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To many, the loss of a child is completely unimaginable–something we shove into the darkest corners of our mind and fervently pray we never have to experience. For others, like Michelle Valiukenas, the loss of a much wanted baby is something that never goes away.

Today we welcome Michelle, Colette’s mama and founder of the Colette Louise Tisdahl Foundation, in honor of Colette, who she lost at nine days old. The Colette Louise Tisdahl Foundation works to “assist with the impact of loss through financial assistance, education, and advocacy.”

Losing a child stories are essential for education and advocacy, and we’re thankful Michelle is sharing Colette with us.

Welcome, Michelle. Welcome, Colette.

Colette Louise, a Tiny Fighter

premature baby in white hat
Colette, born at 24 weeks, lived 9 days

I’m a mom to a daughter. Her name is Colette Louise.  She was named Colette after the French author, who I learned about when I looked up names of badass women.  

Her middle name, Louise, is a nod to St. Louise de Marillac, a contemporary of St. Vincent de Paul, and the school where my husband and I met. She has blonde hair, long legs, long arms, a spunky spirit, my nose. She also died at nine days old.

Nine days of Colette fighting in the NICU led to the day we lost her.  We finally got to hold this girl we had fought so hard for, who had fought to stay here with us, as she was dying.  

I remember finally getting to hold her and thinking, this is not the way I thought it would look to hold my tiny daughter for the first time.  

We sat in a room in the hospital, a room that I had used to pump and relax in when there were shift changes in the NICU or when I needed a slight mental break from the day, surrounded by our families, holding her, talking to her, and loving her and each other.  

Everyone cried, we laughed through tears, it was the way I had always imagined us introducing our daughter to our families and spending time together, except the story didn’t end with us taking our daughter home.  

The story ended with leaving our daughter’s body at the hospital, going home alone and lost, grieving parents without a child we could touch or see, parents to a child who had gained her wings.

The Part the Parenting Books Leave Out

There are probably thousands of books that are how-to’s on parenting.  But, I have yet to find a book that tells you what to do when your baby dies. Parents who lose a child don’t have a guidebook.

I have yet to find a book that tells you  what to do when you celebrate your baby’s birth, begin to create a world in which you are this child’s mother, and then she is taken away from you just a few days later.  

There is no book to tell you that while you are still a mom, you will not mother in any sort of traditional way.  

You will not change a diaper or feed her, you will not spend time potty training or teaching lessons like how to share. 

Instead, you will mother her by making sure no one forgets her. You will honor your child by ensuring that she is still included in your family.

Nine Days with Colette

We had nine days with Colette and while it was way too short of a time, we cherished each one of those days.  

We cherish that we got to see her move and react, to start to see the signs of the type of personality we think she would have had.  

Colette was so premature that the medical staff told us as we headed into delivery not to expect to hear her cry or make any sound. She was born at 24 weeks, 5 days, just past what is considered the point of viability.  

When they pulled her out and said it’s a girl, there was this tiny squeak.  I remember asking, “Is that her??” The doctors and nurses were amazed that she was able to make that sound as tiny as she was.  

Colette hated the tubes and wires in her incubator and would take the one hand she had free from an IV and try to reach up to grab them before realizing she was not able to do so. But, that didn’t stop her from continuing to try.  

Those memories and what that spirit would have accomplished in her lifetime brings solace to me and is something I have tried to adopt and perform in her name.

Stages of Grief after Losing a Child

Those first days after Colette died were a blur.  

Before her death, I was getting used to being a new mom, accustomed to our schedule of Colette living in NICU, preparing for when she would come home with us.  

Because Colette was born so premature, we had little preparation for her, and in between long days spent by her incubator, we talked about what we should buy and put in her room.  

Our parents, our siblings, our niece came to visit Colette. During my child’s life, pictures of her were emailed and texted across the country to all of our friends and family. We posted things on social media. We were parents.

premature baby who lost her battle with life after 9 days

“You Look Like You Just Aged a Year”

Then, just a mere nine days later, the rug was pulled out from under us and it was hard to know what to do.  

It had never occurred to either one of us that, once she was born and survived the first 24 or 48 hours, we could still lose her.  

When we left the hospital without her and knowing we could not just go back to see her, we waited for the valet to bring our cars up and my mom said to me, “You look like you just aged a year.”  

I responded, “Really, that’s it?  Because I feel about 102 right now.” 

In those first few days, I found myself sleeping a lot because, in sleep, I did not have to confront the fact that my daughter was dead. I did not have to come to terms with what it meant to deal with parental grief, to be a mom to a child I could not hold in my arms.  

In sleep, I could instead dream of my daughter, what she would have been like as this little girl who grew in my belly, who loved to move and dance in utero to Gloria Estefan and Pitbull, who seemed to hate my beloved Lou Malnati’s deep dish pizza, but who shared her dad’s affinity for a really good steak. 

When I woke up, I had to remember that she was not with me. I could not go see her, and I would only have those nine days with her to sustain my maternal needs. Bereaved parents may find grief processing to come in waves, and for me, sleep brought a short respite.

Feelings of Despair and Guilt

The surge of emotions I confronted ranged from complete despair to total anger to guilt.  I was lost; I did not know what to do with myself; I did not know who I was anymore.  

I was angry at a God that did not protect my daughter, angry at other parents who had healthy children.

 I was guilty because I felt like my stupid body had failed Colette–because I had not done a mother’s basic job of keeping her children alive. 

I honestly didn’t know what to do or say.  I wanted to go back in time and fix things to lead to a better outcome or to go back to appreciate the time I had with her more.  

I wanted to fast forward in time to when I would “get over” this.  

I wanted to have my husband so close to me, and yet I felt like such a failure as a wife because I could not give him a healthy child to be at home with us.  

I still very much wanted to have a child at home and yet could not imagine going through any of this again. 

I was so grateful for family and friends who were in constant check with me and yet angry at the friends and family I did not hear from in those first few days (some of those people I never heard from). 

I felt closer to my sister and so proud of how she handled the situation with Mark and me, showing up the day after to direct us about how to plan Colette’s funeral.

Yet, I also was sad and felt guilty that I had introduced this reality and fear to her as she was beginning the discussion about growing her family.

A Different Kind of Grief 

I had grieved before Colette.  I lost my grandfather who I adored so much; I lost an aunt to gun violence at a young age. And yet, this was different.  

No parent is supposed to bury their child. It is against everything we know to be true in nature.  

Women get pregnant, have babies, bring them home, and raise them. Losing Colette was like saying to us that everything we had known to be true was no longer true. 

I remember dreaming of days when I would be over this, when I would go back to my usual self.  

But, that’s the thing—there is no getting over your child, there is no returning to the person you used to be because the person you used to be did not know about the fragility of life, did not live in a world where babies do not always come home.  

The innocence and naivete of who you are before loss can never be regained after you experience loss. 

“I have a Mom, her name is Michelle.”

Two years later, I would like to say that I have figured it out, that I am better than I was those first few days.  

But, while I do manage to get out of bed and function, I am not the same person I was.  

I was totally a planner before Colette and now, planning does not provide me with any comfort because I learned that plans fall apart.  

And I still am not “over it.” I have terrible days when all I want to do is curl up in bed and sob, when I am angry at the world, at a God who could let this happen, and when I feel guilty that I was the cause behind all of this. 

I find comfort in the fact that I am not alone in this, that my husband is here, and that we have found a community of fellow loss parents who I am so incredibly grateful to know and call friends.  

These friends are the ones that I call upon when the bad day hits and it feels like everything is going wrong–when it feels like you’re drowning but don’t know how to prevent it.  

We all share our stories and our advice and sit with each other in our emotions.  I certainly hope that all of our babies are friends too and that they talk about their parents. 

I would love to know that Colette says, “I have a mom, her name is Michelle.”

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