Originally published at Hemophilia News Today, April 5, 2018.
Some moments forever alter lives. Sometimes we celebrate educational goals, while others encounter the excitement of new love. Other times leave us breathless as we attempt to rise again from a catastrophic event, unsure whether we will ever recover. Whatever we experience, our world changes and none of us are ever the same.
In my life, there were several times when I knew that things changed. I remember the very first time I took my wife’s hand in mine. I knew in the briefest of moments that this was the woman with whom I would share the rest of my life. I call it “A Nanosecond of Absolute Clarity.” Almost 30 years since that moment, I still think it is the best thing that ever happened to me.
Three years into our marriage, we decided to have a child. It was as if the moment we agreed to embark on this, our most significant journey, my wife, found out that she was pregnant. We could not believe that we would welcome our first child into our house. We talked to the baby every night and eventually spoke our son’s name when we found out the answer to the long-awaited question regarding his sex. Life appeared to move forward with nothing out of the ordinary. That would soon change.
My son came into the world on a very stormy night in Houston. The lightning danced around the hospital until it found its target and hit a transformer. The electricity, including the air conditioner, did not work. Mr. MacDonald came into the world with 10 boxed fans in the operating room. A generator supplied electrical power and lighting when I heard that fantastic little voice for the very first time. In addition to my youngest son, I still considered it the sweetest music I ever heard.
I knew at this moment that life took an entirely different meaning. No longer would I worry just about my needs, but I now had to worry about my family. My wife and I lay together in her hospital room shortly after the birth of our boy. We discussed the events of the day, trying to process through the change in our lives. As we lay there, a nurse wheeled this little object with amazing lungs into our room. The moment was sacred, set apart just for us.
The next day, I left for work. I knew that my son’s circumcision was scheduled later that morning. I didn’t give it a second thought. It was merely a routine procedure.
Later in the day, I telephoned my wife to check in to see if Mr. Mac happened to be in the room. She explained that the nurses had him as he had some blood in his diaper. Still, there was nothing about which to be alarmed. Perhaps he had some residual bleeding because of the circumcision. I didn’t give it a second thought.
When I returned to the hospital, the pediatrician on call came to visit with us. Little did we know he would be our son’s doctor for many years. He said, “He is still bleeding. I don’t know why, so I asked a hematologist to come and examine him.” We thanked him and looked forward to the bleeding episode to come to an end. We still had a very minimal concern.
The next day I went to work, expecting to hear that all was well at the hospital, and we would bring our son home. As the workday ended, I could barely hide my excitement as I hoped all three of us would leave the hospital and finally sleep in our beds. My wife worked like a warhorse to paint and prepare the nursery. It was time to have the tenant move into his crib.
I arrived at the hospital as fast as I could. A team of doctors with specialties in hematology greeted us. They told us that my son has a very rare bleeding disorder called hemophilia. “Hemophilia?” I didn’t even know what that meant. My next question was, “Will he live?” The doctors assured me that he would live a long, happy life. With that information, I took a deep breath.
I knew that this conversation, this moment, would change my family forever. I didn’t realize until much later how hemophilia would redefine my world. Regular discussions grew to include needles, bleeds, and advocacy. We also learned how to live in a community and give thanks for those many friends who are as close as any family member can be. Yes, my son’s diagnosis was a moment when my life changed, and for that, I am genuinely grateful.