What does an illness look like? Sometimes a bald head, pale skin, or a mobility device are outward signs that someone has an illness. People would never know my sons have hemophilia by looking at them today. My oldest son, Julian, is 24. He lives on his own,…
Hemophilia 24/7
— Cazandra Campos-MacDonald
Rev. Cazandra Campos-MacDonald is a pastor, author, motivational speaker, and encourager. She lives in New Mexico with her husband, Rev. Dr. Joe MacDonald, and youngest son, Caeleb. Their adult son, Julian, is living the bohemian life of a starving artist and goes wherever there is an audition. Her sons live with severe hemophilia A and inhibitors. Her older brother died shortly after birth due to complications from hemophilia. Cazandra writes candidly of raising two sons with a rare bleeding disorder. She believes storytelling is about redeeming the journey and connecting with others.
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Easter Sunday was wonderful. The pipe organ at our church hadn’t worked in four years, but thanks to generous donors, it was finally restored. We revealed it on Easter with a brass quintet and choir, and the music was truly beautiful. As a classically trained oboist, I am deeply…
A new year is always filled with possibilities and hope. After living through 2020, most people are looking forward to what is yet to come. While I am not one to make resolutions, there is one thing I will be working on this year. It does not involve me,…
Immunizations are sometimes tricky when a child has a bleeding disorder. The shots can cause bruising and swelling at the injection site, or even a muscle bleed. Each person is different, but nevertheless, precautions must be taken. When my children needed immunizations, I always gave them a dose of…
The coronavirus is turning lives upside down. A good friend recently tested positive, and when they told me, I was uncertain about how to respond. Should I say I’m sorry? That they will be OK? Not to worry? Knowing what to say isn’t easy. It reminds me of when…
Many people see spring as the season for cleaning. Winter months call for homes to be closed tightly to keep the heat in and the winter chill out. Spring allows for the opening of windows to clean the soot and grime that accumulates over the colder season. I normally do…
People are suffering. The country is divided. States are imposing limits on items that may be purchased, and businesses are closed. If there were ever a year to skip Thanksgiving, this would be it. At least, that is what some people think, but I am not one of them. It…
Exhaustion, stress, loneliness, and boredom are a few symptoms of living in our current world. Some people easily adapt to new ways of moving in the world, and others have a more difficult time. What is amazing is how the rare disease/disorder community seems to move forward without skipping a…
I have struggled with anxiety and depression since my early 20s. Fortunately, my mental health is in excellent shape thanks to medications and therapy. These two aspects of care are necessary for me to be the best person I can be, not only for my family but also for…
There are some very fortunate people who do not experience illness. They often come from families who rarely even catch the common cold. Then, there are those of us who know all too well how illness can affect a family. My mother suffered from several chronic conditions when I was…
Rarely am I the first to raise my hand in a class or give my opinion before others have shared. I do not want to look foolish or ask a dumb question. Most of the time, the question I held back was the same question others asked. I always seem…
I am a fierce advocate for my sons. I question doctors professionally. I say no and ask for other options. I have even found new research and treatment options to offer physicians. I do not give up and even risk being known as one of those moms. If I…
The terrible, awful, no-good, very bad year for my family is not 2020. It was 2013. My youngest son, Caeleb, spent most of that year in the hospital. In 2013, Caeleb, who was in second grade, missed about 70 days of school due to recurring bleeding in his…
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