My profession as a pastor allows me to celebrate with and be a source of support to members of my church. They come to me seeking a message of hope in the worst of circumstances. And the need for peace is greater when one faces surgery. When asked,…
In the Twinkling of an Eye - a Column by Joe MacDonald
One Thanksgiving season, nothing seemed to go right. Both of my sons suffered in completely different ways. “MacDonald the Older” faced bullies who looked forward to nothing more than terrorizing him, while “MacDonald the Younger” faced hospitalizations that lasted for lengthy periods. Hemophilia took its toll on both…
Caring for Adult Children
“MacDonald the Older” and I drove down the road that leads to his college. We stopped at a local restaurant, had a good meal, and then attended a concert together. I look forward to times like these when I get to share some laughs with my adult son.
Recently, I took my son to the dentist to have a couple of cavities filled. I knew that the dentist had reviewed my boy’s medical issues with our treatment center, so I felt assured about the procedure. He is an excellent doctor and if I had any doubts…
Battling the Monsters Together
Monsters come in all shapes and sizes. Some take the form of needles that terrify young children. Others terrorize us as we battle chronic illnesses. Scary creatures reveal themselves and change us because of the horrors they bring into our lives. Ghosts and shadows leave us breathless and…
A Not-So-Healthy Dose of Nerves
My youngest son continues to celebrate good health. The last time he suffered a joint bleed was in February 2014. A million years seem to have passed since the days of horrific bleeds and endless hospital visits. We used to know every nurse by name on the pediatric…
‘Baby Is Sooo Big’
There is a children’s picture book called “How Big is Baby?” The response to the baby is, “Baby is sooo big!” It is a great book as it empowers our children to know that they are a large part of life. We remind them that the love we…
Dear Doctor, We are concerned about the plan regarding our son’s treatment … The letter started out that way. Like many people, we lived in a culture that treated our doctors like gods. How dare we question anything! They had medical degrees, and we did not. Trust…
Before I share my story, I must make a disclaimer. The pastor/counselor side of me cannot continue without acknowledging that my story is not everyone else’s story. Some people in the bleeding disorders community do not have the support that many of us appreciate. I can’t believe how…
Look Ma, No Port!
My son has his seventh port lodged on his left side, between two ribs, just below his chest. This one is his most successful port regarding the amount of time (two-plus years) and accessibility. When the doctor placed one of the earlier ports at “MacDonald the Younger’s”…
Recent Posts
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 17-year-old advocate shares her NMOSD story to raise awareness
- Accommodations won’t keep us from enjoying a day at the museum