My husband, Jared, recently decided to stop cooking after he was injured during an epileptic seizure. It was a hard decision because he enjoys cooking, and food brings him genuine happiness. He enjoys preparing the ingredients for our daily meals. In his free time,…
Columns
Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the exhibits, and other benefits that come with traveling to another city. But I like the opportunity to hear great thinkers in…
A couple friends came over for lunch last weekend, and one started talking to my youngest son, Caeleb, who is 14. Caeleb and I were both confused by this, because the conversation didn’t make sense. I realized that my friend had mistaken Caeleb for my older son Julian, who is…
Monsoon season has begun here in the Philippines. Every time I drive in downtown Manila, I’m reminded of a family trip last year to Tagaytay, a popular tourist destination. My husband, Jared, and I wanted to get out of town for our first anniversary, but the trip turned out…
Our Virtual Connectedness
As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from dear friends who struggle with medical issues like mine. Why then do I find it hard to take advantage of…
When people find out my sons have hemophilia, their reactions often make me uncomfortable. “You are so brave, Cazandra,” one might say. “I don’t know if I could do it,” another might add. Friends and family members often place me on a pedestal by saying that my strength and courage…
My husband, Jared, has had hemophilia since he was born. He has known no other life than one with a bleeding disorder. And that is why he does not consider hemophilia to be his “worst enemy.” Instead, he considers epilepsy his greatest foe.
I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the fact that they are human beings who have hemophilia. I never want my sons to think that their whole person is…
School is about to start — at least that’s the plan as of this week. With such havoc in our world, plans for students to return to school are ever-changing. My 14-year-old son, Caeleb, will enter high school this fall. His school has a plan for three groups of…
Last week I hit a significant personal milestone. In order to keep myself mobile and healthy, I ride a recumbent indoor bike — a lot! I used to ride over 100 miles a week. Riding my bike has kept me and my joints healthy. It’s also helped…
Recent Posts
- January’s reset means the system restarts, but our bodies do not
- People with hemophilia face 46% higher risk of bone fractures
- It’s important to find moments of joy amid the darkness of hemophilia
- With hemophilia, time went from standing still to flying by
- An unsettling dream reinforced the importance of building connections