I am a sucker for routine. Spontaneity does not come easily to me because I do not like surprises. I missed routine when my now 14-year-old son, Caeleb, was younger and hemophilia seemed to be the ever-present, unwanted guest in our lives. I joked that I missed boring days. During the times when Caeleb endured frequent bleeds into his knee and ankle, my days were filled with uncertainty. Would the doctor admit Caeleb to the hospital? How often would he need infusions? What pain medications would help him? How long would the IV last? Even if he was not hospitalized and I was helping him heal from a bleed at home, the fear of not being able to control his pain or swelling was unbearable. In those moments I longed for a normal, boring routine.
When Caeleb had a good week, it meant that he was able to go to classes without the school nurse calling me during the day. I would take him to school, pick him up, get homework done, have dinner, etc. I craved routine. But even during the worst times when Caeleb was in the hospital for weeks, I managed to find a routine that helped us get through.
Life in the hospital is somewhat predictable. Nurses and technicians always change shifts at 7 a.m. and 7 p.m. I would get up and dress in the early hours of the morning to wait for the doctor’s daily visit. I made my first of many trips to the hospital deli to get my coffee and breakfast before my son would wake. If all went according to plan, I would log in to my computer to check my work emails and get a start on my day. I was determined not to let hemophilia get the best of me or my family, and did everything possible to maintain routine through the rough times.
Now that we have settled into our new home in a new town with new adventures on the horizon, I am grateful for routine. While the future of school is uncertain due to COVID-19, I am grateful that hemophilia is not the center of my home. I find routine in the normal, mundane tasks of life. Getting up each day, making coffee, going to work, cooking dinner, and spending time with my family are moments that I treasure. It is amazing how the rhythm and flow of our days can bring peace. I can find normalcy in the craziness of life and, for now, I will take the boring and mundane without complaint.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.
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