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, 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.



Friday, May 17, 2013

Happy Birthday Cohen!




At 1 Year I Can...

Wave and say hi and bye bye
Clap excitedly
Climb up the stairs
"Get" Isaac when mom says (it's too cute-- he goes to Isaac and starts messing with him)
Play peek a boo 
Pick up very tiny things and try to eat them
Try to climb out of the high chair and stroller so I have to be buckled
Clear a dishwasher (not empty, just clear!)
Cruise
Stand
Crawl way too fast

Likes:
Big kids
My ride-on car
Balloons
Push toys
Straws
Stairs 
Mirrors
Books 
Baths with lots of splashing 
Outside
Swings
Drums
Piano
Banging on things (see above)

Dislikes:
Diaper or clothes changes
Lying down (see above)
Grass on my feet
7:30 when I am tired and cranky

What a year! Happy 1st Birthday to our sweet Cohen!




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.













Sunday, May 5, 2013

Cohen at 11 Months




At 11 Months I  Can...
- Stand alone for 5-7 seconds
- Climb stairs
- Say "hi" when I wave
- Clap and cheer when excited
- Splash enough water out of the bathtub to completely soak nearby towels, clothes, or people
- Drink from a straw

Likes:
- Foods beginning with B: bananas, beans, blueberries, bread
- Riding in my red car
- Watching school buses
- Listening to music
- "Playing" the piano whenever his sister is practicing
- Bath time.  Not just a like. Love the bath.

Dislikes:
- Diapers
- Grass between toes
- Sitting still for pictures

Our rainbow baby is growing up! He will be one year old in less than 2 weeks! So thankful for him every single day.