An Overwhelming Turn of Events Brings Fear for My Son’s Future

The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal.

The only difference between my son and the boy next door was the medical procedure “MacDonald the Younger” practiced every day. He also had a port-a-cath to make accessing his veins easier.

Each year, we saw steady improvements in his mobility and felt like we were living the dream. My son’s ability to be active and participate in school activities proved liberating, and I began to think to myself that all the yucky stuff lay far behind us.

A couple of years ago, I received a frantic call from my son. He was in the marching band at his school, and during practice, he felt surging pain coming from his right knee and ankle.

During his early years, painful bleeds into the two joints left him immobile. He depended on a wheelchair and crutches for several years. When the bleeds ceased in 2014 and he received physical therapy to help with mobility issues, his quality of life improved dramatically.

Although he no longer suffers internal bleeding, the damage done during spontaneous occurrences has had lasting effects on his knee and ankle.

Last week, I walked into his room to make sure that he woke up in time for school, and saw an ominous reminder of how he had struggled as a younger child. He sat on the side of the bed in pain. His ankle and knee hurt, and he could not get dressed and ready to start his day.

At that moment, I wanted to scream, not at him, but at hemophilia itself. I wanted to shout, “You are done inflicting pain on my boy. He went through enough during the rough hospitalizations of his youth. Why must you continue to inflict pain on him?”

I calmed down and tried everything I could to help him prepare for his day. I made breakfast and took it to him in the hopes that he would eat, take some pain relief medication, and be ready for school. Unfortunately, the damage from years of internal bleeding won out, so he participated in online schooling.

I tried to fight the pain off, but it proved too great a competitor. The disease knew how to attack my son and hit him right where it hurt. In the end, we raised a white flag, knowing that our opponent had risen victorious. We conceded, knowing that we may have lost the battle, but not the war.

As I made sure he signed into his classes, I could not help but think, “When does this end?” I felt that all he needed to do was find the correct medication, and voila! All of his issues would cease to exist. No one told me that more struggles would ensue as we continued our journey to recovery. My naiveté had to fight another battle.

Hemophilia never gives up, but the good news is that neither do I. My son will continue to do whatever he can to improve his situation. As he struggles, I remain right beside him, eager to walk with him on this exceedingly tricky journey.

As learned from lessons past, we must continue forward and equip ourselves with whatever information we gather to enhance my son’s quality of life. With every fiber of my body, I believe that we will get through this rough patch and return more robust than ever.

I hold on to one of my favorite Bible verses, “I praise you because I am fearfully and wonderfully made” (Psalms 139:14 NIV). Filled with the reassurance of purpose, we continue moving forward.

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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.