By Michelle Valiukenas
A few months back, I was on a friend’s podcast talking about my story and my work. She asked me a question that I had not been asked before: Define what a loss mom is. It took me a second or two, but I explained that it uses the word mom, which is what I am and what I have been throughout this journey, and it also uses loss which means it encompasses all the losses that have been involved.
The “loss” portion of the term I choose to use includes of course my two most serious losses: Sweet Pea (lost at 7 weeks pregnant in 2017) and Colette (lost at 9 days old in 2018), but it goes beyond that to include the loss of conceiving naturally, the loss of control over when we would get pregnant, the loss of milestones of where I thought we would be, the loss of pictures in my mind, the loss of what I thought pregnancy and childbirth would look like, and so on and so on.
Since the time I got asked this question, I have tried to be more diligent in explaining it instead of just assuming that everyone around me understands the term and why I choose to use it. But, what has kept standing out to me is that my explanation does not really encompass all that it means to be a loss mom. Then, recently, when a good friend went through yet another loss, I sat down to really think about what these experiences mean going forward in an attempt to truly answer and truly give insight into the question: What does being a loss mom mean?
There are a lot of things it means and for most aspects, it also means a lot of layered, often conflicting emotions.
It means that I am always grieving. Having another child, although amazing and wonderful, did not take away the grief. Time does not heal, contrary to the popular saying. I am always missing my babies and the picture of what I thought raising kids would look like, a picture that I was forced to redraw multiple times.
It means that when people post or share news of pregnancies, I am angry that it happens for them, but not for me, and yet I also have a feeling of panic and hope that they never have to go through any loss.
It means that at any given time, I have a handful (or more) of fellow loss parents who are currently pregnant or expecting and I have them in my heart and on my mind for however long their pregnancy lasts. It also means that I have met so many loss parents in my journey of support so all those scary loss stories, I’ve heard them too, and have to not live in constant fear of them happening to me or someone else.
It means that when a friend has a loss, my heart breaks for them because I know all too well what it feels like and that I want to throw up my hands and give up and I want to scream and rant and rave at the universe, while also wanting to wrap my arms around my friend and take away their pain.
It means that I feel guilty A LOT. Yes, mom guilt for all moms is real and it is big, but when you have lost a child, the guilt is even worse. I worry about my son growing up spoiled because he will not have his big sister at home to knock him down a peg or two. I worry that my son will one day be mad at me that we didn’t have more kids. I worry as to whether keeping Colette alive as his big sister and talking about her is the right thing or if I should do it differently. And all of this makes me feel so guilty because although I know this is not the case logically, it feels like it was my body at fault, my body that failed.
It means that simple sniffles or colds feel overwhelming to me. If LL Cool T coughs, my mind instantly goes to it is Covid and he is not going to survive. And while I am sure most parents are guilty of making these leaps, only loss parents truly know what that means and what that feels like. It means that in the midst of a global pandemic, I was terrified to leave the house, terrified to take him out, suspicious of everyone we passed on the few times we did go out, because instead of fellow shoppers or patients, I see them as the causes for my child’s death.
And yet at the same time, it has opened me up to be a more laidback parent, to say make the mess, have fun, and as long as you are here and alive, we are good. LL Cool T gets into dirt, he plays with his food, he takes jumps and dives that I would never dream of doing, and yet, he does it with encouragement of his mom. This is because I realized after everything we went through that following all the rules all the time does not necessarily equate to successful outcomes. Plus, I learned that enjoying the moments for as long as we have them is really the most important thing.
There are so many complexities and levels to being a loss mom, but the one that I think summarizes it best is that being a loss mom is forever being permanently exhausted. Grief is exhausting, holding onto hope and worry for others is exhausting, battling your inner demons that say things like it is your fault is exhausting. So, I will rest when I can, try to turn off my mind that is always going, and focus on the here and now.
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.