By: Michelle Valiukenas
I am the proud mom of Colette Louise, my little fireball, gorgeous blonde with my nose, long legs, long fingers, and a spirit that just radiated love and peace.
Colette was born at 24 weeks and 5 days, three weeks after I was hospitalized with preeclampsia. She fought valiantly for nine days, defying odds every step of the way. She would be struggling and then as if to say yeah I’m not going anywhere, she would exceed all expectations.
On May 31, the outlook did not look good. At the hospital, the doctor said, “Oh, you’re Colette’s mom, let’s talk,” and then found a private room. Logically, I knew that this was a bad sign, but emotionally, I felt like my daughter would continue every obstacle put in front of her. As my husband and I stood by her incubator that day and the doctor looked at us and started to say, “We need to talk about what you want to do,” I remember screaming in my head for Colette and saying, please, do not make me make these decisions, I just cannot do it. Almost as if she heard me, her blood pressure immediately began to plummet. We got Colette baptized and then our family gathered with us and we held her for the first time as she died in our arms.
No one prepares you for that. Everyone has advice, often unsolicited, as to how you should conceive, handle your pregnancy, raise your children, etc., but no one ever tells you about when you go home without your child.
For me, I spent the first couple of weeks in a bit of a fog. I remember crying a lot, I remember being angry, but mostly I remember feeling lost, like I could not believe I was no longer pregnant and yet had no baby at home or even in the hospital. I struggled a lot as the weeks went on and especially about what my identity was. Shortly before being hospitalized, I had submitted my resignation, planning to be a stay at home mom. Coming to that decision and accepting that my identity would change was tough, but ultimately exactly what I wanted. But, now, if I was not a stay at home mom, then what was I? Could I really go back to my job as if that last year did not happen? Could I change jobs? And what was I supposed to do to still be Colette’s mom, to ensure that her name and memory were still remembered even though she was not here?
I kept coming back to a thought that had started when I was in the hospital. I left work one Tuesday and headed to an OB appointment, fully intending to be back the next morning like usual. I never returned to work. Instead, my full-time job became “cooking” the baby as long as possible. It quickly dawned on me that I had not planned at all for this. I did not have the kind of leave time that would allow me to be in the hospital until delivery and although I could work remotely and stretch my time a bit, I still quickly lost my paycheck. We could afford it, but I said to my husband, we need to do something because most families could not.
The idea continued to grow as I saw families’ struggles in the NICU. I saw one family that shared our room that lived about an hour away from the hospital because they had been transferred.
I kept thinking about everything these families went through, including us, but that also having to worry about money was yet another burden and stress.
After Colette died, we had to make plans and hand over money quickly. We did it because we could and we wanted our little angel to be remembered. But, again, I kept wondering how these families could handle this additional stress.
As some of the fog lifted, I realized that I needed to do something. I wanted people to know about my incredible daughter and I also wanted to help families that were in situations similar to us, but needed some financial help to get through it. I wanted Colette to be remembered, but also I wanted her life to mean something. I also wanted to continue mothering and knew the traditional way of doing so was not going to work.
All of these finally morphed into The Colette Louise Tisdahl Foundation, which I run as my full-time job. We financially assist families who are in crisis because of pregnancy complications, premature birth, and then after pregnancy and infant loss.
We launched the foundation in September and have helped over 40 families in 10 different states. I often hate that this is how I am mothering, but I am mothering. I was able to channel my grief into planning and executing this foundation. I get to help families in their time of need, to remove one layer of their stress. And I also get to see that sometimes there are better outcomes, that babies go home and that pregnancies can turn out okay. But, most importantly, I get to talk about Colette and share her story every day.
While some loss parents may struggle with how to speak about their angel babies, I am lucky to have the job of talking about her.
I miss Colette every single day and often wonder what she would be like now, would she be a baby that slept through the night or would she be payback to me for all those nights that I did not sleep as a baby? Would she love to eat or be picky? But, one thing I know for sure is that she had a spirit that inspired and loved. And her foundation is an ongoing love letter to her, to tell Colette that she will help many families and that she will be remembered.
That is how I mother Colette.
About Michelle Valiukenas
Michelle is the proud mom of her angel daughter Colette Louise Tisdahl. Colette was born May 23, 2018 and died May 31, 2018. Michelle is the executive director of The Colette Louise Tisdahl Foundation, which financially assists families dealing with pregnancy complications, premature birth, and pregnancy and infant 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 husband Mark and dog Nemo.