I just could not imagine that my tiny daughter who I loved so much, who had this larger than life spirit, was actually gone. I also knew that her spirit and her memory had to live on.
~Michelle Valiukenas, The Colette Louise Tisdahl Foundation
I am excited to share my interview with Michelle from The Colette Louise Tisdahl Foundation. The work they are doing is amazing and much needed! Make sure you connect and support her foundation on Facebook, Instagram, LinkedIn, and Twitter.
Tell us your story and how the Colette Louise Tisdahl Foundation began.
My husband Mark and I struggled with infertility, ultimately going through IVF. We got pregnant on our first round of IVF and then subsequently miscarried weeks later. On our third round of IVF, we got pregnant with our daughter Colette. We were excited, nervous, and the pregnancy went along well (besides my constant all-day morning sickness). At 21 weeks pregnant, a standard OB appointment found my blood pressure at 188/110, a total shock to me since that day had been the first day I had felt really good during my pregnancy. My OB sent me to the hospital where I was admitted with a diagnosis of severe preeclampsia and told I would be in the hospital until I delivered. It felt like our whole world had turned upside down in an instant. It was early May, I was not due until September 7, and did not have the kind of leave from work that this stay required. It became obvious quickly that our two-income household was going down to one-income. I was blessed that we could sustain that financial blow, but could not help thinking of how many other families would be decimated by that, at a time when all the medical advice is to reduce stress. After being in the hospital for a day or two, I told my husband we have to do something about this problem. I spent a little over three weeks in the hospital before the doctors recommended delivery. Colette was born May 23, 2018 at 24 weeks and 5 days. The doctors and nurses all repeatedly told us that we would not hear her because she was too little to cry. But, when she entered the world and the doctors told us it was a girl, we then heard this tiny, but powerful squeak and I asked, was that her? Everyone was amazed and said, yeah, that was her. I knew then that this was of course my badass daughter who was going to change the world. Colette continued to defy all the odds for those first few days and while NICU was of course a roller coaster of yay she's doing so well, to oh, no, things aren't good, she had this spirit and energy that was so much bigger than what her tiny body could hold. After nine days in the NICU, Colette's tiny body gave out and we held her in our arms for the first time as she died. I was lost after Colette died, I just could not imagine that my tiny daughter who I loved so much, who had this larger than life spirit, was actually gone. I also knew that her spirit and her memory had to live on. In the midst of grief, I needed something to turn those emotions and energy into and created The Colette Louise Tisdahl Foundation. We launched on Colette's due date, September 7, 2018, and as of the end of February 2021, we have helped more than 550 families in 39 states, giving away more than $600,000 in assistance.
What kind of impact do you hope that your organization can have?
I hope that families going through crisis have just a little bit of relief and some of their many stresses are relieved. I also think that having had the experiences of infertility, pregnancy complications, NICU stays, and loss means I can relate to these families on a deeply personal level and therefore, can be a sounding board that understands what it is like to be a parent in these situations. On a greater, broader level, I hope that we can advocate for broad social change, to work with so many countless colleagues, friends, and like-minded strangers who do not accept the world as it is. Our work and the lives of so many families would be widely different if policies like paid family leave for all, subsidized childcare, better working schedules from employers and a society that respects and supports parents, were the norm and not the exception. I also think that if we truly confronted issues of racism, sexism, and classism in our institutions, particularly in the medical community, we would greatly change the world so that women and babies of color were not more at risk of complications, prematurity, severe medical conditions, or even death.
What is the biggest concern facing your clients today?
The biggest concern is survival. All of us as parents have challenges every day we are parenting, but for parents dealing with health concerns personally and/or for our children and for parents grieving their child's losses, it is even more difficult. When we add on the financial burdens that parents have as a result of the crisis, such as increased transportation costs, the need for medical equipment, for childcare, etc., along with loss of income either entirely or partially, these parents so often find themselves struggling on all fronts.
What inspires you to keep advocating for families in crisis?
Colette. Every day, I parent her through this organization and as all moms know, we never have a day off from being a mom. I knew when I started this that I could not let Colette's life be in vain and that I did not want her story to be something whispered among those who knew of our loss and hidden from everyone else. Few things make me happier than the fact that so many families utter Colette's name every day and keep her name and her power of her memory and life close to their hearts.
How can someone help support your mission and organization?
We of course are always looking for financial assistance which allows us to help more families and to help families more deeply. If you are financially able, we would invite you to our website: www.colettelouise.com to join our mission and help families in crisis. Additionally, we learn so much from each other and our stories and experiences, so I would invite parents and providers to consider guest blogging or being interviewed by us. If interested, please email me at firstname.lastname@example.org. Finally, share what we post, what we do with others so that we all learn and support families in crisis.