I’m just starting to learn to surf, and probably don’t even yet qualify as a ‘beginner’. Which means that I have spent some time at the ocean, a little bit of time on a board, and just a few seconds actually standing on a moving wave. But I’ve definitely enjoyed all of it.
One of the fun and scary parts of surfing is getting caught inside. You will have successfully paddled from the beach to just past where the waves are breaking, and will be sitting on your board, feeling the rise and fall of the swells and searching the horizon for the next rideable wave. Then, just past where you are looking, you will see some larger, darker, slightly shadowy humps of water. This is called a set of waves; a place where the smaller, more regular waves have combined and organized into something a bit larger, usually in sets of three.
At this point, the skilled surfers smile and smoothly move into position to catch one of these liquid miracles. Beginners like me, on the other hand, spin their nose toward the sea and paddle for all they’re worth. For we are now sitting exactly where these waves will break.
Paddling into the teeth of a breaking wave is exciting business. Feeling your board move up the face and then tip over the crest is heady stuff. An involuntary ‘whoo!’ usually escapes from your lips, even as you bear down and try to keep up your momentum for the next one. But if your arms become too noodley or the waves become too big, you will feel your board stall out or move backwards down the face of the wave, which is immediately followed by the wave dropping on your head and your nose going over your tail. Which is followed by your tail going over your nose. Which (hopefully) allows you to find the surface in time to get a breath and try to figure out what to do about the next wave, which is right behind the one that just dumped you.
The exciting thing about surfing is that it is so fluid. So liquid. Which is also why the ocean demands a great deal of respect. For the feeling of relative safety of being outside the breaking waves can suddenly become replaced by the real fear of being caught inside.
A couple months ago, I found myself sitting outside, excited and nervous about my future. After many years and months and dollars and doctors spent trying to get pregnant, we did! Times two! It was simultaneously joyful and fearful. Pleased at the blessings poised to crowd into our life and afraid that the burden might be too much to bear. And then something changed. As I looked up at the horizon, I saw something looming.
Last Friday was one of the very longest days of my life. A whole day of tests and waiting and consultations and beds and papers and booklets and elevators and anatomy and diagrams and hallways and bathrooms and ultrasound images and doctors. Almost all of it was very negative. And it felt very much like enduring a giant three-wave set.
Wave One. We arrived at the ultrasound lab and met the kind experts there, who went back to the beginning, looking at both babies in depth. They looked for all of the babies’ parts, taking measurements and leaving notable silences when something was wrong or missing. The radiologist, one of the very best in the world, was monitoring the information from another room, and would occasionally come in to request a particular view. The two-vessel umbilical cord was confirmed, the heart was hard to visualize, and we heard the word ‘small’ and ‘unilateral’ used to describe our son’s cleft lip. Our very kind contact person and genetics counselor came up to the room to introduce herself and sit with us while we watched the screen. At the end of the examination, the radiologist took the controls herself, focused on our boy’s face and gently told us that she saw a very pronounced ‘bilateral’ cleft which involved the lip, palate, and nose. Watching his beautiful face on the screen, I came undone, sobbing and feeling my brand-new father’s heart tear in two.
Wave Two. Determined to take in all the information that we could, my wife and I deferred our kind contact person’s offers for a break. She walked us toward cardiology, encouraging us to stop at the restroom on the way. Standing inside, I wept freely for my son and for all of the pain and difficulty he would face. Wishing I could take it on myself, and knowing that I couldn’t. I cried until the pain seemed somehow too great and I just felt myself detach.
The echocardiogram focused on the heart structures and blood circulation of the babies. The world-class pediatric cardiologist sat in the monitoring room across the hall while our sonographer quietly went about her work. As a layman, I found the hardest part to be the quiet. No one is interpreting anything for you; you just watch the screens in ignorance and try to understand and try not to yell out in frustration. But even my untrained eye could see irregularities in our son’s heartbeat and blood flow, and I had another emotional sobfest, until the bed started to shake and the sonographer’s work was hindered. So I stopped.
The cardiologist came in, introduced herself, and took the controls to give a diagnosis of our baby’s heart. After which we were walked down the hall to the “Blue Room”, whose calming walls and large box of Kleenex suggested a great venue for giving really bad news to parents. The surgeon kindly told us that our son’s heart has only two chambers and two valves. Which are theoretically sufficient for his development in utero, while he gets oxygenated blood from his mother (though the two-vessel umbilical cord is cause for concern in this regard). But shortly after birth, the underdeveloped aortic arch would mean certain death within several days. Her colleague, she said, is a pioneer in the surgeries which could potentially ‘re-plumb’ this heart and allow him a more-or-less normal life, though one bereft of endurance events and contact sports, and one plagued by develomental delays and potential severe mental retardation. He might be a candidate for the three surgeries spanning two years if his size and development allow it (ie., he is not born prematurely), if his lungs are completely developed at birth, and if his other phsysiological systems are normal. And they offer no promises of longevity, as there is reason to suspect heart problems beginning at the age of thirty. Which, she optimistically offered in a kind of world-class heart surgeon way, may be something that can be repaired or replaced by then.
Wave Three. We were escorted down to Genetics and another Blue Room. Slightly embarrassed, our host apologized for the repetitive color, introduced us to the doctor, and gave us a bite to eat. By this time (7-plus hours on the clock), my brain was spinning and my ears were working only part-time. I felt like I was drowning or something. I would hear their words without feeling the implications, until they would rephrase later and I would be overcome with emotion. In all of this they were unbelievably gracious, patiently methodical, truly compassionate, and wonderfully direct: with all of their experience in similar situations, they seriously suspect further anomalies, and have particular concerns about chromosomal syndromes such as Trisomy 13 and Trisomy 18. All of which will probably be more evident in the weeks and months to come. Amniocentesis would give us definitive answers, but would be too great a threat on both babies. In any case, it would not affect our plans to carry both babies to term. So we will keep waiting, and processing, and simultaneously preparing for The Worst and for (what I hesitate to call) The Best.
After our three-wave pounding, we made it back to the beach. Rattled and weary, but somehow strengthened. The sun is still o
ut, the waves are still coming, and the beach is still beautiful. And we’ll keep paddling out, as God gives us strength.