Finding Our Way, With Community

Originally published at Hemophilia News Today on April 19, 2018.

I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the MacDonald clan into our house. We were utterly captivated by him. All seemed right with the world.

The first several months of life with my son, we later learned, were considered a honeymoon period. Since he did not move around an awful lot, he had very few chances of incurring any trauma that could lead to complications (even though he could have a spontaneous bleed). One evening, my amazing young man fell asleep after drinking a bottle. I carried him to the nursery and laid him down on his bed.

As he lay there fast asleep, a wave of panic overwhelmed me. I had no idea what the future would hold. What might happen to him? I wanted to protect him from whatever hemophilia meant. With nothing else left to do, I placed my hand on his little back and tried to send all the good energy that could flow from my hands to his sleeping body. Nothing could happen to us that we couldn’t handle.

When my son turned 6 months old, we began to experience moments when the vocabulary of hemophilia began to introduce itself into our lives. Our first visit to the doctors, nurses, and social workers who made up our treatment facility forged a link in managing “MacDonald the Older’s” medical needs. The entire time graciously welcomed us to the community. Each person provided crucial information that guaranteed us the best possible care available.

We met key members of the bleeding disorder population and received support from many of the mighty men and women who experience and care for those managing hemophilia and other related issues. Our new family proved crucial to our understanding of what my son needed. All we had to do was pick up a phone, and we instantly felt connected to something greater than ourselves. Almost 22 years have passed, and we still consider these incredible men and women our dearest friends.

Early in my son’s life, we learned lessons that continue to carry us forward. We know that family is not defined by those physically related to you, but by people who surround you with joy and hope in all circumstances. My wife and I discovered that we had a strength that we never knew was part of our DNA. We also realized that we are an outstanding team, and together, provide our boys with a force that we didn’t know we possessed.

And so we started our journey through the world of bleeding disorders. Sometimes we found solace in friendships; other times, we relied on one another. No matter what happened or occurred, we were grateful that this beautiful life came into our world. He was born, and nothing else would ever be the same. For that, I look up at the stars and say, “Thank you!”

Published by joekmac

I am a pastor in the United Methodist Tradition. I am the Pastor of Hamlin Memorial United Methodist Church in the New Mexico Annual Conference. I am married to Cazandra and have two sons with hemophilia.

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