Our 20-month-old daughter, Celeste, was born with complex congenital heart disease. Her challenges were diagnosed mid-pregnancy, giving us months to prepare for all the possibilities. Yet the naked truth is that nothing can prepare you to see your newborn attached to multitudes of wires, monitors and machines in an attempt to keep her alive. No amount of reading, research, therapy or doctor’s appointments can ready you for the reality of when crisis arrives on your doorstep.
My husband, Panache, and I spent the first 5 months of her life away from our family in the Midwest at one of the top cardiac children’s hospitals in the country. Celeste remained in intensive care, where she required more medical procedures and surgeries than most will go through in a lifetime. It was under these harrowing life and death experiences that she earned the nickname “warrior princess” and we learned firsthand how to begin to maneuver the overwhelming world of crisis.
Then, after a one-year period of absolute bliss at home with all four of our children, we found ourselves back in the trenches of cardiac intensive care. Celeste was medevaced back to the specialists in the Midwest. She remained hospitalized, receiving powerful I.V. medications and medical support to keep her heart beating until a donor heart was found. We are so blessed to report that she has since received that gift after three weeks of being on the transplant list.
Three weeks after being actively placed on the heart transplant list, Celeste received the most blessed gift one can possibly conceive: new life, in the form of a pristine, healthy heart. One with four chambers, valves intact, opening and closing tightly, blood no longer sloshing and mixing together. Her pacemaker is gone. Her color is healthy. She is no longer dependent on oxygen and the doctors tell us that all the signs are positive.
Organ donor families are responsible for this miracle. We thank them, although these simple words can hardly convey our deepest gratitude. They rose valiantly above their own heartache to bestow the most selfless of gifts…a second chance at life for Celeste.
Through this experience as a family, my husband and I have learned how to journey through crisis. The truth is, this can happen to anyone. As incomprehensible as death, divorce, cancer, job loss, the chronic illness of a child, or any other crisis can be, we’ve learned that that there is one tool that will provide invaluable support in the early days as you learn how to meet it.
Focus on what’s next.
When we were told Celeste needed a heart transplant and to prepare for up to a six-month stay in intensive care, I began sobbing…
Should we immediately pack up the family and move to the Midwest to be closer to the hospital? How can I manage the kid’s day-to-day lives while spending every available moment at Celeste’s side? Would her twin brother Leo grow up with attachment issues and be incapable of long-term healthy relationships because I chose to spend more time in the hospital rather than at home with him? And underlying the entire emotional storm was the ultimate fear… what if the six months was cut cruelly short because she didn’t survive long enough to make it to the transplant?
When your world falls apart and you find yourself spinning with frenetic energy over the should-haves or could-haves of yesterday, or worrying about a future in which you have no control over, you need to STOP.
The only way to meet crisis head-on is by simply focusing on the only time and place where you do have any power. And that’s right now, in the present moment.
This strategy keeps you firmly grounded in the here and now and allows you to tackle life from a place of connection and spaciousness. I’m not saying it will make things easy, but it will allow you to begin to manage crisis from a space of sanity, self-love and grace.
Here’s how you do it.
When you are faced with the unimaginable…
-Take several long deep breaths.
-Excuse and remove yourself from the emotion or commotion of what is unfolding. Even if that means stepping out of the room or away from family for a just a few minutes.
-Tap your feet on the floor to ground you…and wiggle your fingers to bring you back into your body. Keep breathing deeply.
-Ask yourself, “What do I need to support me in this moment?”
-Reduce it to the ridiculous. A cup of chamomile tea to calm myself. A bottle of water to replace the tears I’ve been crying. The arms of my husband enfolding me as he whispers that we will make it through this moment together. The shoulder of a best friend to sob away your worst fears. The support of a clergy to remind you that you have what it takes to make it through this untenable situation.
Sound too elementary? I promise that no matter how overwhelming the tasks and decisions are in front of you, these tiny, supportive decisions made one after another in the present moment create the foundation for rebuilding your life when you find yourself at rock bottom.
That cup of chamomile tea allowed me to calm myself enough to close my eyes in prayer connecting me to the strength of my highest self so that I could return to Celeste’s bedside and whisper in a serene voice that daddy and I were here for her no matter what. Although I had no idea how or where I would find the strength to make it through the next several days, let alone weeks or months, I knew that I could be strong for her in the midst of my own weakness IN THAT MOMENT.
Through the lens of my daughter’s heart disease, life is once again inviting me to grow and stretch, to expand my capacity to gracefully navigate the abrupt twists and turns without being taken out or taking out those whom I love most deeply.
Yes, it’s challenging. But I’m moving forward one tiny step at a time.