When Ben was in the NICU, I would wake up in the morning and for a moment everything was fine. For a brief second as I woke, I would forget. Then suddenly, my world would come crashing down, and I would remember where I was, and where he was. Reality would set in.
We were in the NICU for sixteen days, but that brief hospital stay changed our lives forever. It changed me. When we arrived home, we worked to develop a new routine. We juggled early intervention therapies, parenting a newborn & a toddler, and working full-time. In the early days I was so busy I didn’t have time for the anxiety that was developing.
Several months after Ben came home, I realized I was not okay. I would relive the moments that landed us in the NICU. I had flashbacks every time I saw an ambulance, and every time we had to go back to Children’s I would be full of anxiety. I couldn’t sleep. I lived in constant fear of losing my son.
The most mundane parenting tasks had me on edge. As Ben grew and began to develop and move, my fears grew more intense. I experienced anxiety when we ventured outside and had to go home immediately. I had such an intense fear – I had almost lost him once, and I had to protect him from it happening again.
When I was finally diagnosed with PTSD, it was a relief. I was able to understand what was happening to me, and how the complexities of the trauma were impacting me. Through therapy, medication, exercise and time, I have been able to get to a place that I can breathe again. I have also learned how to let Ben live.
Enter coronavirus.
My family and I are safe. We are healthy. Our days have a new normal (and a LOT of quality time together), but we are okay. I’m filled with feelings that have subsided for so long. Neither of my boys are high-risk for COVID-19, but I’m filled with a fierce need to protect them and keep them safe. The feelings of fear and anxiety are back. I’m having flashbacks that I haven’t experienced in a while. All the old feelings I thought I’d reconciled are clawing at the surface of my brain and heart.
But why? I understand that it’s my PTSD rearing its ugly head (which puts me way ahead of the game compared to the last go-round). I haven’t figured out why now.
LISTEN NEXT: NICU PTSD IN THE TIME OF CORONAVIRUS ON BEYOND THE NICU
On my quest to understand and to try to find some relief, I reached out to my therapist, Molly Marr. She helped me to understand that our time in the NICU and the coronavirus aren’t connected on the surface. But they connected in ways that I’m not always aware of.
She told me that, “the part of your brain that recognizes danger and moves you into fight or flight when needed is not at all connected into the logical realities of 2020. Your brain is reacting to threat cues. There are threat cues that you are experiencing each day during this current crisis. Seeing empty shelves at the grocery stores, financial strains, thinking how will I keep my job and care for my children – those are threat cues, and with PTSD, those threat cues are being interpreted as ‘I am not safe,’ or ‘I am in danger.’”
It makes sense. The whole time we were in the NICU I felt an impending sense of danger and fear. At first each day seemed to bring us more bad news, and I lived with a fear that Ben’s tiny body couldn’t handle it. While there wasn’t that same sense of danger when we discharged, my brain and body held on to that and to the fear.
In the time of coronavirus, I’m trying to use all that I’ve learned to keep the anxiety at bay. I look at my sweet Ben, now three years out of the NICU, and I work to see all that he is, all that we have. When the anxiety creeps in, I take a deep breath. I give Ben a big hug and myself a little grace and remember how far we have come from those days. This is just another stop in our journey.
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I, too, have PTSD as a result of NICU stay. My twins were born at 32 weeks as I went into medical distress and nearly lost my life. My little boy stayed in NICU for 2 weeks, while I was also hospitalized for that time. But my daughter lived in NICU for 5 months. She had 9 surgeries to connect her esophagus (which had been connected to her lungs). She had a G-tube for 7 months. As a single mom, I went from one baby at home to the other baby in the hospital. While driving in between, I felt this incredible pressure and sense of urgency. Being with one baby, to me, meant I was neglected the other. The first psychiatrist I saw, (a male) recommended I return to work to “relax and get into a typical routine”. I found another therapist who diagnosed PTSD and tried to help me calm my panic attacks.
My daughter is in the high-risk group with chronic lung disease. For the first 4 years of her life, the twins were sequestered from October through April to protect the health of my daughter. Thankfully, their grandmother stayed with them while I had to return to work. But anytime I encountered a sick child (I worked in a school) or person, I went into a state of panic. The sad part is that no one understood….which unfortunately made the symptoms of PTSD more severe.
Fast forward 13 years. Yes….the twins are teens. PTSD is like a virus, it fluctuates and erupts throughout the years. Sounds, smells, even the lighting in certain rooms brings back a period of intense fear and panic. Dreams of being in a hospital looking for my baby have lessened, but still exist.
Despite the lung disease, my daughter is healthy. Both twins are in the gifted and talented society and do well with school. They are great kids. My son loves music and is a compassionate being. My daughter is an old soul, born an artist with a love for animals and nature. I am very blessed
Enter Covid-19
I pulled the twins out of school a week before the mandate. There are some fears I fight, some I need to believe. This is a danger. It feels weird but familiar. The biggest difference is that now other people are sharing in my world of fear and panic. And strangely enough, that is oddly comforting. It’s sad that many people do not have the compassion to support the journies of others. No matter how long your baby was in NICU, it is a world that is different than this world…..and it changes you forever. People ask me whether I consider myself a single mom or mom of twins…..I am both of those….but mostly, I am a NICU mom.