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 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. 

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. 

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 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. 

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 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. 

With Gran

The day that I dreaded most since I was a child arrived a few weeks ago. My beloved Gran passed away just 12 days shy of her 80th birthday. It was expected yet still a shock. I have learned that one can never be prepared to say goodbye to someone so dear. My view of death has shifted in the last three years. Although I feel the loss of Granny very deeply and will for years to come, I am also able to view her full life and celebrate the blessing of such a long life. She was married to my Papa for 62(!) years. She was surrounded and loved by her three children. She was beloved by her 6 grandchildren and 12 great-grandchildren. She was the center, the anchor, the rock of our family. She drew us together even as the miles separated us. She was strong. She was tough. She was fierce. She had a way of making you feel like you were the most important person in the world to her. I miss her terribly.

I am thankful to have had her in my life for so long. I am thankful to have had a wonderful relationship with her and to have many wonderful memories as a child and as an adult. I am most thankful that she met all four of my children. Here she is with me as a baby and with each of my littles. 

Throughout these difficult weeks, my most comforting thought is that she is with Julia. My Gran, who loved to talk about and show photos of her grandkids and great-grandkids to anyone and everyone, has one of her precious great-granddaughters with her. This photo is how I like to think of them now, together again. 

I love and miss them both so much. 

Illuminate Week 4

One Word

For the fourth week of the Illuminate class, the journal assignment was to write about where we see ourselves one year from now. The photo assignment revolved around one word that holds significance for us right now. We were to photograph the letters of our one word found in nature, architecture, and design.

It has already been 1 year, 5 months, and 27 days since Julia went to heaven. If someone told me a year ago that I wouldn't be crying daily or wandering aimlessly around the house or that I would be able to focus my thoughts, I might not have believed it. I was in the depths of my grief a year ago. I still have hard days but I also have many hopeful days. And now to the future. In one year I hope that the hopeful days outnumber the hard days. In one year I hope that my memories of Julia's good days and her smiles can be my most vivid ones. In one year I hope that my children see me as a happier person. In one year I hope that Julia's little brother (10 months old now) will recognize her picture and say her name. In one year I hope that talking about Julia will be healthy and comforting to my older children. In one year, as today, I hope that I show Julia that my life is better because she was and is a part of it.

Finally, in one year I hope to be fully settled in our new home. This brings me to my one word for this week's assignment: home. We are a military family and have moved around for the last 15 years. We have been in northern Virginia for the last four years, including our time with Julia. Our experience with Julia cemented us here. We already had wonderful friends and neighbors but because of Julia, we grew closer and closer to the community around us. They took care of us and supported us in countless ways. This year my husband has his first opportunity to leave military service. We have decided to stay in northern Virginia and buy our own home here in our same neighborhood. These friends and neighbors knew Julia. They loved her. They were a part of her life and our life with her. One of Julia's many gifts to us, then, is a place to call home.

PS: We moved into our new home one week ago! 

*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. For week three, click here.

1.5 Years

Today marks one and a half years without this sweet face: 

Eighteen months without this precious smile:

548 days without these little hands:

13,152 hours without these tiny feet:

789,120 minutes without you... and counting.

We miss so much about you, Julia. We love you!

382 Days

382 Days. That's how many days Julia was here with us after she was born. A couple of weeks ago, Cohen passed the 382 days mark. I did not want to think about it or give it much weight, but then he came down with a cold. Julia also came down with a cold five days before she passed away. Although I know there is a world of difference between Cohen's health and Julia's health, I found myself worrying more and more about Cohen and his cold. Just because of the link of 382 days. He was pretty miserable -- fever and congestion, little appetite, wanting to be held 24 hours a day. All things I remember going through with Julia on multiple occasions.
But. He did not need oxygen or breathing treatments to breathe comfortably. He did not get choked up on his secretions and need suctioning. He still easily took in plenty of fluids. He does not have a heart or lung condition. I knew all of this somewhere in my head, but my heart seemed to have a contrary mind of its own. I just had to wait it out. That did not feel like enough. I wanted contingency plans. I wanted a nebulizer and an oxygen concentrator and a bottle of antibiotics. Then I realized that Cohen was not the one who needed those things. I am the one who "needed" them.
Cohen is feeling much much better. He is waving at everyone and saying hi. He enjoyed his first visit to the pool this season. He is into everything. And he is now 400 days old.

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 2013

As you may know, I love to take photographs. Especially of my children. I cannot express strongly enough how thankful I am to have so many photos of Julia. When I read about an online photography class just for moms who have lost a child, I was immediately interested. The class is called Illuminate. This is a class about finding healing through photography, through creativity, and through community.  The class lasted 5 weeks and each participant created a blog to share her work. I wanted to share some of what I created during the class here.

Each week we were given a writing assignment and a photo assignment. In week one, we were asked to write a letter to our child and to compose a self-portrait. My letter to Julia and one of my self portraits are included here:

Dear Julia, 

You are the baby I prayed for. You are the daughter I desired. From day one of my pregnancy, and maybe even before, I knew somehow that this pregnancy would be special and that you would be special. Special in a way that was unexpected and different from the your older siblings. I knew. And yet I didn’t know. When I learned that you had heart and kidney anomalies and likely a chromosomal disorder, I was devastated. But I wanted you anyway. When they kept finding problems on ultrasound I wanted you anyway. I could not bring myself to go through with an amnio because I wanted you anyway. I now know that I was protecting both of us. Hearing your trisomy 18 diagnosis after you were born was terrible. But you were already here. If I had known earlier I would not have expected you to make it to birth. I would have been heartsick my entire pregnancy. Your docs may not have treated you. But we held on together. Against the odds.When I saw you in the nicu, I was not yet aware of your diagnosis. All I knew is that you were here and you were mine and I loved you so so much. Then came the diagnosis. Everything stood still. My first thought was that I would lose you. What a horrible thought and and an even worse feeling. We took you home to love and cherish you in your time with us. They said it would be 2-3 days. Those first few days we took hundreds of photos and held you close. Our family members traveled to meet you. I kept feeding you with that little syringe dropper, willing you to live. We sang to you, read to you, kissed you, rocked you, fed you, swaddled you, loved you. We tried to fill each day with a lifetime of love that we would not have a lifetime to give. And you. You held on. You started eating with a bottle. You became more alert. You started growing. Love. We experienced the depths of grief and the wonder of amazement at the same time. I gave my all to you and you gave your all back. We spent our days and nights together, close to one another. There were scary moments but they became less frequent. Then one day you smiled. They said you never would. But you did. Again and again. Medicine for my soul. Hope for my heart. We made many memories together. We traveled a little and experienced the beauty of nature in the cherry blossoms and the ocean. We would share more hard days and nights but your smiles always erased the heartache and alleviated the fears. I cared for you the best I could. We all did. If I could have found someone to have fixed your heart it would have been done. Instead we had to hope for the best. That’s what you gave us for your 382 days. Your very best. I hope I gave you my best, too. You inspired everyone around you but no one more than me. I love you so very much with everything I am and everything I will become.

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.

Feb 12

One year ago today I met a beautiful little girl named Isabella. It was her two month birthday, and it had been nearly two months since we lost Julia. Isabella, like Julia, had trisomy 18. They looked very alike. They brought with them similar joys and similar struggles. Seeing Isabella made my heart full, and I loved her immediately. She was so expressive, so spirited, and so lovely. I also met Isabella's amazing parents, Patricia and Randy. Since that day, we have shared happy days and sad days, the highest of highs and the lowest of lows. Our little beautiful girls now play together, happy and whole, in a place where all is good. This is a hard and often lonely road that we walk. I am very thankful that if we must walk this road, we can at least do it together.

Little and Lovely

I took this photo two years ago today. She was 10 weeks old. My journal entry from that day talked about how Julia was awake and alert more that day and how Isaac and I decided to take photos of her all in pink on the pink bean bag. She really liked the bean bag and how she could snuggle down into it and still look all around...
I miss my precious girl...so little and so lovely.

26 months

Thinking of Julia today on her 26 month birthday. It occurred to me yesterday that this is close to the age Isaac was when we moved to Virginia. I like to imagine Julia like Isaac or Sydney at that age...so cute and newly "independent" with their growing vocabulary and unending curiosity. Miss you, sweet girl.

Angelversary

One year.
Miss you so.
Love you more.

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.