Laughing Amid Stress Gives Perspective to Caregivers
I love a good laugh. When things are terrible and the world seems to be imploding, a well-timed joke or story can completely change the direction of the day. I am grateful to live in a home that is filled with love and laughter. I can count on my husband and sons to always give me a pick-me-up with their silliness and humor. In the middle of the worst of hemophilia, my family manages to find the humor in it all.
When my firstborn son, Julian, was diagnosed with severe hemophilia A, or factor VIII deficiency hemophilia, shortly after birth, I thought the world would end. A rare diagnosis was not the plan I envisioned for my family, but I forged ahead with my husband to make sure we learned everything possible about this bleeding disorder. Slowly but surely, we learned how to care for Julian and were very cautious. We watched as bruises appeared, confirming that my son had a bleeding disorder. We waited and hovered, hoping not to miss the signs of Julian’s first bleed. It was a stressful time, but somehow my husband and I managed to find joy amid the chaos of hemophilia.
My husband and I did our best to make the process of finding a vein, mixing blood clotting factor, and sticking him with a needle as normal as possible. For a hemophilia patient, infusing is as much a part of life as brushing your teeth.
Learning to infuse our son with the clotting factor was difficult. We relied on a home health nurse to help because Julian’s veins were difficult to find. I even practiced looking at his arms and feet with a tourniquet in place to see if I could identify the best possible areas to infuse, but it was not easy and I got frustrated often.
But then, one day my husband did something that changed the way we approached infusion time.
One day, Julian was not being very cooperative as we prepared his infusion. Now, my husband has a knack for changing the lyrics to songs. He has ruined plenty of songs for me, and these songs make me smile and laugh. On this day, my husband broke out in his own variation of the popular Spice Girls song, “If you wanna be my lover, you gotta get with my factor!” Julian, who loved the Spice Girls as a toddler, did not understand the change in words, but a smile crept over his face and he giggled.
Now we had an outlet to help us deal with infusion time. Bringing music into it helped everyone smile and laugh and got the stress levels down tremendously. Another song we co-opted for infusion time was Carly Simon’s “You’re so Vain,” which became “You’re so Vein,” and the oldie, “I’ve Grown Accustomed to Your Veins.”
I’m grateful for not just music, but for the fact that my husband and I can find joy and laughter in the bad times. It is OK to laugh when things are not going well. It helps to put life into perspective. May we find joy in the midst of sadness, hope amid fear, and have many moments to laugh until we cry.
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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.
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