At midnight, when the calendar turned to 2/20/2006, the two of us lay on either side of our 9 month old baby boy as he was dying. All three of us, together, on the futon in our dining room turned hospital/bedroom/nursery/temple. That whole weekend we had all slept downstairs together. We didn’t want to be away from him for a second. It was awful waiting for him to die. We had already been waiting 5 months, but the waiting over that weekend was the worst. I had planned his funeral weeks and weeks before. We had gotten our clothes ready, his clothes ready, his blanket, what stuffed animals would go with him, we had written him letters we were going to read at the funeral. All arrangements were made. I knew everything that was going to happen to his body. I knew I wanted to bathe him and dress him afterward.
Six months after the tumor was found in his brain, five months of caring for him 24 hours a day, every moment dedicated to him, to his needs, to his care, always waiting, wondering how it will be, when it will be, we were waiting for that final breath, wondering if we would drift off to sleep, if he would drift off to sleep, if he would be agitated, uncomfortable. How much longer would it be? There was nothing we could do but wait. And hold him and love him. That’s all. Those five months of having him home were complete devotion, moving a meditation, prayer in action. One of the forms of yoga is bhakti yoga, the yoga of devotion—of actions toward others translated into pure love. Focusing love and devotion on the well-being of others in such a way that those actions become worship of God. In that devotion to others, one worships the Divine within that being. Theo was the object of our bhakti love. Our object of worship. There was nothing else we could do. There came a point when I could no longer pray. My acts of loving and caring for him were my prayers. Love him, hold him, care for him, soothe him, be with him, breathe with him. Give him medicine—morphine, methadone, chloral hydrate, the fentanyl nebulizer. Watch his breathing, watch his movements, listen to his heart.
That long night, I slept some, Theo slept. I don’t think Jamie slept. Each time I woke, he was still breathing. Neither of us wanted to be away from him, to be anywhere but with him when he took his last breath. Jamie's mother died on the day Theo was born. He had not been there when his father died, he had not been there when his mother died. He promised himself that if he possibly could, he would be there the next time someone he loved was dying. He made that promise to himself the day his son was born. He had no way of knowing that Theo’s death would be the first keeping of his promise. I was there when Theo took his first breath, I would be there when he took his last breath. I would hold him, love him, help his death to be as peaceful and loving as possible. We wanted only to be there with our son.
When he woke early that morning of the 20th, he was not comfortable, he was agitated, he couldn't rest. We didn’t feed him his regular morning feed. Only a small bit of formula with his medicines. Phenobarbital, lorazepam, morphine, methadone. The sun shone, the clock ticked. We watched him, we held him. We smoothed his forehead, we propped him on pillows, we held him. We played music, we sang to him, we cuddled next to him. we held him. We gave him his medicines. We waited. He breathed laboriously, he breathed shallowly, he took big breaths, held them. He stopped breathing around 2:30 p.m. No breathing, stethoscope gave no heartbeat. About a minute went by. We didn’t know what to do, even though we had every thing planned. Then he gasped air, his heart was beating. Stunned, we held him, kept holding him, waiting. I watched the clock. When would it be? We were so, so tired by the time February came. I think Theo was tired too. The whole week before he died, he was very agitated, fussy, not feeling well. On that Friday, I didn't think he would live through the night. But he lived through the whole weekend, through most of Monday morning and afternoon. He was on so much morphine and methadone by then it was crazy. The owner of the pharmacist called me about a month before Theo died, panicky, thinking the script had been written wrong. I told him, “No, it isn’t written wrong”. I told him why Theo was taking so much medicine, such high doses, and he just broke down and started crying on the phone. The doctors told us about a month before he died that there was no way we could give him too much medication. He could have as much as we wanted to give, as much as he needed to be comfortable.
Holding him, looking at him, I knew that soon, he would not be here anymore. What would it be like? I didn’t know for sure. I had been with people when they had died, no babies though. Not my child. I had questioned the doctors about what to expect, I had read up on what would happen to his body after death, I researched information on embalming and the processes his body would go through. I had everything planned, who to call, what to do. But what would it be like when my child actually died? His breathing got slower and slower. I could barely breathe myself. It felt like I had to keep reminding myself to inhale, exhale. At 3:33 p.m., Theo took his last breath. He did not breathe again. I was holding him when he died. It was quiet. My heart felt as if it were squeezed into a tiny thimble. Tight, compressed. My stomach felt like one of those high bouncy balls you can get out of machines for 50 cents. Hard, small, condensed, like a rubbery pit in my gut. Everything, everything stopped. I could believe that time stopped, the earth may have stopped turning, the stars may have paused to witness this momentous occasion in our little universe on Sheppard Street. To witness the death of this baby boy. I can remember looking down at his sweet face, the weight of his body in my arms, the warmth of him next to my chest, my belly. He was dead. It was over. All that time, the months of fear, pain, anxiety, hospice, equipment, trips to the doctors, hospital, scans, MRIs, the medicines, the tumor growing, slowly taking over our lives, it took away our future with our son, it took over our lives for all that time. Now Theo had escaped it. But we were left here without him. Still are left here without him. A strange numbness, an inertia, a feeling of unreality set in. I just looked at him. Hot tears slid out of my burning eyes and down my cheeks. Jamie asked to hold him. The spell broke. I didn’t want to give him over, but I did. It was his father asking.
Together we gave him his bath, dressed him. His g-tube began leaking a greenish fluid—mostly his liquid medicines still in his belly, and his stomach juices. I packed a lot of cotton 2x2 squares around it, folded one of his little bitty cotton t-shirts that didn’t fit him anymore and taped over it with his bandage tape that we kept for the dressing around his tube. I didn’t want the juices to come through his clothes. We wrapped him up in a blanket and starting calling people. Called our hospice nurse. Called my mother, my father. My mom asked me if I felt his spirit leave when he died. I didn't --but I think he wasn't totally in his body when he died anyway. I think he was in and out starting that previous Friday evening. I don’t think his spirit was really in his body by the time it stopped working. I think he was already out, and there all around us in the room. It felt like that for a long time. He felt close by even when his body was growing colder. My dad and Jennifer wanted to come over. I called our funeral director who had already arranged for some local funeral guys to come pick him up when he got the call from me. I said to please have them wait until about 6:30. We needed some time with him. I think I held him almost the whole time until they came. Our hospice nurse came over even though it was her day off. She wanted to see Theo. She said, “I would never say this to anybody else, but I know you won’t take it wrong. I have seen a lot of dead babies, and this is the most beautiful dead baby I have ever laid eyes on. He is so beautiful”. And he was. He was beautiful. She held him for a minute. Jamie held him again. When the funeral men arrived, we had just all had a round of bourbon shots to toast Theo. God knows I needed a drink, we all needed a drink. I knew they thought we were a strange bunch. I introduced them to my dead baby. They didn’t know him, they didn’t know us. They didn’t seem very comfortable at all. But they brought me a rose. That was a nice gesture. I wanted them to know something about him. They were going to be doing the embalming here in Richmond. He would be transported the following day to my home county, 6 hours away, for his funeral and for his burial in our family cemetery. You can’t have a dead person transported without embalming them first, so no matter where a funeral is to be held, the “initial procedures” are done locally. I hadn’t known that until I started making arrangements. There was a lot of stuff I didn’t know until I met Theo. But I wanted them to know him. Who he was, how he died, who we were, how much we loved him. When they touched his body, when they undressed him, when they prepared him for his burial, I wanted them to know who he was.
I carried him out to their car. Thankfully they didn’t have a big hearse—just a big SUV. By then, his ears were pooling blood and turning purple inside. He was getting much colder, more quickly. They made me cover his face with his blanket as we walked out the front door. It’s against the law to have a dead person’s face showing in public. I didn’t know that either. I laid him on a tiny child sized silver stretcher, and they buckled him onto it with black straps. They closed the hatch. I think the sound of that big hatchback closing down in the dark street—Slam!—was one of the worst sounds I have ever heard. I turned and walked away from the car and into the house and didn’t watch it pull away.
Spending that night in our bed together, the house empty of Theo, was so very strange. We hadn’t slept together in the bed in nearly 4 months. He was more comfortable downstairs for some reason, so whichever one of us was going to work the next day would sleep in the bed upstairs and the other would stay downstairs with Theo. We slept apart almost every night during those months. One of us was with him 24 hours a day. When I stayed up with him I usually stayed awake until about 3:00 a.m. and would wake up around 6:30 am to give him his medicine. His breathing would change when he woke up. It woke me faster than any alarm clock. We slept together the night he died, alone in the house together. The house felt empty, we felt empty.
The next time I saw his body was in the funeral home two days later. I knew when I saw it that it was his body only and that Theo was gone from it completely. It was a relief to feel that. The funeral--that whole week--is a blur. I hardly remember it. It almost seems like a dream.
And now it has been a year. One whole year has gone by. In thirty minutes, this anniversary day will be ended. At 3:33 p.m today a new segment of grieving began. No longer can I think back and be able to say, “this time last year he was alive”. No, that is over. I try not to think I should or shouldn’t be feeling or not feeling something. That I am doing better than I should be or that I am not behaving in a certain way. I know this is a lifetime journey.
Today, other people remembered my baby and that means the world to me. We received a dozen white roses from one of the best friends anyone could ask for. Jamie’s sister sent us a pot of daffodils, blooming and growing. A friend made me a beautiful pottery vessel that is shaped kind of like an egg and inside is a dragonfly, Theo’s name and a heart. One of my mothers customers in the bank came in and said his wife wanted him to let her know she was thinking of her and of me today and praying for us. She remembered. We went to the cemetery to visit the Angel of Hope statue, took some flowers and released three balloons. One for us, one for Theo, one for all the babies that have died, whose spirits fly with Theo. Our hospice nurse Donna came over this evening with a bottle of wine and we had an anniversary toast to Theo.
It was a peaceful day to end a not always peaceful first year without him. I miss him. I miss him so, so, so much. I still have the Why? in the back of my mind. This past week it has been louder than it has been in a while. It will quiet down again eventually. And it will be back again, eventually. I feel fairly certain that I will probably never find the answers to my questions in this lifetime. I feel that I have made it through something. And I have. I don’t know what is coming next. Something will. I feel like I have lots to do still. I believe, because I have no other choice but to believe, that Theo and I made this agreement to go through this experience together and I believe that I still have things left to do for my part. I don’t know yet what those things are. I am trying to just allow things to unfold. I know he is helping me to do that. I have felt him with me today—no more than other days. I know he has brought me comfort and peace today. I feel peace and I feel love and, other than having him here with me, physically, other than somehow being able to magically wipe all this away, wake up in the morning to a healthy, bright almost 2 year old Theo, I couldn’t ask for more than that. Even though my heart is broken, I can feel his love, and that is something wonderful.