Hemophilia taught me to step away in times of stress
Taking a break helped me manage anxiety-filled moments with my sons
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My house is on a cul-de-sac, and right behind my street is undeveloped desert leading up to New Mexico’s Organ Mountains. I love walking on the trails in the open area whenever I feel stressed or anxious. Even when my struggles feel overwhelming, making my way through the otherworldliness of New Mexico’s high desert clears my mind. I smile when I remember that disconnecting is a coping strategy I learned from raising two sons with hemophilia.
As their father and caregiver, I know what it is like to feel trapped and hopeless. When they were younger, I watched my boys struggle with something I’d never experienced. I could only ask them to describe what an internal joint bleed felt like.
My youngest son, Caeleb, said, “It’s like 10,000 needles poking your skin at the same time. They don’t stop. It feels like it happens over and over again.” My heart sank when I heard his answer. I felt helpless, as I couldn’t do anything to relieve the pain. But as horrible as I felt, I knew that carrying my baggage into the situation would only make it worse.
The gift of stepping away
I learned to step away from anxiety-filled moments when my oldest son, Julian, developed a horrific fear of needles. Initially, my anxiety would match his, and the situation would spiral out of control. I realized that taking a short break could reset my mind, change my attitude, and help me grasp my feelings, allowing me to be the advocate and father my boy needed.
It also gave Julian a chance to settle down. I couldn’t fault him for wanting control over his own body, so I learned to trust him to let me know when it was time to infuse. At first, it took much longer to treat him, but over time, he resisted less.
One day, when he was 6, we were ready to start the infusion process when he put his hand out and said, “Dad, I’m not going to cry when we infuse, because first graders do not cry and wiggle when they get infused.” Julian kept his word, and we had no problems with needles after his transformation. I congratulated him on overcoming his difficult struggle.
Learning what lay at the heart of my anxiety
Finding ways to empower my sons did not happen overnight. I spent a lot of time feeling like a failure and a bad father for not doing more to help them. Taking small pauses helped, but it did not cure my anxiety. What was causing my mind to go into fight-or-flight mode?
One day, I realized that my anxiety stemmed from fear. I was afraid that I could not infuse my son and that my lack of ability would create medical problems that could lead to a serious injury. My mind would start to spin as I lost control. I kept thinking, “What if I fail my son?” My anxiety gave way to absolute panic.
When times got incredibly rough with Caeleb, I remembered how I calmed down to help Julian. If I left the situation briefly, I could return and provide the assistance my son needed. This idea proved to be the first step to healing for me as I developed tools to overcome feelings of anxiety.
Some days, my walks in the desert last for an hour, while at other times, I barely make it 2 feet. Whatever the length of time, it is enough to guide me back to a peaceful mind. The trick is to stop guessing how long it may take to find renewal. Take the journey and find rest.
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 consult your physician or another qualified healthcare 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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