In this touching guest post, Nicole Snyder, the co-founder of Inspired Family, shares how she and her husband made a truly difficult, but ultimately hopeful, decision in the face of heartbreaking news. (Full disclosure: I’m speaking at the Inspired Family Mindful Parenting Conference this Saturday in Philadelphia. You can find more information about this conference below.)
To me, mindfulness has always meant remembering to be present and attending to situations with thought andconcern. When I got pregnant with my son in December 2011, this became my reality. What do I need to eat and do to make sure this little boy arrives happy and healthy? When he arrived in September 2012, my focus became raising him with a mindful parenting approach. At sixteen months old, he is thriving, happy & extremely healthy. This is not to say that I am by any means a perfect mother and have never lost my patience – every day is a work in progress. We found out on my birthday this September that we would be expecting again. We were thrilled and I was certain the pregnancy would go just as smoothly as my son’s. Our family was expanding just like we had always planned. Life was good!
Everything came to a halt, when we went for a follow up to our anatomy ultrasound. The radiologist had trouble getting a good view of the baby’s heart, but could tell it was not 100% normal. After a two hour echocardiogram, we were brought back to a consultation room with two doctors, a nurse, and a social worker. You can imagine how devastated I was when they broke the news that our sweet little girl had a very rare congenital heart defect. It was as though someone had sucker punched me. A haze suddenly fell over me, as I tried to absorb the information being presented, while attending to our son who had been very patient all morning during testing but was ready for lunch and a nap.
We walked away from the consultation understanding that she will never have a normal heart, even after multiple surgeries. The entire left side of her heart is underdeveloped, which could lead to Hypoplastic Left Heart Syndrome. Her heart could continue to deteriorate by the time of birth. The most severe outcome would require three surgeries by two years old (2 performed within her first 6 months of life). She will forever need cardiac care and there would be certain limitations based on the severity of her condition. Her heart condition could be a symptom of a couple different syndromes that would further impact her quality of life.
We had two options: we could terminate the pregnancy or begin to prepare for her birth. As soon as we got in the car, the tears began and have yet to stop. This is where I began wondering how to remain mindful in our parenting, even in the midst of crisis and devastation?
My husband, the pragmatist in our relationship, was worried about the potential syndromes that would further complicate her life and felt that we could terminate, not worrying that we we’d have trouble conceiving again. I am the emotional and spiritual one in our relationship, and I could not stand the thought. How could I end the life that I had just begun connecting to? How could we not let her fight for the life that she is so actively demonstrating she’s ready for? How could we come to a decision, one that we both could live with for the rest of our lives? We had to weigh out all our options and think about how our lives will forever change regardless of which difficult decision we made.
Our discussions in the following days were raw, full of fear of the unknown and overwhelmingly emotional. Each question or concern was met with attentiveness and concern for the overall well being of our family as a whole. What will our daughter’s quality of life be? How will taking care of a critically ill child impact our son’s development? Are we strong enough as a couple to handle the difficult decisions regarding her care, surgeries, and potential mortality? Will we have the support we need from our extended family and friends? After many tearful discussions, we decided to let our daughter fight for the life we wanted her to live.
This decision came with both of us making promises to each other – many of which we felt would ensure that we remained healthy and strong to tackle what awaited us. We also promised that we’d see a therapist jointly at least once a month, to help us continually work as a united team for our children’s sake. All of these promises reminded me of our wedding vows to one another and only reaffirmed that my life partner was just the man I needed by side to make it to the other side of this mountain.
Two weeks after the atomic bomb was dropped on our house, we are feeling optimistic and very present with the process that awaits us. This little girl is proving to me everyday that she is a survivor, a fighter, and full of spunk – ready to take on whatever life throws at her. I have been proactively seeking out support groups and organizations that will help educate and assist us with the unknown. Only time will tell with how our journey will proceed, but today I feel confident that no matter how difficult the path is that is laid out in front of us that we will continue to be a united team using all the tools we can to make sure we all survive.
Nicole Snyder is a mom, wife, part-time literacy consultant for Scholastic, part-time baby sign language instructor & special education teacher on hiatus while raising her toddler. Most recently, Nicole has co-founded Inspired Family. She is currently preparing for their 1st annual conference, Inspired Family: A Mindful Parenting Conference.