If you saw me, you would not know I had a daughter who should be turning three shortly. My daughter Colette died at nine days old after spending her short life inside an incubator in the NICU, born at 24 weeks and 5 days. I did not get to see Colette smile or giggle, I did not get to see her open her eyes, and the only time I got to hold her was as she passed. 

Her death did not mean I stopped being her parent, it just meant parenting her would be different

My method of parenting Colette is to run the organization we created in her memory, The Colette Louise Tisdahl Foundation. Our 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.

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When I was pregnant with Colette, after a long infertility battle that also included a miscarriage, I was simultaneously scared and excited. At 21-weeks pregnant, I went to a standard OB appointment, feeling good, but after a blood pressure reading of 180/110, I was sent to the hospital, diagnosed with severe preeclampsia, and admitted until I delivered. 

I did not have enough leave to last me what I hoped was a long-term stay. I did some work from the hospital, but we quickly lost my salary. Thankfully, we could handle it, but how many families would be in financial ruin.

Why were the options only two-fold: either work and risk harm to mom and baby or don’t work and risk financial ruin, evictions, shutoffs, debt?

During my hospital stay, Colette’s time in NICU, and then her death, I kept thinking more about the financial burden these crises have on families. It is about losing income and trying to stay afloat since the crisis does not mean bills and life go away, but it is also about enduring additional expenses ranging from childcare to increased commuting due to families having to go to hospitals further away for the appropriate level care to insurance premiums and deductibles.

If we know that parents being at their NICU baby’s bedside improves short- and long-term outcomes for babies, why were we not helping parents to be able to be there as often as possible? Why were we setting parents and babies up for failure just because they did not have the luxury of being at a certain income level? Or in cases of loss, in a time that is so traumatic, how could families have to make these decisions that help with grieving based on finances? Why were we not providing families with options to memorialize their children in whatever way they needed to help them in a grief that is unimaginable to most?

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We launched The Colette Louise Tisdahl Foundation on September 7, 2018, just over three months after losing Colette, on her due date. Our plan was to provide financial assistance to families who found themselves in financial crisis due to high-risk pregnancy or pregnancy complications, NICU stays, or loss. 

To date, we have helped over 600 families in 39 states and given away more than $600,000 in financial assistance. 

Yes, those numbers are staggering, and it is so amazing to hear how many families know Colette’s name and story. But, what is even more staggering is how many of the families feel relief, how big of an impact even small dollars make to a family in crisis.  Families say what meant the most to them was the fact we communicated with them in a non-judgmental way, that we understood their family’s circumstances, that we cared and listened. I take those things to heart and I push myself to ensure we continue providing this to all the families we help. 

I have always loved the African proverb, “It takes a village to raise a child.” But I would add what I have foundit takes a village to grow a family, to help a family in crisis, and to survive trauma. We hope Colette’s foundation and her inspiration and memory allow us to be a small part of many families’ villages. 

Originally published on Greenwich Free Press

Michelle Valiukenas

Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her angel daughter Colette Louise, and her only living child, her rainbow baby Elliott Miguel. Michelle is the executive director of The Colette Louise Tisdahl Foundation, which financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. 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.