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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…

I have suffered from clinical depression most of my life. Five weeks after my eldest son was born over 22 years ago and diagnosed with hemophilia, my mom passed away. It was not a good time. I had planned on taking maternity leave until after Labor Day, but…

Tomorrow is a long-awaited milestone in my pregnancy. I am scheduled to have an ultrasound, during which we will finally learn our child’s definite sex. My OB-GYN will also check for structural anomalies. I feel excited and nervous. All my husband and I want is a healthy child. But with…

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…

I’m a 25-year-old “PWD” (person with disabilities), and I’m not a baby bird anymore. It’s time for me to fly on my own, be independent, and take care of myself. Recently, I had a string of bleeding episodes. It was difficult for me to put a smile on my…

Wash your hair. Brush your teeth. Please, for the sake of the world, put on deodorant! Hundreds of times I have given those commands to my sons. Well, not so much “commands” as directives. I know I taught them basic hygiene at a young age, but why is it…

I am a pregnant entrepreneur. Throw in a husband with hemophilia and epilepsy into the mix, and there you have it: the crazy life I’ve been living for the past five months. Let’s do away with the inspirational mumbo-jumbo that goes, “Everything will be OK, just have faith!” Instead, let’s…

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”…

I get many opportunities to travel across the country to speak with families affected by bleeding disorders. Everywhere I go, I see familiar faces — faces that bring me great joy. There are lots of hugs, and each smile warms my heart. My talks change from event to…

I will not baby my husband. I will not carry all the weight on my shoulders just because he is “sick.” His disability does not mean that he is brittle. He has the capacity to grow, develop, and become more resilient over time. But that is something he won’t be able…