- Imagine yourself a newly married couple in the first years of marriage. You are ready for the next step in your relationship to become proud new parents. Thrilled about the onset of possibilities of adding a little one to the family and after several months of trying, you find out that indeed you are pregnant! Celebration and excitement is in the air. For the next few weeks, focus has been on all the joy, fear, and celebratory milestones to come in the milestones of pregnancy, the first year, and lifetime.
- Now imagine learning the news that there are concerns evident on your prenatal ultrasound about the health of your unborn child and referred to a specialist for more testing to understand the anatomy of the heart. The chance of the healthy baby outcome and limitless dreams are halted at that moment. You regroup with your family and close friends to understand the news and reach out with your health care team to better assess the data and possible outcome. Thankfully, you have a good network of strong health care providers within 2 hours of your home to support your journey for further assessment.
- Next, you are facing the news that all suspicions are indeed valid based on a fetal cardiac ultrasound done today. Your child is missing critical chambers and blood supply to support the heart and sustain life effectively without surgical intervention shortly after birth. This will be followed by another at several months of age (4-6 months) and then at 1-2 years of age based on clinical status and outcome. This is truly a series of incredible curveballs you have been thrown in the beginning of the game.
This story is all too common among families I have encountered through the years. The family’s ability to wrap my arms around the volume of moving balls and complexity of medical care that families are required to navigate is challenging for me to understand. By no means do I pretend to know what it is like being in their shoes. In fact, you might say that I cannot relate since my two children are healthy without any chronic illnesses. If you look deeper, my connection to this story stems from exposure with complex CHD in my family with my older sibling and experience as a pediatric nurse practitioner in pediatric cardiology. It is this link that makes me particularly sensitive and aware of the challenges that family’s face. My practice has allowed me to bump into many family systems from all walks of life from intact two parent family, single parent, homeless, little social or family support, additional health issues or young siblings in the family, transportation and financial concerns, language barriers, and constellation of other unexpected obstacles that add additional stressors to the table. The ever present loss of control in life is frightening. It’s comforting in life to have a plan, but not a practical option in life or navigating any chronic or even acute illness for that matter.
How do families embrace all the complexities of life? How do they move forward positively for the best interest of the family? How do they cope over time? How do they plan efficiently and effectively the normal milestones in life? How do they have time for self care?
My most practical answer through the years is utilizing the Spoon Theory, by Christine Miserandino and trusting your gut instinct. While this analogy is related to Lupus, it can relatable with any disease process. We have 12 spoons each day to nourish and care for ourselves. The decisions to utilize a spoon can be daunting. We would love to have an endless supply of spoons so that we can tackle all the issues that pop up during the day. In reality, we cannot.
So how do we stick to using only 12 spoons in the day? Options include being fully present in each moment, slowing down, using deep breathing and moments of medication, making good choices, and ultimately being aware that you cannot do it all. Life’s road is not perfect and the journey is likely to include steering around, over, and through various obstacles along the path. These can take the form of a complex medication regimen with various food restrictions to unexpected trips to health care providers or even and emergency room. Since the tasks of daily life are unpredictable, it is important to keep one spoon in your pocket as a spare to help you manage through the day. You never know when that last spoon will be needed to help meet the next challenge of the day.
Our job as family, friends, and providers is to remind, model, and encourage self care to be most effective and efficient at juggling all the changing balls in life and chronic illness. There is goodness within each of us. Finding it may be a challenging task; however, if you open your eyes, have a good intention, you will find it. Often it may be hiding behind the pile up of stressors of the day and the various reactions folks utilize to cope with keeping the balance. Providing thoughtful practical management plans that are the least disruptive in maintaining the family routines is a start. We all have come across folks who may not be showing the best face in times of stress and inevitable in life, particularly with chronic illness. Celebrate with families around successes and be willing to laugh and cry with them without judgments. Encourage good self care to caregivers to prevent compassion fatigue. Be aware, assess, and reach out to facilitate assistance for the families that need support along the way in a timely fashion.
More information can be found on the spoon theory by checking this website:
If interested in learning more about Spoon Therapy, family stress, please consider looking into the grounded theory, the family stress theory, and a growing medical and nursing literature focusing on quality of life.