The siblings of medically frail children grow up fast because they witness harsh realities at an early age. They experience emergencies, hospital stays, medical equipment, and scary treatments, and have no choice but to comply with a long list of limitations, sacrifices, and challenges. Pulmonary hypertension (PH) turned the…
Life as a Caregiver - a Column by Colleen Steele
When my son was diagnosed with pulmonary hypertension (PH), I noticed a change in how people interacted with me. They hesitated before sharing personal problems, and if they did share, they would often apologize: “I shouldn’t complain because it’s nothing like what you are going through.” What I sincerely…
Two positives came out of my son’s pulmonary hypertension (PH) diagnosis: It strengthened my belief in the power of prayer and rekindled my faith in people. My family has personally witnessed the kindness and generosity of both family and friends and complete strangers. People wanted to know how they could…
Almost 10 years ago, my husband and I were sitting in a pediatric cardiologist’s office with our son awaiting the results of an echocardiogram. The doctor described in simple terms a disease called pulmonary hypertension (PH). We had never heard of it but were relieved to be…
As a little girl, I developed a huge crush on the character John Boy from the television drama “The Waltons.” I was attracted to his aspiration of becoming a novelist, and my favorite part of each episode was when he would write in his journal. I related to…
Due to pulmonary hypertension (PH), my son was on the transplant list for almost a year when he received the call that a heart and lungs were available. We were prepared for an out-of-state transplant, with packed suitcases by the door and two different med flights on speed dial.
When my husband and I said our vows, “To have and to hold … in sickness and in health,” we had no idea to what extent that promise would be tested. Our child’s diagnosis with pulmonary hypertension (PH) was like an earthquake shaking the foundation of our marriage and…
My son’s pulmonary arterial hypertension (PAH) was idiopathic, which means it developed suddenly with no known cause. He was healthy until he became symptomatic at 6 years old. Before then, we only brought him to the doctor for checkups and the occasional ear infection. He was an early walker…
I wish I had a dollar for every time I’ve been described as strong, but what if people knew my weaknesses, unfathomable sadness, and heartbreaking mistakes? As a caregiver to my son, I’ve had to accept his reality and mine. I’m not a pillar of strength or perfect in what…
I struggled with the title for my column because what I write about will be from my perspective as caregiver to my son. However, using the word “caregiver” was bothering me because who I am above all else is his mom. When someone refers to me as a caregiver, it…
