Our daughter Leia was born urgently around 37 weeks when they detected a “flat  heartbeat” during a visit to the hospital. I remember the room being a little too quiet when she was born, and I had this sense that something was not quite right. After getting to hold her briefly, my husband and I were separated from her and rolled into a different room. After what felt like forever, a new doctor came in and  told us that regrettably, our baby had “missing reflexes” and “neurological differences”. 

Looking back at those first few weeks and months, I remember the anger and despair, the uncertainty and grief. There were so many questions, with very few answers; What was the best-case scenario? Or the worst-case? What did this mean for our family? And more, I wondered and worried; Could I have done anything to cause my daughter’s differences? 

Even while dealing with this inner cascade of difficult thoughts and emotions and the physical recovery from giving birth, I knew I had to show up for my daughter. My most important job was to be there for her, provide skin-to-skin contact, pump milk that was fed to her via a tube, learn about desaturation and vital signs, and practice her sucking reflex with a pacifier each day. 

Beyond the practical demands of having a child in the NICU and the meetings with countless doctors, nurses and therapists, I came to face a full-blown identity crisis. I had always been passionate about health and wellness and regarded myself as a person of good health. Professionally, I was a certified Yoga Teacher and Wellness Specialist, and I valued health as one of the most important factors in living a “good life”. Suddenly, I was the mother of a daughter with severe health challenges that modern medicine couldn’t explain or fix. Despite our doctors reassuring me that there was nothing I had done wrong during my pregnancy, it took some time before I could accept it. Since then I’ve come to learn that, when medicine has no cure to offer, it requires us to do more inner work in order to move forward and adapt to our new circumstances. 

I spent a lot of time processing the uncertainty around my daughter’s condition and our  family’s future. My therapist explained to me that our minds have a really hard time dealing with uncertainty and that is why we often come up with our own explanations or look to religion for answers. Rabbi Kushner gives a great example of this in his book, Why Bad Things Happen to Good People. Visiting a couple who recently lost their only daughter, he finds them in a cycle of guilt and blame. Looking for an answer to the question why, they express regret for not having fasted properly on Yom Kippur. Rabbi Kushner points out that when tragedy strikes, we often try to find something or someone to blame. We look for an explanation or something to hold onto when in reality, there often is no good reason for the challenges we come to face in our lifetime. 

Throughout my daughter’s life, we learned a lot about anticipatory grief. I mourned the things I had imagined for my daughter and our family. I mourned our loss of freedom. I mourned myself and who I had been. For months, I felt the full depth of my grief and anger, but eventually, a powerful question began to take form: Now that this has happened to me, what’s the best thing I can do to move forward? I was searching for a new way to be with what had happened, one that was more self-compassionate and empowering. I wanted to be there for my daughter and enjoy the time we had together, while also being able to show up in my life in a deeper and more meaningful way.  

Although I wasn’t able to find meaning in what had happened, I learned that I could create meaning going forward. While our daughter had no official diagnosis throughout her life, we were told that her unknown condition was progressive in nature. This meant that she wouldn’t get better and that she would die young. It was the worst news a parent could receive. However, I noticed that the more I wished that things were different, the more I suffered and the more I looked for something or someone to blame, the harder everything became. We were faced with a challenge we hadn’t chosen, one we couldn’t have prepared ourselves for or prevented. For a long time, I felt such a lack of agency that there was nothing we could do. Indeed, there were certain things I couldn’t change, such as the nature of my daughter’s condition. However, when I was able to see that I did have some agency, such as how I was being with the situation, I started to feel more empowered.

There were a few things that helped initiate this inner transformation for me. The first, ironically, was when my daughter was enrolled in pediatric hospice. The care and support we received was exactly what we needed at the time, reducing a lot of caregiver burden and stress. With hospice in place we were able to customize her care to increase her comfort and quality of life. Hospice support gave me more time and so I was able to enroll in a year-long life coach training – the second piece of my inner transformation. In the coaching space, we are encouraged to show up courageously and openly, and to fully support one another. In our training, I learned how our minds work when we’re suffering and how we often become fully absorbed by our pain. However, what matters more than your experience is who you are. I discovered that I am a loving, thoughtful person, full of courage, and I love to support others to be their true selves and to live their lives more fully. I do value health and wellness, and I’ve experienced the true importance of it, especially during trying times or when faced with a medical emergency. Indeed, my life’s most challenging times have connected me with my purpose to support others to rise  above their suffering, discover their own strength and courage, and move forward. 

I still have harder days where the grief and suffering wash over me. I am grateful for this inner shift and the lessons I have learned through my beautiful daughter. Now when the wave of pain comes back, I choose to be more compassionate and loving toward myself which is helping me float rather than sink. I’ve learned that it’s important to acknowledge my own suffering, and sometimes I recite this chant which I share in hopes that it helps you too.

This is a moment of suffering.  

Suffering is part of life.  

May I be kind to myself in this moment.  

May I give myself the compassion I need. 

I also find another powerful practice is to do at least one thing each day that lifts your spirit. It can be as simple as listening to a great song, a walk outside to feel the sun on your skin, or having a sincere conversation that connects you with a friend or stranger. Even these little moments where you can tap into your own light and feel your connection to the world around you will help raise your energy and make a difference. If any of this speaks to you or if you’re feeling the depth of your experience in this moment, remember that you are not alone. Seek support, seek compassion.

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Karin Karlsson is a Swedish native who lives with her husband and 4-year-old son Noam in San Francisco, CA. She’s a certified Yoga Teacher and professional Life Coach (www.karinmariacoaching.com)*. Her daughter Leia was born with complex needs in 2020 and passed away soon before her 2nd birthday.

*In sharing this link to Karin Karlsson’s site, Courageous Parents Network is not endorsing her professional services. CPN has no experience with Karin in this capacity. The suggestions in the article are based on the author’s personal experience and training, but they are not meant to replace the recommendations of your physician, therapist, or other qualified professional. Please seek the assistance of a healthcare professional for any medical or mental health conditions.

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References: 

Harold Kushner, Why Bad Things Happen to Good People, 1985 

Kristin Neff, Self-Compassion: The Proven Power of Being Kind to Yourself, 2011