I Stand Beside My Son as He Battles Hemophilia

Joe MacDonald avatar

by Joe MacDonald |

Share this article:

Share article via email
chronic pain in children | Hemophilia News Today | Main graphic for column titled

When my oldest son was 2 years old, he came up to me with a serious expression and said, “Dad, this monster slapped me right in the face.” I told him I had some monster spray in my room and would ensure that his room no longer contained any strange-looking creatures anxious to inflict bodily injury.

He didn’t realize he had dreamed this horrific event because the beasts seemed real to him. He came to me because he knew that if anyone on the planet could help him, it was his daddy.

Recommended Reading
Roctavian | Hemophilia News Today | illustration of bottle with the label

Phase 4 Trial of Ixinity for Pediatric Hemophilia B Is Fully Enrolled

My son’s description of his dream often rang true when he was dealing with the effects of a breakthrough bleeding episode. Sometimes it feels like a giant monster has come to ravish our lives when a problematic medical event occurs. We feel beaten up, slapped in the face, and knocked entirely off balance. We turn to our medical team and loved ones to regain a sense of peace and wholeness. Together, we depend on our tribe to slay our giants, whether they are medical or personal.

In my son’s life, I serve as caregiver and dragon slayer. I offer support in times of need, and advocate with the strength of a ninja warrior when trouble arises. He needs to know that I am in his corner, ready to come to his aid at a moment’s notice. Battles against hemophilia are often fierce, but he knows that he is not alone in his war.

I stand, shield in hand, ready to enter the frontlines of combat against an enemy that never surrenders. Together, we pledge to defeat the beast by thrusting our greatest weapon, factor VIII, at the ferocious competitor. Our approach allows us to soundly defeat the adversary and send his men running for shelter. Today, we claim victory over our foe. The monster suffers defeat at the hands of our clotting agent.

My son, “MacDonald the Older,” is 25 years old now, but he still needs someone to walk into battle with him when times get tough. I stand with him as I did many years ago, ready to help him at every turn. The monster’s image may change, but the people he turns to for support remain confident and steady. We do everything in our power to provide my stinky boy with a quality of life that he could never imagine on his own. Our fearlessness gives way to strength and hope for a brighter day.

Let us go into battle, ready to protect ourselves from the ravages of breakthrough bleeding episodes with strength, knowing that an army of love will provide support in a time of need. No matter their age, our loved ones know that hope and heart surround them on their journey, and that they never face a struggle alone. We stand beside them, around them, and over them, lending our support when needed. Our strength pulls loved ones through the roughest of circumstances and into the brilliance of another day.

At the end of the adventure, I take a verse from Psalm 139 and remind my sweet man-child, “Remember, you are fearfully and wonderfully made.” My son, you are worth every battle we must face simply because of who you are. Through my display of strength and belief in his abilities, my son continues to grow in confidence and wisdom. I hope he never faces a day in his life without knowing that I love him with all my heart.


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


Leave a comment

Fill in the required fields to post. Your email address will not be published.