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.

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.

Cherry Blossoms 2013

The arrival of cherry blossoms is my absolute favorite time of the year in Washington DC. We try every year to make the 20 mile trek downtown to see the cherry blossoms blooming around the Tidal Basin in DC. Some years it is cold. Some years it is rainy. Some years it is perfect weather. This year the weather was perfect when the blooms arrived. Knowing that the peak window for the blooms is only a few days, the kids and I decided to go see them early one morning last week before school. The trees did not disappoint! (Parking is a different story!) I am so thankful that every year at this time I can remember that we shared this special time with Julia.  I think I will always associate cherry blossoms with Julia. I like that. This year was Cohen's first visit to see the trees and he was a trooper!  We had a wonderful morning and even managed to make it back to school only a bit late. :)

2011

2011

Cohen at 9 Months

At 9 months I can...

- Crawl!!

- Pull to a standing position

- Explore

- Make big messes while exploring

- Wave

- Babble...loudly!

- Weigh in at 20 lbs!

Likes

- Mirrors

- Baths

- Kids

-Pretzel sticks

Dislikes

- Car seat

- Changing clothes

- Slippery floors (makes crawling difficult)

Happy 9 Months to my little Valentine!

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.

Cohen at 6 Months

At 6 months I can...

- sit up for 5- 10 minutes at a time

- push up onto my hands and knees and rock (ready to crawl?)

- eat lots of pureed fruits and veggies

- grab onto everything with a super tight grip (especially Mommy's and Sydney's hair)

- roll over very quickly

- make lots of sounds

- smile with my 2 teeth!!

- weigh in at 18 lbs 5 oz!

- measure 28 inches tall!

- "say" I have been to the top of the Empire State Building!

Likes:

- Playing with Sydney and Isaac

- Eating bananas, sweet potatoes, carrots, peaches, apples, pears, mangos, squash, and most any combination of the above

- Meeting my cousins

- Touring around in the baby carrier

- Going to museums and places with lots of fun things to look see (Smithsonian Air and Space Museum, Smithsonian Natural History Museum in the last month)

- Being held by Mommy

- Being sung to by Daddy

- Being loved on every morning at the bus stop by the Yasuda girls!

- Christmas tree lights and ornaments

Dislikes:

- Long car rides

- Short car rides

- Peas

- Shots (5 at his last appointment!)

- Changing clothes

Birthday Month - A Look Back Part 5

More Julia Photos! These should be called "Smiles and Silly Faces."

How I miss her many expressions and her priceless smiles!  

Daddy is funny!

I think I might like my tie-dyed onesie!

How cute am I?

My mommy is a little weird.

What did you say?

Oh, that IS funny!

I'll think about it...

Where did my hand go?

Uh-Oh!

Mommy is silly!

I'm not telling!

I'm a pumpkin?

I love Pat-a-Cake!

Birthday Month -- A Look Back Part 4

More of Julia's lesser known photos...these are from summer 2011.

We had such a good summer and were even able to travel to visit family.

What a blessing those memories are today.

Love you so much, sweet girl.

Prayer Flag

As part of National Pregnancy and Infant Loss Awareness Day on October 15, I created a prayer flag for Julia.  I sent this prayer flag to Australia to Carly Marie of Project Heal to be displayed with prayer flags from around the world. She received more than 300 prayer flags in memory of little ones gone too soon. She then photographed them in groups at sunset on Christian's Beach (for her son Christian). This beach is also where she creates the beautiful beach butterflies and writes names in the sand for bereaved families. 

Thank you, Carly Marie, for all you do to remember our precious angels.  

Birthday Month -- A Look Back Part 1

I definitely have my favorite Julia photos and I tend to use these for printing, scrapbooks, framing, blogging, etc.  In honor of Julia's birthday month, I wanted to post some of the lesser known or lesser shown photos of her.  Here are a few from December 2010...

What a tiny girl she was!