Standing in a dark ultrasound room, I watched a technician point out a blob on the screen to a crowd of physicians. I was not a radiologist, but I knew the blob shouldn't be there. It would soon be confirmed that my infant daughter had neuroblastoma, a type of pediatric cancer. Thoughts came flooding through my mind creating a tidal wave of emotions:
I don't want my daughter to die.
I don't know how I will manage this.
I don't want my child to be sick.
This can't be happening.
I needed to don a resilient suit of armor which years later, I learned that I could never let it become rusty. After beating the odds of pediatric cancer, I was the physician who had the "honor" of diagnosing my daughter with Type 1 diabetes at age 12. The flood of thoughts and tidal wave of emotions once again appeared:
This will change everything.
My child has already suffered.
I cannot believe this is happening.
I don't want my child to suffer.
Resilience is the ability to adapt and bounce back from adversity. As parents of a chronically ill child, you need to build your own resilience to face the challenges of the caregiver role, but you also play a crucial role in helping your child develop resilience. Building resilience requires you to carefully lay the bricks of the four key resilience pillars: consciousness, curiosity, commitment, and courage. In this article, we will discuss each of these pillars in detail and provide practical tips on how you can work to develop them.
The first pillar of resilience is consciousness. This means being aware of your thoughts and understanding that the thoughts our brain offers impacts our well-being. Our thoughts create emotions and we choose our actions because of how we feel. Helping our child manage their illness is hard, but when we have thoughts of "I can't do this" or "This is impossible", we become overwhelmed. Changing our thoughts must start with awareness. Developing a deep level of consciousness can help us better manage our child's illness, navigate the challenges it presents, and be a role model for our child.
Here are some tips for developing consciousness:
Pay attention to your body and how it feels. Emotions such as frustration will cause physical symptoms that can be a sign to pause and reflect on the thoughts that your brain is creating.
Develop mindfulness practices such as deep breathing, meditation, or yoga. These practices can help develop awareness of thoughts and emotions.
Model conscious behavior for your child. For example, if you are feeling stressed or overwhelmed, talk about it openly with your child and demonstrate healthy coping strategies such as taking a break or going for a walk.
The second pillar of resilience is curiosity. Curiosity involves a willingness to explore new ideas and perspectives, and a desire to learn from experiences. It can help develop a growth mindset and an open attitude towards challenges. Curiosity about the thoughts that our brain is suggesting gives us the space to choose whether or not we want to believe it and act on it.
Here are some tips for developing curiosity:
Ask questions and explore your interests. Give yourself opportunities to try new things and pursue your passions.
Develop a growth mindset by praising yourself for effort and persistence. Allow yourself to make mistakes since these are really opportunities for learning and growth.
Foster a love of learning by reading about your child's condition and exposing yourself to diverse perspectives and experiences.
Journal to put your thoughts on paper and look at them like an outside observer without judgment. Why is your brain giving you this thought? Is this thought something you want to believe?
The third pillar of resilience is commitment. Commitment involves setting goals and working towards them with dedication and perseverance. A strong sense of commitment proves the value of hard work and the importance of persistence in the face of challenges.
Here are some tips for developing commitment:
Set achievable goals related to your child's medical management, such as organizing their appointments or trying a new healthy recipe.
Stay motivated by focusing on the benefits of the efforts for you and your child, such as feeling better and staying healthy.
Seek support and encouragement to help stay committed to your goals, such as rewarding yourself for progress.
The fourth and final pillar of resilience is courage. Courage involves facing challenges and adversity with bravery and determination. Developing courage creates resilience in the face of difficult situations.
Here are some tips for developing courage:
Take healthy risks and try new things with an understanding that failing is part of the process. Failing is just as important as succeeding. Both can provide information on what to do the next time.
Use healthy coping strategies for dealing with stress and anxiety, such as deep breathing, visualization, or talking to a trusted friend or family member.
Feel your emotions and process them. Model courageous behavior for your child by facing your own challenges without resisting emotions. Be brave and determined, but acknowledge fear when it is present.
In conclusion, developing resilience requires a deliberate effort. By cultivating consciousness, curiosity, commitment, and courage, you can develop the skills needed to manage your child's condition and navigate life's challenges. Remember that practicing these skills not only improves your own resilience, but also models the behaviors allowing your child to build the resilience they need to thrive.
Maureen Michele, MD is an award-winning leader, life coach, author, and physician. As a general pediatrician and allergist/immunologist, she has spent her career caring for patients with a variety of acute and chronic health problems. She is a military veteran and has enjoyed using her story-telling talent to teach young physicians the art of medicine. She is an accomplished life coach who helps parents of chronically ill children regain control of their lives and thrive at fulfillment. Maureen is the mother of three amazing children and has first-hand experience with being a parent of a child with long-term health issues. Maureen enjoys jumping rope, hiking, and playtime with her two extraordinary four-legged sidekicks!
Brewing More Hope "Disclaimer"
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.