The Lilly Memorial Project - donation to MAMA Project

"For to have been thought about, born in God's thought, and then made by God, is the dearest, grandest and most precious thing in all thinking." - George MacDonald

This is Pregnancy and Infant Loss Awareness Month.   Every year, about a million pregnancies in the United States end in miscarriage, stillbirth, or the death of the newborn child.  Ten to 25% of all "clinically recognized" pregnancies end in miscarriage, according to the American Pregnancy Center.  Also, 1 in 160 pregnancies end after 20 weeks, and are considered still births. 

Lilly was not an infant when she died.  She was 17 months old!  But I still think of her and include her during this time.  Last October, I had a miscarriage, and nicknamed that baby "Blueberry" because that was about the size of the baby when it died.  (You can read my "letter" to Blueberry here.) 

Lilly - 16 months

Yesterday was the International Wave of Light where people from around the world light candles to babies that died.  Here are my Lilly-colored candles lit for Lilly, Blueberry, and angel babies everywhere:

Years ago, Tabby and I started putting together different donations for a group called MAMA Project.  (See donation kit ideas here.)  I don't remember how I first learned about them, but they are doing a great work in helping very poor families.  They are a Mennonite based group in Pennsylvania that do a lot of work in Honduras and Haiti. 

In MAMA Project's recent newsletter, I learned that one of the things they were in need of was a pulse ox.  There are hospitals in Honduras that hardly have any medical equipment at all.  I started thinking about Lilly's pulse ox and decided I was now ready to part with it.  (I still have a lot of her medical equipment in a closet.)  

Lilly - snoozing away and hooked up to her pulse ox

Even though I really was happy with my idea, when I actually got out the pulse ox box and opened it up I just wanted to cry.  (In the grieving process - you never know when tears will take you by surprise!)  So I distracted myself and remembered with a smile this old blog post and how Hunter, as a toddler, was so fascinated by Lilly's medical equipment.  He had me make a pulse ox for him that he could hook up to his dog Sam:

When the medical team at MAMA Project is examining and treating children, they like to give them a little stuffed animal or toy when they can.  So I decided to buy two beanie baby type bears off of Ebay to include in my donation.  A Lilly-colored bear who's tag says she is named "Spangle" and blue bear who's tag actually says "Blueberry."

the donation

the donation between LillyBear and a bigger sized "Spangle bear" that I got as a gift ... AND ... I just noticed Hunter's washing machine Christmas ornament snuck into the picture!  WHAT????!!!!

Even though I believe the pulse ox and little bears will help others, I think that just the act of donating them in Lilly and Blueberry's names blesses me the most.

Frank gave me a copy of this article from BreakPoint titled "Dealing with Miscarriage & Stillbirth."  The article included an interesting quote from a book called Animal Dreams by Barbara Kingsolver:  "A miscarriage is a natural and common event.  All told, probably more women have lost a child from this world than haven't.  Most don't mention it, and they go on from day to day as if it hadn't happened, so people imagine a woman in this situation never really knew or loved what she had.  But ask her sometime:  how old would your child be now?  And she'll know."

My two children would be 5 years old and 5 months old.  How old would yours be?

A letter to our latest wee one in heaven - Pregnancy and Infant Loss Awareness Day 2014

Today is Pregnancy and Infant Loss Awareness Day.  In the past, I've remembered and written about Lilly during this month, even though she didn't technically qualify as an "infant," since she died at 17 months.  However, she was developmentally still just like an infant in so many ways.

I have decided today to share about a different aspect of Pregnancy and Infant Loss Awareness Month. Miscarriage.  Something many of you women reading this have had the sadness of experiencing.  I experienced it for myself for the first time, this past October 1st.  Bear with me though, I am still sorting this one out.  For me, miscarriage has been different than the loss of Lilly.  I am sharing, not fishing for sympathy, for the same two reasons I wrote about Lilly:  in case this helps anyone else out there and as a journal for my family.

Two weeks ago from today, Lilly was joined in heaven by a tiny sibling.

(To my family/relatives - you were completely unaware of this.  And perhaps this is a rotten way for you to find out.  I am truly sorry for not telling you.  Please forgive me.  I didn't feel up to verbally saying anything.)

Not really sure how to approach writing this post, I decided that letter format might work best.  That is what follows.

To my dear wee baby,

Hello from Mama!  I know you must be so happy in heaven with Jesus and your big sister Lilly.  But I just wanted you to know how much your family loves you, even though we never got to see each other.  But one day we will, and I will try to be patient until then.

I thought you might like to know some more details about your way too brief life on earth.  

I first learned of your existence on September 11.  That day is known as "9/11" in this country.  I felt excited and confused and scared all at once!  I'm 44 years old, which doesn't exactly make me a young mama.  But I am strong and healthy and had never had a miscarriage before.  I have 3 healthy living children.  And your sister Lilly - she wasn't even supposed to live.  But live she did - for 17 whole months!

Still though, I have had so many friends and relatives that have had miscarriages.  So I think that is why I felt scared.  That, and the loss of Lilly, have shown me all to well how fragile life is.

Well back to you, my dear.  After I found out, I called Daddy at work and told him to mark "May 14, 2015" on his calendar.  I told him around that date, he would meet our newest baby.  He was so surprised and happy!  I told him you were about 5 weeks old.

I told him I didn't want to tell anyone yet.  I needed a little time to get used to the idea.  And it was fun to have a joyful little secret.  Daddy did say though, "Let's not wait too long - I want people to start praying for this baby."

I felt several pregnancy symptoms.  My body temperature often shot from hot to cold.  I had trouble remembering how to spell words!  My moods were a bit crazy - though I managed to hold them in pretty well.  For a few days, I woke up with swollen lips and cheeks!  I never even knew that was a pregnancy symptom until I googled it.  I had my bottles of real ginger ale ready for any upset tummy feelings.  But those never came.

It was fun thinking about unpacking tiny baby clothes again.  Getting out the newborn sized cloth diapers.  I thought about things I wanted to do differently with you, than I had done with your siblings.  I secretly thought about how much I wanted a little girl, to dress up in Lilly's clothes.  For some reason, I had been dreaming about having a little baby girl before I found out about you.  But I also knew, if you were a boy, I would love you just as much!

Two weeks later, Daddy asked me again about announcing you.  I told him I would like to have a check up at the birthing center first.  Just to verify everything was OK.  I admit to still feeling nervous, thinking of another friend's recent miscarriage.  

A few days later, I called the birthing center, excited about making the appointment.  Strangely though, the person who makes the appointments didn't answer their phone any of the times I called.  And I didn't leave a message.  I decided I'd try again the next day.

But the next day I began to get really scared.  I was starting to bleed.  Sure there are women that bleed during pregnancy - I have too.  But I started thinking I wasn't really feeling pregnant anymore. I called Daddy and he prayed for you over the phone.  Tabby overheard and demanded to know what was going on.  I told her and she just stared at me.  I asked her to please pray.

What would happen?

God didn't leave me to wonder for long.  Mid-morning the next day my bleeding was heavier.  Then in the middle of homeschooling Hunter, I got terrible cramps and sharp pains in my back.  It was so bad I doubled over and then crawled to the couch to lay down.  

Hunter is your most compassionate sibling and he got so worried about me he almost started to cry.  "What is wrong Mommy?" he kept asking, clutching my arm.  Fear was on his face.  Finally I told him about you and that I thought you had died.  "That is SO sad Mommy!"  He climbed up on the couch by me and put his arms around me and prayed for me and you.  He kept saying how much he would like a baby brother or sister.

After about half an hour, I passed you.  I felt both panicked ... and full of curiosity.  Panicked because I didn't know what to do with you - I knew I didn't want to just throw you away. Curious because I wondered what you looked like, inside the bloody sac.  Then I remembered a dear friend who miscarried triplets, and put them in a little bag, and buried them.  

A burial.  That's what I would do.  I got a pretty green washcloth and wrapped you up.  But, I admit I studied you closely first.  Disappointed though, because I couldn't see you.  I wanted to know - were you a boy or girl?  I wanted to see your development - not just look at a generic picture of an almost 8 week old baby online.  But I couldn't. Hunter wanted to see you too.  As he looked he kept saying "This is so sad!  Poor baby!" 

I wrapped you up.  It wasn't enough.  I got a nice ribbon and tied that around your washcloth burial wrap.  

I took a deep breath and told Hunter and Solomon, "Boys, let's get on our boots.  We're going outside to bury this baby."  I told Tabby on our way out.    

I knew just the place.  Lilly's memorial garden.  

Another loss.  A different loss.  This was a real baby.  It deserves recognition.  And a name.  But what do you name your baby when you don't know if was a boy or girl?

I googled 7 week old baby.  You were a day less than turning 8 weeks.  What did you look like?  What size were you?  The size of a ... blueberry!  A blueberry?  How tiny - yet amazing.  I learned that you should have had slightly webbed fingers and toes.  That you would have been moving around a lot - like a jumping bean!  That your liver was working and making large amounts of red blood cells until your bone marrow could form and take over that job.  And you looked something like this:

For source of picture and more details click here

But what to say to other people?  It didn't seem right to say, "By the way, you didn't know I was pregnant, but I was.  Now I just had a miscarriage."  I remember in the past, wondering about other women I knew, that waited until they were 3 months along before announcing their pregnancy.  Just in case they had a miscarriage.  This seems to be a rather common practice in our culture.  But why?  That puts the mama in a terrible position.  She can't ask for prayers.  And, what if the baby does die?  What does she say then?  

Nothing much I guess.  Miscarriage in our culture tends to be a silent thing for many.  Maybe it's because talking about dead babies in general makes so many people uncomfortable.  I have encountered several people who, when I say something about Lilly, they seem to be trying so hard to find a way to quickly change the subject or pretend they didn't hear her name.  I can see the struggle in their face and imagine they'd like to put their hands over their ears and say "Nah nah nah! I don't hear you!"

Of course I suppose I acted no better, by not really telling anyone about you.  That is why I am saying something now.

And now when people ask me how many children I have, I will say "Three at home with me, and TWO in heaven."

I love you my wee baby!  You and Lilly give each other hugs and kisses, from me.

Mama

P.S. Hey - what do you think of the name "Blueberry?"  ;)

Capture Your Grief - Days 28 - 31

Finally time to wrap up this series!

Day 28: Special Place.
Such as your child's place of rest.

Lilly is buried in Washington, N.C., a couple hours away from where we live.  She is buried next to my husband's youngest sister, who died at 15.  She is buried across from my husband's father, whom Lilly was blessed to see a bunch of times, including on her 1st birthday.  I have a little cherub statute on her grave, and an angel with chimes by it.  Plus we always keep something "Lilly colored" there.  Currently a red-white-and-blue wreath and pinwheel.  (I guess with the colors, unless someone was to read her gravestone, they might think her grave belonged to a soldier!)  I like checking up on her grave every time we have the opportunity.  Her burial there is playing in my mind now - it all seems so strange.  So unreal.  In December, we will take her red, white, and blue Christmas tree to her grave.

Day 29: Healing.
What has had the most healing impact on your life through this journey of grief?

 
Solomon.  My rainbow baby.  He filled my empty arms and turn my sorrow into joy.

Day 30: Growth.
Do you believe you have grown or are growing as a person since the loss of your precious baby?  Do you believe your baby had a higher purpose?

Absolutely and I am still growing.  I see so many people and situations completely differently.  I am more compassionate and have a special place in my heart for special needs children and adults. 
Did my baby have a higher purpose?  What kind of question is that?!  She radiated God's love and brought others - even strangers - closer to Him.

Day 31: Sunset.
To close out this project and month - photograph the sunset where you live.

 
This project began with a photo of the sunrise and now it ends with a sunset.  Unfortunately there was not much of a sunset this evening.  The sky was too cloudy.  Just like my thoughts and memories are at times.  But, I thank God that He has allowed the sun to shine through into my days more and more often.

Capture Your Grief - Days 25 - 27

Sadly I have to share that we have lost another rooster.  Yes that makes 4 chickens dead in about a week and a half.  :(  Lucia killed Roadrunner the rooster Friday night.  It was just as well though, because Frank was going to have to kill her because he attacked both Hunter and Solomon.  Sigh.  Now we have no roosters left to proudly walk around our little farm crowing.  I have really grown to love the sound of a rooster crowing!  To see pictures of this beautiful Silkie Bantum rooster click here to Tabby's blog.  Lord willing, this will be a better week for our chickens!

Day 25: Say It Out Loud.
If you could say anything out loud about your journey with grief with the death of your child, what would it be?

 
"Lilly - you are worth every tear."

Day 26: Community.
What does this community mean to you?

 
I have saved every note, card, and letter that we've received having anything to do with Lilly.  I have two huge boxes of just sympathy cards.  But among my most treasured cards, are the ones filling up this box.  These are cards from other Trisomy 18 families.

Day 27: Signs.
If you believe in life after death, do you believe your child has ways of contacting you?

No I don't really believe Lilly is able to contact me.  However, I have lots of fun saying she does.  When these flowers bloomed on her crepe myrtle tree, I said it was a "hello" from Lilly.  I also say that when the lily flowers in her memory garden bloom.  Or when butterflies are fluttering over her grave.  When her red-white-blue pinwheel spins and the light flashes on it - I say she's winking. 

Capture Your Grief - Days 22 - 24

Yesterday morning when we went outside for our nature walk, I glanced towards the fenced goat area.  I could see West, one of the Great Pyrenees (aka protector of the goats) standing there with something white hanging from her mouth.  Uh oh.  Upon closer inspection my "uh oh" was confirmed.  It was a part of our chicken named Houdini's Brother.  West proceeded to quickly eat the rest of the chicken when Tabby tried to at least get the foot so she could bury it.  This has been a bad couple weeks for the Houdini chicken family.  Though I suppose West is happy.  You can see photos of this beautiful Delaware chicken here on Tabby's blog.  "Why," Tabby sobbed through her tears, "Do only my favorite chickens have to die?  Why not the mean ones?" 

Life is just like that, isn't it?

Day 22: Words.
Share your favorite quote, poem, lyrics, or scripture.

I didn't take a photo of this, so just imagine it in your mind.  I want to stencil it onto a wall in our house somewhere.  Probably over Lilly & Jesus's portrait hanging over our piano:

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

Amazing thought isn't it?  That God will take even the bad things in our life and make them good in some way?
 
Day 23: Jewelry.
Do you have a piece of jewelry in memory of your baby?

Not long after Lilly died, I posted about my memorial jewelry here.  I still wear my necklace daily.  Since my initial post I have added another charm to it - a heart with a mom and young child hugging. And almost every Sunday I wear my Lilly-colored bracelet and matching earrings.  My bracelet matches the one that Lilly had, except mine also has a little heart charm on it with tiny footprints on it.  The bracelet and earrings are from Six Sister Beadworks (link to Etsy site) which is made by a friend and fellow Trisomy 18 angel mama. (She started making memorial jewelry after her T-18 son was stillborn.)

Day 24: Artwork.
After your baby died, did you create or receive some artwork to honor your child?

 My favorite birthday present ever.  My husband paid a former art teacher at the school he works at to do this pastel portrait of Lilly in the arms of Jesus for me.  (You can read the story here.)  The artist's name is Aimee Cuthrell.  (Read my post about Aimee here.  Aimee's website is here.)  The portrait is hanging over the piano I played on as a child and that Tabby is now practicing daily on.  This is in our dining room so we get to eat all our meals with Lilly and Jesus too.  ;)

Capture Your Grief - Days 18 - 21

Day 18: Release.
What do you want to let go of on this journey of grief?

I still have battles in my mind over guilt and that Lilly would still be alive if only I had done a better job caring for her.  The logical part of me knows that's probably not true.  The spiritual side of me knows that is definitely not true.  God is in control of all things.  But the rest of me fights the battle of guilt off and on.  I hope one day it will stop haunting me.

Day 19: Support.
What has been the best support for you since the loss of your child?

   

I don't know how people can survive losing a child without having faith in God.  It must be even more painful and empty feeling.  So God is my #1 support.  I also don't know what I would have done without all the wonderful, caring angel mama's I have met on this journey.  Being able to ask "I'm feeling this ...  is this normal?" and to be reassured and know they truly understand is a priceless comfort.

Day 20: Hope.
Do you have hope for the future?

 

I have hope that I will see Lilly again one day.  Every day of my life moves me one more day closer to that glorious day!  And of course to meet Jesus too.  I can't imagine anything more awesome!  God does tell us He has plans to prosper us and not to harm us.  Sometimes we do wonder though.  How does losing a child (or a number of other things) not feel harmful?   Only God can work that out.

Day 21: Honor.

Is there anything that you have done to honor your child since they died? Did you give back to the community?

 Lilly inspires me to do so many things!  More things than I even have time for.  :)  I enjoy doing projects in her name to help others.   You can read about them here: 
http://pray4lilly.blogspot.com/p/lilly-memorial-project.html

A Tale of Two Trees

I'm delighted that Tabby has sold several of her "Lilly-colored" ruffle scarves for our fundraiser for Now I Lay Me Down to Sleep!  (see top of blog for details) She can also make the scarves in little girls sizes and even with matching doll sizes.  (It would be cute for a young girl and her American Girl doll!) LillyBear is looking quite sharp in her red-white-and-blue.


Not long ago, I mentioned that my husband has been preparing our garden for using next year by following many of the tips he learned about in the movie "Back to Eden."  (You can watch the movie online for free here or order it from the Back to Eden Film website.)  We are true believers that this stuff works!  Last fall we planted two little tiny trees about the size of foot high sticks. ( I think they are redbuds.)  One has ended up being in what is now the garden area and the other outside it.  What a difference in them! I wasn't able to get a good photo with both in the same picture.  But the one in the garden area is a lot taller and wider:

Yesterday morning was very sad as Tabby found her favorite chicken, Houdini's Halloween, decapitated and shredded in the goat pen.  The goats were innocent I'm sure.  But their protectors, East and West (both Great Pyrenees), must have enjoyed chicken.  (Their owners told us that West is a confirmed chicken killer.)  I hate that Tabby was the one to find her.  She was a sweet chicken with cute puffy cheeks.  To see a picture of her and read Tabby's post about her, click over to Tabby's blog, The Goat Chick, here.  It's ridiculous how attached Tabby and I (especially Tabby) are getting to these chickens!

Many of the chickens are laying nicely now.  Their eggs are beautiful - inside and out.  Such richly colored yolks from our free-range birds!

Several years ago, I bought a set of stories on CD called The Pebbly Brook Farm Stories by Claire Novak of Remembrance Press.  (If you have read or heard of Girlhood Home Companion, this is the same family/publisher.) The Pebbly Brook stories are set in the days of the Great Depression and are based on some of the real life adventures of the author's father.  The author is a homeschool graduate and her mother read the stories on the audio.  I pulled the set out a few weeks ago and we listened to them again, while in the car.  Hunter was old enough to listen and enjoy them this time around.  In one scene, at a train station, some of the characters disembark from the train.  Hunter suddenly asked "They have a dog named Disem?"  We didn't understand at first and told him "no."  But he kept insisting they said something about a dog.  I finally realized when the narrator said "disembarked" Hunter heard "Disem barked!"  We thought that was pretty funny and continue to joke about it. 

An interesting aside, something that didn't mean the same thing to me when I first listened to the cds, is that the family had a son born with Trisomy 13!  I do not know how long he lived.  But after his death, the family ended up moving to a farm.  Wow ... just like us ...   (Trisomy 13 is very similiar to Trisomy 18, which Lilly had.)

In things I've read about this family, I think they surely also treasure this scripture, as we do:

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

Capture Your Grief - Days 12 - 17

Several days to catch up on! 

Day 12: Article.
Day 13: Book.

These two days are about any book or article that has really helped on my journey of grief.  To be honest - I have quite a collection of books on grief, all kindly given to me, that I have never been able to read.  At least not yet.  There's one in particular I pick up now and then, but it makes me cry and I just don't feel like crying through a book so I put it back on my shelf for later. 

There is one beautiful picture book that I love called Mommy Please Don't Cry: There Are No Tears in Heaven.  I blogged about it here. 

Day 14: Family.
What does your family look like now?

  
Frank, me, Tabby, Hunter, and Solomon.  And Lilly.  I tell people that I have 3 children at home and one in heaven.  I get very upset if anyone in my family leaves Lilly out in telling how many people we have in our family.

Day 15: Wave Of Light.
October 15 was Pregnancy and Infant Loss Remembrance Day. Light a candle at 7pm to help create a continuous wave of light around the world for 24 hours.

 

Day 16: Seasons.

Share what certain seasons or holidays mean to you now.

Lilly at the pumpkin patch - October 2011

We feel so blessed to have had Lilly with us for 17 months.  That meant she got to celebrate every holiday with us, some more than twice.  I already blogged about the significance of the 4th of July and Christmas to me for Day 11 - emotional triggers  (Click here to read it.)  so I won't repeat it here.  But I do think of Lilly and things we did with her all year round.  

Day 17: Time.

How long has it been since your child died?

I didn't realize, until I posted this picture, that it was blurry.  But it really is better that way because time seem all blurry - all jumbled up - since Lilly died.  She died exactly 673 days ago from today.  It seems like FOREVER ago.  And yet it hasn't even been two whole years.  It is very confusing.

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??!!

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

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.

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

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