Dancing in the Rain
Slideshow Image 1 Slideshow Image 2 Slideshow Image 3 Slideshow Image 4 Slideshow Image 5 Slideshow Image 6 Slideshow Image 7 Slideshow Image 8 Slideshow Image 9 Slideshow Image 10 Slideshow Image 11 Slideshow Image 12

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.



2 comments:

L said...

Beautiful letter and picture! What a fantastic idea that class is. Thanks for sharing about it!

Anonymous said...

This is so beautiful. You are so beautiful. One of the most amazing things I have ever seen is the love that you and Julia share. It continues to inspire me. Love you! ~ Jodie

Post a Comment