Trying to Let Go of Reminders of Past Struggles
Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a few days until I finally gave in and started unpacking. It was a monthly feat.
With the advent of Hemlibra (emicizumab-kxwh), the amount of packaging and supplies was significantly reduced. One small box each month is the equivalent of at least 10 large boxes in past shipments. Simply tearing down the cardboard boxes and throwing away the packing peanuts resulted in an enormous amount of trash.
Before Hemlibra, I had designated a basement closet to house all factor and supplies. Inside the closet were tall, stacking, plastic drawers that kept everything orderly. I could easily take inventory and make note of needed items. I learned early in my journey of raising two sons with severe hemophilia that organization was key to coordinating their care — especially since their treatment plans were very different.
In my current home, there is no room for a separate closet for factor and supplies. Everything my youngest son, Caeleb, needs for his monthly Hemlibra injections fits into a small box on the baker’s rack, with two boxes of the medication in the refrigerator. It is that simple.
I spent quite a bit of time going through old supplies. I had a drawer full of dressing change kits, more 60 cc syringes than I could use in a lifetime, and an obscene number of alcohol swabs. I found a veterinarian who took various syringes, and I donated the majority of my supplies to a church mission team doing medical work in Juarez, Mexico. But what about the drawers?
The drawers are stacked in the garage and coated with a film of dust. The weight of the items sitting on top pushes the drawers down, forming a depression in the middle. To open the top drawer, one must manipulate the depression by pressing up. They are only opened when my son is searching for a mask to wear to school.
There are still some syringes, alcohol swabs, a variety of braces, stretching bands, and odds and ends in the drawers. I hope I can get to the point where I feel comfortable emptying the contents and saying goodbye to them. I’m just not ready.
For whatever reason, the drawers remind me of old times that aren’t necessarily worthy of reminiscence. They represent what hemophilia looked like and remind me that the condition is still part of my life. That will never change.
The drawers symbolize years of pain and struggle. The chaos of caring for two sons with hemophilia is wrapped up in them. Part of me thinks that when the drawers are gone, hemophilia may become more prevalent in my life.
I am getting closer to removing the drawers permanently. I hope that my sons will continue to experience ease in caring for their bleeding disorder. Sometimes it’s good to keep little reminders of what used to be close at hand.
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.