Social Impact Heroes: Why & How Michelle Valiukenas of The Colette Louise Tisdahl Foundation Is Helping To Change Our World
No is a complete sentence. There is a feeling for a lot of us who start a nonprofit, a business, a service that we have to say yes to everything and that if we say no, we have to have a long explanation as to why, but it is so important to realize that no is a complete sentence and does not need a disclaimer. It’s definitely something I still struggle with, but I do try to remember all the time.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Michelle Valiukenas.
Michelle Valiukenas is a lifelong activist, with particular focus on women and immigrant communities, spending the first part of her career as an attorney, representing domestic and sexual assault victims and the second part of her career advocating on issues related to maternal and infant health. She runs and co-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. Michelle is a mom of three: her angels Sweet Pea and Colette Louise, and her only living child, Elliott Miguel.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path and point in your life?
I have always been and at my core, I am an activist and storyteller. I want to use my abilities and my privilege to help those in need. In the beginning of my career, I was an attorney representing domestic violence and sexual assault victims. During that journey, I met my husband and we got married, tried to get pregnant, went through a long road of infertility, including a miscarriage, before getting pregnant with my daughter Colette. At 21 weeks pregnant, I was hospitalized with severe preeclampsia and told I would be in the hospital until I delivered. From one moment to the next, my whole life was turned upside down and while I was worried about so many things, I did not have to worry about money because I knew we would be okay. I also recognized how blessed and privileged I was and how many families would suffer if they experienced similar complications; that thought stayed with me throughout our journey and beyond. Ultimately, I stayed in the hospital for a little over three weeks before doctors recommended delivery and Colette was born via emergency c-section at 24 weeks, 5 days. She was whisked off to the NICU where she spent her short life, nine days, before we lost her.
After Colette’s death, I was lost and overwhelmed. I did not really know what to do with myself and I wanted everyone to still remember Colette. I also had that thought about finances still floating around in my head. Along with my husband, I founded a nonprofit, The Colette Louise Tisdahl Foundation, with a primary goal to financially assist families in crisis due to high-risk or complicated pregnancies, NICU stay, or loss. In a little over four years, we have given away more than $1 million in grants to families in need.
Can you share the most interesting story that happened to you since you began leading your company or organization?
Wow, so many things come to mind, but I think the most interesting has been that while I thought we were doing financial assistance, I found out what a lack of knowledge there was and that me sharing some of my stories and insights meant a lot to so many. I remember being told that somebody read through our social media posts and blogs in order to equip themselves with the knowledge and ability to talk to a loved one who had suffered a loss. That was when I realized we needed to also do a lot of education, to share the seriousness of the maternal health crisis in the U.S. as well as what to do for loved ones, and so much more.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I’m not sure if it’s ha ha funny, but one of the greatest lessons and mistakes I made at the beginning was overestimating how others’ reactions would be to our services. I had this vision that I would contact a hospital and say, I have this great program to help your patients and the hospital would come towards me with open arms, sending patients our way. What I found instead is that there was a lot of red tape and getting to the right people was difficult, if not impossible, and that even when it got to the right people, a lot of people thought we were too good to be true and it took a few wonderful people who believed in us and really supported us to get the ball rolling. The lesson I learned from this was that I had to be innovative. For a time, I would go share the work we were doing with literally anyone willing to listen. Then, I had to think about workarounds to get to patients through other nonprofits, like the Family Support Network of Central Carolina, who embraced us and shared about us to their families, and the Ronald McDonald House of Chicago, who shared the information with their houses, and that set a lot of this in motion.
Can you describe how you or your organization is making a significant social impact?
We are supporting families whose journey to bringing home a healthy baby has been negatively impacted. There is a picture I once saw about an individual with their back to the ocean and a tall wave heading her way. I think of that as what our families experience — things are going as planned until the wave hit. We are able to be a place where they can share their story and where we try to help as much as possible to take a financial burden off them.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
One story that sticks out to me is a woman who had newly immigrated to the United States while she was pregnant with twins, with the plan for her and her partner to establish themselves here and prepare for their babies’s arrival. Unfortunately, as we see with our families, life had another plan and the babies arrived three and half months early, sending their whole plan into a spiral. With children in the NICU, her partner just starting to work, them living with relatives, without a car, and without other resources, mom was using public transportation to get to see her babies. She also was bringing breast milk every day as per the clinical trial the twins were a part of. Her social worker reached out, explaining that public transportation was taking her two and half hours each way, with her out in the cold weather, and asked if we could give her an occasional cab or taxi ride. We worked on it, set her up under our Lyft account, and gave her the ability to take a comfortable ride that only took 20 minutes each way, instead of two and half hours, during the length of her babies’ stay.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Most importantly, we need to have a mandated paid family leave to help parents and families be able to afford to focus on their health needs. It is one of my greatest pains that as a country, we do not help families in this way. We have laws that dictate that a puppy cannot be separated from their mother for eight weeks and yet nothing for our humans. We literally are treating our dogs better than our parents.
Secondly, we need to put protections for reproductive justice into law. The protections under Roe that were stripped away by the Supreme Court means that mothers will die. Abortion is healthcare and we need to protect it as such.
Thirdly, we need to address the racial inequality and racism so present in our institutions and society. Black moms are three more times likely to die in a pregnancy-related manner. This holds true even for black moms who have advanced education and higher social standing. This is particularly atrocious because our overall maternal mortality rates are the lowest of any industrialized nation. We need to address this issue and figure out how to save our moms.
Are you working on any new or exciting projects now? How do you think this might help people?
We are working on spending more time on the education pillar of our mission. I think we learn best from each other’s stories and lessons, so with that in mind, we are looking for writers to contribute to our Friday Five series. In these guest posts, contributors share five things about a particular topic that falls under our mission, which includes pregnancy, infertility, NICU stay, loss, grief, maternal health, postpartum, infant health, kids, parenting, and more. If someone is interested in sharing their personal story and/or professional experience and knowledge, they can contact us through our website: www.colettelouise.com.
What you are doing is not easy. What inspires you to keep moving forward?
My kids, plain and simple. While my life was at risk, I am still here four plus years later and there is a reason for that. I want to ensure that Colette’s life meant something and that her memory and name live on and that inspires me every day. My son Elliott also inspires me because I want to try to improve outcomes so that hopefully his road to parenthood is easier than ours was.
What are your “5 things I wish someone told me when I first started” and why? Please share a story or example for each.
- Running your own nonprofit can be all-consuming if you let it. I wanted and still struggle with wanting to help everyone and do it all, but I also know that I am only one person and I have a child to raise, a partner who I love, friends and family who are fantastic supports, and I also have to take care of myself. So, I have to not let the work consume me entirely. At the beginning, I put a lot of pressure on myself to make this a success and a lot of the feelings of failure related to the grief and trauma I was still battling. For me, I felt so much guilt that Colette died and so if the nonprofit didn’t work, then I had failed Colette again. I had to learn that one did not have to do with the other. I also had to set up boundaries between my work and the rest of my life. It is something I still struggle with, but that I do spend a lot of time focusing on because it is so important to take care of yourself.
- When you are a giving person, when you want to help, a lot of different people will come at you and you have to keep your mission in mind. Get your mission down on paper and let that be your compass and your basis for making decisions. People will come at you with a lot of different needs and if you are an empath, if you feel for everyone, it is very easy to wear yourself thin. Ensure that whatever you are doing relates to your mission and let that be your guide.
- You can have a million ideas, but you cannot do all of them. You need someone in your life who you can run ideas past and who will support you, but also challenge you on the feasibility of it. This is where I am so grateful for my partner because I will think up these great ideas and plans and he is the one who hears them and says yes, that’s a great idea, but do you think it is worth the time or can you manage it. When I first started, I wanted to do it all and so every idea that came into my mind was one I wanted to do. All that did was cause me a lot of stress and lack of sleep. I had to realize that having the ideas was wonderful, but write them down and know that if you do not do it today, you can always revisit it down the road. Find someone who will push and challenge you to not overcommit yourself.
- You will work harder than you ever thought. I’ll be honest, part of the reason for starting this was thinking, well, if I am running my own organization, I will have flexibility in my schedule. And yes, I definitely do have flexibility and I love it, but I have never worked harder in my life. I thought I had, but when it is your thing, the amount of work never really ends and it takes a lot of energy and work.
- No is a complete sentence. There is a feeling for a lot of us who start a nonprofit, a business, a service that we have to say yes to everything and that if we say no, we have to have a long explanation as to why, but it is so important to realize that no is a complete sentence and does not need a disclaimer. It’s definitely something I still struggle with, but I do try to remember all the time.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I would love it if all of us who have experienced struggles along the road to parenthood or in parenting were to speak up and share their stories. In this work, it is often difficult to get people to realize that having a baby is not all sunshine and rainbows, that there can be a lot of stress, difficulty, loss, trauma, and grief along the way. If we started being open about these stories at every level, from the difficulty of getting pregnant to infertility treatment to pregnancy not being a wonderful experience to what loss is and means, we would start to remove stigmas and it would mean someone down the road going through this would not feel so alone or feel shame or guilt.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
I love the quote that I heard from This is Us: “You took the sourest lemon that life has to offer and turned it into something resembling lemonade.” Told to a father who had experienced a stillbirth by another father who previously experienced a stillbirth, it really hit me and stuck with me. I think that the sourest lemon life could give you is the loss of a child and my hope is that doing this work and helping these families in Colette’s name is some sort of lemonade.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Michelle Obama. There are so many people I can think of, but for me, Mrs. Obama is a woman who struggled with infertility and loss and all the emotions surrounding those tragedies. I remember reading her book and when she talks about feeling like she had failed, it felt like it was written just to me and I remember not feeling as alone in that moment. I would love to talk to her about our journeys, being moms, being professionals who give back, and so much more. Plus, I think she may have some great insight into how to affect change!
How can our readers further follow your work online?
They can find us at www.colettelouise.com, on Facebook, Instagram, Twitter, You Tube, as well as my monthly blog on parenting after loss at Pregnancy After Loss Support (PALS).
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How Michelle Valiukenas of The Colette Louise Tisdahl Foundation Is… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.