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

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.
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.

Sunday, June 16, 2013

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!

Wednesday, June 12, 2013

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.

Tuesday, June 11, 2013

Illuminate Week 3


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.
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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.

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.