MCM 2013: Team Julia

Marc and our friend, Josh, completed this year's Marine Corp Marathon! They ran in Julia's memory as part of Team Trisomy 18. It was a beautiful day--perfect for running the race (I'm told) and perfect for watching the race. The kids and I made signs and took the metro downtown to mile 18 to see Marc and Josh. Seeing the constant stream of runners along the Potomac River or running through the National Mall was really amazing. Thanks to modern technology, we were able to track Marc and know when he would be coming our way. We were all so excited to see them and to see that things were going so well! We are very proud of Marc (and Josh) for running for Julia! And we are thankful to so many who contributed to Team Trisomy 18! Team Julia raised $3,415 (well beyond our $2000 goal!), and the combined 11 members of Team Trisomy 18 raised over $20,000!

Day 15: Wave of Light

October 15 in Pregnancy and Infant Loss Awareness Day. In honor of this day, parents around the world are participating in a Wave of Light to remember our little ones gone too soon. We light a candle for our own precious daughter -- for Julia. We light a candle for loved ones who have experienced this loss. We light a candle for the many little angels that we do not know. We remember. 

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. To learn more please visit http://carlymarieprojectheal.com. 

Team Trisomy 18: Marine Corp Marathon

My husband, Marc, is running in this year's Marine Corp Marathon in Washington DC. He will be running for Team Trisomy 18 in honor of and in memory of Julia. Please see the following link to learn more or to sponsor Marc as he runs!

http://www.trisomy18.org/goto/TeamJulia

Day 6: Ritual

I decorate a wire tree in my house every month/season for Julia. Some months the decorations reflect a new season and are rather generic. Other months, like Julia's birthday month, I use more personal items like cupcake ornaments. Still other months (like last December and January) I dedicate the tree to all of the trisomy children who are no longer with us. I enjoy adding to my collection of ornaments and hope to personalize each month to incorporate memories of Julia or things that remind me of her. 

The idea of decorating a Julia tree came from Lilly's mom of pray4lilly.blogspot.com.

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. To learn more please visit http://carlymarieprojectheal.com. 

Day 1: Sunrise

Last year I participated in Carlie Marie's Capture Your Grief Photography Challenge for the month of October, which is Pregnancy and Infant Loss Awareness Month. Although I have not been blogging regularly over the last few months, I want to participate in this challenge again this year on as many days as possible.

Day 1: Sunrise

This photo was taken early one morning (as close to sunrise as I get). The flower is a rose on my Julia rose bush, given to me by my mom and transplanted to our new house this summer. This bloom was the first to open after the move. 

My husband and I often took turns staying up with Julia every night so someone was always awake with Julia. She had erratic sleep habits, and we developed them, too. I was usually the one on the latter part of the night shift, from 2 AM on. I spent many sacred sunrises taking care of Julia, and I am thankful for every single one. 

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. To learn more please visit http://carlymarieprojectheal.com. 

Illuminate Week 3

Grateful

The third week's Illuminate journal assignment was to describe something we are grateful for. The photo assignment was to take 100 steps at a time and then stop and compose a photo at the 100th step. I did that but also took a few extra photos that spoke to me. The first setting was Great Falls National Park and the second was Julia's cemetery. 

As a side note, I completed this workshop in the spring, which is why there are many references to the changing of seasons from winter to spring even though now we are in the summer months!

Sun shining through on rough, rocky waters. Great Falls National Park.

The sun still shines, even with clouds moving through.

A broken tree still pointing towards the sun.

A bare tree, waiting for spring.

These days I am grateful that spring has arrived. Even though winter's temperatures linger and the trees are still mostly bare, my calendar says it is spring. Spring brings us closer to the sun. Spring brings color. Spring brings hope. Spring brings new life. As powerful as death often feels, the arrival of spring reminds us that death does not have the last word.

The last two winters were so very long. Julia was born and diagnosed with trisomy 18 just before winter officially began in 2010. Julia passed away at the beginning of winter in 2011. This winter was much calmer but still a constant reminder of what I have too recently endured. When Julia was here with me in 2011, she really began to improve and become more aware as spring set in. I associate that time in her life as one of cautious hope. In the spring of last year, just months after losing Julia, I was expecting my rainbow, Cohen. His spring time arrival again brought me hope. And so now, this year, with spring officially here and new life emerging from the ground around me, I feel more hopeful. Less sad. Grateful for spring.

New life emerging.

Color and light surround her resting place.

*This post was originally created as an assignment for the Illuminate online photography course. For my week one post, click here. For week two, click here.

Illuminate Week 2

Perhaps they are not stars,
but rather openings in heaven
where the love of our lost ones
pours through
and shines down upon us
to let us know they are happy.
--Eskimo Proverb

The darkness I have experienced with Julia's diagnosis and her passing has always been infiltrated with light. I think of it as a clear night sky. The darkness is there, certainly, but it cannot erase the brilliant light of a million stars. Julia's trisomy 18 diagnosis after birth and the constant not-knowing-how-many-days-we-would-have-together were the heavy darkness those first months. The stars were her hanging on and living and growing and responding. The stars were her smiles. The stars were our memories. The stars were her siblings who adored her. The stars were a new pregnancy while she was still with us. I - and we - were constantly trying to keep the darkness at bay by focusing on the stars. The darkness threatened to take over when she left us suddenly and unexpectedly. But I had to focus on the 382 days -- stars -- she gave us. I had to focus on the giant star of my rainbow baby due 5 months later. I was surrounded by the stars that are my oldest daughter and son and my husband and the friends and community brought to me by Julia. So, yes, the darkness has surrounded me. But not without the stars.

For the photography assignment this week, I chose my bird's nest necklace as my focal point. Each pearl represents one of my children. I love it. It was given to me by two dear friends who shared closely in Julia's life as well as in my life before and after Julia. I love to think of them as well when I wear it.

Soft overhead light, no flash

As I took each picture, I thought about how without enough light the focus can be off or blurry. That reminded me that when the darkness of grief starts to close in that I need to find another way to let in light so as to not lose my own focus. There must be a balance. It may take many many tries, but I will keep searching.

Window light

Overhead light, no flash

Backlit by window, no flash

Morning light outdoors

With flash

In this week's Illuminate class, the journal and photo assignment focused on light and dark and how we think about those concepts at this point in our journey. For our photos, we were to use different types and amounts of light to see how that changes our perspective.



















































































































*This post was originally created as an assignment for the Illuminate online photography course. For my week one post, click here.

Mother's Day Moments

In 2011, I spent my one Mother's Day with Julia. In 2012, I spent Mother's Day preparing for Cohen's imminent arrival (the following day). This Mother's Day I was filled with memories of both.

Sweet Julia-- I knew that day was precious. Every day with her had to count.  It was a beautiful day and Julia was feeling well.  We had a peaceful day together and enjoyed a walk in the park.

Mother's Day 2011

My little Cohen-- I was anxious and so so ready for his arrival. Ready for my arms and my heart to be full in a way that they hadn't been since Julia passed away. And so Mother's Day 2012 was a day of waiting. After nine long months of pregnancy, five of which were spent mourning the loss of Julia, on Mother's Day I was almost there. He was almost here. My own little rainbow after the storm of losing Julia.

Mother's Day Tea at Isaac's Preschool, 2012

Fast forward to Mother's Day 2013 and Cohen nearing his first birthday. It felt more like a "normal" Mother's Day. It was a beautiful day and we enjoyed a beautiful drive and a visit to historic and quaint  downtown Leesburg. We shopped, we ate lunch, I opened presents. "Normal" things. My big kids were super sweet and so excited about the gifts they picked out for me. They each picked out beautiful necklaces and Sydney was so proud to have used her own money.  I love them.

Mother's Day 2013

Then we came back to our town to attend a Butterfly release in honor of Julia and other children who have passed away. It was hosted by The Compassionate Friends. This part was definitely not what I would think of as a "normal" Mother's Day, but this was a beautiful way to include Julia. Each family released their butterflies as their child's name was read aloud. It was a lovely way to honor lives gone too soon -- lives of beauty, hope, and wings.

January Tree

February is already here, but I wanted to post pictures of Julia's angel tree for the month of January. Some of the ornaments were Christmas ornaments and some were after Christmas ornaments and some were special gifts. I really love how this tree came together!

This "noodle" angel ornament was made by our neighbor G when Julia was born. Her first ornament! It will always be special. Thank you, G!

This angel ornament was made by my friend and fellow trisomy mom, C. She decorated a Christmas tree with lots of these angel ornaments dedicated to our trisomy angels. Thanks so much, C!

This sweet ornament is also from a fellow trisomy mom (Little Firecracker) and friend, L. It has a feather inside that represents a feather from an angel's wing. Love it! Thank you, L!

And here is another lovely angel feather ornament I received from trisomy mom and friend, S. It includes Julia's name inside and also sweet charms and sweet words. Thank you very much, S!

A Star is Born

Well, not really born. Just named. We named a star with the International Star Registry in memory of Julia. Stars are another symbol that many people use to remind them of loved ones lost. Stars are far away-- unreachable, really, but they are there and we can see them. Even in seeing them we are really seeing light that took light years to reach us. I can imagine Julia that way -- she is there, but in an unreachable (for now) place. Although I cannot actually see her in real time, I can look around me and see the ripples and waves of light that she left behind her.

A star for you, my sweet one. Shine on.

Perhaps they are not stars,

but rather openings in heaven

where the love of our lost ones

pours through

and shines down upon us

to let us know they are happy.

--Eskimo Proverb

Ursa Major
RA9h45m28.80s D64º 36'26.14"

Julia Photo Book

My Julia photo book arrived last night and is the perfect birthday gift.  

I am so pleased with how it turned out! 

I know it is a bit long but there were so many sweet photos and sweet memories that had to be included...

Click here to view a larger version.

                                  

NYC

Our family spent Julia's birthday this year in NYC. We wanted to look forward to and enjoy our girl's special day. We wanted to be together. We wanted to live and be adventurous. Taking an eight year old, five year old, and six month old to New York seemed adventurous to us! Marc took the day off and the older kids missed a day of school. We were joined by my brother and sister-in-law. We planned a weekend of sight seeing, good eating, and new experiences. We remembered Julia's birthday and ate tiny cupcakes in her honor. We toasted her life over a lovely Italian dinner. We sent kisses to her from the top of the Empire State Building. We marveled at the twinkling Christmas tree at Rockefeller Center. We enjoyed the beauty of Central Park. And so it was a happy day, just as it should be.
We love you, Julia!

Prayer Flag

As part of National Pregnancy and Infant Loss Awareness Day on October 15, I created a prayer flag for Julia.  I sent this prayer flag to Australia to Carly Marie of Project Heal to be displayed with prayer flags from around the world. She received more than 300 prayer flags in memory of little ones gone too soon. She then photographed them in groups at sunset on Christian's Beach (for her son Christian). This beach is also where she creates the beautiful beach butterflies and writes names in the sand for bereaved families. 

Thank you, Carly Marie, for all you do to remember our precious angels.  

Day 27: Artwork

 Day 27: Artwork

By Sydney Childress

This is a drawing by my daughter Sydney. She drew a picture of herself holding Julia from the first day she met Julia.  She even drew the "Big Sister" shirt she was wearing that day and the pink hat that Julia wore for the first few weeks of her life. Sydney has been able to capture several special moments with Julia with her drawings.  I am amazed by her.

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 26: Their Age

 Day 26: Their Age

+263 days pregnant+

+382 Days on earth+

 645 days together on this side of heaven


October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 21: Sacred Space

 Day 21: Sacred Space

Julia's room is still Julia's room.

Her toys, her clothes, her blankets, her photos, her decor.

It's all still there.

We moved the crib out for Cohen to use and added a guest bed.

I sit in her room as I learn to sew and quilt.

But the room is still hers.

I like it that way.

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 19: Project

 Day 19: Project

I created a memory book for Julia that I have not yet been able to print. 

 I create one for each of my kids for each year, but this is the one I treasure most. 

I finished it -- all 120 pages -- before Cohen was born but it still sits in my Shutterfly account unprinted. 

I am hoping to have the peace and strength to be able to print it for her birthday this year.

Here is one I created of pics of just Julia and me that I have been able to print:

Click here to view the Mommy and Julia book.

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 16: Balloon Release

 Day 16: Balloon Release

Our first balloon release for Julia was to celebrate her first birthday. We had a huge party for her and bought 50 balloons to release. We had such a fun, busy time with all of our party guests that we forgot about the balloons until that night. We decided we would just do it the next day. My brother and sister-in-law were here, so we all released the balloons together in the clearing next to our house. It was a pretty sight to see with all of those pink balloons floating away. (A few did catch in our many trees but eventually made it out.)  That was just less than two weeks before we lost Julia.

Since then, several trisomy families have had balloon releases and have included Julia and many other precious angels. The Support Organization for Trisomy held a huge balloon release at their annual conference. One was released there in Julia's memory.

This week, Day 16 of this blog challenge fell on the ten month anniversary of Julia earning her angel wings (her angelversary).

We miss you sweet, Julia. You are forever in our hearts. Last weekend we stayed in a cabin in a state park. The cabin could sleep eight, but we were only five. Isaac corrected us and said that there were six in our cabin because Julia is in our hearts.

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 5: Memorial

                  Day 5: Memorial 

This is our Julia tree.  We decorate it each season with a new theme, although some ornaments are permanent ones.

Her room is also still decorated with her things including her sweet dresses and her blankets. I love seeing all of her things and hope to set up a more prominent area of our home to be a Julia memorial.
We love and miss our sweetest little girl.