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

Monday, December 16, 2013

Two Years Gone

Two years today since Julia drew her last breath. Since I have no words of my own today here is one of my favorite poems. This poem was read at Julia's memorial service. 


Love you, Julia. 

Sunday, December 1, 2013

Our Day



This year we had hoped to return to NYC for Julia's birthday, but since the 30th of November coincided with Thanksgiving weekend, we decided against it. We thought there would be too many people  and too much traffic coming back home. We decided instead to stay local and just spend all day together. We first took the kids to their favorite bagel shop for breakfast. Next, we ventured into the mall for a visit to Build-a-Bear. It's pretty fun for all of the kids to receive a present on Julia's birthday! Next we had lunch and watched Isaac play in his indoor soccer game. We then went to the cemetery to take balloons to Julia's grave site. While there we released three purple balloons in honor of her third birthday. We proceeded to the Christmas tree farm where we found the perfect tree. Finally, we came home and ate a steak dinner and some Baked by Melissa cupcakes while enjoying the amazing finish to the Auburn-Alabama game. 
Thank you for all of your thoughts and prayers. We received texts, calls, fb messages, and emails throughout the day. We are thankful that you remember Julia and us on this special day.
We had a good day. All together. Happy birthday, sweet Julia!

Saturday, November 30, 2013

The Third

Dear Julia,
Today is your third birthday!
I think often of all the fun things three year olds can do and I miss you.
I then think of how precious three year olds with trisomy 18 are and I miss you.
We miss out on so much not having you here with us.
But today we choose to celebrate you on your third birthday.
 Although you are never far from our thoughts and always in our hearts, 
today we will remember you and the life we shared with you; 
we remember what you taught us and the gifts you gave us, 
and we will cherish being together as a family.
There will be birthday balloons, purple flowers, and miniature cupcakes.
That's what we would do with you here, too -- celebrate you and us. 
We love and miss you. Sending you many hugs and kisses.





Happy birthday, dear Julia, happy birthday to you. 

To read Julia's birth story, click here.
To read about how we celebrated Julia's first birthday, click here and here.

Friday, November 29, 2013

1 Day until 3 years






Julia spent a year's worth of holidays with us. She was part of Easter, July 4th, thanksgiving, and Christmas and all of the ones in between. Each of those days was made extra special by having her with us. We knew we were lucky and blessed to have any days with her. We did not take her presence for granted. We knew better. Her presence was a gift.

Thursday, November 28, 2013

2 Days until 3 Years







The big kids have often been involved in several activities outside of school, and this was true while Julia was with us. For two of Sydney's activities, piano and dance, Isaac, Julia, and I waited in the car for her to take lessons. Isaac usually watched a DVD, and I would sit with and hold Julia. These times provided a change of our usual scenery, so I would describe our surroundings to Julia. We listened to music, sang songs, played games, and looked out the window. Sometimes she slept. These outings were special precisely because they were so normal. I am continually thankful that our family life with Julia maintained as much normalcy as possible.


Wednesday, November 27, 2013

3 Days until 3 Years





Cohen certainly loves his baths these days. Julia, also, was a big fan of baths. She seemed to relax so much better in a warm bath. I remember how she liked to float while I supported her head. I think it was a great deal easier for her to move her arms and legs in the water. Sweet girl. Miss you, Julia!

Tuesday, November 26, 2013

4 Days until 3 Years






I asked Sydney to tell me about one of her favorite memories of Julia. She had many, but the one she wanted me to include here was about how she liked to dress Julia. She enjoyed picking out her clothes when given the opportunity, and she would almost always choose something pink. :) When Julia was in her first months, she was small enough to fit into Sydney's American Girl doll clothes. Sydney thought that was pretty amazing. Thank you, Sydney, for that memory and the smile it brings to my heart.

5 Days until 3 Years








Julia, like most babies, loved to hear "baby talk." She especially responded to baby talk by Sydney and Isaac. They had the sweetest way of talking to and interacting with her. She would look for them when she heard them around the house and would zero in on them when they talked to her. I also loved to hear Sydney and Isaac talk to Julia. Their love for her, their baby sister, was so evident in their words, their tone, and their gestures. I am thankful that they were so willing to love her with their whole hearts. I am very proud of all of them. 

Sunday, November 24, 2013

6 Days until 3 Years







In the first few days of Julia's life she was unable to take a bottle. We fed her a tiny bit at the time with 1ml syringes. After a few days she was able to take in more and more of these formula filled syringes at a time. And one day, we noticed that she was developing a suck reflex. This was huge for a baby with trisomy 18!!! At that time we decided to try a preemie bottle, and to our great surprise, she began to successfully feed from a bottle! The bottles contained tiny amounts at first but she did it!! She continued to slowly increase her intake throughout her sweet little life. I am very thankful for the responsiveness little Julia showed -- especially in those early days when we didn't even know we could have hope. She gave us that hope. And so much more.

Saturday, November 23, 2013

7 Days until 3 Years




Julia, 9 Months, Aug 2011

Today marks seven days until Julia's third birthday. This week I will share some of the little things that make up the everyday memories of our time together. Here is the first memory about Julia that I would like to share. Julia was very sensitive to sunlight. Every time I walked outside with her and the sun was shining brightly, she would sneeze five times in a row. Then we both would smile. Did she smile because sneezing was funny? Because the warm, bright sun felt good? Because I would laugh when she sneezed? The reason was not too important. When she smiled, I knew all I needed to know -- that in that moment, all was okay in our world.

Friday, November 22, 2013

Cohen at 18 Months







At 18 months I Can...
- walk
- run
- dribble a soccer ball (in a toddler kind of way)
- say about 30 words
- express my opinion in words and actions
- climb
- follow simple instructions
- eat with my 12-going-on-14 teeth

Likes:
- Sydney and Isaac (or Syd and Iyaac, as Cohen says)
- chocolate
- yogurt
- scrambled eggs
- cars (ride-on and toy cars)
- balls
- outside 
- going to the bus stop
- bath
- dancing 
- books
- "helping" put away the laundry
- playing piano with Sydney
- shoes
- Gymboree class
- playing with his friend Cody
- peekaboo 

Dislikes:
- getting into his car seat
- going to bed
- changing clothes
- diaper changes
- going inside after playing outside
- staying in a cart or stroller for very long
- staying still for photos 

Cohen is a fun little guy who is always on the go. His words are precious to hear and his different tones are very communicative on their own. He keeps us busy, keeps us laughing and smiling, and keeps us young. 


Monday, November 18, 2013

Two Weeks



Julia's birthday is just under two weeks away. It's been nearly three years since she was born. I keep waiting for everything -- the memories of her birth and of her first birthday and every monthly birthday celebrated in between those two dates -- to overwhelm me but so far I'm feeling okay. 
Her birthday this year falls on the Saturday after Thanksgiving, so it will be a busy time spent with various family members who will be visiting. 
We plan to remember her birthday with a some fun outings and activities together as a family. We can share a lot of laughs, a few (or many) tears, some stories, and, as requested by Isaac, some cupcakes. We will celebrate all that she means to us, and we will miss her tons. As always. 

Tuesday, November 12, 2013

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!



















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