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 of advice, and collected an abundance worth sharing. I have some favorites.
When my child was diagnosed with pulmonary hypertension (PH), his life was turned upside down with limitations, medications, challenges, and adult-sized fears. His doctor advised us to allow our son normalcy in whatever ways we could. When physically able, let him go to school. Encourage friendships and play, and don’t let PH define him.
Don’t hold him back from enjoying whatever improved quality of life his PH treatments provide.
I asked how to parent around a life-threatening disease. Disciplining a sick child sounded dreadful. But the doctor suggested that we not change a thing. Despite not feeling well for a long time, our son seemed to be a happy little boy. His doctor felt there was no reason to change the way we were raising him.
Heeding this advice, we advocated for our son’s return to school and arranged get-togethers with his friends as often as possible. Health depending, he would play outside, ride his bike, go to a park, climb a tree, and even roughhouse with his brother.
I think not changing who we were as parents helped to provide stability when his health was causing chaos. We continued to enforce family rules such as going to bed on time, keeping his room clean, and not fighting with his brother. Some might be shocked to know that we would ground our sick child, but it was out of hope for his future that we did. He is now a happy, ambitious, and respected young adult, and I think he’s grateful that we always encouraged him to be his best self.
But I’m human. As I wrote in a previous column, I’ve made mistakes. There have been times during hospital stays, when out of frustration with me and his situation, my son has insisted I leave his room.
I remember the first time he did this. I felt emotionally wounded until a nurse, noticing my distress, comforted me with bold advice: “If it’s space he wants, give it to him and use it as an opportunity for me time.” I reluctantly followed her suggestion and went to the cafeteria to enjoy a hot cup of coffee and make a phone call to a friend. Other times I’ve read a book, taken a walk outside, or visited with another parent.
When I return, my son is usually in a much better mood and so am I. There is nothing wrong with a caregiver and patient giving each other time to themselves.
Cliché advice that expectant mothers often hear is, “Sleep when the baby sleeps.” It has taken several night nurses to convince me that this is also sound advice when my son is in the hospital. Staring at the monitors and listening to the beeps instead of sleeping is never good for my mental health. It depletes the energy I need to help my son through the next day.
“Sleep when the patient sleeps” is valid advice. Sleep deprivation can snowball and make emotional situations worse.
No one ever gave me, the mother of a sick child in the hospital, grooming advice. My suggestion as a fellow caregiver: Shower if there is time, or at least take 10 to 15 minutes each morning to brush your hair and teeth. Put on some fresh and comfortable clothes, maybe even a little makeup.
People will understand if you look ragged and run down, but it’s not an expectation. Sleep is important, but so is how I start my day. A brief morning routine revives me and sends a message that I have not given up, and neither should my son.
Sort through my advice and that of others. Create your own piles, and consider the words of Bruce Lee: “Adapt what is useful, reject what is useless, and add what is specifically your own.”
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.