Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, October 31, 2012

Day 29: Music


 Day 29: Music

"You'll Be in My Heart" - Phil Collins







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 28: Memory


 Day 28: Memory




Today is about sharing a significant memory from my grief journey. One that stands out to me is from the day Cohen was born. He was born on May 14, nearly 5 months to the day from when we lost Julia. I was in the same delivery room/operating room where I delivered Julia 18 months before. I had the same doctors. I was beginning to feel a sense of deja vu. That feeling combined with the effects of the spinal anesthesia made me start to panic and have difficulty breathing. I was missing and grieving Julia and nervous and excited for Cohen's birth and I just did not know how to reconcile those emotions. In that moment, I had to focus on Cohen. I had to focus on him as the gift she gave us to celebrate life. And when he was born and I saw what a big, healthy baby he was, my heart was full of thankfulness for life -- for the lives of all four of my children. 
I love you, Julia.


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 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.

Friday, October 26, 2012

Day 25: Baby Shower

 Day 25: Baby Shower


There were several offers for baby showers before Julia was born. We knew that she had severe heart defects and likely a chromosome disorder, but because we did not do the amniocentesis we did not know she had Trisomy 18. Her heart defect alone put her life at risk, and in my own heart I felt that Julia's prognosis and diagnosis were worse than we knew. So, I decided I was not up for a baby shower. I had sweet friends, though, who wanted to bless me with a shower anyway. I am thankful that they did. They kept it small and made it so special. Thank you to my dear friends for this beautiful show of love and support.






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 24: Siblings

 Day 24: Siblings

Sydney, Isaac, Julia - Dec 2010


Feb 2011

April 2011

July 2011

Sydney, Isaac, Julia - Nov 2011


Sydney, Isaac, and Cohen

To read a post written by big sister Sydney earlier this year, please click here.


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.

Tuesday, October 23, 2012

Day 23: Their Name & Photo





 Day 23: Their Name & Photo


Julia Grace Childress

My daughter, my teacher, my angel, my heart.





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 20: Charity/Organization


 Day 19: Charity/Organization

Photo of the Balloon Release in Honor/Memory of  children with a rare trisomy
SOFT Conference, 2012, St. Louis, MO
Through our journey with Julia, we found support in many places.  Because the community of families of living children with Trisomy 18/13 is small, finding your way into the community can be difficult. After Julia was diagnosed, we first found the Trisomy 18 Foundation's website.  It contains information about Trisomy 18 as well as beautiful Legacy pages for Trisomy 18 angels. We also found the Support Organization for Trisomy (SOFT) website.  This website offered two books on caring for a child with Trisomy 18 or 13. We ordered those books a couple of weeks after Julia was born. SOFT holds an annual conference to bring together families of living and angel trisomy children. Although we have not yet been able to attend, it is something we would love to do in the future.  After spending the first few months of Julia's life in isolation from the Trisomy community, finding them was a God-send. There are several Facebook communities that have been profoundly helpful to us as well. If you are the parent of a child with Trisomy 18 or 13 looking for support, please try one of these organizations or facebook groups.

Facebook Groups: 

Organizations:


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.

Monday, October 22, 2012

Day 22: Place of Care


 Day 22: Place of Care

Our home
We were very blessed to be able to spend Julia's year with us at home. 
After her discharge from the hospital following her birth, Julia never spent another night in the hospital. 
As we contemplate and try to prepare to move to a new home in the coming year, I struggle with even the idea of leaving this house. 
Her house. Our house together. 
The only house all four of our children will have lived in. 

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.

Saturday, October 20, 2012

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 18: Family Portrait

Day 18: Family Portrait


This is our last family portrait, taken on Julia's 11 month birthday. I was pregnant with Cohen, so he is kind of in the photo, too. I am so thankful to have this picture of all of us.




This is a photo of our family at the each this summer with our Julia bear.

We are having family pictures taken this weekend and are trying to decide how best to include our beloved girl. We love you, Julia!!

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 17: Special Days

Day 17: Special Days
Julia on her first birthday!

We were blessed to celebrate a year of holidays with Julia, including her first birthday. We have not yet reached her second birthday or her first angelversary, but both dates weigh on my mind as they approach in the next two months. We as a family are trying to plan something special for each day. We still have a tier of her beautiful birthday cake frozen that perhaps we can enjoy in honor of her special day. On both days we hope to do something to let Julia know that while we arising her that we are also living and celebrating life like she would want us to.

The Birthday Cake


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.

Monday, October 15, 2012

Day 15: Wave of Light



 Day 15: Wave of Light

Today, October 15, is the official Day of Awareness and Remembrance for Pregnancy Loss and Infant Loss. 
In our remembering today, we lit a candle at 7 PM tonight as part of a 24 hours "wave of light" to remember our much loved little ones.
In the Trisomy 18/13 community, both pregnancy and infant loss are very, very common. 
My sweet Julia has many precious little souls with her in heaven.

We remember you, dear Julia, today and everyday.




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 14: Community

 Day 14: Community

The Trisomy 18/13 community has been an unexpected blessing in this journey. I was so encouraged to find other families living with a child with trisomy 18 or 13 when Julia was with us. I finally felt like we were not alone in what we were experiencing. I am thankful to have made friends through this community, some very dear to me. I consider these friends special gifts from Julia.


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 12: Scents


 Day 12: Scents


There are two scents that I associate with Julia. 
The first is Aveeno lavender baby lotion. 
Before getting dressed and especially after taking a bath I would massage this sweet smelling lotion all over her skin.  
The second is these J&J hand and face wipes. 
For the first few months, Julia kept her fists pretty tightly closed. 
Everyday we would clean them with these soft, fresh scented wipes to keep her hands nice and clean. 

I miss those little hands.





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.

Sunday, October 14, 2012

Day 13: Signs

 Day 13: Signs

As I said in an earlier post in this series, butterflies always remind me of Julia. Yesterday I learned that there is actually a Julia butterfly (Dryas Julia)!



I also treasure the dreams I have of Julia. I do not have them very often but when I do I feel more peaceful. The first one I had about her was of her sitting and laughing like a happy, healthy little girl. Others involve just having her with us doing whatever our family is doing. I wonder if I sleep more regularly if I may dream of her more often...


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.

Friday, October 12, 2012

Day 11: Supportive Friends/Family



 Day 11: Supportive friends and family




We have received so much support -- before Julia, while she was here, and after she passed away.
My immediate family -- my husband, Marc, and my older children, Sydney and Isaac.  We stayed close together and we all lovingly made many sacrifices to care for Julia together.
Our family members -- especially my sister, my mom, and Marc's mom, all of whom spent many days here with us in spite of living far away. Thank you also to their spouses (and kids) for making it possible for them to be here so much. All of our family members near and far made great efforts to come and meet Julia. She was blessed to be able to meet all of her grandparents and great-grandparents, many cousins, and several aunts and uncles.
Our church family supported us with prayers, friendship, faith, and strength.
Our neighbors and local friends supported us in our every day life by bringing food, watching our older kids and even sometimes Julia, carpooling, doing yard work, giving us a baby shower, and celebrating all of Julia's milestones and important days.
Our "faraway friends" made the journey to meet Julia from as far as Alaska!  Many other friends sent cards and emails and called to check in. Julia received hundreds of birthday cards from all over the country on her first birthday!
Our trisomy family from all over the world has walked this road before, with, and behind us. They offer wisdom, encouragement, tears, hugs (real and virtual!), and a unique understanding of what we face at every step.
We are thankful that such a generous and inspiring community has been given to us on this journey.




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.

Wednesday, October 10, 2012

Day 10: Symbols

 Day 10: Symbols

Butterflies




"A butterfly lights beside us like a sunbeam, and for a brief moment,
it's glory and beauty belong to our world.
But then, it flies on again, and although we wish it could have stayed,
we feel blessed to have seen it."
- Author unknown



Photo by Carly Marie at Project Heal

Photo by Carly Marie at Project Heal





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 9: Special Place




 Day 9: Special Place


This may be an unusual special place.  
This space on my couch, though, is where I spent countless hours holding, feeding, and comforting Julia. 
I sang songs to her, played with her, did therapies with her, photographed her, loved her, in this spot. Now when I sit there, I look up and see the two large photos of Julia on the wall. 
This is how I love to remember her best -- smiling back at me.




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.



Monday, October 8, 2012

Day 8: Jewelry


 Day 8: Jewelry

I wore the cross necklace every day during my pregnancy with Julia.
I bought the silver ring with her name on it just after she was born.
I received the necklace engraved with the names and birthstones of all my kids when Julia was 6 months old. I added the photo charm later.
The bracelets I received from sweet friends after Julia passed away. 

I love each and every one!


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 7: What to Say


 Day 7: What TO Say

I always love to hear her name. 
It lets me know that you are thinking of her and that you remember her.
And I am always thinking of 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 6: What Not to Say



 Day 6: What NOT to Say

A hospice nurse said this to us the day we brought Julia home from the hospital. 
All I wanted to do after we learned of Julia's diagnosis was to be able to bring her home and take care of her for as long as possible.  
I had 382 precious days to take care of her. 
And I'm thankful for each and every one of those days. 
So, no, it definitely would NOT have been better or easier to lose her right after birth.




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.

Friday, October 5, 2012

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. 





Thursday, October 4, 2012

Day 4: Most Treasured Item


Day 4: Most Treasured Item

My most treasured item from my time with Julia is the collection of photos I have of her.  I have photos of her in every season and on every holiday. I have photos of her with our immediate family, with siblings, with cousins, with grandparents and great-grandparents, with aunts and uncles, with friends and neighbors. I have photos of her smile. The photos themselves tell her story - the story of a precious little girl who was surrounded every single day of her life by love.




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. 

Wednesday, October 3, 2012

Day 3: After Loss Self Portrait

Day 3: After Loss Self Portrait

This is a series of photos beginning with the time just after we learned that Julia would have multiple birth defects that pointed to a chromosomal disorder. That was when the grief began-- the fear and feelings of loss -- when I was 23 weeks pregnant.


This photo was taken the day we were given a diagnosis of trisomy 18. Julia was one day old.



This photo was taken when we brought Julia home. She was 3 days old here. We were told she would only live a few days.



Julia lived a beautiful 12.5 months. I have many photos that are not full of grief although grief was never far away. Here is one:



This is a photo taken less than 2 weeks after we lost Julia. we took our older kids to Disney World to get away (and be distracted!) and to do something we could not do while Julia was with us. I needed to hold on to my older kids even tighter and to take care of myself for the little one I was carrying.



Finally, this is a photo of me and my "rainbow baby."  He was born nearly 5 months after we lost Julia.



And the journey continues...