Its Ambiguous... Reflections for CHD Week
I remember my first day on the job as a Graduate Assistant at Eastern Illinois University. My supervisor, the legendary Bob Dudolski, sat down in my apartment between the Lambda Chi Alpha and Delta Zeta Fraternity houses along with a group of the other “greek” grad assistants who would become my family for the next two years and one woman who would prove to be one of the best friends I have ever known. He began by saying “I need you to be comfortable with ambiguity.” My mind stood still- what did he mean by that? Ambiguity is defined as doubt about meaning or having more than one meaning; vagueness and uncertainty. Comfortable? Hardly. I had spent my entire life working to be sure of things. I somehow felt that if I could research the right answers and travel down the path wherein the most favorable evidence lies I would never mess up, never get hurt, and always know what was coming. I would learn in my years at EIU to be tolerant of the unknown but certainly not comfortable with it. Ambiguity- the space between fear and faith, everything is fine and nothing is fine, maybe so and maybe not; the space between I am sure and surprise!
2011 was full of change for Dan and I...wedding, marriage, graduation, his stuff, my stuff, new jobs, and old friends. Getting pregnant was a surprise but learning that Paul had HLHS was a surprise of nightmarish proportion. Why us? How could this be? I did everything right… I married the right guy, I have the right job, I am good to my friends, I believe in God, I help people and my husband is practically a saint. How could this have happened? This is not what we planned- what did I do to cause this? How could I have prevented it? I spent my whole pregnancy looking for all kinds of answers so I could be certain of the outcome of our lives and after I exhausted every tool I had to know for sure how things would be I had to stop looking. Sometimes there is no answer- life is just ambiguous. Dealing with HLHS is a moment to moment existence- it has to be- there are no finite answers and every child with HLHS is different so there is no one way to do things- just best guesses. So, here we are, the space between fear and faith, everything is fine and nothing is fine, maybe so and maybe not… The most ambiguous a life any one family can lead.
On this journey there have been so many people that have helped us live in this space. Special people who give of themselves without expectation. It’s people like the woman at the front desk of the PICU who smiles everyday even though her husband is battling stage four cancer or the care partners who make you laugh who you know you would hang out with in “real life.” It’s gestures like an attending doctor taking time to talk to you, mother to mother, about bouncy seats and reflux or an intern who needlessly apologizes for something because she is humble enough to say she is still learning. We have encountered the amazing support of friends who have given a home to our dog, cooked us dinner, played hooky from work to visit us, watched the baby so we can nap, given selflessly of money and time and prayer. We have become closer to our family, for whom Paul is the first grandchild on both sides. We have watched as Paul’s Uncle practically put his life on hold to help us with a uniquely quiet humbleness. We have also encountered some acquaintances and some strangers who write to us for inspiration, think often of our child, and send presents via someone they know who knows of us.
Then, there are the people who help you live in that space because they live there too like the heart mother who drops everything to be by your side when things get rough and who will bring her HLHS toddler to the hospital to support you even though it can be really hard on him. There are also other families around the country who deal with this and are willing to reach out, mail care packages, respond to endless email questions, and love your child even though they have never met him.
Being a heart family is about monitors, appointments, saturations, stenosis, wet shunts, dry shunts, tachipnea, tachycardia, infection, effusion, x-rays, and ultrasounds- all of these things to do, to learn about- none of which paint a picture of absolute certainty. Your child has a life threatening heart disease, he is sick, it is risky- that’s what you know. What I also know is that I have faith, faith he will get better, faith he will survive, and faith in my marriage and myself. I now also have faith in the fact that I don’t know the answers and none of us really ever do.
February 7-14 is Congenital Heart Disease Awareness Week. Here are some things we doknow about CHD: Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of about 40,000 births per year; In 2005, for a privately insured population in the Unites States, estimated medical care costs for an infant with any congenital heart defect was nearly $100,000; About one million adults in the United States are living with a congenital heart defect; about 1 out of every 4,344 babies born in the United States each year is born with Hypoplastic Left Heart Syndrome. Learn more about this week: http://tchin.org/.
As I walk through this journey of getting to know my new normal I am privileged to be married to a man who makes my day every day, to have friends and family who rush to be by our side, and to have a little boy who I love so much. He is hungry now so I must stop writing... There is no space in which I would rather be. Of this and only this, I am certain.