I think about my daughter’s future a lot, especially now that she’s getting older. At 5 and a half, she’s just finished senior nursery and is headed for big school in a month. She’s skinny and nimble, having lost most of her baby fat except for her cheeks. She loves…
Lately I’ve been pondering how to achieve long-term happiness and fulfillment while managing finances and chronic illnesses. My husband, Jared, battles hemophilia B and seizures while I manage attention-deficit/hyperactivity disorder and bipolar II disorder. Receiving Jared’s medication through humanitarian aid is a blessing, yet its consistency isn’t…
This past week has been a whirlwind of activity for our family. My husband, Jared, who has severe hemophilia B, experienced a knee bleed that required careful management. But that didn’t stop him from fulfilling his responsibilities around the house and making progress with his budding bottled food business.
Good mental health is crucial for caregivers of people with chronic illnesses. As a wife to someone with severe hemophilia B and epilepsy, I’ve seen firsthand how mental health matters to both patient and caregiver. I have to balance my husband’s needs with my own physical and…
Last month, my husband, Jared, and I enrolled our daughter in a new school. She’ll start kindergarten in a few months, which marks the beginning of mandatory schooling here in the Philippines. Although her current school is decent and she’s a beloved student there, we felt she might thrive more…
In the age of “cancel culture,” where snap judgments and public shaming abound, the journey from stigma to compassion is often fraught with challenges. I live with attention-deficit/hyperactivity disorder and bipolar II disorder, am a wife to a person with hemophilia, and formerly co-owned a business run…
In a recent conversation with my husband, Jared, he dropped a bombshell. If he were given the chance to be rid of hemophilia entirely for the rest of his life, he said he’d hesitate to take it. He’d actually miss his current life with severe hemophilia B. My…
My husband, Jared, and I have written about the limited supply of clotting factor IX in the Philippines, where we live. Lately there’s been a greater shortage of that factor, which treats hemophilia B patients such as Jared. That cast a shadow over our hemophilia community’s recent annual…
I recently came across a thought-provoking video featuring Betty Reid Soskin, a remarkable 102-year-old woman with a unique perspective on marriage. Throughout her long life, Soskin has embraced various roles, including daughter, wife, mother, casual songwriter, and, perhaps most notably, a ranger with the National Park Service until…
My favorite band, Fall Out Boy, has a song titled “The Kintsugi Kid (Ten Years).” Now that I think of it, my husband, Jared, and I celebrate 10 years together this April. In my eyes, he’s the “OG” Kintsugi Kid. Jared once wrote an article for…
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