“I could be the only one in a contest and still not win,” I told myself as I wiped a salty tear off of my newborn’s face and placed him back in his isolette. It was the second time in two years that I hadn’t been able to go home with a baby. The second time my first memories of my precious newborn were through an enclosed glass casing. I did everything right, I went to all my appointments, I took all my vitamins, but somehow, I still ended up here, in the NICU—again.
Sitting in a rocker staring at my 6-pound baby I had a flashback to 16 months ago when I was in a similar predicament with my firstborn. “We can’t see his heart and we are sending you to Maternal Fetal Medicine,” the ultrasound technician told me at my anatomy scan. Those daunting words led me to endure weekly appointments and monitoring for my son who ended up with a lesion on his lungs.
There was a chance he would be born not breathing, needing intensive care and possibly breathing and feeding tubes. There was also a chance he would not survive. He would eventually need major lung surgery within his first year of life or potentially have constant infections and eventually lung cancer. I wouldn’t know, though, and just had to wait. There was a 1 in 35,000 chance of this happening and according to the doctors, virtually no chance of reoccurrence. If only I got that lucky with winning the lottery, I thought to myself as I lay down for my 12th ultrasound in five months.
My first son’s condition led to developmental delays and his participation in a medical daycare. The same medical daycare told me it was virtually impossible to have siblings who both needed this type of care unless they were twins. Of course, my kids ended up being the only siblings who attended that daycare who were not twins.
This pregnancy was different from the beginning. There wasn’t as much excitement or as many baby presents. Time went by faster, and I was a lot more exhausted from chasing around my toddler. I held my breath during this anatomy scan, not wanting to have to go through another diagnosis or a million appointments again. To my surprise, everything was perfectly fine. I was able to breathe, knowing I was carrying a healthy baby.
I woke up about a week before my due date with terrible contractions. I could barely walk or talk, and they took my breath away. It was about a week before my scheduled C-section and the hospital said my blood pressure was high, so I had to have the surgery sooner. The next day I went under the knife and gave birth to what I thought would be a healthy baby boy.
“He has been having seizures all day,” said the neonatologist. This news scared me but what happened next was even worse. My son went in for an MRI which revealed that he had a pretty large MCA right hemisphere stroke.
Another one of my babies was one of the lucky ones. A one in 2,800 chance of this happening, and of course, it happened to my baby. No one could figure out why. No blood clotting disorders, no issues with the placenta—just pure luck of the draw.
Tons of information swarmed my brain during a 16-day NICU stay. The doctors stressed the importance of early intervention but told me they had no idea how much or if the stroke would impact him. We wouldn’t know for years. I held my baby tightly. I couldn’t believe this had happened again. Four months ago I watched my first son get cut open and a portion of his lungs cut out. Now, my child who was supposed to be healthy suffered brain damage.
I pleaded with God and asked him why this kept happening to me. I have never felt good at anything except working with children. I have always wanted to be a mom. I have worked with kids from the earliest I could work and always knew I would have my own someday. I have witnessed time and time again people who smoked and drank during their pregnancies and their kids were born healthy. I did not understand why God did this to me . . . twice.
I pleaded and cried so many nights and days. I was uncertain and worried with every missed or delayed milestone. I was jealous when my friend’s kids were seemingly neurotypical and mine were delayed. Now I know God was showing me how strong I could be. I was never good at anything, but I realized my talent was strength. Strength to hold on, strength to be an advocate and a cheerleader for my kids, and strength to see how beautiful difference can be.
I was given these children to be their cheerleader and celebrate milestones that may be small for some kids but are huge for my kids. I was given my boys to show them how beautiful their differences are and teach them how to embrace them.
To show others how to include and accept those who think and act differently from them. To advocate for my kids and show them they can do anything they want to do.
I was given these boys to show them resilience, to show them they can accomplish great things and overcome their challenges, even if it is difficult sometimes.
I was lucky. I am lucky. Lucky to be able to show them their beauty and to be their cheerleader every step of the way.