My husband, Jared, and I are quiet, introverted people. We’re both averse to noisy crowds and overstimulating activities. Our idea of a good time is immersing ourselves in hobbies or getting away to a weekend nature retreat. Although my Myers-Briggs Type Indicator is ENFP, a personality classification that stands…
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The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal. The only difference between my son and the boy next door was the…
Before cellphones, memorizing phone numbers was a necessity. Racing home to make a phone call on the landline was how I made plans with friends and scheduled appointments. With smartphones, I can make a call with the touch of a button, no matter where I am. Although I no longer…
My husband, Jared, has a complex medical situation: He has severe hemophilia B and a seizure disorder, which both greatly affect his daily life. He recently started online consultations with a psychologist, a psychiatrist, and a neurologist to help him work through his seizure disorder, which was caused by a…
In two months, my oldest son turns 25. After the initial shock that he is reaching a milestone birthday, I realized that next year proves crucial in terms of insurance. I currently cover him with my benefits package, but starting at 26, he must provide coverage for himself. He…
My dad’s life was incredibly difficult. He was in pain all the time and misunderstood by others. He grunted and grumbled, and walked with an exaggerated limp. People thought he was a hypochondriac who wouldn’t stop talking about his ailments. Some found him interesting, others thought…
My husband, Jared, and I run an online jewelry store. Over the years, the fact that our store is run by persons with disabilities (PWDs) has become one of its main selling points. We’ve had fellow PWDs and advocacy supporters speak to us and purchase items. They mentioned that…
As a caregiver, hope exists in practically my every waking thought. I wish for things to improve regarding my loved ones’ treatment. Hope keeps me going so that I may provide the best care possible for them. Four simple letters put together in the proper order set my heart and…
I have guaranteed quality time with my youngest son, Caeleb, who is 15 and has hemophilia, every Sunday morning. He comes with me to the church where I serve as pastor, and he video records the service each week. Our commute is 40 minutes one way, and in that time…
I recently scheduled a consultation with a psychiatrist after years of trying to manage my mental health without professional help. Since I was a teenager, I’ve dealt with chronic mental health issues that manifested in bothersome ways. In the past, I had difficulty sleeping, disordered eating, and fluctuating moods. I…
Recent Posts
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?