Free A Life Everlasting by Sarah Gray Page B

them all.”
    â€œHe hasn’t been eating very much,” she said.
    â€œWe have been trying, but he doesn’t want to eat,” I said. “He spits it out.”
    â€œOkay, just checking,” she said.
    There was one thing that Thomas seemed to like eating, and that was the sugar water we gave him after a seizure. My brother Ethan and I took turns putting some on his mouth and then watching him smack his lips. He sucked his top lip to get every last taste. We started asking visitors, “Have you seen him eat sugar water yet? Watch this!”
    We learned that Callum was fine, just suffering from what is informally known as “Wimpy White Boy Syndrome.” Male Caucasian babies are thought to take somewhat longer to develop than babies of other races, so when they’re born prematurely, they tend to be weaker.
    On Friday, two notable things happened. The first was that Callum was released from the NICU. The second was that I had to make one of the strangest phone calls of my life—to the funeral home.
    â€œWe have a funeral tentatively planned for Monday, but something unexpected has happened. Thomas was born alive, and he’s still going strong. So we are going to need to postpone. Is it okay if I call you later?”
    There was a pause. Then, “Yes, of course.”
    I had to postpone a funeral because the guest of honor was still alive.
    Before we could take Callum home, Ross had to take him to the “Car Seat Challenge” in the hospital. This is a test where they put a baby in the car seat in a simulated ride to make sure the baby will be okay riding in the vehicle, and Callum aced it.
    The minimum weight for a baby to ride in a car seat is five pounds. Thomas had lost weight since birth, down to three pounds, four ounces, so he didn’t meet the criteria. The hospital gave us a special contraption, called a car bed, that is made for just this occasion. It is essentially a white plastic box that gets strapped into the backseat.
    We were also asked if we wanted hospice care. It seems naive now, but I didn’t fully understand what the term hospice care meant. I thought it was just a visiting nurse. It wasn’t until later that I understood that hospice care is recommended by a doctor only when the doctor thinks the patient has less than six months to live and the patient has decided to die at home as comfortably as possible.
    That Friday night, the four of us slept in my room in the hospital—our first night as a complete family in one place.
    But we didn’t get much sleep. I was nervous at the prospect of leaving the hospital and the round-the-clock access to experienced medical professionals who were available literally at the push of a button. I was not sure what we would do with Thomas once we got him home. We hadn’t planned for this.
    But sure enough, on Saturday, March 27, 2010, we took the twins home from the hospital to our condo in Washington, DC. When we arrived, one of the hospice nurses was already at our door, buzzing to be let in.
    The house quickly became chaotic with people visiting andthe door constantly buzzing with deliveries of flowers. I was grateful that our families were playing with Callum while Ross and I looked after Thomas.
    Thomas grew increasingly listless. When I changed his diaper, he flopped like a ragdoll. The nurse prescribed morphine and antiseizure medicine for him. Because he was so small, we gave him the medicine in doses of a fraction of a milliliter.
    When he hadn’t eaten anything in an entire day, I panicked and mixed up some homemade sugar water, but he wasn’t interested. I tried to give him breast milk with an eyedropper, but he didn’t want that, either. I thought if he only ate more, he’d perk up. “C’mon, little guy,” I kept saying.
    I didn’t understand that his loss of appetite was likely a sign that he had started dying. I wish I had figured that out instead of