Keeping the Worry at Bay When Raising a Medically Complex Child
Angie is a professional copywriter and single mom to a 9-year old daughter, Ruby. Ruby loves macaroni and cheese, is obsessed with Elmo and she has the ability to light up a room with her breathtaking smile. Ruby was born with a rare genetic constellation of microcephaly, micropthalmia and apple-peel atresia. At only 30 precious pounds and 3.5 feet tall, her peanut size makes her adorable in each and every way. But don’t let her small size fool you — this girl is fearless and strong.
Angie is not really interested so much in genetic syndromes, growth charts or doctor’s predictions. Instead, she gives Ruby lots of love, plus ample opportunities to learn – and most importantly, she has heaps of faith. She has found these qualities to be the best predictor of Ruby’s success. You can read about their adventures where she blogs at www.raregemsblog.com.
“She stood in the storm and when the wind did not blow her way, she adjusted her sails.” – Elizabeth Edwards
As parents of medically-complex children, fear of the unknown is something we must grapple with on a daily basis. What if my child doesn’t hit that milestone? What if the PCA/nurse calls in sick? What if I’m not doing enough for my child?
Fearing the Unknown
When my daughter was diagnosed with an array of congenital abnormalities in utero, fear of the unknown hit me smack dab in the face. We didn’t know if she would live to take her first breath, and if she did, we had no idea what kinds of challenges she would face throughout her life.
Following this scary diagnosis, I would lie in bed every night with a loop of frightening images about my daughter’s future playing in my head. I surfed the Internet endlessly looking for positive outcomes and found none. My fears were eating me up inside. I so badly wanted to enjoy my pregnancy and look forward to my daughter’s birth, but I couldn’t see beyond all the bad things that were happening.
One day after particularly bad news at the doctor, I cried for what felt like hours. As I wept, I realized that there was absolutely nothing that I could do to change the outcome – and worrying was only going to make it harder.
In that moment, I chose to let go of my need to worry about the outcome and instead repeated to myself over and over, “Everything will be okay.” Choosing faith over fear was a conscious decision that I had to revisit on a moment-to-moment basis, but when I let my fears slip away, magical things started to happen. I not only felt much more positive and prepared to tackle whatever challenges came my way, my daughter’s prognosis actually got better. Ultrasounds revealed that many of the things that had troubled us were not as bad as they originally seemed.
On November 11, 2004, my daughter was born seven weeks early, but to everyone’s surprise, she was pink and she was breathing on her own. Over the past nine years, she’s surpassed every single expectation that the doctors had for her. I firmly believe that if I had stayed in that space of fear and worry that she would not have done as well as she has.
Don’t get me wrong – there are times when I find myself worrying about her future. But I always go back to the same mantra I used years ago: “Everything will be okay.” As I repeat those four simple words to myself, I feel peace roll over me.
Keeping the Worry Out
Over the years, I’ve found some other practices that help me when I start to feel fear and worry creeping back into my life. I hope they help you as much as they’ve helped me.
- Use positive affirmations. Instead of focusing on what you don’t want, why not focus on what you do want? Using positive affirmations such as, “My child is healthy and thriving,” or “My nurses are helpful and capable,” can help shift your mindset from a place of fear to one of possibility.
- Meditate every day. Taking a few minutes to clear your mind can go a long way toward calming your nerves, and in that quiet space, you may even think of new solutions to old problems. Even just a single long breath in and out with your eyes closed can bring you much needed clarity in stressful situations.
- Adopt an attitude of gratitude. Taking the time to acknowledge all of the good things in your life can quickly shift a worrisome mind. Even when things are stressful, there are always things to be grateful for such as the sun on your face, a hug from your child or a smile from a stranger. Focus on the good and let the negative fade away, if only for a moment.
To learn more my daughter Ruby and me, please visit my blog at raregemsblog.com.Originally published: April 15, 2014