Parents sometimes view birthdays, milestones, and even achievements as bittersweet. Witnessing a child mature and grow brings joy, but sentimentality tends to mix with the happiness. Many a parent has wished life would slow down so that they could enjoy the childhood of their offspring just a little longer. I…
Life as a Caregiver - a Column by Colleen Steele
No cure exists for pulmonary hypertension (PH). People often ask, “But isn’t transplant a cure?” PH Awareness Month is an opportunity to explain the frustration that those who are battling this disease feel when faced with this question. I don’t deny that since my son’s heart and double-lung…
November is Pulmonary Hypertension Awareness Month. I remember the first November of my son’s diagnosis. My family and I were still in the process of learning about this disease. Awareness to us was explaining to friends and loved ones that my son had a life-threatening, incurable condition. Exposing this…
Happy Halloween! This week, I’m taking you on a journey to a “gross lab.” Yes, that is what it’s called. Four weeks after our son Cullen’s heart and double-lung transplant, we paid our respects to his old organs. Some might consider that morbid, but to us, it was…
Advice is like a bag of Halloween candy. You take it home, dump it out on the table, and sort through it. One pile for the good stuff, another to cherry-pick, and one for what you know you will never eat. As a mom and caregiver, I’ve had my fill…
In last week’s column, I shared how the Make-A-Wish Foundation granted my son Cullen’s prodigious wish to meet President George W. Bush in 2008. To be on the receiving end of this amazing nonprofit organization is extraordinary. The foundation creates adventures that far exceed expectations. To be on the…
In 2008, my 8-year-old son was diagnosed with pulmonary hypertension (PH). Being told that Cullen had an incurable, life-threatening illness was traumatic. It was impossible to imagine that there would be happy days following that news. That year, two wish granters from the Make-A-Wish Foundation visited Cullen at home.
My inner child awakens every fall. As the foliage starts to change into its glorious colors, I go to work decorating my home. And while sipping pumpkin spice latte, I think about what costume I will wear to this year’s party. On Halloween, you will find me on my porch,…
Change is inevitable when you or a loved one is diagnosed with pulmonary hypertension (PH). There will be physical, emotional, and social adjustments. And one day you will notice that your home has been unexpectedly redecorated. Boxes of medical supplies will take over tables, drawers, and cabinets. Trash cans…
My son Cullen was excited to tell me he’d made a friend on his first day of kindergarten. Fifteen years later, he and Keenan remain best friends. Cullen’s battle with pulmonary hypertension (PH) might have challenged their friendship, but it never came close to impacting their bond. Cullen was…
My son was 8 years old when he was diagnosed with pulmonary hypertension (PH). Children are supposed to be nurtured, but the attention showered on a child living with a life-threatening disease can begin to feel smothering. For the five years my son battled PH, I greeted him each…
Pulmonary hypertension (PH) has a ripple effect on family life. A diagnosis is like a pebble tossed into water, its weight disrupting the calm with waves of change. My advice is to wade through those ripples and rescue some normalcy. It might take time to calm the waters, but…
