One of my favorite educational philosophers is Ruby Payne. Payne focuses on the unwritten rules of social classes and how various groups respond to and receive information. Payne suggests that the ways we communicate our needs depend largely on our environments. In other words, we are a product of…
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My mighty warrior, Caeleb, has been in great health for the past five years. Five years of the occasional ear infection, strep throat, or allergies, but no bleeds. In the community where we’ve lived for the past 15 months, my son is seen as a regular eighth-grade boy. Many know…
Life Between Peak and Trough
One of the challenges for individuals with hemophilia — whether severe, moderate, or mild — is bleeds. Often people with hemophilia will struggle with bleeds into their joints. The bleeds are painful and limit mobility. If left untreated, they can cause long-term damage, such as arthritis.
I lost some money today during an online transaction. It was 3,150 Philippine pesos (around $60). The amount was a client’s payment for a product she had bought from our online jewelry store. That store is our bread and butter. Currently, we are struggling due to the celestial prices of…
Last week, I read Gill Paul’s latest novel, “The Lost Daughter.” The book is a historical fiction account of Russia’s Romanov family. It is well-known that the Romanovs and hemophilia are connected, but I had no expectation that bleeding would play into the plot. Near the beginning of…
Let Us Cross the Bridge
A few years ago, my family and I attended an inhibitor symposium in San Francisco. While the conference was jam-packed with incredible information, we did have a little free time to explore the city. Fisherman’s Wharf had great food and beautiful views of the harbor. We stood on a…
As time passes, I can feel both the joys and the pressures of fatherhood. My life has centered around our daughter’s needs and ensuring that she is always happy and smiling. Friends have instructed me on the importance of fatherhood. So many problems are caused by weak father figures. Often,…
My 13-year-old son Caeleb has had five years without experiencing any bleeding episodes. He developed an inhibitor at 11 months old, which is still active. Sometimes I find it hard to believe that he has been in such a good place with his health in recent years.
When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known as a hiker, a cyclist, and (for very short stints) a beach jogger. I smile a…
The smell of rubber. The clanging of metal plates against one another. The sight of sweaty bodies heaving, struggling. Towels slung over shoulders. Muscles popping out of the chiseled physiques of a couple who walk through the place like a king and queen (fittingly, as they are its owners). Jared…
Recent Posts
- A recipe of support for parents new to a hemophilia diagnosis
- New CAAR-T therapy may eliminate hemophilia A treatment blockers: Study
- A little reminder about how to pay better attention to bleeds
- When ‘difficult’ shoes make life with hemophilia easier for my husband
- Growing up before treatments for hemophilia were safe, part 3