunnies!  (Holland Lops and Netherland Dwarfs)  Tabby immediately asked how much they were and is considering asking for one for Christmas!


Solomon enjoyed petting a rabbit:


We were all delighted to hear "peep! peep! peep!" and saw some chicks.  Hunter was happy to hold one:


Next were the "peafowl!"  I had always called them peacocks, but I learned those were the males.  Females are peahens and babies are peachicks.  I think the peacock blue color is the most beautiful color blue in the world:


We got to feed the peafowl a special treat - cat food!





Tabby talked chicken language to some of the free range chickens:

  

As a bonus, we got to meet some of the horses that lived next door:





Solomon's very favorite part of the whole visit though, may very well have been his getting to open and close a gate a bunch of times:


Didn't God make such an amazing variety of creatures?  And they all praise Him too!

"Then I heard every creature in heaven and on earth and under the earth and on the sea, and all that is in them, saying:  'To him who sits on the throne and to the Lamb be praise and honor and glory and power, for ever and ever!'” - Revelation 5:13

Friday, October 11, 2013

Capture Your Grief - Days 9 & 10 & 11

Day 9: Music.
Music that reminds you of your child.


Inside the program for Lilly's funeral, we included the music to the six songs we sung.  Each song was significant in some way.  The songs were:

1. "As the Hart About to Falter" - This is from Psalm 42.  This was a psalm that my husband chose for us to sing.  To me this psalm has a sad sound to it and it always makes me tear up when we sing it at church now.

2. "How Firm A Foundation" - This was Lilly's comfort song.  Humming or singing this particular song to her would nearly always comfort her. To hear Tabby play this on piano, click here for the video. 

3. "My Jesus I Love Thee" -  I love this hymn and sang it to Lilly a lot.  I remember it being sung at the funerals of several relatives.  I find peace in the hymn.  Here is a video of Tabby playing this on piano. 

4. "Amazing Grace" - A hymn we've sung to all the children.  Video of Tabby playing this on piano here. 

5. "The Lily of the Valley" - "Lily" is in the title!  Need I say more??  Video of Tabby playing it on piano here. 

6.  The Doxology - was perfect for concluding Lilly's funeral service:

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.


We continue to praise God for all 529 days He allowed us to have and hold Lilly.  (And yes, sometimes I am greedy and wish it had been longer.)

Day 10.  Beliefs.
What happens to us after we die?

The cross was actually made to hold photos. I tied flowers from Lilly's casket spread on it.
 I do believe in heaven and hell but I am not sure exactly what happens to us right when we die.  I love to talk about Lilly in heaven with Jesus and having the perfect time simply because this makes me the happiest.  However, I do think there is good evidence in the Bible that we "sleep" until Jesus returns. 

Attorney and early church historian David Bercot shares a fascinating message on his CD entitled What the Early Christians Believed About Life After Death.  (The CD is available from Scroll Publishing here.)  The early Christians believed that our souls go to a waiting place until judgment day.  Paradise/Abraham's Bosom or Hades.  This makes the most sense to me, listening to excerpts from the early Christian writings and corresponding scriptures. 

But, I do believe that whatever happens exactly, that Lilly is at perfect peace.  And I believe that because I am a follower of Jesus, that I will one day hold her in my arms again.

Day 11.  Emotional triggers.
What triggers emotions associated with grief for you?

Lilly's red-white-blue Christmas tree
 Lilly was born on the 4th of July and died December 15, just 10 days before Christmas.  Obviously both of these holidays are triggers for me.  Christmas more so I think.  Excitement is associated with July 4 because Lilly had survived her birth.  But Christmas?  It has a hollow feel to it now.

Little girl red-white-blue clothing pokes at my heart.  Passing hospitals or doctors Lilly visited sometimes makes me cry.

I think of her every day though, so the "trigger" thing isn't a real clear question for me to answer.  Especially because sometimes something will make me cry and other times I may smile.  Why is that??!!

Tuesday, October 8, 2013

Capture Your Grief - Days 6 & 7 & 8 and ruffle scarf benefit

Day 6: Ritual.
What is something meaningful done on special dates.


My husband and I have a ritual of always wearing "Lilly colors" on the 4th and 15th of each month.  (Lilly was born July 4, died December 15.)  My husband wears his Lilly-colored tie to work.  I like wearing my Hello Kitty shirt that matched one Lilly had.

We also continue to change the decorations on Lilly's tree on the 4th of every month.  This month's theme is owls and pumpkins.


Day 7: You Now.
Where are you in your grief journey right now. 


Sunday marked the one year anniversary of our living in our "Lilly colored farmhouse."  I was extremely anxious about moving out of the house Lilly had lived in and leaving the town that was full of Lilly memories.  However, our moved has proven to be one of the best things we could have done for our healing process.

Overall I am at a much better place than I was a year ago.  I don't cry as often or feel so sad.  There still are "triggers" that surprise me at times and make me tear up.  But from what I understand from other parents who have lost children, this will always be the case.

Day 8:  Color.
What color/s represent your child?

Mike, The Liberty Bear by Cindy McGuire
I guess just about any reader of this blog can answer this question.  Red-white-and-blue in honor of Lilly's 4th of July birthday! 

I saw this Lilly-colored bear in a catalog and thought it was so oddly cute.  A bit of a different looking bear, just like Lilly was a bit of a different looking girl. (I saved the picture from the catalog but can't afford the $100+ cost of the bear!)

Fundraiser for Now I Lay Me Down To Sleep:

Thinking of Lilly colors and this month being Pregnancy and Infant Loss Awareness Month, I asked Tabby to make several Lilly-colored ruffle scarves for me to sell.  Or - you can call them "Americana colored" or "Patriotic."  ;)  I am asking $10.00, which includes shipping.  One-hundred percent of every purchase will be donated to Now I Lay Me Down To Sleep, the group that gives the gift of remembrance photography to parents suffering the loss of a baby.  Here is a scarf sample:


If you would like to buy a scarf, just let me know!  Use my regular e-mail address if you have it, or you can e-mail me at LittleFirecrackerLilly   (a t)  gmail . com   Thank you for your consideration about this great cause!

By the way, Tabby is doing a "31 Days" posting for this month.  Her theme is Lord of the Rings.  (I've lost track of how many times she has read through J.R.R. Tolkein's series!)  So if you're a fan or are interested, be sure to click on over to The Goat Chick!

"He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart." - Psalm 91:4

Sunday, October 6, 2013

Oakview Park's Heritage Day

I thought I'd take a break today from my "Capture Your Grief" series and share about our outing to Historic Oak View County Park yesterday.  It was "Heritage Day" and there were a bunch of interesting things to see at this beautiful old farm.  Animals, antique cars, horse drawn wagon rides, vendors, bluegrass music, quilt auction, etc.  (The farmhouse was built in the 1800s and they farmed cotton.)

Hunter and Solomon loved the old Ford tractor.  Hunter liked to shift while Solomon steered:


Tabby was excited to see goats:



This might have been the first rabbit Solomon has seen:


We all like antique cars.  Tabby liked this one:


I've always liked these - reminds me of the mafia:


Antique tractors are a hit too:




One really neat thing we watched was a group of men put a car together, from parts, in under 7 minutes.  The parts were all cast off old car parts that they used to build a funny old looking car that actually ran!  Here is how they started:


When it was finished, a man drove it and then let people sit in it.  Solomon thought it was interesting but the steering wheel a bit hot:


Hunter studied the car from every angle and even asked questions:




Turn the crank to start it, Solomon!:


There is an education center near the farmhouse that is a really neat set up.  My favorite area is like a cabin with old kitchen.  The wooden piece here is an icebox:


 
There was even an antique pump vacuum cleaner in that room!  We have only seen one of those online.  (Hunter has loved vacuum's since he was a toddler.)


Solomon was happy to find cabinets to open and close (still his favorite activity):



Other outbuildings of the farmhouse included a kitchen, stable, and barns.  One big 2-story barn had cotton processing equipment in it.




Do you know what this is that Hunter is holding?


Answer:  Ford ignition coil.  We found it recently under our car hood and have no idea why it was lying loose under there.  (All the other coils seem to be in place.)  So Hunter asked for the part.  That is what he brought to Oakview and carried it all over the park.  Except at one point, he put it down and lost it.  He was so sad!  As we were leaving Frank suggested we check the lost and found, not thinking we'd actually find it.

But there it was.  Someone had actually turned it in!  The employees were shocked that someone actually came and claimed it!  They had no idea what it was and told each other it was the weirdest thing ever turned in and that there was no hope it's owner would come asking about it.  We all had a good, amazed, laugh.  Hunter thanked God and rejoiced!

The day had turned out pretty hot and it was good to take a bath that evening!



There - now do you feel like you've been to the park too?  That was a lot of pictures, I know.  Oakview is a fun place and the educational center has some neat learning activities for children.  You can see the park's website here.  (The park is located in Raleigh, N.C.)

Saturday, October 5, 2013

Capture Your Grief - Days 4 & 5

Day 4: Legacy.
Your child's legacy.

 
Lilly's legacy is both "earned and learned."  Above are some of her things that Tabby and Hunter picked out to keep and cherish.  Tabby choose Lilly's little quilt she died on, her stuffed bunny, her  doll Sunny, and small caterpillar.  Hunter choose her dog Jo-Jo and big caterpillar Argyle.  I will allow Solomon to choose something when he is older.

But these are just things.  Things that Lilly never even played with like a "normal" child.

The biggest legacy she left us was that my family and I now truly see all special needs children as a GIFT.  Not broken or defective.  Not children that we need to be uncomfortable or squeamish around.  Not children we try not to stare at.  No, we look at these children with a big smile now and think how blessed their families are.

How we would love to see our little girl's big beautiful smile once more.


Day 5.  Memory.
What is the first memory of your child that comes to your mind?

It is a jumble.  It depends on the day.  The minute.  The hour.  I can clearly see how Lilly looked when I found her dead.  I remember watching her 3 distinct times when she almost died - wondering if that little soul would leave her body then.  I can't shake the bad memories.


But I don't have one good memory that comes to mind.  That is not just one.  I've been pondering this question for awhile.  I have so many Lilly memories.  Days, smells, landmarks, sounds - these all trigger Lilly memories.  Most are good.  For the most part Lilly was always near me.  In my arms or lap.  Strapped to me in a baby carrier.  In her bouncy seat by me in the kitchen.  On her mat next to me on the floor.  At night I always snuggled and played with her before laying her in her co-sleeper next to me.

Her hair.  Her soft hair that stuck up wildly in sections.  I can almost feel her hair gently tickling my neck and chin as I remember holding her.  I loved that feeling.  The very last time I held her, I picked her up out of her wee white coffin and held her against me and felt her soft hair.  The rest of her body was heavy - it did not feel like Lilly anymore as it was prepared for burial.  But her hair - that was still Lilly.

One of our very best family pictures is of us all by Lilly's coffin with me holding her body.  Why did that have to be one of our best?  I am sitting here tempted to post it.  But I may have depressed you enough.  Instead:


I mentioned in my last post about Laura Ingalls Wilder having a baby boy that died young and how she never mentioned it to people.  A reader reminded me that Laura had also had a baby brother that lived a very short life.  I remembered reading that when I was young.  But when I also re-read it as an adult, post Lilly.  Thinking about Ma Ingalls and what she must have felt losing that little boy feels a lot different to me now than it did when I was younger.  I think of how they buried their little baby in a lonely place and moved far away.  How that must have broke Ma's heart further to leave!  And how sad she did not even have a photo of her boy to remember him by.

How very grateful I am for all my Lilly pictures and video - in full color.  What a precious blessing, one which I continually praise the Lord for.

Thursday, October 3, 2013

Capture Your Grief - Day 3

Day 3: Myths
Myths about grief.

 
In MY opinion, one myth about grief seems to be that if you mention the person that passed away, it will make their loved ones more sad.  That they will suddenly remember about them and get upset.

I would say most of us love to hear our baby's name.  Yes it may make us cry.  But guess what - we think about that child very often anyway.  It makes us feel good when someone brings up our baby because it means that person remembered them.  We don't want out babies forgotten.  No matter how short their life was.  Most of us find healing in talking about our dead children.

I say "most."  We all grieve differently.  Those of you that are Little House on the Prairie fans, did you know that Laura and Almanzo Wilder had a baby boy?  He did not live long and apparently Laura did NOT want to talk about her dead son to anyone.  I would say though, that Laura is in the minority.

The other day, my husband shared an article with me entitled "How to Mourn with the Parents of Stillborn and Miscarried Children" by John Patton.  (Read the article here.)  I really liked the last section of the article subtitled "Comforting Those Who Wait for the Resurrection."  Here are 6 things the author lists that can bring comfort to those who have had stillborn babies or had miscarriages (the list is a direct quote):

  1. Be content simply to "mourn with those who mourn" (Rom. 12:15). Know that your words of comfort will not be much consolation in the short run, even if you have experienced miscarriage yourself. As with most other kinds of loss, each person's experience is profoundly different.
  2. Don't try to be the hero. Your may desire to utter just the right words that will bring healing and resolution to mom and dad's pain. But that desire may arise more from your own struggle to reconcile the reality of death with the hope of Christ than from the need of those suffering to hear your words.
  3. Remember mom. Her pain will linger after most people have ceased asking about it. Don't be afraid to broach the subject and encourage her six, nine, or even twelve months after the fact.
  4. Remember dad. A miscarriage is not a set of circumstances in which mom suffers the pain and dad gives support. It's tempting to think that mom bears all the pain, but a father feels helpless in his own way. He needs much love and encouragement.
  5. Be patient.  My wife and I have struggled over and over again to choose worship and dependence rather than despair or indifference. Sometimes we have failed. Be patient with those who seem not to be "getting over" their loss. Pray for the truth of God's goodness to break through. Love, love, love on your friends who have lost.
  6. Read them the Psalms. Just pick them up and start reading. They give lyrical shape to the confusion, anger, pain, relief, hope, and every other possible emotion the suffering feel. Reading the Psalms helps us to live emotionally with a doxological mindset. Psalm 34 has been a key text for me.
 (Again, you can read the whole article here.) 


I would say that list would apply well to anyone mourning a loved one lost at any age.

"Rejoice with those who rejoice; mourn with those who mourn." - Romans 12:15

Wednesday, October 2, 2013

Capture Your Grief - Days 1 & 2


 On October 25, 1988, President Ronald Reagan signed Proclamation 5890 which created Pregnancy and Infant Loss Awareness Month.  (You can read the proclamation here.)  This is the first paragraph of the proclamation:

"Each year, approximately a million pregnancies in the United States end in miscarriage, stillbirth, or the death of the newborn child. National observance of Pregnancy and Infant Loss Awareness Month, 1988, offers us the opportunity to increase our understanding of the great tragedy involved in the deaths of unborn and newborn babies. It also enables us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems."

 
 In our country, an infant is defined as a baby up to one year old.  Since Lilly was 17 months old when she died, she would not be considered a part of Pregnancy and Infant Loss Awareness Month.

  

But that doesn't matter to me.  I am joining in with thousands of others around the world in a special photography project for this month called "Capture your Grief."  (You can read about it here.)  This was created by Carly Marie, mama of a baby boy in heaven named Christian.  She lives in Australia and does beautiful photography work to bless other grieving parents.  She took all the above photos in today's post.  You can request photos (for a small price) from her on her website at:  http://carlymarieprojectheal.com  

For the "Capture your Grief" project, Carly Marie has listed daily subjects for all 31 days this month.  I don't know if I will do them all, but I definitely want to participate.  (You can share your photos with others on Carly's website, but I am simply going to post mine here on my blog.)  Lately I have felt I need to do something more to remember Lilly.  To spend a little more time with her, if that makes any sense.  So ... here goes!

Day 1:  Sunrise.  
The beginning of my journey for this month.  Here is the view out our front yard.  The sun is hitting my little flag at the end of the driveway.  There is some fog in the cow pasture across the street.  It is beautiful, still, and quiet out:



Day 2: Identity.
Where Lilly got her name.  I blogged about this last year in my series of "17 days remembering Lilly's 17 months."  You can read that post and see the pictures of Lilly's namesakes here.  

I know this photo journey will bring some tears with it.  But I am looking forward to it.  It feels purposeful.  And, I will be holding tight to the scripture that has brought so much comfort to my family and I:

"And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose." - Romans 8:28