John Lennon wrote, “Life is what happens to you while you’re busy making other plans,” for his son Sean 20-something years before my son Joe was born. But that phrase, from the song “Beautiful Boy,” has been a constant caption to the ever-evolving picture of life since my son was born, 14 years ago today.
I’ve never been more terrified than the day Joe was born. It was August 6, 2001, and he was expected to arrive on his mother’s (Jane’s) birthday, November 8. So, we definitely were busy making other plans when Joe’s life happened.
You know how those plans work, those hazy, someday plans. We knew a son was on the way. We already had a crib. Beyond that, I imagined us throwing a baseball, so he had a ball and fielder’s glove before he was born. I imagined us camping, hiking, running, and climbing. Father and son stuff, the way I’d always fantasized it. The thing is, we’ve done most of that stuff, but in no way has it resembled what my daydreaming had conjured.
Those were hard days, the joy of a new birth jumbled up with the fear that it was too premature and the sadness that still hung over us. Jane’s mom had just died, in late July. My daughter, my very pregnant wife and I flew to California to be with family and see Mom off to whatever waits on the backstage side of the universe. She was wonderful, my mother-in-law, a round-shaped woman who stood an inch or two below five-feet, who could cook a meal that rivals anything you’ve had, who was filled with unconditional love and spoke with the cutest, high-pitched Maltese accent.
In the months before she died, as she and Jane kept in constant touch, Mom would say, “when the baby arrives in July … , ” and Jane would remind her, “November, Ma, the baby’s due in November …” Turns out, Mom was closer to the mark than anyone. A fairly normal pregnancy was rushed to an unexpected conclusion the morning of August 6, and I was terrified. The doctor tried to delay delivery long enough for steroids to promote development of Joe’s lungs. But he was coming and nothing could stop it. About a week after we returned from California, he was here.
Joe spent his first 77 days in the neonatal intensive care unit (NICU), much of that time in a protective incubator, his tiny body struggling to maintain normal, healthy blood oxygen levels. We spent at least part of every day in the hospital with him, watching him. It was weeks before we could touch him, or kiss him. Evenings in the NICU were punctuated by beeps and alarms, which prompted Joe’s caregivers to make this adjustment or that one.
By the time we took him home, it was apparent that Joe had some kind of developmental delay, a big phrase with wide ramifications we barely understood. We got busy hiring a physical therapist and specialists and making ourselves ready at home, and life kept happening. Several months later, when the seizures started and his neurologist said, “Joey has cerebral palsy,” life kept right on, and a year later, when the neurologist died (and this was a mensch among men), life kept on.
In the 14 years since Joe was born, life patterns have veered wildly from anything we could have mapped out, so we threw out the map years ago. Plans? We’ve seen so many of them come apart at the molecular level that even saying the word feels like tempting fate. We make them anyway, but we make them without attachment, and let life get on with itself. And gradually, we have assumed a constant state of foxhole readiness — an underlying tension, ready for the next trip to the hospital, because there have been many.
In spite of all that, I think that Joe would tell you it’s been a pretty good life that has happened to him so far. The reason I think this is because he smiles a lot, and it’s an honest smile. He seems to really enjoy the simple things – a pleasant breeze, a fast ride, a good movie, a funny sound, good music, loud noises, curse words, burps and farts.
There have been imaginary Joes that visit me during sleep, and sometimes when I’m awake, while driving, daydreaming; imaginary sons who can lift me when I fall, or tuck his mother in when she is old.
But the real Joe is exactly who he is. It’s not the life I’d planned for him or for me. But I’m so grateful that life happened to us at the same time, that our lives have intersected. Because now, 14 years later, I can’t imagine mine without his in it.