As a caregiver, hope exists in practically my every waking thought. I wish for things to improve regarding my loved ones’ treatment. Hope keeps me going so that I may provide the best care possible for them. Four simple letters put together in the proper order set my heart and mind on a trajectory that fills me with joy. When the road appears rough, it is the hope for a brighter day that propels me forward. It becomes my mantra as I face difficult days with an uninvited chronic illness.
Hope is the thread that weaves itself through my family’s story. In dark times, we search for a spark of rejuvenation to give us strength for the journey ahead of us. We take one step at a time, hoping that light pierces the darkness, and we live to see another day that promises to provide us with freedom and a rejuvenated spirit. We move forward, depending on a four-letter word that brings unimaginable power. Its mesmerizing strength captivates us and holds us in its grasp, leading us to quiet waters.
Many years ago, when my eldest son was a child, he suffered anxiety from needle sticks when infusing factor VIII for hemophilia. To find a vein to infuse while he suffered through fear proved impossible for one person. My wife and I both had to hold him still. I kept hoping that the nightmare was over and that he would no longer struggle through each infusion. Daily battles lasted for years, but I did not give up the hope that one day, things would change.
One morning, we sat at the table, and he put his arm out, as usual. I braced myself for the ensuing fight ahead. I grabbed his hand, but he stayed still. The infusion was over in a quick minute. I asked him right after we finished what had happened, and he replied, “Dad, second-graders do not cry when they infuse.” I sat watching this incredible boy, thinking that my hope fueled my strength to get to this day, which marked new beginnings.
When my youngest son struggled with the same issues, hope revealed itself to me once again, therefore laying the foundation of discovery to help my stinky boy overcome his fears. I found a way to give him power over his situation. I told him, “Buddy, when you feel ready to infuse factor VIII, please let me know by raising your thumb to the ceiling.” Sometimes it took a long while for him to put his thumb in the air, but patience proved the best way to calm him down. Once again, hope prevailed in a situation that seemed impossible.
In his beautiful poem “Choose Something Like a Star,” Robert Frost suggests the importance of maintaining our focus on something greater than ourselves during the most extraordinary times of struggle. He writes, “So when at times the mob is swayed / To carry praise or blame too far, / We may choose something like a star / To stay our minds on and be staid.”
A tiny, four-letter word offers powerful wisdom in the bleakest of circumstances. Choose something like a star, have hope, and cast your gaze to the brightness waiting to deliver us to joy.
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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