My daughter is medically complex. This means she is a child with significant chronic conditions in two or more body systems. Of course, I live on the edge, wondering when the next medical crisis will hit and when is it time to go to the emergency room.
When a medical crisis does occur, the physical and emotional strain is intense—both during the crisis as well as when it is finally over.
One of her diagnoses is Chronic Lung Disease. Her progressive muscle myopathy is affecting the way she breaths. She has respiratory therapy at home, twice every day, but when she gets a little cold, she is susceptible to pneumonia. So those therapies increase to every 2 to 4 hours and through the night as well.
Every day I listen for the littlest cough or sniffle in case we need to go into “lung crisis” mode- this is what I call the every 2 to 4 hours and through the night time therapies due to a little cold.
It is amazing how my body responds. I guess that is why we are called “mothers.” As soon as I hear any sign of a cold, my body automatically goes into “lung crisis” mode. I turn into a nurse and stay very busy charting times, doing nebulizer treatments, her vest clearance system and our favorite, her cough assist.
I chart so I can keep up with what time she needs what. I pack hospital bags as to be ready. I somehow can function on less sleep and drag myself out of bed at 2 in the morning and again at 4 in the morning and all throughout the day. I compare it to how it is when you have a newborn and have the strength to keep going even after 2 hours of sleep.
Then comes the hard time of the crisis ending. The stress and anxiety a crisis generates can be overwhelming and exhausting. Adrenaline keeps me going. I literally am on autopilot running into her room to check her breathing and do therapies.
Once the crisis is past, I have a hard time stopping. I always feel like I am forgetting to do things, as if I am not busy enough. With time and a lot of self-reminding, I finally calm down and then get back in the groove of the everyday normal.
Taking care of yourself helps you take care of your child. Visit the Self-Care section.
It’s easy to get caught up in the social challenges that children with disabilities face. But when we consider the progress made over the last 80-90 years, we can be grateful for how far we have come.
Categories: Family Support