We rocked back and forth in the little green glider, the same glider I had rocked you in two months earlier, in the same room, at the same time of night. Except now everything was different.
As a new mother, I made a habit of using this 3 AM feeding as a time to practice being completely present with you, without the distractions of a busy day to pull my attention away from your sweet face, your smell, your little noises. But I couldn’t help imagining your future. I would look around your room, picturing how it would grow with you. Would I someday paint the walls blue? Buy airplane sheets and hang vehicle pictures on the wall? Or maybe jungle animals. I would, of course, choose what you liked best. Would you someday share the room with a sibling? When would you grow out of your crib?
I made a habit of using this 3 AM feeding as a time to practice being completely present with you, without the distractions of a busy day to pull my attention away from your sweet face, your smell, your little noises. But I couldn’t help imagining your future.
That was before we learned what Diamond Blackfan Anemia is. Before we knew that babies can have blood transfusions through an IV inserted in a vein at the top of their tiny head (your nurses called it a “party hat”). Before we knew what RPS19, hemoglobin, reticulocyte counts, and corticosteroids meant, and how much those new words would factor into our world. Before we knew you might need a bone marrow transplant, and before we knew your life expectancy had been cut by two-thirds.
Now while we rocked, instead of looking around your room and blissfully picturing your future, I cried. Most nights, I cried so hard the sadness violently shook my body, as I attempted to slow my breathing so I wouldn’t wake you again. Tears soaked your fuzzy little head each night, and no matter how much you grew, at three in the morning you always seemed impossibly tiny in my arms. The life I had pictured ahead of you had suddenly been flipped around and came rushing back at us in the dark, and I held you tighter to protect you from my fear.
During the day, I moved through our routines of caring for you, working, keeping house, and tracking your medications, nap schedule, and nutrition. These activities distracted me, and, knowing you would never lead a “normal” life, I committed myself to making sure your life was calm, full of love, and awash in quality time. Dad and I were a team, and he held me up so I could make a beautiful life for you.
But at night, during that once beautiful time we shared together when the rest of the world is asleep, pain and panic caught up with me. I switched to making mental lists of what to pack for extended hospital stays. Instead of picturing your future, I timed your pulse and counted your breaths. I turned on the light and checked your coloring, and watched your chest move up and down. Dreams of a future sibling were pushed out of my mind.
Instead of wondering when you would grow out of your crib, I wondered how we would pay our bills. I had used up all my sick and personal days by the time you were 4 months old, and our savings was gone, spent on medical bills. I wondered how we could survive on a single income, since Dad would stay home to care for you. I wondered how to best keep track of your four rotating medications that needed filling at different times, and would try to remember if one needed filling the next day.
I wondered how many milestones you would reach before we lost you.
It continued this way until you were finished nursing, for over a year. And then beyond that because, whether a result of medication side effects, a natural tendency towards poor sleep, or, as the doctors warned us when you were born, babies’ habit of waking at the hour they were born for years, we continued to meet in the tiny quiet hours of the morning.
3 AM is still part of my day, and still a time for me to worry about you. But it has become easier.
Now you are six. I still wake up at 3:00 nearly every morning, and come to your room to check on you. I still check your breathing and your coloring. But your appointments have slowed from many per week to twice a year, and I have plenty of sick days saved up in case that bone marrow transplant decision must be made. Our savings is growing again, and we pay all our bills on time. Your medications have decreased and we never forget to refill them. Dad still stays home, now with your sweetest little sister. 3 AM is still part of my day, and still a time for me to worry about you. But it has become easier.
And, most importantly, it has become a time of deep gratitude, a time for me to reflect on the gift we were given of another day with you.
About the author
Kate Rodger lives in Lowell, Massachusetts with her husband and two children. She spends her weeks commuting with her son to her job as a special educator, and her weekends gardening, reading, dabbling in nascent theater companies, and spending as much time as possible with her family. She lives by the quote, “Today well-lived makes every yesterday a dream of happiness and every tomorrow a vision of hope,” and finds it especially relevant as she enjoys each day she has with her babies.