Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

Slowing Back to Normal

03/11/2018 | Published by: Sharon Brown

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.


Read More Posts from Family Support

Presuming Competence

Presuming competence means assuming a child with a disability can understand just like anyone else. It means that you don't underestimate the child. Here's why this matters so much.

A Parent’s Evolution

Here is one mom’s story about the personal changes she made to become an advocate for their child.

The Surprising Benefits of Being a Volunteer

It is personally rewarding to see how much you can help another person through offering your time, energy, and resources.