Violet Marie: 13 Stories of Trisomy 13

And finally, on Trisomy 13 Awareness Day 2014, I share details about our time with our Violet Marie once again.  Thank you so much for your love, support, and comments during this series.  It has been so healing to all of us to share our babies with you!

Who do you share your life with?

Our immediate family includes Mr. SPS, myself, E (age 4), D (age 1) and Violet.

Can you introduce us to your baby? What would you most want us to know about her?
What can I tell you about Violet Marie that I haven't shared yet already?  The most important thing is that she was and still is so very loved.  Every single second of every day she is loved and missed with a physical fierceness that drives me to do more in her honor.

Can you tell a bit about how you learned she had Trisomy 13?
At our 20 week ultrasound several markers for a chromosome abnormality were detected.  The following week we had our amniocentesis and soon after a fatal prenatal diagnosis of Trisomy 13.

What was her birth like?
Violet was born via c-section just like E and later D.  I am so thankful now that E was an emergency c-section because I was able to convince the doctors to deliver Violet the same way as many Trisomy 13 babies die during labor.

Her delivery was calm.  I'll never forget her first cry.  Like many other mothers in the 13 Babies with Trisomy 13 series said of their babies, she sounded like a tiny kitten mewing.  It was the best sound I've ever heard.

How long did your baby live?
She lived exactly 2.5 days which is the average life span of a baby with Trisomy 13.  She was born at 9:04 am on Wednesday and died at 7:30 pm on Friday.

How was your time with her?
It was amazing and exhausting and silly and peaceful and healing and inspiring and mostly calm.

What choices did you make for your baby while she was alive regarding medical intervention?
We chose comfort care only.  We had oxygen and pain medication available if needed but didn't have to use it.

What did you choose after her death for memorials?
We had already been grieving and making decisions for Violet for several months by the time she was born. The thought of then planning a service for her overwhelmed me.  Our family and friends found other ways to honor and remember her and the most thoughtful ones still do!

Violet was cremated and I felt even more healing and peace once her remains were returned to us and our home.  We scattered some of her ashes into the ocean but plan to keep most of them here with us forever.

What supports did you have in helping you make these choices?
My husband and I were fortunately always on the same page in making decisions for Violet.  If I ever doubted anything, he would talk me through it and I would hear through his words what was true in my heart. 

We had the support and advice of our family and friends, our hospital's palliative care team, and other bereaved parents who had lost a child before us.

How long has it been since you held your sweet baby?
Two years, four months, and nine days.  My arms ache for her every day.

Where are you in your grief journey today?

I am inspired.

That doesn't mean I don't still have bad days that knock me flat again, but I'm mostly in a place where the pain drives me to do more, write more, share more, love on E & D more.

So much has changed since my baby died.  I'm a different person but I like the new me. Violet and the love and pain that came from having and losing her has changed me for the better.

The song "For Good" from Wicked comes to mind:

"It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine"

What advice would you give to other bereaved parents?
I think the overwhelming consensus in this series from our Trisomy 13 grieving mommas has been a resounding and collective shout of, "Do what you need to do in the time you need to do it and don't question it!"

I also urge you to seek out others like you.  Those who came before, those who lose their children after, all will heal you as you heal them at the same time.

Lastly, say your child's name, keep their memory alive, and don't apologize for it.  Others will take their cues from you.

Is there anything else you'd like to add?

From the bottom of my broken heart thank you for reading our story and the twelve others.  To the other Trisomy 13 families who shared their babies, their love, their grief, and their photos, thank you.  All of your babies have a special place in my heart!