My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). During his pediatric PH years, I had the pleasure of meeting other children just like him. Kids who liked to have fun, learn new things, and express themselves through talents they were just discovering. Young people who…
What is the main thing that patients and caregivers have in common? I believe the answer is stress. Therefore, one of the best gifts you can give them is something to help them relax. Gift cards are a way of doing that. During endless days of clinic appointments or hospital…
Being human makes everyone susceptible to embarrassing moments. Some have learned to deal with them by laughing at themselves. Facepalm-worthy fumbles happen, even when dealing with something as serious as a rare disease. Medical faux pas might sound like no laughing matter, but in my experience, they can offer comic…
When I look at my Christmas tree, I appreciate its Christian symbolism as much as I do its beauty. There are many meanings passed down throughout history, but I have my favorites. The triangular shape represents the Holy Trinity and the upward-pointing branches are symbolic of my praise…
My sons are 13 months apart and affectionately referred to as “Irish twins.” Cullen is 21, and Aidan just turned 20. My husband and I hoped that having them close in age would foster a close friendship for life. But different personalities and a rare disease placed a gap…
“Success is the sum of small efforts, repeated day in and day out.” My son Cullen could have been the poster child for this famous quote by Robert Collier. The 20th century American author of self-help books believed that “when it comes to finding true success, one needs to…
It’s been a long, difficult year, so let’s make up for it with over-the-top Christmas cheer. We should decorate our homes from floor to ceiling, and ground to rooftop. Bake, cook, watch holiday movies, listen to carols, buy lots of gifts, wrap them up, display them under the tree, open…
Life with pulmonary hypertension was far from picture perfect, but I always took snapshots anyway. No filters, just life the way my own eyes had seen it. I captured reality from all angles: the pleasant and the painful, the boring and the extraordinary, the successful and the disappointing, the predictable…
Day 30 of 30 Days of PH Topic: Don’t Stop Believing This is Shannin’s Story @Shanninstromhenry Zoe Henry is a sassy 12-year-old who has had PH her entire life. She was born with a Congenital Diaphragmatic Hernia and spent her first 3 months in the NICU. She…
Day 29 of 30 Days of PH Topic: Dealing With The Elephant In The Room This is Skarlette’s Story @skarletteisdead In December 2015, I was diagnosed with pulmonary hypertension and heart failure. My diagnosis did not come easily. I’d been struggling for…
Day 28 of 30 Days of PH Topic: What PH Has Taught Me This is Jacque’s Story @jacque.wilkinson Even with all the negative that comes with this disease, it has taught me so many things. First, it taught me to slow down. I was an…
Day 27 of 30 Days of PH Topic: Caring for a Child with Pulmonary Hypertension Photos by Nila Buchanan Photography This is Kim’s Story I’m a mother to two fantastic children via adoption. My oldest is a pretty typical child and my youngest is a…
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