Lilly's Chocolate Heart & "What do you save when a loved one passes?"

There is comfort in simple traditions.  Every Valentine's day for the past 3 years, my children and I have read Kevin Henkes book Lilly's Chocolate Heart.  In the story, a little rat girl named Lilly has a chocolate heart wrapped in red foil, which she received on Valentine's Day.  She searches for the perfect place to store the heart in.  She finally concludes that in her tummy is the best place!

When  our Lilly was in the hospital for a virus, the speech therapist that worked with us told me that her son's favorite book was Lilly's Chocolate Heart.  She read it to him every night at bedtime.  And every time, she thought about our Lilly.  (This dear woman prayed for our Lilly too!)  So I bought this little book, out of curiosity, and Tabby and Hunter and I all loved the story.  Now Solomon does too.

After we read it, we all get to eat ... a chocolate heart!  Sweetest ending to a story - ever!  ;)  Solomon and I made the chocolate hearts the day before, using some of Tabby's melting chocolates and heart mold.  When we had finished and I was cleaning up, Solomon decided to sample a heart, without permission.  The evidence formed a nice little "soul patch":

I like to read the blogposts on Organize 365.  Recently there was one that I have found myself thinking about off and on.  It is entitled "What do you save when a loved one passes?"  The author shared about things she has from her grandparents and father.  Then she wrote:

"You have a different relationship with everyone you know. The passing of a family member or friend is very difficult. Often, I see people fall into one of two camps. Either they want to keep every single possession that their loved one ever touched, or they default to saying,  'No, that’s okay, I don’t need anything.' And often the true answer is somewhere in the middle."

If you tend to say, “No, that’s okay, I don’t need anything,” I encourage you to think of one thing that you would like from someone who has passed away. It can be as simple as a button box. Or as complicated as a handmade manger. And, likely, what you choose will not make sense to those around you… and that’s okay. It’s all about you.

If you tend to want to keep everything, go ahead. 50% of the people I go in and professionally organize have lost a loved one in the last five years. The grieving process is long and individualized. The last thing you want to do is give up something you’re not ready to give up yet.

 Of course I thought about Lilly.  When she died I was one of those people that wanted to keep EVERYTHING our little girl had touched or that I associated with her.  It was months before I could even remove the sheets from her little bed!  (And really, I only did it because Solomon was going to be born soon and need them.)  Lilly's sheets and blankets, and the last outfit she ever wore, are still all folded up neatly and in a basket on the bottom shelf of my nightstand. 

The author of the blogpost continued:

"Five years seems to be the magic amount of time that needs to pass before full closure seems to settle in."   (read the whole post here)

Five years.  I found that so interesting.  Solomon was born 9 months to the day that Lilly died and then we moved 3 weeks after that.  It was hard to pack up Lilly's things for the move. Then when we got here I basically put up Lilly "shrines" all over the house.  I even took her favorite ceiling light form our old house and it is hanging in a corner of our bedroom here.  In the almost 2.5 years since then, I have been able to put some things away and feel OK with it.  And I have no problem with the kids using things like her g-tube syringes for science experiments or even just play.

I have a friend that lost a little girl at about 6 months.  (She had many complications from Down Syndrome.)  It happened over 15 years ago and she said her little girl's things all fit in one box now.  I remembering thinking "Wow ..." when she told me.  I've got so many bins of Lilly's clothing and things in the attic.

Where will I be at that 5 year mark?  I don't know.  All I know is that grieving is an unpredictable process.

Speaking of grieving, it seems our goat Christa is grieving. Yes, goats really can grieve.  I am pretty sure she had a miscarriage last week.  I found some blood on her and she was acting different.  She was actually being quite affectionate and clingy whenever Tabby or I went into the goat pen.  Now Christa is not ever mean to us - but this really was un-Christa-like behavior.

I've found myself spending a little extra time with her every day, just petting her and letting her lean against me.  I really feel sad for her.  My own miscarriage, from last October, came to mind of course, and I told her "I understand how you feel." 

The only way to be sure if Christa had a miscarriage is a blood test, which we aren't paying to do.  My friend K., that used to own Christa and still has one of her daughters, said that perhaps Christa only lost one of her babies.  (She had twins last time and that is pretty common with goats.)  So we will see this spring.

Honestly this isn't even something I had thought about.  Christa is a experienced mama goat and excellent milker.  I just assumed everything would go smoothly during this breeding process and then with the spring time births.

When am I going to learn that life rarely ever goes smoothly??!!

Wedding dresses turned into burial garments

Monday was Solomon's 2nd birthday.  He was born 9 months - to the day - that Lilly died.  I am so grateful for these 2 years of healing and joy he has brought.

Last year, I posted about the "angel burial pouches" I made, to go in our "angel box" donations to the hospital.  In the burial pouch post, I gave step-by-step instructions with photos on how I made them.  Recently I received a comment from a woman who had sadly given birth to a stillborn son at full term.  She joined a hospital charity and decided to make the burial pouches.  She used my instructions to do so and said the result was great.  She also mentioned that another woman in the charity group had had a little girl named Myla born with Trisomy 18.  She lived one day.

Earlier this week, my mom forwarded me an e-mail from someone that mentioned she was getting rid of her wedding dress and had gone online to see where she might donate it.  She found an organization that turned wedding dresses into burial dresses.  I had heard about that from my sister-in-law Nikki awhile back and I forgot to mention it here.  (At least I think so! I couldn't find a post about it.)

Anyway, I think it is a wonderful idea.  I did an online search and found a group called "The Mary Madeline Project" that does this.  From their website, here is there mission statement:

It is the purpose of the Mary Madeline Project to provide comfort and support to grieving families that have suffered the death of a baby. It was founded in memory of Madeline Marie Erickson who died at seven weeks of age and in honor of all the babies before and after her that have touched our lives. We are a non-profit organization that donates infant / baby burial gowns and blankets to  hospitals for bereaving  parents.  Women donate their cherished wedding gowns to the project and volunteers give of their time, talents and love by making the baby burial gowns and blankets.

It is very difficult to shop for a baby burial garment when a baby dies. For premature babies, it is often difficult to find something small enough. The baby burial gowns and blankets are given to Neonatal Intensive Care Units for babies who die in the neonatal period.  They are also given to labor and delivery units for stillbirths.

I was curious about Madeline's story.  She lived 7 weeks and had glycogen storage disease.  You can read her story here.  Here is a picture of her, from the website:

The Mary Madeline Project website has a bunch of the burial outfits they have made at this link.  I copied the below pictures of burial outfits, all from that page, to show you examples:

The blue portion was made with a prom/bridesmaid dress

I just noticed on the "To Contribute or Help" page that they are unable to accept any dresses at this time.  So I just went online again and found the original group I had heard about earlier this year.  It is a group from Texas called NICU Helping Hands.  A newspaper article about their work is here.  Here is a sample of a gorgeous dress from their website:

You can help NICU Helping Hands by donating a dress, money, or your sewing skills.  You can get all the details here on their FAQ page.

Well I know that burial gowns isn't the most cheerful topic.  But it IS important.  As I have written here several times, I am so very thankful that I already had a beautiful dress that I could bury Lilly in when she died.  Going shopping to find "the perfect dress" would have been just about impossible for me to handle.  I love groups like the above two and what they are doing.  One day when I have more time, I would like to do something on a big scale like that too.  In the meantime, I'll just do little projects here and there as I can.

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

Hannah's Blankie Blessings

I've often noted that I find it very therapeutic to make things with my hands.  Creating things, like writing, gives me a feeling of peace.  So, I was very interested to read the other day that new scientific research reports that 20 minutes of creativity will reduce stress by 45%.   Wow! Creative time should be mandatory! 

I have shared, many times here, how the kids and I love to do creative projects in memory of Lilly.  It makes us feel better and has helped a lot with the healing process.  (I've been compiling ideas from old blog posts into one handy list to have as an online resource for people, accessed by a tab at the top of this blog:  http://pray4lilly.blogspot.com/p/memory-ideas_26.html  I hope to finish that soon.) 

One family that we've grown to love during our Trisomy 18 journey has been the Kwant family.  Their angel Hannah Grace lived for 64 days.  (Read her story at:  http://kwantfamilycorner.blogspot.com )  They are a lot like us and their oldest daughter has even become Tabby's best friend.  If only they didn't live all the way across the country from us!  Anyway, their family does a lot of creative projects in memory of their Hannah.  (I have links to some of their memory ideas listed my above mentioned "Memory Ideas" tab.)

Recently, some of the Kwant children finished sewing 180 blankets (yes that's 180!!) to donate to the Everett Providence NICU and the Seattle Children's Hospital (both hospitals in Washington state) in Hannah's memory.  Below are some pictures their mother shared with me and gave me permission to post here.

I love their donation tags, attached to each blanket.  Here is the front and back:

Here are some of the blankets with a framed picture of Hannah:

Some of the Kwant children with the 180 blankets.  Notice the purple Hannah Bear.  (Just like red/white/blue are "Lilly colors", the Kwants know yellow/pink as "Hannah colors.")

Finally, here is a picture of the children at one of the hospitals with blankets:

I know that making the blankets and donating them made this family feel good!  We are still happy with our hospital donation (here and here) and hope to do more in the future. 

Something funny that Tabby and Cassie realized at one point, was that their little sisters had the same cardigan with an elephant on it.  Here is Hannah:

 

 

And here is Lilly (at 7 months):

I know the recipients of the blankets will be blessed, just as we were when Lilly received a blanket from this family.  I remember being so impressed with how soft and well made it was.  (The flower headband is from them too.):

I love the scripture on the Hannah donation card as it is one that has brought us a lot of comfort since Lilly has passed away:

"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

Rainbow month Plus Free memory necklaces

Our months tend to have a regular flow to them - with lots of crazy surprises scattered throughout.  But, the 4th of every month finds us getting decorations out of the attic for Lilly's tree.  September is "rainbow month" in honor of the birth of Lilly's little brother (Sept. 15).  Today Hunter helped me put the rainbow decorations on the tree and Solomon kept trying to take them off. 

I love this ornament Tabby made for the tree last year.  There's a side for Lilly and a side for Rainbow Baby.  On the cloud in the middle it says "Although they're apart they're together at heart."   (Good enough for Hallmark, isn't it?!)

Thank you to "Anonymous" that works with my husband and sent us this beautiful Lilly colored basket today!

I just love the basket.  "Anonymous" - I hope you see this post so I can tell you "THANK YOU!"  You continue to amaze me with your thoughtfulness and generosity regarding Lilly's memory.  Thank you.  It really warmed my heart today when Frank came in the door carrying this.  :)

If you've experienced the sorrow and pain of losing a baby - or babies - in miscarriage or if they were stillborn, you can receive a beautiful free necklace or keychain in your baby(ies) honor from Held Your Whole Life.  See the website ( http://www.heldyourwholelife.com ) for pictures, dedication/why, and how to order.  It is truly a beautiful idea.  You can also read a short newspaper article about it here. Here is the website's banner:

"and He shall wipe away every tear from their eyes; and there shall no longer be any death; there shall no longer be any mourning, or crying, or pain; the first things have passed away." - Revelation 21:4

The Lilly Memorial Project: Angel feather tin

Caleb - 3/20/09 - 8/29/11 - full Trisomy 18

Recently I was reading a lovely magazine called Seasons at Home.  (This magazine, by a homeschooling family, is full of crafts, woodworking projects, recipes, encouragement, etc.)  One of the craft ideas in their summer issue was to take a mint tin box and cover it with pretty paper and decorate it and fill it to use as a little sewing kit.  I've seen similar ideas with the mint tins before, but the one in the magazine was just so pretty I felt inspired to make one.  I don't really have a lot of extra crafting time but the idea popped into my mind to use the little tins as "thinking of you" gifts for families who have lost loved ones.

Caleb - what a beautiful smile!

I made my first "angel feather tin" the other day and mailed it to the family of Caleb.  Caleb was a sweet little boy that lived over two years with full Trisomy 18.  His 2nd angelversary is today.  (You can read about Caleb's life on his blog Caleb's Journey.)

Caleb's mama is a wonderful resource and I've been blessed to talk with her by phone several times.  I learned a lot from her when Lilly was several months old and I needed direction for treatments and daily care.

I sort of made up the box project as I went along, but the end result made me smile.

I put a white feather in the box, and printed out this angel feather poem:


A feather from an Angel
Is one we rarely see.
But this one is quite different,
And as special as can be.

This feather is a reminder
Of a special person's love...
Who is now your Guardian Angel
Watching and protecting from above.

I also printed out this scripture:  “See, I am sending an angel before you, to guard you on the way and bring you to the place I have prepared.”  --  Exodus 23:20

I then printed out several pictures of Caleb.  Finally I strung Caleb's name in letter beads along with an angel and cross beads.

I thought it turned out nice and found it really theraputic to make.  I may have enjoyed it more than his family.  I look forward to making one for my Lilly sometime and also other angel families.  Maybe I'll become the "angel feather tin lady" or something.  :)  We'll see how they are received.  My goal is simply to honor other angel children in little ways that tell their families that their child is not forgotten.

Here are some pictures of Caleb's box:

 

Tabby made the Mighty Mouse bottle cap magnet for me to include.  Caleb was nicknamed "Mouse" and we all think of Caleb when we see Mighty Mouse.

Dear READERS:  If you have any empty mint tins that you don't want, I'd love to have them for future angel feather boxes.  Thank you!

Peep! RIP Sweetie the chick

First things first -yes - I did mean my last post (about Tabby and I versus the snake) to be funny.  :)

I just have to share this - I think it was made for my Lilly:

 

Sigh.  If only I found it about 22 months earlier!  Oh well.  My "Little Firecracker" is always in my heart.

Hunter drew this picture today during the sermon of Adam and Eve.  The serpent has a forked tongue and the tree is the tree of knowledge of good and evil.  And - of course Adam and Eve both have a pet dog.  (Hunter LOVES dogs.)  (I'm sorry - I can't figure out why the picture is showing up sideways!)

Yesterday we had about 15 people descend upon our woods to put up fencing and to build a shelter for 35 chickens, 2 dogs, and 8 goats.  WHAT??? (I think I got the numbers right.) We are going to be temporarily keeping all the animals of our friends, the L family, who's house burned down last week.  The shelter is not quite finished:

We will keep them here until the L family house is rebuilt.  We feel blessed we have the space to do this to help out.  Now we just need a catchy name for our farm.  "Little Firecracker's Animal Refuge"?  We'll have to think of something.  Any suggestions?

Today our two dogs, Dixie and Lucia, quietly watched the chickens going in and out of their coop.  Little did we know that Lucia had murder in her heart.  (Lucia is the bigger, lighter colored dog.)

The chickens innocently scratched and pecked in the fenced area of the backyard, minding their own business.

We all watched the chickens and hung out in the yard for a bit.  Then Tabby and I went inside.  Shortly after that I heard Frank yell at Lucia.  It wasn't just a regular yell. It was the very very stern yell.  Tabby and I ran back outside.  Frank leapt over the fence and took off after Lucia yelling that she had got a chick.  I grabbed Solomon who was standing there, holding onto a toy shopping cart all by himself.  Tabby picked up a limp chick.

Apparently, the chick that Tabby named Sweetie, had hoped over the fence.  And Lucia moved in for the kill.  :(

Neither Tabby nor Frank could feel a heartbeat, but decided to hold the chick awhile to make sure it was dead.  Tabby sat on the swing hugging Sweetie and watching her, it just struck me as so sad.  I know it sounds absolutely ridiculous, but seeing her there cradling that chick made me think of when I was holding Lilly, dead, against me. 

I was glad Frank was here to discipline Lucia with the chick and then bury it.  It was one of those things I could do if I had to, but really would prefer not to right now.

The remaining 24 chicks seem to be doing well, except a silkie runt named Taffeta, whom Hunter says has Trisomy 18.  She is still so small and the other chicks bully her.  They pull out her feathers and sit on her!  What meanies!  Taffeta needs to get a gang started to help protect her when Tabby isn't around.  Maybe the Feathers vs. the Crips.

Putting Faces to Trisomy Awareness

A mama that has a little girl with Trisomy 13, and who has founded Eva's Gift Shop to help raise Trisomy awareness, has put several collages featuring Trisomy children.  Awhile back she asked that those of us who were willing to submit a photo of our child and a word describing then.  I sent her Lilly's photo and the word "firecracker".  To me "firecracker" isn't just a 4th of July word (Lilly was born that day) but also a word meaning that she was a spunky fighter. 

Here is the collage that Lilly is in (look under the "Y" in "Trisomy"):

The mama of an angel named Roisin recently did a balloon release in honor of her sweet girl, and other angels.  Here is Lilly's balloon and tag:

 

Isn't the tag just beautiful?

Here is a new website (at least new to me) called The Arms of an Angel.   (http://www.trisomy18dallas.org/)  Their mission is to provide emotional and financial support to families affected by Trisomy 18.  It was begun by a mama who had a stillborn baby girl that had Trisomy 18.  Her name was Aryiana.  You can read her story here. 

It is so wonderful seeing how many parents of children with Trisomys find ways to reach out to others.  They find healing in this and are able to bless others.  God certainly knows what He is doing when he gives these special children to the families that he does!

Angel burial pouches

Trisomy 18 angel baby girl Hannah's big sister Cassie made Hunter a "Lilly zipper pull" for his jacket.  He is so proud of it!  This is a great way for brothers of angels to "wear" and remember their sibling.  (Good jewelry alternative!)  So many creative people out there who, like us, find healing in continuing to come up with new memory ideas. 

Something like this can be one more way to get the "face" of Trisomy 18 out in public, as it is a good conversation starter.  (An extra good idea this month, Trisomy Awareness Month!)  Zipper pulls obviously don't just need to be on jackets.  I was thinking I should make one for my purse too.  Maybe a Lilly keychain for my keys.  The possibilities are endless!  :)

Here is an close up view of the Lilly zipper pull:

During Solomon's afternoon nap yesterday, I started making "Angel burial pouches" to include with my upcoming donation to the hospital.  They are for tiny babies - babies too small to fit regular clothes.  Babies too delicate to be handled much.  Some call them "fetal demise pouches" but I think that sounds terribly impersonal.  I've also heard "burial sacks."  I thought of "angel envelopes."  But I guess "angel burial pouch" is probably a pretty good name.

It isn't a happy thing to think about of course.  But I wanted to share how I made them.  Mainly for anyone like me who comes across this post, that doesn't crochet or knit!  (Because most of the patterns I found online were for crocheting or knitting.)  I only found one other pattern online where the person used regular fabric.  I took that particular pattern and tweaked it.

The finished pouches are on the left - Lilly's doll Sunny is demonstrating how a baby would fit, wrapped up.

First, I used two different fabrics.  One is a green toile-like Peter Rabbit fabric.  The other is a soft white flannel.  I wanted to make four pouches so I cut out four squares of the toile, each 12 inches by 12 inches.  (I really wasn't sure what exact size, but they are adjustable in how the baby is wrapped.)  Then I cut out four squares of the flannel, also 12 inches by 12 inches.

Then I cut out two more 12" x 12" squares of flannel.  And then I cut those both in half, diagonally.  So I ended up with 4 triangles.

Each pouch then had a toile square, a flannel square, and a flannel triangle.

Next I took one triangle and sewed a strip of ribbon across the longest edge.  I used a zig zag stitch because it looked more decorative.

Then I laid the triangle on top of the flannel square.

Next I took the piece of toile and laid it on top of the square with triangle.  Note that I laid it on with the print down.  The inside of the toile fabric was on the outside.  I pinned everything together.

Then I sewed everything together using my sewing machine.  Important!  I left about a 3 inch section open on one side.  (I didn't sew it.)

Then I reached inside the pouch, through the part that I didn't sew, and pulled all the fabric through.  (Turning everything right-side out.)

Finally I stitched the little open section together.

And that's it!  Sunny is demonstrating how an angel baby is placed inside. 

Then you fold up the bottom, cross over the sides, and tie with a ribbon.

I found myself a bit teary eyed as I made them and kept praying for the families that may one day use them.  I just wanted to hug them and comfort them in some way.

I thought this quote by John Wesley was a good ending for today's post.  (Thank you B.L. for sharing it with me!):

"All is nothing without love . . . the very image of the invisible God."  (From Sermon 92: On Zeal) - John Wesley