Lucy and Ruth- a story about Anencephaly, Loss and Love

Let me tell you about my friend Ruth and her beautiful daughter Lucy. Ruth is pregnant with Lucy in this recent painting, called 'The glow that she left in me is forever ignited'. I knew I could only attempt to capture a small portion of their beauty in this piece, but I had to try. Ruth contacted me about two months after Lucy was born, and shared with me her powerful and emotional story. Since then we've kept in touch and I've been so blessed by our communication. Ruth is painted shortly after she found out Lucy had anencephaly, which is a cephalic disorder resulting in the top portion of the head to be unformed. Of course this was devastating to Ruth and her family- and this painting depicts a photo her son took of her days after the news. Her son Luke drew sunflowers on Ruth's belly because they knew they would name her 'Lucy Sunflower'.

Below Ruth shared with me some of her birth story, which is so incredibly powerful. Ruth has a blog in which she writes about experiencing loss as a parent. Lucy went home with her family and lived for 33 hours, being bathed in their love. I encourage you to read more about Ruth and Lucy by going to her blog, SweetBabyLucy. To learn more about anencephaly please visit anencephaly.info  I plan to paint more of Lucy's story- of her sweet face next to her mother's beautiful one at home in bed. The images of Ruth birthing Lucy will be etched in my mind forever of a powerful, joyful woman overtaken with courage and love. I would love to open a space for grief and loss and allow them to be, alongside the hope and joy in birth. Ruth has been so open with me, being honest about her grief and the process of mourning Lucy, of missing her every day, of being pummeled by sorrow and the reality of living without her child. I am so honoured to listen to her, and I hope you will also be touched by Lucy's lovely soul and Ruth's courage and immense love for her daughter. I know that Ruth would welcome an opportunity to connect with anyone on the topic of anencephaly, please contact her through her blog.

My name is Ruth. We had an emergency induction due to pre-eclampsia, so I did not have enough time to hire a birth photographer.( We do have a few blurry photos that my husband snapped seconds after I caught my sweet Lucy in my arms). My dreams of a homebirth were shattered at this time, and as I lay crying in the hospital bed, so angry and sad that yet another thing was being stolen from me, I realized that I still can have control of my birth, it was my birth and nobody could take that away from me. My birth team was there with me, ready and supportive of only me. I had a wonderful and strong doula, my loving husband, my 5 year old son and my mother all in the room with me. I picked myself up and I birthed the way my body knew how. I felt like a total goddess. I felt like I was one of the strong women in your amazing paintings, the paintings that I had been looking at my whole pregnancy. 

I would like to tell you a little about me and my dear daughter. I was planning on a low key homebirth. I did not want an ultrasound because I was scared of negative side effects. But at 36 weeks, my midwife, my husband and myself knew I needed to get one. I personally felt like something was so wrong, and medically I had very high blood pressure and I was measuring 31 weeks. We opted for an ultrasound, and we found out our little one had anencephaly and would not be with us much longer. Still being given the "okay" for a homebirth and after the initial shock, we kept preparing, at 40.5 weeks we found a wonderful midwife/doula and took her with us to see the hospital midwives because my previous midwife abandoned us... When we came, they told me that I had pre-eclampsia and I had extreme high blood pressure. They admitted me that day. I had my husband go home for our things.

On April 2nd 2013 at 1:17am while kneeling on the floor in the hospital room, with the lights low and my birth team letting me be. I birthed my sweet Lucy right into my arms. It was so magical and amazing. I can't even explain how peaceful and beautiful it was. My sweet Lucy was breech and I felt her cute, soft bottom as she was coming out... and I will never forget the moment I saw and felt my dear little one in my arms. We left the cord intact, and we cut it after I birthed the placenta. In the picture I wish you could see that. but someone threw a blanket over us as soon as she was delivered and before my husband got the photo. I wish so much that I could see her full body, and the whole time she was with us, we didn't get a full shot of it. Just bits and pieces.

I would die for a painting of my birth and a painting of my dear Lucy. I miss her so much. She means everything to me. I also really want to spread awareness, in the fact that YOU can bring your baby into the world with so much love and peace. And even if your baby has a condition like anencephaly, YOU can carry to term and YOU can have those few sweet, amazing, breathtaking minutes, hours or days with your baby. We had 33 hours with our sweet Lucy and I feel like even if she had passed in my womb, I feel like I would have loved her the same and been happy to spend some time with her after delivery. She was so strong and amazing. I can't stop talking about how beautiful she is. I am so grateful for the time we had with our precious Lucy and I would not trade those hours with her for anything in the world. We even had a chance to bring her home with us and she spent a full night sleeping in my arms. She smiled the loveliest smile that I have ever seen. She was wise beyond her life. Very wise and knowing and such a gentle soul. She gave me everything I could have ever asked her for. She birthed gently into this world, into my arms, she lived long enough for me to bring her home, she gave me soft smiles when I touched her face, she latched on once (even though she did not nurse, she did latch on), we got a whole day and night together, she let us know when she was hungry by rooting and looking to nurse, she gave me one sweet cry in which I was able to comfort her, she scrunched up her eyes when the kids were loud, she had the most beautiful and the sweetest yawns, she lifted her head, she let me comfort her and love her, She made lovely baby noises, and she was so gentle and peaceful and I felt so much joy and love for her every minute. I got to feel her warm body against my skin, I miss my dear Lucy every second of every day. All I want to do is talk about her and hear her name. She is my sweet flower child.


When Ruth posted the photo used as reference for this piece on Facebook, at 8 months pregnant, she wrote under it, 'I will only get to see you for a minute, an hour or hopefully a day or two... but you have to know my dear, that every moment you are inside my womb, every vibrant movement you make, every hiccup you take... I cherish. and I love you and always will. I wish you could be with us always, but even though you won't be with us long.. you will always be there, our little light, our little Sunflower. '
I hope that we are able to love and support each other, to hold each other up and to reach out through pain and loss. Life includes hurt, and I hope that we can share our stories of loss, and listen to other's stories. Many mothers also grieve, let's allow those voices to speak and let's talk about their little ones.

In memory of Lucy, Enoch, Finn, Kendall, Rafael, Ruben, Anicea Genevieve, and Seraphima and many other little souls whose short lives touched us. Thank you Ruth, for sharing with me.