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Rare Disease Day: The Journey…Was it a Dream?

Rare Disease Day: The Journey…Was it a Dream?

I scroll through social media and see postings from moms and dads with children who have hemophilia. I flashback to those early years when both Julian (1996) and Caeleb (2006) were diagnosed with severe hemophilia A. It was a lifetime ago. I am grateful that my oldest...
Pacing, Pain and Possibilities: Understanding Our Limits

Being Open About Mental Health and Chronic Illness

Originally published by Hemophilia News Today, May 20, 2020 They say hindsight is 20/20, but I never really understood what that meant until I became an adult. Sometimes, I think back to my childhood and things that were confusing now make sense. One thing now...
Pacing, Pain and Possibilities: Understanding Our Limits

What I Remember As the Mother of Newly Diagnosed Children

Originally published by Hemophilia News Today, May 13, 2020 I have celebrated Mother’s Day, as a mom, for 24 years. In those years I’ve experienced tremendous joy and insurmountable grief. Some of my deepest grief came right after both of my sons were born. Instead of...
Pacing, Pain and Possibilities: Understanding Our Limits

Letting My Child Grow Up While Remaining His Advocate

Originally published by Hemophilia News Today, May 6, 2020 I used to be great about determining if my now 14-year-old son Caeleb was having a bleed. Identifying the symptoms of a joint bleed was second nature to me. Swelling of the joint, warmth to the touch, redness...