Balance of Parenting Non-Living Children

by Michelle Valiukenas

As a mother to no living children, some of the absolutely hardest things I have done is to continue breathing after losing Colette.  It may seem a tad melodramatic, but it is true because parenting a child that you cannot see is a constant struggle of keeping her memory alive, her presence in our immediate family and in our extended family intact, all while struggling every day with our own personal grief.

            My husband and I pretty quickly agreed that Colette would remain an active presence in our lives and our family.  We would talk about her regularly, included her in discussions about our family, how we would continue to give back in her name.  We talked about how future children would know about their older sister in heaven.  For us, Colette was and still is as much as part of our family as if she was living in the next room.

            Of course, this did not come with a whole host of problems that we continue to encounter day after day.  There are so many issues that come up and that we have to figure out solutions to still remember Colette and include her in our family.

• Family photos. While we are thrilled that we have pictures of Colette in the NICU with all of her tubes and wires, taken on cell phones, and then especially thrilled to have the gorgeous photos of Colette taken by Now I Lay Me Down to Sleep after her death, we do not have a family photo. The closest we have currently is a picture of Colette in her incubator with both of our hands touching her.  And as we hopefully reach our long-standing goal of bringing a child home, we also struggle with knowing we will never have a complete family photo, that a very important piece will always be missing.

We were lucky enough to have been able to create what we call our “Coco bear,” made from a blanket personalized with Colette’s nickname, that we often use to symbolize Colette in photos.  But, of course, having a bear is not a replacement for a child and it is so difficult to remember to include the bear when we have the possibility of family photos.  Do we take it with us every time we go anywhere with our family?  Do we keep it at home so it is safe from wear and tear?  And while parents do not usually forget their children, when our child’s physical presence is a stuffed bear, it is easy to just casually forget.  

• What to say to future children.  Most parents do not even think about having to have the talk with their kids about death. Then, when it comes up is usually in a natural circle of life kind of way, like as a relative or neighbor dies. But, from the very beginning, our future children will have to encounter what death means, and the innocence we all got to have with believing only those people died after living long lives will be shattered.  Our children will know right away that life can be cruel, that sometimes babies and children die.  

We will also struggle with the balance of still parenting and remembering our oldest child who is not physically here while also simultaneously parenting living children so that they still feel loved and not that they are living in the shadow of their older sister and completely unable to live up to the memory.

• How to get other people to remember that we have a child.  For most parents, they know that they are regularly going to be asked about their child and will easily be able to bring up their child to others. But, for us, we often have to initiate those discussions and that can be exhausting.  There are sometimes whole days (and longer) where we are the only ones who say Colette’s name.  People who have not suffered the loss of a child may not realize just how amazing it is to hear her name.  Recently, we were at an event and we heard a mom yell Colette at her daughter and it warmed my heart so much that I had to go over to the mom and share our Colette’s story with her.

• Birthdays and holidays.  We commemorate Colette’s birthday and angelversary without a second thought. But, it is often to get others to remember the dates or even to know what to say to us or how to commemorate the dates.  The same thing happens around holidays.  Gathering with family at holidays is a huge trigger to realize that we don’t have to deal with high chairs or strollers or car seats or anything because Colette is not there.  It is also the time where we want to make sure Colette is included as part of our family, even if not physically present.  One thing we have done is that we have a candle we bring to these events, that we take a few moments alone to think of Colette and light it and then include it in the day as a symbol of her presence and position in our family.

Parenting a child who is not physically present is one of the hardest things someone can deal with and one that feels like the world’s worst rollercoaster.  We love Colette, she is still our daughter and part of our family, but it is a struggle, one we never intended to have.

–Michelle Valiukenas Tisdahl and her husband, Mark Tisdahl are the founders of the Colette Louise Tisdahl Foundation which they created to to financially assist families in crisis due to pregnancy complications, premature birth/NICU stay, or loss.