Letters to Darcy ....The story of a very special baby

Jason and Tracy Ramos have recently published a book, Letters to Darcy  about their experience of celebrating the short life of their daughter, Darcy Anne, who was born last fall and passed away 15 days later. They knew early on that she had Trisomy 18.  It was a painful, but precious and life changing experience and the story is one you will never forget.  Tracy started a blog while pregnant, describing her experiences and feelings throughout the pregnancy, testing, medical decisions, birth, short life, Darcy's passing, and her family's struggles to cope. The impact of Darcy Anne's little life on people around the world, was stunning and made the trials more worthwhile and her short life significant in ways that no one could have ever imagined. Recently the book was published and made available on Amazon.

The book is a beautiful collection of letters that Tracy and others wrote to Darcy Anne long before she was born. Shona Cole took many of the photos for this book.  They are hoping to get the word out about her book and try to minister to people who were touched by their daughter's story through a blog that tells all about her little life and  gives posts about each person involved. It also allows us to talk with people about our experience.  Part of their website about Darcy Anne's life enabled them to share the life stories of everyone involved in the book and a few of us who were not actually in the book. They asked us to share our part too, so we are on the list of 'characters' in this incredible story.  I think that you would really be glad you visited, if you take the time to drop by. Their website is http://www.darcyanne.com/

Here is our story...and we are only one family of many involved who also shared on this blog....


Tim and I have been good friends of Tracy and Jason and have been going to the same church for almost seven years.  Our involvement with Darcy Anne began several months before Darcy Anne was born when Tracy asked on our church loop, "Does anyone do embroidery? I would like a family tree quilt.  Well, I put off replying partly because we have a large and busy family and I knew I didn't have time at the moment to make a quilt. But I thought, "Well maybe I could just organize the making of a quilt!"  

Tim said that was fine and I attempted to do that, but due to my own busy-ness, the project bogged down.  I began researching and talking to Tracy and designed a quilt that reflected her desire for an heirloom quilt with all the family member's names on it.  Ideas just popped out all over the place and the next thing I knew, it was all planned. As Tracy's due date arrived, I realized that there would not be time to parcel out the blocks to our church members, which had been my original intention, so I just quickly pieced it together and quilted it by machine, though I embroidered the names all by hand. 

It basically took the last three days before Darcy was born to finish. It was so rush rush, that I was still hurriedly stitching the binding in the poor light of our little old truck on the highway as Tim drove us to the hospital.  I ripped the last threads (yes, with my teeth!) and folded it neatly. My heart was beating so fast!  I can't even tell you how much joy it gave me to make this quilt for Darcy Anne and to know that it would mean so much to Tracy and Jason.    When we arrived, we were asked to come up and bring it to the Ramos family ourselves and I was so thrilled! I've never seen a more beautiful birth than theirs. I was just amazed at the joy and family unity and fellowship that was a part of this special moment!  I marveled at their careful planning to make every little moment count. I felt I had never understood before what it really means to be a family until I saw how the Ramos family 'spelled' family. It was humbling. The sweetest thing for me as a quilter, though, was when they got the idea to put Darcy Anne's footprints in paint on her 'special block'.  I just wanted to cry...how precious!  We left home in awe that night...and it was enough for me to have felt that I was very close to heaven when I was up in that hospital room.

There were very many special moments that I know they planned..but we were not involved until a call went out for meals. Of course, I volunteered and made a meal, but Tim took it to Jason while I stayed home with the kids. When he got home, he told me that Jason looked really tired and that neither he nor Tracy had slept much at all in the last few days. I think this was about Day 11.  Tim told me that he had offered to stay up all night with the baby so that they could sleep and that we could all come help if we wanted to. If we wanted too?! I was thrilled and so were the kids.  We all packed up that night and headed to the Ramos's to camp.  The kids all went to sleep, but Tim and I settled down with Darcy Anne. I have to say that I was overwhelmed at all the medical equipment and thanked the Lord that my pre-med husband was there. He was so comfortable with all the medical duties that Jason so carefully explained to us.  Between the tube feedings, and her little breathing struggles, she slept pretty peacefully. But she did give us a scare several times. I didn't know she was so close to going home, but I was amazed at her determination to live. She once opened her eyes and just stared at me. There are no words to describe my feelings at that moment.

Tim fed her meticulously and worked with her tubes like a very calm and confident nurse which gave me the freedom to just cuddle Darcy Anne through the night hours. Several times though, he took a turn, just walking around with her and talking in his quiet comforting voice. Jason said she liked singing and that it calmed her.  So I  sang her every song I've ever written, very quietly, just like I did to all my babies when they were little. We prayed for her and Tim read scripture to her.  We spent the next night with her too, minus our kids, doing the same routine, but I could tell she was having a harder time. Several times she stopped breathing, and we would go get Jason or Tracy.  My heart broke for them and their suffering. I wished I could have taken it all away for them, but I couldn't. They amazed me though with their trust in the Lord's sovereignty...it was unshakeable.  We went home not knowing that that day would be Darcy Anne's last. We slept and slept and I could only imagine how tired they must have been.  We were so sad when we heard the news that she was gone. But we were so glad that the Ramos family had had such a special time with their little girl.

We can never say enough for what our nights with Darcy Anne meant to us. For me, I felt I was getting to hold the little boy, Samuel, that I lost at 21 weeks..perfect in form and body, but long passed away when he was born. Sadly, Darcy Anne looked similar though larger (and beautifully alive) probably because of lack of oxygen.  It was as if the Lord said, I know you didn't get to hold Baby Samuel, but here...you can hold Darcy Anne...for a little while...  I like to think that they are playing together up in heaven where all our little flowers bloom that didn't get to bloom for very long here on earth.  Thanks Tracy and Jason, for letting us be a part of your lives for that special season and share your burdens. We will never ever be the same...because of her little life.


Here is a letter I wrote to Darcy Anne before she was born on Tracy's blog...one of many many letters written to her....

Dear Darcy,

We know that there is a heavenly purpose for your life, though it is hard for your Mommy and Daddy and their friends to understand what that is. We are blessed by all that God is doing in your family's life because you are here with us right now. Although, you will be in heaven sooner than we expected, we are so glad you are here now, close to your mommy's heart and being held lovingly by your Daddy's hands and hugged by all your siblings until that time. We know that the Lord is watching you every moment of every day, for the bible says He knows us in the womb and sees us as we are being knit together. We pray the Lord will comfort your family who will miss you so much in the coming years, but we also pray that your little life will impact them in a beautiful way for eternity.

Love,
Donna, Tim and the family