Sometimes people accidentally call my 4-year-old, Matthew, by his older brother Thomas' name.
They're usually horrified. Thomas died of SIDS, or Sudden Infant Death Syndrome, as a newborn. Matthew never met him.
But I love it. It’s something that would happen if Thomas were alive, and I don’t want anyone to forget him.
This is my story.
In 2017, after my husband Jay and I had fertility treatments, I became pregnant with our second child. The pregnancy was rough. Thomas, however, was born a perfect, chunky and happy baby on November 18, two weeks early. He was monitored in the NICU, where he thrived, looking enormous compared to the other infants.
Thomas was strong from the start, with solid head control, a firm grip. and a robust appetite. He had blue eyes, just like his 2-year-old sister Adele. Thomas was a curious baby who didn’t want to miss out on anything. When you talked, he looked right at you. There was just something about him.
One day, when Thomas was 2-and-a-half months old, my husband Jay and I made plans with friends. It would be my first night socializing in approximately one year. My father, who lived 15 minutes away from our Boston-area home, babysat for us.
It was a routine night — the kids were awake when we left the house, and my father and Adele watched a movie while Thomas slept.
When Jay and I came home a few hours later, Thomas had woken up hungry. I went to feed him,but Jay insisted that I rest. In hindsight, knowing I missed Thomas' last feed and diaper change hurts.
Four hours later, I woke up to Jay screaming, "Thomas isn't breathing!"
Jay had fallen asleep in our living room recliner with Thomas in his arms. When he sat up to carry Thomas to his crib, his body was limp.
I jumped out of bed and called 911, while Jay lay Thomas on the floor and began CPR. It felt like an eternity until emergency responders arrived, although it could have been minutes.
Two young-looking police officers showed up, followed by an ambulance. Paramedics immediately carried Thomas outside and intubated him, trying to revive him while Jay and I looked on, helpless.
I understood the term "out-of-body experience," as I watched the situation unfold as if I were a ghost, standing behind my physical body.
Realizing that my daughter Adele was still sleeping inside the home, I went inside but a police officer said I could not walk around or touch anything inside my house.
"This is a crime scene," she said, coldly. "Your dog can't go anywhere either."
My dog Bernie, a 280-pound English mastiff, followed me everywhere. He didn't have an aggressive bone in his body but that night, he knocked over a baby gate to stay by my side.
"Don't touch, this is a crime scene," she reminded me when I nearly walked over a stain on the rug where Thomas had regurgitated milk as Jay tried to resuscitate him.
"We didn't kill our son!" I yelled. "I just need some empathy and patience right now." I wish the officers would have realized how their insensitivity added to an already unimaginable situation. When I think back to that horrible night, I relive every moment of our interaction.
We didn't know that Thomas was already dead when Jay woke up in the recliner; doctors called time of death on February 4, 2018 while I was sitting in Adele's bedroom, waiting for my dad.
I rode in a police car to the hospital, speeding along on a windy road, gripping the grab handle above the passenger door.
"God, if Thomas has been out of breath this long, I need you to take him so he won't suffer," I prayed silently to myself.
The emergency room was empty except for our ambulance driver, who stood with a defeated look on his face. A doctor and Jay approached.
"We tried everything," the doctor told me. "Thomas passed."
I broke down in tears, asking the doctor, "Where is he?"
I was led to a private room enclosed by a curtain. When I pulled it aside, Thomas lay in the center of a hospital bed, looking so cute. The hospital staff was compassionate, allowing us to photograph Thomas' hands and footprints. We invited family members to hold him as they said goodbye.
We made the decision to donate Thomas' organs, a process that shortened our remaining time together. We were given only 30 minutes to say goodbye. Although it felt like the right thing to do, I couldn't comprehend someone needing Thomas' tiny heart valves.
I felt safe leaving Thomas with a nurse, who was the daughter of my high school math teacher and a friend of my sister, although I returned to his room three times for one last kiss and snuggle.
The following days were a blur of family, friends, detectives and representatives of the Department of Children and Families. My siblings and my sister-in-law graciously made Thomas' funeral arrangements as Jay and I struggled to handle the details. Thomas was cremated wearing baby blue pants and a onesie that read "Dad's No. 1 apprentice," along with his favorite blanket.
Explaining to Adele that Thomas died was rough. We told her that Thomas stopped breathing in his sleep, and that he didn't feel pain. We said that Thomas would watch Adele grow up from heaven. To this day, Adele worries about death more than a child should.
SIDS is the leading cause of death for infants between the ages of 1 month and one year, according to the American Academy of Pediatrics (AAP). The Safe to Sleep campaign, created in 1994, helped reduce the rate of SIDS by introducing the ideas of laying babies on their backs and on firm, flat surfaces without soft bedding.
The Mayo Clinic notes that SIDS can happen to any baby, with males slightly more at risk than females.
Our 4-year-old son, Matthew, was born with my sister as a gestational carrier. Matthew knows his brother through stories and photos. We often hold a framed photo of Thomas in family portraits, celebrate his birthday with songs and confetti poppers, and give the kids Christmas gifts we believe Thomas would have picked out.
In 2018, right before Thomas' first birthday, I realized how sad it was that no one else would ever know him. So we started a Facebook campaign in his memory, leaving little bags around town containing his photo, a teddy bear and a note encouraging acts of kindness. From what we've learned, the notes have made their way around places like Florida, Alabama and Nevada, along with Aruba, Italy, Ireland and Canada.
Thomas would have turned 6 next month.
As time goes on, I worry that people think I "should" move on, but Thomas is forever with me now.
Sometimes I feel Thomas around me — once, I was sitting on top of our staircase consumed in grief and a balloon someone had brought over for Thomas' first birthday slowly drifted up the stairs and stopped in front of my face, before floating back downstairs.
On many occasions, Jay and I have prayed for Thomas by an angel-shaped lamp and the light flickered on and off. A spiritual medium once told my brother-in-law Will that Thomas communicates to him through funny license plates. Will often sends us photos of license plates with Thomas' initials or funny phrases. "Thomas, I see you," he says.
Losing a child is an unimaginable event. A bit of patience and empathy from law enforcement would have helped my healing journey. I wish they had understood my trauma.
Eight months after Thomas died, I wrote a Facebook post during SIDS Awareness Month in October:
"I hope there comes a time sooner rather than later that ... we never need to hear about another innocent, healthy and happy baby dying. I’m sick of seeing all these parents blame themselves because they followed all the rules. So for the ones whose angels died in a crib on their back in the safest environment, you did nothing wrong and it’s not your fault. For the parents whose angels died while sleeping on your chest, just know that they didn’t go alone and it’s not your fault. And for the ones whose angels died during the day in their arms, I hope you have comfort in knowing they too didn’t go alone and no matter what you did to try and revive them, it wasn’t your fault. You did everything you could."