Finding Love as Our Respite During Tough Times

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

I will never forget the years when my youngest son lived in the hospital more than he did at home. The stress that we felt as a family threatened to break us and wear us down. Date nights with my wife gave way to tending to emergency medical needs. There seemed to be no time to reconnect as all our energy focused on balancing schedules, work, and emotional health. Respite seemed like a faraway dream.

My longing to spend time with the love of my life overwhelmed me. My wife and I are best friends, and the lack of connection with her especially left me feeling isolated. I felt like a tightrope walker without a net. At any moment I might lean in the wrong direction and fall to the ground.

Fatigue set in as we seemed never to catch a break from the ravages of internal bleeding episodes stemming from hemophilia complications. Pretty soon, we looked like caricatures of ourselves as the stress of attempting to remain present with our son, balance the demands of our jobs, and find time with each other overwhelmed us. Loneliness because of our medical situation felt almost too much to bear; hope seemed to dim as time kept dragging on.

I kept thinking, “Soon this will end,” but no relief came.

Recommended Reading
non-viral gene therapy | Hemophilia News Today | illustration of mice in lab

Cell-based Therapy Shows Promise in Mouse Model of Hemophilia A

One Valentine’s Day, in one of our roughest times, my soul needed to rediscover my fantastic partner for life. Determined to find a moment of connection, I packed a CD player and one of our favorite songs and went to the hospital. I plugged in the player, looked at my wife, and asked her, “Will you dance with me?”

We stood in the middle of the hospital room and swayed to the beat of the music. I felt my wife’s head gently rest in the nape of my neck, and all seemed right for a moment. We focused on each other and gave thanks for small moments such as these. As tears filled our eyes, we rediscovered our love for each other. We remembered that although hemophilia can sometimes steal our joy and leave us weary, we still have each other.

I look at those moments as set apart and sacred.

Chronic illnesses can rob us of many things, and if we are not careful, they may blind us to those we love. We must find moments to dance, connect, and find restoration during the rough times. After our sacred time, I made a vow to find special moments of holiness that could rain down on us to rejuvenate our souls. We cannot find rays of light without first turning on a flashlight. Hopefully, the beams bring us together and remind us that our journey must include those we hold dear.

The ravages of disease leave their mark, but the presence of loved ones overcomes the scars in a weary world. So let us move forward to rediscover hope found in the eyes of our children, the love in the eyes of our spouses, and faith that the worst situations come to an end. Investing in our life’s greatest treasures yields excellent dividends. No amount of money replaces the great work of restoration as we feast on the hope found in our most precious resource, the love of our family.


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.

Comments

Leave a comment

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