Different approaches in hemophilia care can lead to the same goal
My husband, Joe, moves slow and takes one thing at a time. Not me.
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As we approach our one-year anniversary in our home in Las Cruces, New Mexico, I want to spend more time on our beautiful, shaded back patio. We just got a new flat-top griddle, which works like a big cast-iron skillet. It’s great for everything from eggs and pancakes to veggies and steaks.
My husband, Joe, and my son Caeleb were excited to open the box and start putting it together.
Joe enjoys putting things together, whether it’s furniture or electronics, and he’s always very careful and organized. He reads the directions and lines up all the screws and knobs. Caeleb is the opposite. He just glances at the instructions and starts building, hoping it all fits together. As soon as the unassembled grill went into the garage, I knew exactly what was going to happen. I decided to head inside the house.
How we approach hemophilia care
Watching how differently Joe and Caeleb approach a project reminds me of when I cared for my sons with hemophilia. Julian, 29, and Caeleb, 20, both have severe hemophilia A. Caeleb also has an inhibitor, which, in hemophilia, are antibodies that thwart clotting factor treatments.
Caeleb spent a lot of time in the hospital. Sometimes he was there for just a few days, other times for weeks, so doctors could manage his pain and help reduce the swelling in his knee or ankle. These hospital stays always disrupted our family’s routine.
Joe was working as a pastor, and Julian was still in high school and couldn’t drive yet, so I was thankful my job let me work from home. When the hematologist would tell us to head to the hospital, I switched into crisis mode and started my usual routine.
Packing up the essentials — chargers, snacks, clothes, pillowcases, Caeleb’s favorite toys, and my rolling briefcase — became second nature to me. But my mind always raced to all the “what ifs:” If Caeleb isn’t discharged until Monday, I’ll need to stay at the hospital so Joe can lead worship on Sunday. Then he can take Julian to school. I have a business trip on Wednesday, so I’ll need someone to help get Julian to school while Joe is at the hospital. If Caeleb has to stay in the hospital longer, I’ll need to ask the ladies at church if they can pick Julian up from school and maybe bring him a meal.
My “mom mind” would run through all the possible scenarios, and I could feel my heart pounding. Joe, on the other hand, would focus on one thing at a time and take it slow. He sometimes got frustrated with how quickly I moved, but after we got through the hospital admission, he always thanked me for making sure everyone was where they needed to be.
I’m not saying I’m always right. Sometimes Joe’s calm and steady approach is exactly what we need to get things organized. My passion and emotions can sometimes get ahead of what needs to be done next.
I’m grateful to have a partner who helps keep our home balanced. We sometimes get on each other’s nerves, but after 37 years together, we know we’re both working toward the same goal. Getting Caeleb to the hospital and helping him through his needle phobia was stressful, but Joe had the patience to guide him through each port access. When Julian needed help while traveling, it took both of us.
In the end, it comes down to one thing: Taking care of our sons is truly a team effort. Whether you’re getting ready for an emergency hospital stay or just putting together a grill, remember that everyone handles situations in their own way.
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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