The Importance of Spirituality When Parenting a Medically Complex Child

Like many people, I used to think that “spirituality” meant being religious, going to church every Sunday, Bible study, etc. I discovered it is so much more. Spirituality is about connecting with your own heart and soul, spending your time in the present moment and finding your life’s purpose. What do you want out of this life? What are your goals? What activities give you joy?

What does this have to do with having a child with a complex medical condition? After your child was diagnosed with their health condition, your world was probably dominated by doctor’s appointments, therapy, medications, hospitalizations and more. Nothing seemed to make sense anymore and your stress skyrocketed. You probably forgot about many things you used to enjoy and lost yourself to care giving. (I know I did. I barely had time to think about what I wanted for breakfast!) The point is that you put all of your thoughts and energies into doing whatever you could to keep your child healthy and your needs ended up last. This works for a while, but I found that it does not work in the long run.

Here are a few ideas to help keep your spiritually strong.

Quiet Time in the Morning or Evening

Make a big difference in your day by taking a few moments in the morning or at night to center yourself before the kids get up. Meditate or pray for a few minutes each morning. You don’t need to be an expert on meditation; just get comfortable in a chair or on the floor and listen to a meditation app. You can even download free apps such as Calm or Insight Timer. I can center myself now by doing six-count belly breathing for a few minutes. It has made a profound difference in my life. I also read every night because it helps calm my restless mind so I can get a good night’s sleep.

I also do a daily yoga practice called sadhana which includes some simple spinal twists to help me get ready for the day. Others may run or do other forms of working out. The big idea here is to spend some time connecting with yourself.

Do Something Every Day for Yourself

This does not need to be expensive or time-consuming, but it is important to do it. It might be as simple as a phone call with a trusted friend. Other options include:

• Singing in the car
• Buying a cup of coffee at a coffee shop (Better yet, stay and drink it there!)
• Listening to a book in the car
• Buy yourself flowers
• Give yourself a compliment
• Stop for a treat for you and your child after a tough appointment

What works for you?

Connect with Nature

These days the buzz word is “forest bathing,” but when I was a kid, our moms told us to go outside to get some fresh air. And if the sun is out, you have the extra benefit of getting some vitamin D. Fit it in with your busy schedule:

• Stop at a park and walk around for a few
  minutes
• If you can step out of an appointment or therapy, head outside for a few minutes
• While waiting in the carpool line, roll your window down to get some fresh air

Laughter

The saying, “laughter is the best medicine” has never been truer! Even in my most stressful times, I have found laughter. When the doctors removed my daughter’s breathing tube after her last open-heart surgery, she croaks out that she had seen this procedure done at her job as a scribe in the emergency room. Her siblings and I burst out laughing! We could hardly understand her but were amused that these were some of her first words after surgery. How have you found laughter in your most stressful periods?

During such a difficult time, taking care of your spiritual health is more important than ever, but it is usually the first thing to go. And you may not even realize it. Who can think about taking care of yourself when your child is diagnosed with a lifelong health condition? When your child is sick, you will do anything to make her healthy regardless of your well-being. I can tell you from personal experience that this exactly the time you need to look inward. I know I felt guilty if I took time for myself, but self-care is not indulgent. It is a necessity.

What do you do to connect to your spirituality?

Follow this journey on Natalie Bonfig’s website.