As I write this, I’m bedridden from a bleed in my right hip. I’m learning what it means to have both hemophilia and a baby girl. Although I could see this bleed as a spirit-breaker, I’m readjusting, and I’ll be better prepared for episodes like this in the future.
The following is a group activity I like to do in some of the workshops and presentations that I give. Each person has 16 slips of paper and I ask them to write something on each slip. One category is the four most important people in their lives…
To the father of my daughter, Thank you for being present from the very beginning of my pregnancy — when those two lines first appeared, and you told me you didn’t know how to feel (despite us having planned everything out). Thank you for soldiering through those…
My youngest son, wife, and I just returned from an appointment with our hematologist concerning plans for treatment. In the twinkling of an eye, our worlds changed. We will move to a new procedure requiring an injection given every two weeks. How could this be? Wasn’t it last…
My mighty warrior Caeleb is about to start a new chapter in his life with hemophilia; it’s one I never imagined I’d see. About nine months ago, Caeleb began a new treatment with a medication that has been taking the bleeding disorder world by storm. Hemlibra (emicizumab-kxwh)…
Thank goodness for the great friendships that we forge along the way. Those of us who live with chronic illnesses learn the most about caring for our loved ones from those who are in our communities. While teaming with medical staff is crucial to the diagnosis and treatment…
Friday is a big day. My husband and I will take Caeleb to the Hemophilia Treatment Center for bloodwork. If all looks well, we may discuss removing his port-a-cath. Not replaced. Removed. It’s not that his veins are fantastic, but Hemlibra (emicizumab-kxwh) is doing what it is supposed…
On Friday, Jan. 18, my husband, Jared, and I finally had our baby girl. We named her Melanie Citrine. (Courtesy of Alliah Czarielle) Labor was perhaps the most physically challenging thing I’ve ever done. On my birth plan, I stated that I wanted a…
Those of us who either have caregivers or serve as caregivers for others with chronic illness know what it is like to feel as if we are the cause of our loved one’s affliction. We may think that we said or did something wrong, and because of these…
Editor’s note: After this column was written, Jared and his wife welcomed a healthy baby girl, Melanie Citrine, on Jan. 18. Congratulations! My wife is 38 weeks pregnant. I’ll soon be a father. That fact is becoming more real to me every day. I have many questions: Will I be…
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