By: Michelle Valiukenas
“I don’t know how you could survive that.” “I can’t even imagine.” “I know that I couldn’t survive something like that.”
Loss parents have all heard these phrases and other similar ones more than once. And if I’m being honest, five years ago, I would have said the same things. But, as someone surviving with a child in heaven, I have learned a lot more about this experience and about myself. People will tell me that I am so strong, that I’m resilient, that I am amazing. The truth though is much simpler: Loss parents survive the loss of their child because we have no other choice.
The death of my daughter Colette in May 2018 was the worst experience of my life. I pray that I never experience a pain like that again and yet, I know that the pain over that experience is a pain I will carry the rest of my life. Sure, there are a lot more days now when the pain is not as severe, but it’s still there always—a dull ache that threatens to surge at any time, sometimes with warning signs and sometimes with a hit so hard it knocks the wind out of you.
From the moment I was pregnant with Colette, I knew she was a girl. Even before we officially knew I was pregnant, I knew we were going to have a daughter. I dreamed of her at nights—vivid dreams of a girl with long, blonde hair, running through fields of daisies, of a girl who snuggled up to me holding a stuffed animal. I could picture her, but ironically, I never could see her face. The image of her running through daisies was always her back in front of me as I ran to try to catch up and the girl snuggling up to me buried her face in me, unknown and unseen to me.
But, I was okay with that, she would be my little girl and having the mystery of what her face would look like was fun and something to look forward to. My husband and I had purposely chosen not to find out the baby’s sex, something we felt was important to us and probably something I could easily endorse since I knew with every inch of my being that we were having a girl. My commitment to the knowledge I felt internally that we were having a girl was so bad that when we started talking about names and my husband broached boys’ names, I said, we don’t need to worry, we’re having a girl. I knew that he was frustrated with me and wanted to have a plan for both possibilities, but I just did not think we had to worry.
Fast forward in the pregnancy to a normal OB appointment and a very high blood pressure reading turning into a trip to labor and delivery which then became a hospitalization until delivery. Then, after a little over three weeks of being in the hospital, the doctors recommended delivery and our sweet girl Colette was born at 24 weeks and 5 days. When they said it’s a girl, I said, see, I knew it. We had been warned repeatedly that Colette would make no sounds, that she was too young to even cry. But, as everything quieted back down while they were closing me back up after the emergency c-section and the neonatologists took over, working on Colette, I heard a small squeak in the room. It was so tiny, but also so strong and I remember saying, “was that her?” I was told that yes, that was her and everyone was so surprised and amazed, but I thought, “yup, I know that’s her, she’s my kickass daughter, who is tiny but strong, and will defy all the odds against her.”
Colette went off to NICU and there were some complications in closing me back up so the first time I saw her was hours later as they wheeled me in my hospital bed in to see her in NICU before they sent me to my room to get some rest post-surgery. Immediately, I noticed how tiny she was, thinking she looked more like a tiny doll than a baby. But, she also had these really long legs and really long arms that I was convinced was the toughness in her. Her eyes were still shut due to her gestational age and she had so many tubes around that it was hard to see, but she had my nose. She was here and I loved her. I would not get to hold her, but I immediately leaned over, despite the terrible pain that I felt in doing so, and placed my hand inside the isolate to touch her. This was my girl, the one who loved dancing in my belly to Cuban music, the one who caused me such morning sickness, the one who was a rebel from the start, getting me sick on my favorite pizza and enjoying steak as much as her father (much to her mom’s dismay), the one who I talked to privately whenever I could.
Finally, the nurses agreed I should be sent to my room. They took me upstairs and I fairly quickly went to sleep. When I woke up the next morning, I was still on an IV of magnesium and could not go to NICU to visit her. I was impatient all day, trying to relax and rest, but really just ready to see Colette. The nurses knew that I wanted to go so badly that they asked the doctors to remove my IV early and they did. They tried to pull over a wheelchair for me, but I said, no, it’s okay, I’ve got this and swung my legs out and stood as quickly as possible. When we came into the NICU, I found a different place than I had been in the night before. While they knew it was a quick visit last night, today they required us to follow all the procedures we had previously skipped. Mark showed me how to wash my hands, to clean my phone, all steps I really wanted to skip just to see her.
Then we went in and sat with her. Colette was amazing to watch. Those long arms and legs of hers were in constant movement. She quickly realized that she had the tubes and wires and wanted them off. She would take one of her arms and put it up to her face and try to pull out the tubes. She did not just do it once, she would try several ways, and then she would put the arm down. She would wait a few minutes and then pick up the other arm and try again. She was just a joy, a ray of light and love.
Nine days of the ups and downs of NICU, of her showing tremendous progress and then huge setbacks and then back again and again, and it was clear that her lungs were just too underdeveloped and could not hold that spirit inside. So, we finally got to hold Colette as she was dying, surrounded by our families, with everyone getting a chance to hold her. My husband and I are both activists and I remember saying to her, “Okay, we’re going to keep fighting here and trying to create change, but we need your help and so you do all that you can in heaven.”
I miss Colette every single day. Somedays, the pain and grief is so great that it’s hard, if not impossible, to even get out of bed. And other times, it just lingers on the periphery, a constant reminder of her way too short life, but not actively hurting me.
Until we meet again, I will continue sharing her story, allowing her to be my inspiration, doing the necessary work here and grateful to have an ally in heaven.
About the Author:
Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her angel daughter Colette Louise who she lost at nine days old, and her only living child, her rainbow baby, Elliott Miguel. Inspired by her journey with Colette, Michelle and her husband founded The Colette Louise Tisdahl Foundation, whose mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. Their flagship program financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. The organization’s ability to help families relies on donations and grants and they are grateful if you are able to donate. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenview, Illinois with her son Elliott, husband Mark, and dog Nemo.