Violet Evelyn: 13 Stories of Trisomy 13

Beginning our Trisomy 13: 13 Babies, 13 Stories series we have the beautiful and lovely Violet Evelyn. Violet was born to our (now) close friends Amber and Felipe and because our girls share a name and a diagnosis, we've always felt extra connected.  I found her story on Faces of Loss.

Thanks for sharing Violet with us, Amber.  Who else do you share your life with?
I share my life with my husband, Felipe. We've been married for 2 years now.

Can you introduce us to Violet? What would you most want us to know about her?
My baby's name is Violet Evelyn. She was stillborn at 36 weeks on August 12, 2011. She looked exactly like her daddy in every way. She had his curly black hair, his nose, his mouth, his hands and feet. There are so many things I want everyone to know about her, but I guess what I really want people to know the most is that her life mattered so much, at least to me. I feel some people don't acknowledge her as much as a person and as a baby because she was stillborn, but I feel extremely lucky that I got 9 months with her pretty much all to myself. She is loved so much, and she has taught me more in life than anyone else.

Can you tell us a bit about how you learned she had Trisomy 13?
Violet's death was very shocking to us. I had many ultrasounds throughout my pregnancy with her, and I even saw a perinatologist twice who did more in depth ultrasounds. Everything always looked fine. The only reason I was sent to see him was because I was on an antidepressant for the first part of my pregnancy, and they were just sending me to him as a precaution. When we learned she had died, my OB warned us that we would probably never know what happened. We opted not to do an autopsy, but they did take samples of her skin for testing. About a month after she died, the doctor called me to let us know that she had Trisomy 13.

What was her birth like?
Her birth was traumatic. I don't really remember my labor that much because I was still so in shock to learn that she had died. I do remember many people coming in to ask me a bunch of questions about if I wanted to donate her organs, her skin, her eyes. I said no to all of them and I was honestly really mad they would even be asking me these questions. I kind of felt bad for saying no, but the idea of having her cut apart for her organs, even if it would help others, was beyond devastating to me. Then people kept coming in to ask about funeral home arrangements and things like that. It ended up progressing very fast, and I wasn't ready for her to be born. I was terrified of so many things, especially how she would look, and how I would be able to actually hold her and look at her. I remember crying when I had to push, saying to my husband that I couldn't do it, I wasn't ready. As soon as she came out I remember saying, I feel so empty and just crying my eyes out. My doctor cut her cord, described her appearance to me, he said she looked beautiful and peaceful, she looked like she was sleeping. He said she just had a small bruise on her forehead. My nurse held her and cried. She took her over to the baby warmer for awhile until we were ready to see her.

  

Amber, everyone who sees her has that same reaction as the first doctor who saw her.

SHE IS BEAUTIFUL.

How was your time with her/him?

I guess I will answer this question as honestly as possible. After a short amount of time, we were ready to see her and the nurse brought her over to us. My husband held her first. I will never forget the look on his face as he looked down at her and cried. She looked just like him. She was beautiful and as soon as I saw her and saw the baby I had been growing for almost 9 months, I fell even more in love with her. I didn't think that was possible because I already loved her so much. I felt an overwhelming love that every parent probably feels the first time they see their baby. To me, she was the most beautiful baby I've ever seen. I held her and kissed her, and told her how sorry I was, and told her how much we loved her. My younger sister was there, and she took pictures for us. My parents came to the hospital and held her. The nurse took her hand prints and foot prints for us. My sisters had contacted Now I Lay Me Down to Sleep and a lady came out to take pictures. A hospital chaplain came and did a little ceremony similar to a baptism for her too. Her appearance started to change, and it was really hard to see. Her skin started getting bruised and blotchy. Her mouth kept opening. Blood started coming out of her nose. I took a tissue and wiped it away many times. I still have that tissue, too. We decided we didn't want to remember her that way, so we put her back in the baby bed. I knew they would be coming for her soon to take her to the morgue. I kept getting out of my bed to go over and see her again. It was so hard knowing it was the last time I would see her, and that my baby would be going to the morgue all alone, instead of going to postpartum with me.

What did you choose after her death for memorials?
We were living in Hawaii at the time and all of my husband's family was in California. One of my sisters was living in Ohio with her family. The only family I had there were my parents and younger sister, and they all were at the hospital and got to see her. We decided not to do an actual funeral because everyone was so far away and they most likely couldn't come out for it. We chose to cremate her and we decided to keep her ashes instead of spreading them somewhere. I want to have her close to me for the rest of my life.

What supports did you have in helping you make these choices?
My husband and I talked about it a lot before we made the decision. It was a really hard decision, but I knew if I ever moved away from Hawaii, which we did, it would be too hard to have her buried there and be so far away. My sisters helped a lot with contacting funeral homes and they were the ones that made the arrangements for the funeral home to come to pick up her body so I didn't have to.

How long has it been since you held your sweet baby?
It was 2 and a half years on February 12.

Where are you in your grief journey today?
I'm doing a lot better than I was 2 years ago. It's been a process. I remember when I first got to the point where I didn't cry every single day I felt so guilty about it. I'm to the point now where I can think about her and smile, or just feel love for her instead of being completely devastated. I can walk by the baby section at the store and not want to run out of there crying. I can talk about her without being heartbroken. I still have days where it's overwhelming, and I'll sporadically burst into tears. I still miss her so much, and I'm sure I always will.

What advice would you give to other bereaved parents?
Do whatever feels right to you. If you want to stay in bed for days, then do it. If you want to go out on a shopping spree, or go on a trip to get away, then do it. Everyone responds differently to grief. Do what makes YOU feel better. You and your significant other may deal with your emotions and grief completely differently, and that's ok. You might fight more than usual because of it. You might get mad at how they are responding to everything, or feel like they don't care as much as you do. Just try to talk and express how you're feeling instead of turning against each other. It can really take a toll on your relationship. Also, just know that the pain you feel in the beginning, the overwhelming, raw, unbearable pain will eventually change. It doesn't go away but it changes to something you can live with. Do little memorials for your baby if it makes you feel better. I always feel better when I do things to remember her and honor her. Try not to listen to what others who haven't been in this situation have to say. People will say some of the dumbest, most hurtful things when they're just trying to help, not realizing they are just making things worse. They don't understand. Also, as hard as it might be, try not to blame yourself. That's something I still struggle with a lot.

Amber and Felipe's strength and relationship has always impressed me.  In a few short weeks they will welcome a rainbow baby, Violet's little sister.  Having a rainbow baby is bittersweet and will never take away the pain of missing Violet but I can't wait to see them continue on their parenting journey with another little girl.  Violet made them amazing parents 2 1/2 years ago!

Violet's aunt founded Violet's Light in memory of her.