Columns

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…

My mighty warrior Caeleb is officially a teenager. His voice is cracking and becoming lower, he eats a lot, and he is growing taller every day. Where did the time go? Sometimes I feel overwhelmed by the passage of time; the older I get, the faster time seems…

We are in the middle of January and some of the resolutions we promised to keep just a couple of weeks ago already seem to be fading away. Our intentions were wonderful and our commitment admirable. So what happened to our fortitude? Did something act as a roadblock…

I have been part of the bleeding disorder community for over 20 years. The early days were filled with fear as I learned about hemophilia with my newborn son. Over time, I began to feel a little more comfortable with this rare genetic bleeding disorder. I wanted…

Dear (young) person with disability, I hear you. You’re having a tough time with money. Maybe you’re having difficulty finding a job. You probably have the qualifications — you may have gone to college and had internships here or there — but no company will accept you. You blame it…

Many of us have names that represent legacies and traditions handed down from generations past. My mom named me after my grandfather’s brother who died when he was 11. I often think of him and wonder if I carried on the family name with pride. Would he have been…