The senses of sound and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding doors of the hospital can take you into a place where nothing but painful memories linger.
I recently walked into the local children’s hospital to visit a friend’s son. I had not walked into that building in over a year, and the first steps through the entrance brought back bad memory upon bad memory within an instant. I had no idea that simply walking into the building would spark so many emotions. When my youngest son, Caeleb, was in first and second grade, he spent more time in that hospital than at home and school. I remember the long nights when his knee or ankles were swollen, hot, filled with blood, and no amount of factor seemed to help. His inhibitor was at its best and fighting it off was a constant battle that we seemed to not win very often. Morphine would take the edge off the pain for only a short amount of time and until he could receive another dose, the only thing that would help was ice and distraction.
Hearing my son screaming in pain broke my heart, but after a while I became a little numb. The only way I could get through hearing and seeing my son suffer was to focus and think about the next right thing. “Change the ice water in the Cryo-Cuff, keep it on for 20 minutes, elevate his knee, where is the urinal, is it time for Morphine?” I would lay beside him and we would look at the pictures in my phone. We made up stories for each picture that would transport us for short periods of time with our imaginations running wild. And when the stories no longer worked, we would turn on music or sing. I vividly remember singing “Jingle Bell Rock,” in February. The nurse walked in, smiled and started to sing along with us. And once my mighty warrior fell asleep, the beeps and whirrs of the machines and the bubbles from the water for the oxygen would lull me to sleep, even in only for a short time. Then the sun came up and a new day brought possibilities. For the past two years those hospital stays and bleeds have been a distant memory, for which I am extremely grateful. The power of the smells and sounds of a hospital bring back not only the memories of the long days and nights, but also the feelings of hopelessness.
As a mom, I want nothing more than for my sons to be happy and healthy. Although, when they have an inhibitor, I find myself sometimes hoping for “just hemophilia.” “Wouldn’t it be great if we only had to infuse a few times for a bleed? Wouldn’t it be great to only infuse three times a week?” Everyone’s journey with a bleeding disorder is different. No one should ever compare their issues to another, but sometimes the grass looks greener for others and it’s hard to not want different circumstances.
Those memories that flooded my soul were reminders of what was. We are in a better place and my mighty warrior is in school and thriving, and for that I cannot begin to put into words how our lives have changed. In an instant, he could be back in the hospital with an inhibitor that is out of control and that’s when I’ll be right alongside him with my bag of tricks loving him through the worst and the best.
Cazandra lives with her husband Joe, and 20-year-old son, Julian, and 10-year-old son, Caeleb, in New Mexico.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.