My faith reminds me to move forward through the dark times
Reaching the Easter experience of hemophilia, when we're able to celebrate
In my faith tradition, next week is known as Holy Week. We remember the days leading up to the Crucifixion of Jesus, his burial, and his Resurrection. Each day we remember certain aspects of his journey to the cross.
The Sunday before Easter, we celebrate Jesus’ triumphal return to Jerusalem as we remember that people waved palms and spoke joyously beside him. On Wednesday, we observe Passover Seder, which many believe was the last meal Jesus ate with his disciples. After that event, we remember his trial on Maundy Thursday, followed by his Crucifixion on Good Friday. Holy Saturday, we pray, and Sunday, we celebrate Jesus’ return from the grave.
I feel anxious about starting Holy Week each year because it’s the darkest time of the Christian tradition. I want to skip over the horrible stuff and head straight to Easter, when the atmosphere is celebratory and joyful. But unfortunately, I know I don’t have magic wings to propel me into the future. I know that to get to the joy of Easter, I must walk through the darkness.
Going through rough times is not always easy. I remember the hopelessness I experienced as a caregiver during the turbulent times of hemophilia. My body often reacted to the uncertainty of medical treatment as my boy lay in a hospital bed screaming in pain. I wanted the horror to stop, but knew I had to wait patiently. I kept telling myself that my boy’s medicine would bring him relief soon, but I had to sit with him in the darkness of pain until we made it to the light.
As a caregiver to my terrific sons, both with hemophilia, I’d gladly trade places with them. I asked my youngest son, Caeleb, what it’s like to experience an internal bleeding episode, and he responded, “Dad, I feel like many sharp needles pierce my skin simultaneously. It happens repeatedly and never stops until factor VIII takes effect.”
Hearing Caeleb scream in uncontrolled agony during the roughest parts of an internal bleeding episode proves overwhelming for him and me. He must fight through the physical aspects of the pain while I endure the reality that I’m powerless to help him.
I try to help distract his attention from the horrible situation by building Legos, reading stories, or watching television. Sometimes I’m successful, while I lose the battle other times. But always his daddy stands beside him, ready to carry him to the other side. The one thing I know I can do is hold his hand and do my best to walk through this time with the harsh symptoms of his rare bleeding disorder. He may have to walk through the dark, but he doesn’t have to do it alone.
I give in to the fact that he must endure the brunt of those sharp needles he’s feeling. Until the bleeding ends, the pain doesn’t stop. But I believe my presence helps. I walk the journey with Caeleb, even when we can’t see where we must go. I believe we travel through the unpleasantness to embrace the light at the other end of the tunnel.
And so, as we begin Holy Week this Sunday, let’s all remember that regardless of our faith tradition, we travel with our loved ones through the darkest times of our bleeding disorders. We thank God for making it to the light. Our community is used to getting through the difficulties of this disease so we can celebrate when the relief comes. We stand by our loved ones and thank them for their incredible spirit and perseverance through the roughest circumstances.
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.
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