He Had a Child on the Way and A Head Full of Hopes, but Life Had a Different Scenario in Store
Monday, November 19, 2007
We were expecting, and we wanted so much for the birth of our second child to go well. There had been some difficulties when our first was born, and we hoped the second birth would be without travail. We were more prepared this time, we thought. We were reasonable in our expectations.
But shortly after Thanksgiving that year, in her 33rd week of pregnancy, my wife suffered a brain hemorrhage and nothing would be as we expected.
Days of tests left us unclear about the cause of the bleeding. Then my wife had a shockingly violent seizure and it became apparent that mother and child needed to be separated. Our son was born by emergency Caesarean section, the placenta beginning to tear away, the connection to his mother detaching. His lungs barely functioning, he spent the first three weeks of his newborn life in the neonatal unit.
My wife was flown by medevac helicopter to Johns Hopkins Hospital, where she underwent brain surgery to clip an aneurysm and stop the hemorrhaging. Our daughter, then 22 months old, was shuttled among grandparents, neighbors and friends while I spent the next two months traveling between my home in Rockville and the hospital in Baltimore, trying to hold together myself and the fragments of my young family.
I had hoped my wife would come home from the hospital before our baby did, but her brain had lost several weeks' worth of memories and many of its higher functions to the operation. Bringing home our son just days before Christmas, I reached the painful realization that it was going be a long time before she would join us.
On Christmas Day, I opened presents with my daughter under a tree that friends had bought for us, but neither the holiday nor the fact that my son was home made me feel much like celebrating. Leaving the children with family, I drove with my mother-in-law to Hopkins. We walked into the neurological critical care unit, feebly decorated with fake pine boughs, small lights and ornaments, and synthetic Christmas stockings for the nurses. My wife lay in her bed with needles in her arms and tubes down her throat, unaware of where she was or why she was there or that she had a newborn infant. Her face swollen and her head stapled shut, it was a Christmas she would not even remember.
This was not how it was supposed to be. This is not what I had expected.
Many people said we were lucky, that the majority of aneurysm victims do not survive; that, despite the erratic leave I was taking, I did not lose my job; that the medical costs did not bankrupt us. But I felt so far from lucky. Our unfortunate change of circumstances was a blow to my sense of justice, and I became angry. As days passed into months, and months into years, the anger bubbled like lava beneath a thin crust.
I could easily be living today in a box shaped by my anger. And yet, after months of counseling, the anger began to subside. My wife's recovery from the insult to her brain was still a long and difficult journey. Perhaps what changed were my expectations.
Expectation is natural. Daily, we expect routine things to happen in routine ways. But more than just rational anticipation, expectation is also what the heart hopes for. So often, I set my heart on a particular outcome despite knowing that all the variables in human interaction make events impossible to predict. When things don't turn out as I had hoped, I feel the rush of anger, bitterness and disappointment. So many times I have to stop and ask myself, "What were you expecting?"
But I have found it possible to decrease the distance between where I am and where I thought I should be by changing my expectations. Expectations can be raised or lowered. They also can be shifted, laterally, in a different direction, modified without judgment, amended in a way that more closely matches reality.
Few of my expectations for the first year of our son's life were met. Eventually, though, I was able to set them aside and move forward. He is now a healthy and happy 6-year-old.
My wife has no memory of his birth. In fact, the gaps in her memory are a very real hindrance, a problem shared by everyone with a brain injury. The surgery disrupted her ability to form new memories, to remember places and times, faces and names. Sometimes she will put down something important -- a piece of jewelry, the car keys, notes from the children's school -- and only minutes later not recall where. Then, as she tries so hard to remember and cannot, the frustration and anger, the self-doubt and panic take over, blotting out any hope of recovering the memory. She deals as best she can with her challenges, and most people have no idea how far she has come. To those who don't know the story, she seems normal, and when her memory lapses become apparent, she is judged for her shortcomings. Suddenly, she does not live up to their expectations.
We have endured as a family, for which I am grateful. But I still remember what I had my heart set on before the path of our lives veered in an unanticipated direction. Those expectations live in a small corner of my mind, detached and out of the way but lingering to remind me of who I was once and how different I am now.