Parenting is hard. If you are parenting all of your living children or parenting after loss, it is hard. If you are parenting while struggling with your mental health (like me) or not, it is hard. Many people outside of this community see having a “rainbow baby” as some cure-all for the struggles we face after losing a child. This is so not true. In fact, parenting a rainbow baby can create new layers of anxiety and grief that only add to the struggles we face after losing our babies. I firmly believe that if we don’t talk about our mental health struggles, we will never break the stigma, so I want to share my parenting after loss journey and all the beauty and messiness that comes with it.
Our first baby died. Despite having a completely normal pregnancy, he died. Charlie was diagnosed with Trisomy 13, Patau Syndrome, and his inevitable death was catastrophic to our lives. Holding our cold, still baby changed our entire view of the world. Having a baby with such a rare disorder made us realize that bad things don’t just happen to other people – now, they happen to us, and we learned we are no longer excluded from the terrible things in life. Any sense of security (false or not) we had in the world was destroyed. I lost any feeling of control over my life.
Anxiety grabbed hold of me and hasn’t let go since.
Somehow, we held out hope that perhaps a new pregnancy could result in a healthy, living baby. What a welcome surprise to learn I was pregnant with not one but TWO new babies! But at 10 weeks, we found out Baby B had died. Vanishing Twin Syndrome. I was now a mom to two babies who had died, and yet I did everything right. Once again, life slapped me in the face and showed me I have no control.
The remainder of that pregnancy was riddled with debilitating anxiety. I had to lean hard on my closest support system, and I found a second therapist. I needed all the help I could get, and I was not in denial about that. I was so worried about something happening to the baby inside of me, and yet I knew I had no control. I knew that IF this baby were born healthy, it would not be some magic cure for this anxiety, but I didn’t realize just how much anxiety would come after he was born.
Benjamin was born six weeks early and spent time in the NICU. There was so much I could not control at that time, and I just hoped he would be okay. I realized through therapy that I use having as much control as I can as a way to cope with the anxiety, and to a point, there is nothing wrong with that, but for me, it became debilitating.
Let me be clear – I am beyond grateful for every single day I have with my rainbow, Benjamin. Being his mommy is magical, and I wouldn’t trade it for the world. I am so grateful that he came into my life, and he has healed me in more ways than I can count. That being said, he is a very difficult baby. I don’t like to admit that given the alternative that I know all too well, but he is so difficult. Many nights are extremely hard, and many days are, as well. He doesn’t sleep. He is fussy. He has colic. He has terrible reflux. He was premature, which comes with its own set of challenges. It is in these difficult moments that I gaslight myself into thinking that it could be worse, he could be dead too. When it is difficult, it really should be twice as difficult because I should be raising twins instead. Who am I to think these are bad days when I know the alternative? I say it time and time again, and I truly mean it when I say that I’d rather be up all night with a screaming infant than up all night in gut-wrenching sobs because my baby is dead. I have done both of those things, and the latter is always worse. But that doesn’t mean the former isn’t hard, as well. I am working on accepting that it’s okay to have bad days, and it doesn’t mean that you appreciate your living baby any less.
When I stopped nursing Benjamin and transitioned to exclusively pumping, I was unaware of the hormonal storm that was about to ensue. You hear about postpartum depression and anxiety, but it was only when it was happening to me that I learned about “post-weaning anxiety.” The constant influx of oxytocin that I received several times each day instantly went to zero. My body didn’t know how to react other than to triple down on my already present anxiety.
I was afraid for Ben, I was afraid for me, and I was afraid for my family.
I refused to take Ben in the car anywhere. I was afraid to leave the house by myself in fear that I would get in an accident and leave my baby motherless. I was afraid to drive in the same car as my husband and leave Ben an orphan if something happened to us both. I was afraid of dying because I didn’t want to miss out on seeing my living baby grow up. I was afraid everybody would get him sick and that they didn’t take as much care as I did about that. I was afraid every time my husband drove to and from work, carefully looking at his outfit in case I had to describe what he was wearing to the police. I was afraid to have my mom help me out by picking up groceries because if something happened to her, it would be my fault that I asked her to go.
I was afraid to take Ben into a store in case someone came in with a gun or tried to abduct him. I was afraid to take him anywhere in winter in case we froze to death in the car. I only felt safe at home with him, and even then, I didn’t want to play with him in the front rooms of my house in case a car drove through my home and killed him. I was afraid of SIDS. I was so afraid he would die in his sleep, and I would have to hold in my arms another cold, still baby. I developed OCD-like tendencies related to Ben’s sleep that helped me ensure this would not happen. Sticking to a rigid schedule for Ben became something I could control, and I became anxious to deviate in any way from this schedule. I controlled anything and everything I could. To a degree, this was fine, he was only a few months old and premature, and it was not unwarranted to take extra precautions. But I took it to a new level.
Some of the ugly anxious thoughts I shared above seemed logical to me, but sometimes I knew they were not.
The intrusive thoughts would make their way into my head, and it took every fiber of my being to eradicate them. One day, my brain decided that Ben was going to choke on a button from his shirt, and he went from frequently wearing adorable button-down shirts to never wearing one again. I cried myself to sleep over the thought of Benjamin sleeping in his own room and dying in a house fire, my husband and me unable to reach him. I frequently have this vision in my head of Benjamin not waking up from a nap. I go to get him up, but his body lies there still, and my worst fears become realized once again. The intrusive thoughts appear so quickly and seemingly out of nowhere, but they do not go away nearly as quickly. Having no control over what happened to Charlie and Baby B had caused me to create any sense of control I could over Benjamin. It was too much, and I knew it, but somehow could not manage to alleviate it.
When Ben gets a sniffle, my brain goes down the rabbit hole of having to cremate another child. We made it seven months before Benjamin actually got sick, one of my biggest fears, inevitable as it may be. You never know how your baby is going to react to an illness. Will he end up at the hospital needing help to breathe? Will he need to be rushed somewhere and torn away from me while he is being cared for? Will I ever see him again? I cherished every sick COVID snuggle as my baby desperately needed his mommy, also wondering if it would be our last. I stared at his breathing in his crib next to my bed for many nights, wondering how on earth I was ever going to move him to his own room.
It was just a couple of days later that I got sick, and my husband took over caring for Ben. I haven’t had more than a couple of hours away from Benjamin at a time, so it was very hard for me to relinquish control. I have had family offer me breaks, but they are not truly breaks. I constantly wonder if Ben is being cared for the exact way I want him to be, and I feel a huge lack of control. I feel my best when I am in close proximity to my baby, so a break away from him actually does the opposite for me. I do not ever want a break from parenting. I was forced into an eternal break from parenting my firstborn baby when Charlie died.
I can’t help but think that if I had not had to experience the death of two babies, my anxiety may not be quite as debilitating.
It is certainly possible and likely I would still have anxiety to some degree, but I absolutely know that it has been influenced greatly by my experience. I know what it feels like to hold my precious baby for the last time. I know far too much about this other side of parenting, and it has led me to constantly worry about losing Benjamin, too. I do my absolute best to curb the anxiety through counseling, and I always put in the hard work outside of therapy. It isn’t so black and white, though, and it is not a quick process. More than anything, it needs to be talked about.
Parenting after loss is many things. To me, it is magical, healing, and also debilitating. Before you judge a bereaved parent’s choices and decisions regarding their living children, I beg you to consider for just a moment all these parents have been through and what could be guiding those decisions. You never know what a person is battling, and a little empathy goes a long way. If you are experiencing anxiety while parenting after loss, please know that you are not alone. Please also know, however, that you don’t have to do it by yourself. Seek help from your support system, a therapist, or both. It is a lifelong journey, but it is not one that we have to go through alone.
- A Rainbow in the Sunrise: A Pregnancy After Loss Story
- Postpartum Anxiety and Depression: What You Need to Know
- What’s “Normal” (Anxiety) Anyway during Pregnancy After Loss?
- Postpartum Recovery and Parenting After Loss: What You Need to Know
- What you need to know about perinatal and postpartum mental health disorders
- The Case for Seeing a Therapist During Pregnancy after Loss
Thank you for sharing your story Briana. It is a great tool for teaching us all not to judge what a parent might be going through and that a show of understanding can go a long way. I admire your being so brave to share your experience and truly respect you. You are a great mom to ALL your children.