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 30, 2013

Day 23: Jewelry


I own several pieces of jewelry that I have purchased or received because of Julia. Some pieces have her name or photo on them. Some have her birthstone. Still others, like the one pictured above, represent Julia in more subtle ways. I love each of them and I wear one of the pieces nearly every day as a tangible way to keep her close to me. 


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 29: Healing

Today I'm supposed to write about what has brought about the most healing for me in this journey. That's easy. 

Cohen-- my rainbow baby. He came into our lives just 5 months after Julia passed away. He brought much love, laughter, and sweet baby sounds to our family when we needed these things most. He also arrived with Julia's big, dark brown eyes. I love that. 



Isaac-- my sweet second born son. He is always there with a hug and is willing sit with me when I am sad. He's such a comfort to have nearby. 


Sydney--my firstborn, my daughter, my friend. She misses her baby sister terribly, but she is so good at focusing on the positives in this experience. She helps me remember to be thankful. 


So thankful for these precious blessings. 


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 28: Special Place




This is Julia's resting place. I come here to change her flowers, add seasonal items, read poetry, and tell her that I love her. I tell her that from just about everywhere else, too. 


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

Friday, October 25, 2013

Day 22: Words


This is part of the poem "I Carry Your Heart" by EE Cummings that was read at Julia's memorial service. The phrase, "I Carry Your Heart" also appears on Julia's grave stone. 


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

Tuesday, October 22, 2013

Day 20: Hope


Hope may be the most beautiful word and the most beautiful idea I can imagine. There are others-- grace and love--  that belong with hope. On my journey, though, I have found that it is hope that moves me forward. Hope allowed me to treasure my days with Julia. Hope inspired me to want to have a baby after having and losing Julia. Hope allows me to find courage in suffering and joy in each day. 

Where does hope come from, we might ask. I think hope can come from many places. It can certainly arise from faith and from love. It can come from a friend or a mentor. It can come from children. It can come from learning of the triumph of others in the face of adversity. It can come from watching a sunrise or sunset or gazing out at the expanse of the ocean or the night sky. Hope comes when we are able to think outside of ourselves or outside of our circumstance and focus, even for a brief time, on the wonder of the world (nature, people, and God) around us. 

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 26: Community

I experienced tremendous support on this journey from so many people in my life. My family; friends from my childhood, high school, college, pharmacy school/residency; our Maryland/Cedar Ridge Church friends; my Westgate Church family from my hometown; our friends/neighbors here in VA. I also received a great deal of support from other trisomy parents. Since t18 is rare and those affected are spread out geographically, I met most of these parents through online support groups. One trisomy mom in particular has become a very dear friend. We live in the same area and have been able to connect in person as well as online. I met Patricia 2 months after Julia passed away. Her daughter, Isabella, was 2 months old and also had t18. Meeting Isabella and her family was so helpful for me as I grieved Julia. Isabella has also since joined Julia as an angel, and so Patricia and I grieve and grow together. We have also both experienced the birth of our rainbow babies and the special journey that comes with these gifts. 

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 17: Time



Time since Julia died: 1 year, 10 months, and 1day. Also known as a thousand years ago. Or yesterday. 

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

Wednesday, October 16, 2013

Day 16: Seasons


The holidays are approaching. Thanksgiving, Christmas, and my birthday all occur within a month of each other. Add to that my husband's birthday as well as my sister's, mother's, mother-in-law's, cousin's, and step-dad's birthdays. And, most importantly, Julia's birthday. In the midst of so many celebratory days are also the anniversaries of the very hardest days I have experienced- the day of Julia's trisomy 18 diagnosis (Dec 1), the day Julia died (Dec 16), and the day of her memorial service and burial (Dec 20). The holidays are a very challenging time. We try to include Julia in the celebratory parts of the holiday season. We will celebrate her birthday. We hang her stocking and her ornaments. We will be thankful on Thanksgiving and cheerful on Christmas. But we will miss Julia and mourn her. Her absence will be felt more acutely than at any other time of the year. We will get through it and hopefully enjoy many good moments. Cohen will be much more into Christmas, just like his siblings and his cousins. Fun will be had. 
I will be very relieved, though, when January 1 arrives. 

Tuesday, October 15, 2013

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

Monday, October 14, 2013

Day 14: Family


Here is a photo of my family taken a few months ago. My older two kids are growing up and my rainbow baby, Cohen, is now a toddler! Julia will always be a part of us and our story. 

Photo by Stefanie Harrington Photography

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

Technical Issues

I experienced some technical difficulties with the blog today while updating some settings. I apologize if things are out of order -- I'm working on it and hope to have it straightened out soon.  Thanks for your patience!

Day 13: Books on Grief


I have not read very many books on grief.  Most are just too hard to read. I can imagine a day when reading books on grief will be more helpful but I am not there yet.

There are two books that I have read and found helpful. One is written by a mom while still fresh in her loss. Her young daughter died in an accident. I appreciate this book because Mrs. Chapman's words portray the rawness and reality of such loss. She holds on to her faith in God but shares honestly her struggles with her faith as well. The second is written by a dad who is ten years down the road from his loss. His daughter was born with an undiagnosed syndrome that carries an intellectual and eventually physical disabilities. She passed away at the age of ten. This book gives a longer range perspective on loss and grief and faith that I appreciate very much. It offers hope while acknowledging the years long struggle with grief and its impacts on every facet of life.

"Choosing to SEE: A Journey of Struggle and Hope" by Mary Beth Chapman

"Megan's Secrets" by Mike Cope

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 12: Article



Today's assignment was to share an article that I have found helpful or meaningful in grief. An article I found shortly after Julia passed away described grief as a piano. I still love it. It's about how grief starts out as an overwhelming, intrusive, looming force. A force that requires your full attention. Over time, although the presence of grief does not diminish, grief can be integrated into the background of our story. We can engage it or not. We can make it center stage at times. What we do with it can make it beautiful as we remember the beauty of the love represented in the grief in the first place. To read it please see this post: One Month.

Another article I recently read about grief is a good description of how it affects the bereaved. It is called "Grief Intelligence: A Primer" and can be found at http://m.huffpost.com/us/entry/3716013.


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 10: Beliefs



I believe I will be with Julia (and my grandmothers and all of my loved ones) again in heaven. This belief gives me comfort and hope. Although I obviously don't know what this heaven will look or be like, I imagine it to be a place of fullness and wholeness. This quote is especially beautiful to me in thinking of Julia in heaven now:

"They say that time in heaven is compared to the blink of an eye for us on earth. Sometimes it helps me to think of my child running ahead of me through a beautiful field of wildflowers and butterflies; so happy and completely caught up in what she is doing that when she looks behind her, I'll already be there." author unknown

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 9: Music

This song by the Dixie Chicks is one that I love for all of my children. The chorus asks "How long do you want to be loved? Is forever enough cause I'm never ever giving you up." It reminds me especially of Julia. Love you forever, sweet girl.



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. 

Sunday, October 13, 2013

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!

Saturday, October 12, 2013

Day 8: Color



Hmmm...if I must choose one color that I most associate with Julia it would be pink. Because of Julia's heart condition her skin color was less pink and rosy than you would expect in a newborn. Some days she could be very pale and her clothes accentuated that. Dressing her in pink and surrounding her with pink helped her coloring to look more pink. She was so beautiful, though, in any color!

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 7: You Now

Over the last couple of months a few of those closest to me have remarked how well I seem to be doing handling life without Julia. This summer I could tell that my emotions were more stable and predictable day-to-day. I would still be sad but the overwhelming sadness was kept at bay. I could talk about Julia without as many tears. Then my grandmother died at the end of the summer. Since then I have noticed the numbness of fresh grief on most days. This grief is certainly for my dear grandmother but it also is for my daughter. Two great losses in less than two years. I struggle with not wanting to feel overwhelming sadness but also not wanting the numbness. This is also the time of year where my thoughts drift to first learning of Julia's heart condition and other anomalies while pregnant. I remember the first Maternal Fetal Medicine appointment where my doctor said (in a horribly insensitive way) that Julia may not make it. I then started bed rest which gave me an abundance of  time to think and pray and worry (justifiably). Fall seems to bring back the feelings of despair and helplessness that I experienced before (and after) Julia was born.  And the approaching holidays bring their own angst. Julia was born a few days after Thanksgiving in 2010 and she passed away 9 days before Christmas in 2011.  I struggle to celebrate the holidays for my other kids and to remember Julia's birthday and to deal with grief and the anniversary of her diagnosis and her passing.  Being thankful and feeling deprived at the same time. So, my feelings at this point in my journey are much like this post, a little all over the place. Better then sadder then numb then better and so on and so on. 


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

Saturday, October 5, 2013

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 5: Memory


The memory that stands out most to me from Julia's life is the day she smiled for the first time. I have written about it a few times here already! :) She was nearly four and a half months old at the time. A newborn typically smiles by about 6 weeks, so 4.5 months was a long wait! When parents are given the very difficult news that their child has trisomy 18, many of them are told that their child, if they survive, will never be able to smile or interact with you. We knew well before 4.5 months that Julia could interact with us in her own way, but we were desperate to see her smile. On that blessed Sunday in April, she smiled the most amazing smile. And she smiled over and over again as we surrounded her and celebrated. Smiles of joy, of comfort, of hope, of love. Best day ever. 

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 4: Legacy



One of Julia's legacies to me is knowing that every day is a gift. Because I knew I would have limited time with Julia, every day had to count. When she was diagnosed with trisomy 18 in addition to a hypoplastic left heart, we were told she would probably only live a couple of days. Those first 2-3 days we tried to stay awake all the time to be with her every moment possible. She certainly outlived that prediction but we never knew when her little heart would just wear out and quit. It happened 382 days after she was born, which is infinitely better than the 2-3 we were told to expect.
I attended church camp most summers until I finished high school and was a camp counselor even into my college years. One particular camp counselor during my high school years would tell us that every day we were given 24 pieces of treasure. He said we should think about how we wanted to spend that treasure and how to use it wisely. With Julia, I knew that those 24 pieces of treasure given to me everyday for 382 days were priceless. Our family worked hard to make each of those days count -- not just for Julia but for all of us together. 
Although I no longer feel the same sense of urgency in each day, I am aware that being with my family every day is a gift. 

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

Thursday, October 3, 2013

Day 3: Myths



One myth about grief is that "time heals all wounds."  Maybe I'm not far enough along in my grief journey to fully speak to this, but I know others who are. Although my grief is less crushing on a day to day basis than it once was, I have learned that crushing grief can still show up at any time. Some of my family members are now experiencing significant grief after losing a loved one 17 years ago. Instead of thinking that time heals our grief, it feels truer to think that time allows you to grow in grief. The passage of time can make you feel strong realizing that you are still standing.  The passage of time allows you to connect and share with others in their grief. The passage of time allows you to realize that you will feel joy again. The passage of time can allow your anger and hurt to transform into something useful and constructive and precious. The passage of time allows you to focus on the good and be thankful for the time you had together. Maybe some of these thoughts sound like healing, but, if they are healing, it is not because of time. That same passage of time can find you more angry or more hurt many years into grief. It can leave you feeling weak from all of the energy it takes to live and grieve at the same time. For me, the difference seems like a choice I make every single day. I choose to remember the blessing of knowing Julia, and I take comfort in knowing that I loved her and cared for her and celebrated her and was very proud of her while she was here. (I still love her beyond words and am incredibly proud of her!) Some days that choice comes easily and other days the hurt takes over and I feel weakness settle over me. That's okay.  This is a journey I am on for the rest of my life.

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. 

Day 2: Identity


My Julia was named after her maternal great-great grandmother, Julia Ann Elizabeth Ward. The name means "youth". Her middle name, Grace, was chosen after we learned that Julia would have some special challenges after she was born. Despite her challenges, we chose to see her as a precious gift, like grace from God.

Julia was born at 37 weeks and 3 days gestation. She weighed 5 lbs 1 oz and measured 18 inches long. Although she  seemed tiny, she was a very good size for a baby with trisomy 18! She was born with dark hair and dark eyes. She was beautiful! When she was born we knew she had critical heart issues, but we did not yet know about the trisomy 18 diagnosis. 

Although T18 was a part of Julia, to us it was not her true identity. Her true identity is that she was (and is) a beloved daughter and sister, a precious niece and granddaughter, a cherished member of our community, and a beautiful child of God.


This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. 

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