I’m listening to my 5-year-old son William play on the floor with his cars, helicopter and his cousin Jonathan’s aircraft carrier and I remember the first night he did not sleep at home.
He was 8 months old and had pneumonia. He had been fighting respiratory infections for almost four months. He was so sick by now, he would just lay on your chest, moaning, listless, exhausted. At our insistence, the pediatrician admitted William to the hospital on Tuesday, Nov. 16, 2004. I don’t know if his life was in danger or not then, but we felt like it was. He was so ill and weak, my husband Joaquin and I felt like the next illness might take him from us. We were terrified we would lose William.
I stayed with William in the hospital for three days while Joaquin stayed with our older son Martin, who was 9. I would not leave my baby. But by day four, I was depleted, and Martin wanted me home. Martin and I drove to the house we had moved into only three weeks earlier. An old house with outdated décor and in disrepair. We had not even unpacked. Our home was no sanctuary and I desperately needed sanctuary.
I needed to pack clean pajamas and William’s own diapers for him. And that’s when I realized why I didn’t want to leave the hospital. I did not want to come home to William’s empty bed.
I went to his room and leaned into William’s crib. I knew he wasn’t there. I prayed he would be back in it soon, but worried he wouldn’t be. For a moment, I realized that if we did not figure out what was at the root of William’s health problems, that one day, he would not come home. My heart broke and I sat on the floor by his empty bed and I cried.
I did not come home again to stay until Monday, Nov. 22, when William was well enough to be discharged. That night, I went to his room and leaned into his crib and kissed him. William was home.
On Dec. 15, we drove William 2½ hours south to Shands’ pediatric pulmonary clinic and learned they wanted to test William for cystic fibrosis. The pulmonologist seemed convinced that’s what William had – a progressive, debilitating lung disease that would likely take William’s life before he turned 30. We prayed and held William close. Thankfully, the test was negative. We rejoiced and thanked God for this blessing.
Five days later, on Monday, Dec. 20, my 16-year-old nephew Jonathan died in a car crash. My sister Becky’s only child. He was a beautiful, kind-hearted, funny kid who loved his family. His death came out of nowhere.
After a long night in the emergency room with my sister and family, I came home. I went straight to William’s room, leaned into his crib, picked him up and sat in our rocker. He slept and I held him tight and rocked him. As I sat there, I pictured nothing else but my sister coming home, going to Jonathan’s room and finding only his empty bed. A bed she had no hope of ever seeing him in again. My heart broke and I cried.
Today, our friend Sara grieves for her 17-year-old daughter, Eliza – a beautiful, insanely optimistic child who had more courage, more verve, more doggedness than any child or adult I’ve ever known. A wise and soulful spirit, Eliza.
Becky and I drove to Sara’s house to see what might need doing before Sara comes home from Shands, where she has lived with Eliza in the pediatric intensive care unit for almost 8 months.
I saw a light on in the kitchen and I remembered something Sara wrote to us … that the thought of going home without Eliza makes her ache. I pictured nothing else but Sara coming home, going to Eliza’s room and finding only her empty bed – with no hope left of seeing Eliza sleeping peacefully there again.
My heart broke again and I have cried. For Becky and for Sara. For William’s hard and frightening first year. But most of all, for Jonathan and for Eliza. Your beds are now empty and our hearts will never fully heal, but your lights, your lights will always shine.