There is no shame in raising the white flag when caregiving challenges become too taxing. The white flag, an international symbol used when someone seeks a truce or ceasefire, usually is the last recourse after a long list of possibilities has been exhausted. For a parent or caregiver, it…
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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Packing my lunch is necessary because my schedule as a hospice chaplain can change quickly. I keep food and drinks in an ice chest in my car because it can get hot here in New Mexico. When I get a call to see a patient whose passing is imminent, time…
Rap sessions are common at bleeding disorder conferences. During these group discussions, people come together to talk about similar interests, such as a new diagnosis in the family, inhibitors, or what it’s like being a hemo parent. Facilitators help the participants ask questions of one another and have meaningful…
My youngest son, Caeleb, recently turned 15. A celebration with his favorite dinner accompanied by homemade chocolate-peanut butter cheesecake ushered in another year filled with goals and dreams. After Caeleb blew out the candles, he looked up and said, “In three years I’ll be out of the…
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,…
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…
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