A Life Everlasting (7 page)

With each passing day, it became a possibility that we might actually take Thomas home. Having expected Thomas to die within minutes of his being born, we were amazed that, four days later, he was still with us. I started to think,
What if he lives for a month? Or three months? Is he going to be the one who beats the odds?

Do we need to secure day care?

Looking back, I remember something that didn't concern me at the time but now realize was a sign of what was to come. Ross and I had been asked to write down every time Thomas breastfed or drank from a bottle. Because I was recuperating from the C-section and couldn't really get out of bed, Ross took primary responsibility for feeding, changing, and looking after Thomas, so
he also took on the job of recording secretary. If Thomas drank from a bottle, Ross would make a note of how many milliliters he drank. The largest feeding he ever recorded for Thomas was seventeen milliliters, which is about three and a half teaspoons. Normal newborn feedings are recorded in ounces, a unit of measurement that is thirty times the size of a milliliter.

On day four, a nurse came in to check Thomas's meal chart.

“Did you guys forget to write down some of his feedings?”

Ross looked up. “No, we got them all.”

“He hasn't been eating very much,” she said.

“We have been trying, but he doesn't want to eat,” I said. “He spits it out.”

“Okay, 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.

“We 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 and
the 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 frantically trying to feed him. I thought there was something I could do to help him, but probably there was not.

It was just his time.

On Sunday night, he began wheezing at around 11
P.M
. I called the hospice company, who connected me to the nurse on call, Cindi Carney. I felt guilty, because she said she lived in McLean, Virginia, which is about ten miles away from where we lived, and I didn't want to bother her so late at night.

“It's perfectly okay, Sarah. That's why I'm here,” she said.

I told her about Thomas's labored breathing. “What should I do?”

“That sounds like end-of-life breathing.”

I didn't know there was such a thing.

“I'm on my way,” she said.

“I'm sorry it's so late . . .”

Cindi arrived with a laptop and a stethoscope. She listened to his breathing and his heartbeat and confirmed that the end was near.

Ross and I called our families, and people started arriving around midnight: my mom; my dad; Ethan; Mark, his wife, Jennifer, and their nine-month-old son, Matthew; Ross's mom, Pauline, and dad, Eddie; and Julia and Garry, Ross's sister and her husband, all in from Scotland—all came in the torrential rain. I called Becky Hill so she could alert the WRTC team that something might be happening soon.

Ross and I held Thomas on our bed, and Cindi monitored Thomas's heartbeat. Thomas would stop breathing for a minute, and then take a giant breath in. He was barely moving. Everybody was crammed into our bedroom.

Months earlier, Ross had said that he would not be able to hold a baby while it died. But over the months that followed, Ross had changed. He was quick to stand up for Thomas. It was Ross who wanted to make sure we gave him a name, a proper funeral, and a tombstone for Callum to visit. Ross memorized and recorded how many milliliters of milk Thomas drank. Ross enjoyed sleeping with Thomas in the crook of his arm, feeding him, and changing his diaper. Ross claimed that since Thomas didn't cry as much as Callum, Thomas must be the smarter and more sensible twin.

Thomas was Ross's pal.

At the moment of Thomas's death, we heard a cry from Callum's crib.

“He knows,” said Pauline.

I looked at Cindi. “His heart stopped?”

“Yes.” She pulled the stethoscope out of her ears and let it rest on her shoulders. She looked at her watch and wrote down the time. It was 1:45
A.M
. on Monday, March 29, 2010.

Thomas was resting in Ross's arms when he took his last breath. He was our firstborn, and he made Ross become a father in more ways than one.

W
e passed Thomas's body around the circle surrounding our bed so each of us could hold him one last time and say good-bye.

“We are hoping to donate organs through WRTC,” I told Cindi.

“Do you want me to call them?” she asked.

“Sure,” I said. “Let me give you the phone number.”

“I have it,” she said.

After each of us had our moment with Thomas, the family left Ross and me to have a private moment with him in our room.

Eventually, we moved to the living room and placed Thomas in the car bed. Cindi told us that the WRTC van was lost and had accidentally gone to a different street with the same name. A few minutes later, though, our door buzzed and we opened it for a tall man in his late twenties.

It was the moment we would say good-bye, at least until the funeral a few days later. My family is not particularly
religious, but it seemed like a moment for a prayer, or something. I was emotionally drained, though. I felt like I was in a trance. I couldn't make a decision or think of anything on the spot.

“Everyone put a hand on him,” my mom said. The van driver waited patiently with Cindi at the dining table as the family gathered around the car bed. My mom quietly said prayers she had repeated for years as a child in parochial school—the Our Father and the Hail Mary, followed by one I had never heard, the Angel of God:

Angel of God,

my guardian dear,

to whom God's love commits me here,

ever this day,

be at my side

to light and guard,

to rule and guide.

With tears in my eyes, I looked to the van driver. “He's ready,” I said.

“Would you like me to carry him, or would a family member prefer to do it?” he asked gently. It felt like a heavy burden to have to make that decision.

I wasn't supposed to walk downstairs because of my C-section, but I hoped someone else would step in. I looked at Ross, and he shook his head no.

“You can take him,” I said to the driver.

My brother Mark jumped in: “No, I'll do it.”

I was so grateful.

Outside, it was pitch-dark and the rain was still coming down in sheets. Ross and I stood side by side at the window
and watched as Mark carried Thomas's body down the hill from our building. He placed the car bed in the back of the van and stepped away. The man shut the doors and drove off.

We watched as Mark walked back up the hill in the rain.

Thomas had spent every minute he was alive with people who cared about him: his parents, his brother, our families, our doctors and nurses, chaplain Philip Brooks. This part of his life was now over. He was going out by himself now.

We knew that Thomas would be transported to Children's National Medical Center on Michigan Avenue NW, in DC, which is less than two miles from our home. In another unusual twist to the preparations, WRTC had made arrangements with Inova Fairfax to do the organ recovery, assuming that Thomas would die there. They subsequently had to scramble to make arrangements with Children's National as opposed to Inova Fairfax, which even at only eighteen miles away would have been too far to send him. (I learned later that this was an unusual and professionally brave request of them to make since Thomas had not been a patient at Children's.)

We didn't know specifically which organs or tissues might be recovered, although we knew there was a chance for the liver to go to Cytonet if it met the requirements. In my dreamworld, I wanted WRTC to tell me that every single part of my son's body was incredibly valuable and interesting, and that the field of science was about to take a giant leap forward because of him. The happiness and amazement I felt when I touched his little fingers, his chin, and his toes . . . well, I wanted researchers to feel the same thing when they saw his pancreas, his kidneys, his heart valves, and his ocular cells.

Mark came back in, and we all hugged one another and cried. I was exhausted down to my bones. Everyone else seemed to be drained as well. They left Ross and me to get some sleep.

Around 10
A. M
., after a brief, exhausted sleep, the phone rang. It was Becky Hill.

“I'm calling to tell you the recovery was a success.”

“What does that mean? He got there in time?”

“Yes.”

“What did they recover?” I asked.

“His eyes and his liver.”

“That's it?”

I was disappointed they didn't need more, but two things were better than one or none.

“We tried to find more placements, but those were the only two we could arrange. His liver is going to Cytonet, and his eyes will go to research.”

“Where will they go? Do you know?”

“Not right now, but you will be getting a letter. For now, he's on his way to the funeral home.”

Again, the news about the donation made me feel like a champion. The planning, the blood draws, the paperwork, the interviews—it had all paid off. In the midst of the pain, I felt accomplishment, even a lightness. Later that day I got an email from Heidi Cope at Duke saying the blood had arrived in good condition. Yes! I had done what I had set out to do in making these donations happen, but it was still too early to know if it was worth it. It was encouraging, yes, but also somewhat anticlimactic because there was still no sense of what the donations might do in the long run.

That same day, I got a call from Cyndi Barnett, a woman in Missouri City, Texas, who was pregnant with fraternal twins, one with anencephaly. When I was in the hospital, Heidi Cope had asked if she could share my contact information with Cyndi so I could offer her some support or advice.

Now, less than twelve hours after my son had died, I was
being asked to help someone else. It was wonderful to be in such a position. Instead of pitying myself, I was being given the opportunity to be grateful for what I did have. My pregnancy was over; I had a healthy child. Although I was heartbroken that my other child had just died, I could finally stop worrying about and preparing for his death. Cyndi's nightmare was just beginning. I was grateful that someone could benefit from what I had just gone through, and so soon. Cyndi's call helped change my perspective that day, and it gave me a little room to think of my situation in a different light.

Thomas's funeral was held on Wednesday, March 31, 2010.

Ross and I had been dreading this day for seven months, but when I woke up that the morning, I felt okay. I knew what to expect. Compared with how I'd felt the past six months, the funeral didn't seem nearly as difficult as I'd anticipated. And yet, nothing could ameliorate the reality of what we were about to do.

I put on my new black dress, the one I had struggled to find back in December.

Ross and I brought Callum to Fairfax Memorial Funeral Home early so we could spend some private time with Thomas—our last moments together as a family of four. We arrived to find flower deliveries along with some thoughtful gifts. Cytonet had sent two fluffy teddy bears with blue ribbons. WRTC had sent a letter explaining that on that very day, March 31, Inova Fairfax Hospital was raising the “Donate Life” flag on their flagpole in honor of Thomas's donation, and they had enclosed a picture of it. WRTC had also sent “Donate Life” lapel pins and green rubber bracelets, and I fastened a pin to my dress and one to Callum's car seat.

Though we had picked the coffin out in advance, and we knew how small Thomas was, its diminutive size still took me by surprise.

In the viewing room, the open nineteen-inch casket took my breath away for a moment: it seemed so small in that big room. Thomas was dressed in the dinosaur fleece pajamas we had gotten for him and Callum, and he was wrapped in one of the matching blankets that my Aunt Jane and cousin Kate had made for the boys. The blankets were leopard print with blue trim, to match the fleece Snuggie that Ross had given me as a joke present for our anniversary.

Around his neck, Thomas was wearing two gold Mizpah necklaces, each a broken half of a coin with the inscription: “The Lord watch between me and thee while we are absent one from another.” I had gotten two of them so Callum could keep the other half of one and Ross and I would keep the other half of the other.

He also had with him a small Bible from his grandparents Gray; a palm frond and coin from my dad; a DVD of photos from Uncle Mark (all technology is compatible in the afterlife); a letter from Grandma Gray; a letter from Uncle Garry and Aunt Julia telling him they had named a star after him; socks given to him by nurse Brandy; a letter and prayer from my mom; and a stuffed sheep from Aunt Julia (Callum had a matching one).

And his most favorite thing of all: a little container of the sugar water that he loved to drink.

Thomas Ethan Gray looked so beautiful and perfect that it was hard to believe the recovery had taken place. (I looked for signs of the surgery but saw none.) I wanted to take a picture of him, but Ross didn't want me to. After a few minutes, the rest of the family arrived and joined us to pay their respects.

The funeral director, Adam, arrived and gave us his condolences. I thanked him for making Thomas look so beautiful. He asked if we wanted the pajamas he was wearing when he arrived (yes) and the car bed (no).

Adam escorted us out and placed Thomas in the back of the sedan for the drive to the Garden of Angels, a section of the Fairfax Cemetery just for babies. Thomas's spot was to be next to a tree that babies' families had decorated with wind chimes.

Phil Brooks had agreed to lead the service. When I'd asked him, he'd said, “It would be an honor. I haven't been asked to do a service in six years.”

But what do you say about a six-day-old infant? We barely knew him and he was gone. Ethan provided the following notes to Phil, which he used to prepare his remarks:

Loved sugar water. Everyone enjoyed watching him lick and smack his lips.

Everyone who met him, family, friends, and the nurses all thought he was very friendly and loved him right away.

Although he was very small, he was strong. When he was only days old he would grab your finger with such amazing strength to come out of a baby of that size. He also beat the odds. He was only expected to live a few hours. He lived for 6 days, which gave all of the family time to let him know how much we loved him and cherish him. He wasn't supposed to be able to swallow, drink from a bottle or hear, but he could. He could also hold his head up and he would crawl up his mom's chest to her neck to chew on her hair. He had a 10% chance of coming home but he beat those odds and made it home. It is as if no one told him that he had anencephaly. He was very alert, strong, began breastfeeding before his brother, and very willing to make it known that he wanted more sugar water.

Sarah and Ross both were able to sleep with him not only in the hospital but at home as well.

He is now an angel looking over and protecting his twin brother, Callum.

He loved both his parents, especially Ross. Except once he peed in Ross's armpit during a diaper change. Ross didn't realize it at first and just thought he was sweating.

In his short life, he was photographed by Uncle Mark relentlessly. There are over 1,500 photos of Thomas.

In his short life, he made a difference in the lives of others. He was able to help the Duke University Anencephaly study. Duke is researching anencephaly and Thomas and Callum (and Sarah and Ross) both donated blood to further the study. Also Thomas donated liver cells and his eyes to the Washington Regional Transplant Community. The liver cells will be used by other babies who need a liver transplant and are waiting for a donor. So Thomas will continue to live on in other people and in the hearts of the people who loved him so much.

He died at home surrounded by family: Ross, Sarah, grandparents Suzanne and Jim, Eddie and Pauline, Uncles Mark and Ethan, Aunt Jennifer and cousin Matthew, Uncle Garry and Aunt Julia.

Phil then read the famous bereavement poem attributed to Baltimore housewife Mary Elizabeth Frye, thought to be the only poem she ever wrote:

Do not stand at my grave and weep.

I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sun on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning's hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry,

I am not there; I did not die.

Then it was time.

We watched as Thomas's casket was lowered into the ground, and we all tossed white roses and lilies on top. Ross and I were so proud that we could give our son such a beautiful send-off. It was exactly right.

After the funeral, we went to Mark's house in Alexandria for lunch. It was such a lovely day that we ate outside on the porch. Mark showed a five-minute photo and video montage he had made of Thomas. I was so grateful to him for taking all those pictures and spending all those hours making the video. I was especially happy that my stepmother, Cathy, was able to see it. She had been sick and so hadn't been able to meet Thomas in person; the video made her feel like she got to know him after all.

Later that day, Ross and I and Callum went back to our house to begin our life as a family. I took a nap with Callum on my chest, and Ross went for a run—something he often did to clear his head after a long day at work.

The worst two days were behind us.

In the days after the funeral, Ross and I tried to make the transition back to the normal life of new parents. It was such a blessing to have Callum, who was now a healthy little guy.

We sent out this bittersweet birth announcement: