Author Archives: joekmac

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!”

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.

It is extremely easy to worry about outcomes. We panic about illness, money, relationships, along with everything else that seeks to take hold of our time. As a matter of fact, my anxiety about different situations can become so large that I lose sight of my faith. It is challenging to keep my eyes fixed on God when there are so many other things that distract me from my relationship with the Divine. Events overwhelm me, and the rug is pulled out from under my feet. I cry out, “How can I sing the Lord’s song in a strange land?”

The Apostle Paul reminds us that we must remain focused on the One who gives us the power to overcome any obstacle. The peace of Christ opens the door to the reality of God. I am not talking about passivity, but the fuel for courage beyond our own abilities. Faith that can move the biggest stumbling blocks in our path. Paul encourages us to wake up and rely on the living God.

Let us not give way to the chaos that can take control of us in a second, but embrace the loving arms of Christ. We must make a spiritual commitment to discovering our beloved Creator every day. How can we know God’s power when we do not spend time with Him? Our devotion must be laser-focused and not give way to anything that might lead us into darkness.

Grace is free, but it is not easy, for it requires something from us. In the moment of our realization that God saves us from ourselves, we must respond with our whole hearts to the sacred invitation, “Come, follow me.” My prayer this week is that each of our answers to Christ’s call, “Here I am, Lord.” We understand that commitment requires action. Let everything we do reflect the Good News. We are reborn, made alive through our faith in the One who loves us, even in the darkest of circumstances.

     I must admit, I sometimes struggle with Paul’s theology. His ideas regarding marriage leave me utterly confused, but his reflections are not the subject of my posting today. This week we read the Book of Romans and started 1 Corinthians today. While reading his letters, I can’t help but feel overwhelmed and utterly blessed to be covered by grace. His writings emphasize the gift of God (which is redeeming love) as found in the personhood of Jesus the Christ.

     This love, given to us without price, offers us a connection to the Holy One not seen before the presence of the Messiah. I am overwhelmed with the blessings of God and the hope that we see as written by the Apostle Paul. We see adherence to the traditions of old, with a new expression of covenant living; both with the Divine and with God. We love, not with simple feelings, but with a fierce commitment to honor the Holy One in our living.

     Praise be to God that we find ourselves overwhelmed with Sacred Presence; boldly moving us forward to holiness in thought, word, and deed. Our season of thanksgiving calls us to worship; to give thanks for all that we are given. I am grateful for a reminder that grace flows through us around us and over us. It saves someone like me; yes, even me.

“For the real Jew is not merely Jewish outwardly: true circumcision is not only external and physical. On the contrary, the real Jew is one inwardly; and true circumcision is of the heart, spiritual not literal; so that his praise comes not from other people but from God” (Rom. 2:28-29 CJSB).

Paul speaks of a faith that reaches below the flesh into the center of all compassion, the heart. The beauty of his theology lays the way for both Jew and Gentile to be brothers and sisters, working side-by-side for the glory of the Most-High God. According to Paul, one must press beneath the surface and discover the beauty of a complete surrendering to the Father. We must be made anew. This transformation of faith requires a commitment, a total dedication of the whole body, but most of all, the heart.

At the same time, Paul describes a new way of looking at an old tradition. Two things suggest a unique approach to both Jew and Gentile. To the Jew, he reminds us to observe the traditions which prove essential to the ancient faith. Circumcise your young, but let God’s unlimited grace lead you to the One whom you worship. Gentiles, while not under the law, should focus on a life that calls for observance by a change of life, a circumcision of the heart, a commitment to serve our God faithfully, and wholly.

Praise be to God for the amazing grace that continues to lead us into everlasting glory! We all bow at the feet of the Messiah, longing to be in fellowship with Him. The law and doing works gets us on the right path, but it is the free gift of grace, which is offered by the Divine Giver of Life, that restores our souls and renews our spirits. May we live as faithful servants, always searching for God’s gracious love.

This week our Biblical reading included the story of the Prodigal Son found in the fifteenth chapter of the Gospel of John. I find it quite interesting that the story of a son who leaves and then returns is paired with the parable of a shepherd leaving the rest of the flock to find the one who is lost. How do these two passages share an overall message of God? Better yet, what do we learn about the character of God?

If understanding both the shepherd and the father as God-like figures, one concludes that God never stops searching for the one who is lost. He does not share his love like a democracy, but for the well-being of the entire flock. No one will ever be left behind, as holy arms will discover us in our moments of complete darkness. We once lost our way, but then the Divine found us and led us back home. Praise be to God for radical love that searches even for one like me!

The story of the father who sees the younger son return from a grueling journey does not cast his child away but welcomes him home. We learn that not only will God never leave us, for on the son’s heart, his father wrote a message of unending hospitality, but he also welcomes us back when we lose our way. Indeed, the son ran back to the father. But where did he get the thought of the possibility of returning home? He saw the treatment of others and knew that hope loomed in his father’s house. His return home did not end in failure and settling for scrappy seconds, but a celebration, complete with a banquet and into the welcoming arms of God.

We learn through these two parables that God wants us to come home. Whether He must look for us or divine arms await our return, we find our place in the presence of the Most-High. So, it seems like the parables placed side by side are not meant to be compared with one another, but to present us with a rich, deep, and broad understanding of the Father’s love for us. We move forward in the hope and knowledge that we are God’s children, cared for, and welcome into the Holy Presence of our comforter, redeemer, and holy parent.

 

 

This past week we crossed over from the Hebrew Bible to the New Testament. While I find the Tanakh compelling and rich in substance, as a believer in the presence of Jesus the Christ, I gladly embraced the hope that is so alive in the Gospel of Matthew. My Lord came into the world, and for that, I say Halleluia! The Messiah is born. For that, we offer gratitudes of praise.

One of the many things that compel me to read the Gospel of Matthew is the foreshadowing of the ministry of Jesus. The beginning is a genealogical record proving Jesus’ identity as a descendant of David, therefore establishing a prophetic connection to the Hebrew people. We pick up themes throughout the text like Jesus is the fulfillment of prophecy. His chief antagonists included the Jewish leadership, and by God’s divine authority, Jesus’ teaching is the truth.

The wise men come from the east to worship Him. While this may appear insignificant at first, the idea that people from different faiths and ideologies come to experience the healing nature of Jesus, the Messiah. His leadership allows for a new and revolutionary way in which we observe the Jewish tradition, but begin to share with the Gentiles the good news of God as made flesh in Christ.

We start on our journey through the four gospels, each sharing a glimpse into the brilliance of our God. We are left with the “Great Commission” that Jesus offers as He ascends into heaven. “Therefore, go and make people from all nations into disciples, immersing them into the reality of the Father, the Son, and the Holy Spirit, and teaching them to obey everything that I have commanded you” (Matt. 28:19-20a).

Warning, I am about to discuss how faith and a dad’s bias work together. Both present an overall picture of our journey through the rough terrain of a chronic illness. While I admit that I am a United Methodist pastor in the protestant Christian tradition, my writing is not meant to favor any spiritual or faith practice above another. My goal is to find commonality across cultural differences as we journey through the ups and downs of chronic illness

When I attended Iliff Seminary, on the campus of Denver University, a professor came to the class to discuss how those with disabilities read the miracle stories of Jesus differently than those of us who do not face a constant medical challenge. I never thought about this topic. Because my boys have hemophilia, does that mean they struggled with questions of faith?

How can I help them maneuver this complicated territory? Because “MacDonald the Older” and “MacDonald the Younger” have an inherited bleeding disorder, does that mean they must hide in the margins of the church? The ultimate question frightened me; would my children be fully welcomed in my house of worship?

I shuddered to think that the place that I gathered my strength and hope would exclude anyone, especially my stinky boys. I started talking to my oldest, who was thirteen at the time, and he looked at me and said, “Dad, it doesn’t matter.” I assured him that one day, it would, and when the time comes, we will find our answers together. He needs to know that his church welcomes him with open arms, no questions asked.

Miracle stories are not meant to exclude, but to give in examples of a power outside of ourselves, which leads us to heart-healing wholeness. I stopped measuring my life by a skewed standard of perfection and redirected my thoughts to fulfillment. I throw away the lies that people taught me at a very young age and embrace the truth that “I am fearfully and wonderfully made” (Ps. 139: 14 NRSV). I, my children, all of us are complete, precisely as we are.

I began to look at the scriptures and realized that while miracle stories pop up throughout Biblical narratives, one thing is clear, the primary purpose of life is not to search for an instant healing, but to be made whole. We are survivors, not because we receive some medical or divine intervention. We are thrivers because we plug into the source, where our souls receive strength. The benefit of finding a place to recharge your battery gives you a chance to think through decisions, take the focus off hemophilia for a moment. Be still and rest.

Another thing I learned about myself is that I am not willing to remain in a group if my children cannot participate as complete human beings. Just because someone does not experience an extraordinary act of God, does not mean they are any less critical in the world. My stinky boys know that nothing will stand in the way of my loving them. Miracle stories or not, the deep foundation of love and trust outweigh anything. The depth of faith, found at the headwaters of love, reaches to the core of our beings.

And so, I finish my conversation with “MacDonald the Younger and MacDonald the Older,” hoping that they know that I love them beyond all measure. I invited my oldest son into a sacred conversation to tell him that his voice matters. Maybe the greatest miracle is not found in an ancient holy text, but the overwhelming joy that these extraordinary men bring to my life. Real miracles are not only left for people to see, but also for people to experience within their souls.