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

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