ICING

The United States is a culture of striving and trying. Trying to change things. Trying to control things. Worrying that we are falling behind in an invisible race. Striving to improve our circumstances. Not always seeing that we risk losing in wisdom what we gain in knowledge. Too hurried in the invisible competition to notice that whatever we gain in money, we lose in time. Feeling like we are failing if we cannot make everything “perfect”, and of course we never can. Those of us who were raised in the dominant US culture have so much to learn from others. Especially about acceptance.

Several monolingual people have asked me over the years if it is hard for me to work with a population that is “so uneducated”. I first surprise them by asking if they mean the patients or the doctors. Once they admit they think it is the patients who are ignorant, my answer is always the same: For every thing that I know that the patient does not, there is a corresponding thing that the patient knows and can teach me. Things great and small, some very conceptual or philosophical, and many that I believe are ancient ways of living that some sectors of our splintered society have lost along the way as they move away their multi-generational households, original languages, and old traditions.

A case in point. Babies. Many people from the dominant culture are convinced by the new healthcare “business model” that a perfectly healthy, well-formed baby is the natural result of “informed consumers” working with a team of scientific experts (culminating in a nicely appointed birthing room complete with jacuzzi and surround sound). From pre-pregnancy counseling to preventive vitamins and more, couples are led to believe that as they have “done everything” and “prepared so well” they can take for granted a perfectly healthy baby and even a pleasant delivery with all the perks that cutting edge technology can provide. Satisfaction guaranteed!

Other populations do not come into pregnancy with these notions. And when something is not the desired outcome, these parents are deeply equipped, at a root level, to handle the unexpected. A couple I will never forget, when they were gently offered information about their gravely ill unborn child, gave this reply: “We have talked it over, and we understand that our child will be flawed. But we have thought and prayed, and firmly decided to embrace this child as he is. Because really, who are we to demand of God a perfect child? We are not perfect. So we bow our heads to this and we take what God sends us. Our only job is to love this baby. And this we will do whole-heartedly.”

I have been interpreting for a family whose newborn baby has bones that did not grow in the usual way. This has resulted in short, stubby limbs and fingers. Most dangerously, this baby has a tiny, constricted chest. The official title of this syndrome includes the word “asphyxiating”, and they do not always survive the birth process once they have to draw their own breath. Whenever this little darling tries to move, cry, or feed, he cannot expand his lungs enough to breathe in fully – there simply isn’t room in his tiny rib cage. And his oxygen drops to dangerous levels, and his tiny heart races in response. He isn’t expected to live long.

Who knows what this tiny person is experiencing? I hope and pray for his sake that he is still in that state of primal “oneness with all living things” that so many people have tried to describe in words, and I like to believe that while he struggles to breathe, he also enjoys being held and caressed by his loving parents. In any case, I am fully convinced that he has none of the harrowing “why is this happening to me?” questioning that adds volumes to our suffering beyond babyhood, especially in the dominant US culture.

The doctors and specialists keep coming in to talk to this couple the way they are trained to do. Lots of talk about how the next study should give us more information, and we would like to run some genetic tests to narrow down the diagnosis, and the CT, and the MRI, and the X-rays, and the blood work, and the oxygen desaturations and the heart accelerations, and the calorie supplements for the pumped breast milk should be 22 grams per feeding. Each new young doctor has come in with thinly veiled discomfort and has interlaced multiple apologies into their updates, using words like “unfortunately” and “sadly” and “we just don’t have a cure yet!” No, we don’t, doctor. We don’t have a cure for the human condition.

As happens so many times, it was this young couple, embracing their extremely disabled baby, who could educate and enlighten any doctor who would take a moment to move beyond their repeated apologies for giving “disappointing” news about this “imperfect” baby that they found so personally painful and uncomfortable to relay. If only they could take a deep breath and pull back and truly listen to what these parents are saying:

“We love our baby as he is, right now. So you can stop apologizing. We are grateful for any time we have with him. We rely on your expertise and our love to give him the best experience possible. We want to give him a safe and loving home for as long as he needs it. We don’t expect or demand anything else.”

As usual, this young pair of agricultural workers, who travel three hours each way to come to our “specialty care” hospital, bring wisdom beyond technicalities. And what they say resonates so deeply.

In the end, our only job as parents is to love our children. Not to try and improve them, or wish they were different and better. Having a healthy baby is just icing on the cake. And the sooner we can recognize how very flawed and imperfect we ourselves are, the more reverently and unconditionally we can love our very human offspring.

This couple reminds us once again that children to do not come to us to be perfect or make us feel complete, but to be accepted and protected. To be cared for. This baby may be considered “disabled” by modern medicine, but he is perfectly and absolutely capable of being fully human. Of being loved, and of providing love and comfort to his parents. And they have already shown that they can and will love their child under any and all circumstances that life brings. Can we all say the same? Or do we only want to parent the child we envisioned? To approach parenting like this couple, with humility and an open heart, is a lesson for us all.