Dancing in the Rain
Slideshow Image 1 Slideshow Image 2 " alt="Slideshow Image 3" /> src="http:>

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

Showing posts with label Illuminate. Show all posts
Showing posts with label Illuminate. Show all posts

Sunday, June 30, 2013

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.
Home
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.

Tuesday, June 11, 2013

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!

1970 02 03_1959
Sun shining through on rough, rocky waters. Great Falls National Park.
2013 03 30_1958
The sun still shines, even with clouds moving through.
1970 02 03_1965
A broken tree still pointing towards the sun.
1969 12 31_1960
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.
IMG_3293
New life emerging.
IMG_3294
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.

Saturday, June 1, 2013

Illuminate Week 2


Perhaps they are not stars,
but rather openings in heaven
where the love of our lost ones
pours through
and shines down upon us
to let us know they are happy.
--Eskimo Proverb
The darkness I have experienced with Julia's diagnosis and her passing has always been infiltrated with light. I think of it as a clear night sky. The darkness is there, certainly, but it cannot erase the brilliant light of a million stars. Julia's trisomy 18 diagnosis after birth and the constant not-knowing-how-many-days-we-would-have-together were the heavy darkness those first months. The stars were her hanging on and living and growing and responding. The stars were her smiles. The stars were our memories. The stars were her siblings who adored her. The stars were a new pregnancy while she was still with us. I - and we - were constantly trying to keep the darkness at bay by focusing on the stars. The darkness threatened to take over when she left us suddenly and unexpectedly. But I had to focus on the 382 days -- stars -- she gave us. I had to focus on the giant star of my rainbow baby due 5 months later. I was surrounded by the stars that are my oldest daughter and son and my husband and the friends and community brought to me by Julia. So, yes, the darkness has surrounded me. But not without the stars.
For the photography assignment this week, I chose my bird's nest necklace as my focal point. Each pearl represents one of my children. I love it. It was given to me by two dear friends who shared closely in Julia's life as well as in my life before and after Julia. I love to think of them as well when I wear it.
Soft overhead light, no flash
As I took each picture, I thought about how without enough light the focus can be off or blurry. That reminded me that when the darkness of grief starts to close in that I need to find another way to let in light so as to not lose my own focus. There must be a balance. It may take many many tries, but I will keep searching.
Window light
Overhead light, no flash
Backlit by window, no flash
Morning light outdoors
With flash
In this week's Illuminate class, the journal and photo assignment focused on light and dark and how we think about those concepts at this point in our journey. For our photos, we were to use different types and amounts of light to see how that changes our perspective.



















































































































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

Monday, May 20, 2013

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.