Friday, October 31, 2014

Reflections on a Year with Cleft Palate

Last night I read a post about a fellow alum of Moody who had cleft baby. It brought it all back and I realized that today is not only Elly's birthday, but marks a year into this cleft journey. Since then it's filled my mind, the memories and my attempts to process them.

I remember the relief of the epidural and everything coming into focus again, and then how quickly it all went, the crazy birth that left the nurses amazed and Isaac and I looking at each in wonder that that was it, it's already over? as they placed my wet and squalling daughter on my stomach and I snuggled her in awe.

 I remember within minutes when she didn't immediately latch and made a funny noise, the nurse lifted her up so that light from the window fell on Elly's face. "Oh, it looks like she has a cleft," the nurse said as she nonchalantly handed Elly back to me. My heart nearly stopped and I spent the next hours processing and wondering and warding off fear, because clearly "cleft" didn't mean what I thought it meant, so what did it mean? What did it mean for the precious daughter in front of me?

I remember in the hospital room googling "cleft palate". I remember becoming, at that moment, very calm. I realized we were heading into a storm, and my reaction to an emergency is always steady, quiet, determined calm and quiet. I drafted an email to our family and closest friends, announcing her birth and giving what little information we did have, so that they would know and would begin to pray.

I remember when this photo was taken. I chatted with my family via skype from the hospital bed and I told them what I knew, which wasn't much, and my mom commented on the peace we exuded as I spent nearly the whole time stroking Elly's hair as she slept. Much of my time in the hospital was just like this, just Elly and I, since Isaac still needed to be watching Judah. We were quiet, my newborn and I. We tried nursing. I began pumping. We were peaceful. I was waiting. When she cried in the light I could see the darkness at the back of her mouth where there wasn't a palate, and where the uvula was split in two, and I was afraid of what it meant.

I also remember what didn't happen, and that frustrates me now. After that comment from the lactation consultant just moments after Elly was born, it was a full week before we saw a specialist of any sort, and the truth is we actually never saw a doctor specialist. The hospital (the same network that has had the Ebola chaos this past month) didn't have anyone on call that knew anything about clefts. They called a doctor to come see us, he didn't show, so we were discharged without seeing anyone.

I remember the questions. Was the cleft simple or serious - everyone said different things. Would Elly be able to nurse? Would Elly ever drink normally? Would she need surgery? How many surgeries? At what age? Would she be able to speak normally? Would she need speech therapy? I remember the nurse (an angel!) at a plastic surgery center who finally told us more about Elly's partial cleft and what it actually meant. She looked at me and said that it wasn't my fault, and she didn't know how deeply I needed to hear those words. She gave me a way to feed my hungry baby.

I remember a few days after Elly was born packing up to go to another appointment. She was crying, Judah was disobeying and crying, I was attempting to pack up bottles and pumping stuff and freezer packs and two diaper bags. We lived 30 minutes+ away from everything and I was pumping every two hours.  We were taking a second language acquisition course and were still raising funds to move overseas. I cried the entire drive to the doctor's, holding Isaac's hand, and just managed to get out, "It's just a lot" as an explanation. It was. I have been overwhelmed by juggling everything many, many times this year.

I remember at three months old not letting her out of my sight for weeks before the surgery. I remember walking her around the hospital, amazed that she wasn't crying despite having not eaten that morning. We passed three other cleft kids, one having a seizure, one preparing for yet another surgery of many. Elly slipped into a deep sleep in my arms just before I handed her off to a nurse to take her in for surgery.

I remember packing up the pumping bag and running to meet Isaac in post-op and my heart rising to my throat as I saw her limp, white body. Her hair was orange from antiseptic wash, her tongue had a stitch in it that was taped to her chin to keep her from swallowing it. Her lips were ringed with dried blood and her mouth had tubes and wires coming out of it. It might be my single most sickening moment of motherhood so far. I held her for hours, limp, unresponsive. I held her for hours that night as she came out of the anesthesia with wide, fearful and pained eyes and a mouth filled with pooling blood, murmuring but clearly afraid to swallow or cry. She only calmed when I held her and began murmuring if anyone else tried to take her, so I held her all night long. There was a fiercely protective momma instinct at play. She needed me. I would give her all that I could to help her just get through until it was okay.

I remember when the surgeon came in the next morning and told me that the cleft was fully closed, and how it took me a while to even process what he'd said because I hadn't realized it was possible. I remember the sun coming through the window and the silence of the room, just me and her again. I remember feeling deep peace and the sustaining prayers of God's people.

There were other days in recovery when we tried to figure out feeding and pain meds and it was stressful and overwhelming. But mostly she was fine after that. The difficult thing for me as been the daily juggling of two small children, nothing to do with the cleft palate, really. Just trying to figure out how to be a mom. That has been the primary, daily lesson of this year and, I imagine, next year as well. Ongoing.

I do feel, however, a deep sense of thankfulness. I am so thankful for the nurse that saw us after that first week, who helped us take care of us Elly and understand what all of this meant for her and for us. I am so thankful for the skillful surgeon who took us under his wing and worked wonders on Elly's palate. I am thankful for people who prayed. I am thankful for Elly's fight to eat and gain weight and learn to babble. I'm thankful it's gone as well as it has.

Most of all I am thankful for her, for her life, sweetness, and energy. She is delightful. She is my daughter. My Elly bean.

Sunday, October 26, 2014

The three things that make a "good foreigner"

Someone I know went off recently about Westerners (mostly missionaries) who come to Indonesia, saying that he wishes many of them would just go home, with a caveat that there are a few who do good and who should indeed be here. He speaks from a unique perspective. His parents were missionaries, so he is technically from the West, but his heart is here, and he moved back to Indonesia, became an Indonesian citizen, and married an Indonesian woman. He has feet in both worlds. I often seek his advice because of his unique perspective.

I messaged him and asked him what, from his perspective, made the difference between those that he wished would go home and the "good ones". He said three things that I will summarize as I remember them.

1. Genuine relationships and involvement in the local community
2. Generosity
3. Morality/Integrity

This came up in my language school a couple of weeks back as well. We had completed an assignment that involved asking our Indonesian friends what the general perceptions of the community were towards various types of Westerners and their lifestyles. It unearthed some surprising resentments towards particular countries, but beyond that I was surprised to find that my friends responded to questions about the lifestyle of Westerners by saying that they really didn't care if the Westerners lived in nice houses or were wealthy. What mattered was what KIND of wealthy person they were. Were they building relationships locally? Were they generously giving to the neighborhood needs, above and beyond what the average citizen gives? Were they friendly?

When I reported these conversations in class my instructor became very serious and put aside his "Indonesian teacher" hat for a moment to give advice. He said that he wouldn't advise us to try to live in relative "poverty" in order to be like those around us. Like it or not, we will be seen as wealthy, no matter what type of house/car/motorcycle we choose to drive. Our heart and attitude matters much more. He gave an example from within the culture of two types of wealthy Indonesians. One who would drive through the neighborhood in his car and roll down the window and stop to talk to neighbors, and would give above and beyond at weddings/funerals and to those he employed. He would still shop from local shops instead of only at the big grocery store downtown, and would still eat at the roadside food stands instead of just at night restaurants. On the other hand, a man who came into wealth and so perceived himself as better than everyone else, putting a fence around his house to separate him from his neighbors and guard his stuff, and only eating and shopping far from his neighborhood - he is stuck up and unappreciated.

I told my instructor about the three points given to me above and he emphatically agreed and asked me to write them out and send them to him so that future students could benefit. I thought I'd post here as well. It's ironic to me that in the US before coming there was so much said about your vision and effectiveness, when it seems that perhaps the most core things are very simple things that (in my opinion) flow naturally out of the core principles of the life of a Christian. Love God, love others.

It does take reevaluating my life weekly to see if I am living this way, because as simple as it is, sheltering oneself, hiding away... that is actually all too easy. But learning to love and live deeply in a community - that is my goal.

Friday, October 17, 2014

Ridiculousness in the Discipline/Spanking Debate

A couple years back I posted about disciplining kids and really struggling to figure out what we should do, what I was okay with, and all that stuff. Well, Judah is now three and a half, smack in the middle of testing boundaries constantly, and.... have I moved ahead at all?

So here's the thing. I would still love to not spank my children. There's enough research on the topic that is negative and I have personal reservations about how negative spanking can be when it's linked with anger. But then in the middle of struggling to discipline in the face of direct defiance, I have felt like... I just don't know what else to do! Kids have to learn to obey and behave. And yeah, I know that they need to run around and be crazy and that they get tired and hungry and struggle to keep themselves in check. I know to get down at eye level and speak to him lovingly and firmly. This, however, doesn't take care of disobedience, at least not for us, at least not right now. So, I have spanked, though not often, because sometimes I just don't know what else to do.

I am nearly finished with Shepherding a Child's Heart, the book that so many people in my circles love and recommend. I mostly hate it. There is some good stuff in there about communication and about the ultimate goal of parenting being to point a child to glorify God and enjoy Him. However, the thing that sets the book apart from other parenting books is that it specifically endorses spanking, and I decidedly hate the way they come to this decision. Essentially, they quote the Proverbs about “the rod” and discipline, and say that all other methods of discipline are insufficient, inconsistent, or punitive, and children must be spanked because the Bible says so. They also say that children should be spanked every time they do not obey quickly and directly.

Sorry folks, I just disagree. The scripture speaks about discipline, with “the rod” being a method of discipline of the day. The message is that parents must shepherd and discipline their children, not that children must be spanked. The book also has little in it of grace and there is a lot of talk of children being out of the “circle of blessing” as soon as they disobey in any way. There's no understanding of the constant “twilight' of our souls in which we are being made new but always still also dealing with our flesh. We are either in sin or in holiness and apparently we must discipline our children out of sin and into holiness. 

So. Frustrating. I ranted and raved about the book to Isaac nearly every day. 

In the midst of that frustration I engaged a community of women on a Facebook group I'm involved in. They are believers and fellow Moody alumni, and I know a lot of they (us?) follow attachment parenting methods. When that was being discussed, I threw in my questions about discipline. For those who don't spank, help me understand what else you do? What are the other options? I put in a specific example, but most responses coming from the attachment parenting crowd seem to be about overall theory. That doesn't do me much good. I need to know what you specifically do in response to direct defiance from a child.

I've since been pointed repeatedly to Laura Markham's website, and have read article after article on there and you know what? I am at a loss. According to her, time outs are no good. Spanking is no good. Parent-instituted consequences are no good. So, as I said, what do you actually DO when a child is disobedient and there isn't a natural consequence?? One page gave a play by play response and this is what I come away with. Essentially you do everything you can to avoid coming to that point of direct defiance (yes atmosphere, offer the child win-win options, redirect, etc.) , but if you happen to get to it, remove the child from the situation and talk it through.

Which.... you know.... I quite frankly do not believe that is a sufficient way to address inappropriate behavior and defiance. That is the first thing I do with my kiddo, and on occasion he is then able to resolve the situation. Often, though, nothing changes in his actions or attitude after being removed and speaking seriously together about that situation.

Secondly and more importantly, Markham's ultimate goal in discipline seems to be maintaining a positive relationship with the child at all costs. Creating a strong relationship means the kiddo will respond to gentle guidance instead of needing ultimatums. Evaluate all responses based on whether they strengthen or weaken your relationship. “Defiance is always a relationship problem.” Gosh. There is no sense that the child might sometimes have a heart problem and might make their own negative choices and firmly stand in them. 

In the end, I am equally frustrated by Laura Markham and what I have seen so far of the attachment parenting ideology about discipline of toddlers/preschoolers. On the Shepherding a Child's Heart side, the child is viewed as bad and in need of redemption via spankings. On the other side the child is viewed as good and simply in need of everything being nice and that will be enough to “gently guide.”

I think there's a theological problem in the realm of anthropology and hamartiology here, and it drives some bad ideology about parenting and discipline. There's a song I loved in college by Shaun Groves called “Twilight” that played off the image of the “dawning day and dying night” in the soul, “saint and sinner mingled in my veins.” You, me, my kids, we are stunningly beautiful, precious beings that reflect a God of grace, beauty, creativity, and love. And yet I know my own soul is also “prone to wander” and that without discipline, whether it be from the church, community, the scripture, or discipline that I myself implement on my own heart …. I do damage.

And so, I believe my children need love and relationship and discipline. As their parents, we are responsible for that. What that specifically looks like, I still am not sure. I just know I'm disappointed by the extremes on both sides, and the way the evangelical world sometimes buys into them. Anyone have any other favorite resources/books about parenting? I'm in the middle of struggling with it, and I find that reading keeps my thinking and being intentional in how I respond to Judah in this stage.

Friday, September 5, 2014

Seeing Ferguson Unfold from across the World

I watched the Ferguson situation unfold from across the world, in another culture. I don't know the nuances, I don't know how is at fault, but I know one thing. We all see situations through the lens of our own experience. Here is mine.

I went to college in downtown Chicago. It was an area with a reputation for both street violence and police brutality. One day Isaac and I were coming home from having watched a movie and stopped at the McDonalds down the street from our school to grab a quick burger. We were sitting discussing the movie when a black man in a wheelchair with a cast or bandage on his foot started wheeling around the restaurant and asking for change. This was common - there was a homeless shelter around the corner and although panhandling in the restaurant wasn't allowed, it happened often.

A white cop came in to usher the man in the wheelchair out of the restaurant (also common). He told him to move along and the man grumbled and avoided obeying. The cop requested again that he move towards the door, and the man again sort of avoided and grumbled and complained, with his voice rising and people turning to watch. The cop reached down and took hold of the back of the wheelchair to move it forward towards the exit. The man in the wheelchair resisted, reached down and pulled the footrest off of the wheelchair and brandished it at the cop, yelling at him. Totally inappropriate behavior towards an officer of the law.

At that point the cop also lost it. He grabbed the footrest from the guy, pushed him against the wall, and began beating the man's leg (with the bandage on it) with the footrest. They pushed each other back and forth from wall to wall and there was blood from somewhere and as a woman screamed and said, "CALL THE COPS!", they pushed each other out the door and down the street. That was the end of what I witnessed.

When things happen like Trayvon Martin or the situation in Ferguson, I always think back to that situation. Sometimes people attack cops and often they are incredibly disrespectful. I also know that sometimes cops lose it and do things they should never do.  I tend to think that the burden of responsibility lies heavily on the police. They are officers of the law. They are, by definition, guarding against lawlessness. So it should come as no surprise when those that they deal with are unlawful, disrespectful, or violent. They are trained to respond appropriately. It is NEVER acceptable for a cop to lose his temper and explode in anger, even when they are being treated unfairly. How sad is it that in that situation we were in desperate need of an officer of the law, but the screams of the witness went unheeded because the law was already there and was escalating and beating rather than averting a crisis? I also know that most likely that situation was never publicized because, you know what, who is to know? If it's a homeless black man with no advocate in a ghetto McDonalds, the cop subconsciously probably thinks, "No one is going to report this."

There's another experience that provides me a lens through which I view these situations, and it's being refined right now, across the world from Ferguson. I mostly grew up among a minority people group in this country. They are black and they are of a different culture, race, religion, and just about everything than the rest of this country. I grew up surrounded by a very tense political situation as rebels fought the national government, often in very inappropriate ways. I heard the frustration of the local people as they felt different, unheard, unempowered, voiceless, systematically disenfranchised, scorned, and sometimes persecuted. They were sometimes afraid.

And now here I am, doing language school in the center of the majority people group. I have been having conversations about the diversity of this country. I am astounded by the entirely different perspective they have. These are good people here. They are proud of the diversity of their country. They see the minority as a part of the this beautiful nation... different but part of it. Where the Papuans would say that the money, power, and cultural superiority flows from here, the people around me do not see themselves as privileged. They know there has been a political struggle across the country but it is seen as separate. They would never view themselves as a part of the problem. Why? They respect the minority. There may be a certain stereotype of the minority as ignorant, lazy, and uncouth, but they aren't going to judge people by that stereotype.

It's been a bit shocking to realize just how different the two sides see the same situation. Because I am seeing this as the situation in Ferguson unfolds, I realize that I am seeing us in the mirror. This majority group is like us in the US. We struggle to understand that situation because, well, it is possible that some guy attached a police officer and the police officer shot him in self-protection. We DO NOT see the systematic struggle because we don't personally feel prejudiced and we live entirely separate from the reality that is everyday life for the minority.

I think that's the crux of what I'm realizing. We are clueless. See, here's the thing. Systematic struggles stay the way they are despite individuals being personally blameless and unprejudiced, because the system perpetuates itself. This is a great blog on that topic. Read it. We also don't realize just how much powerlessness feeds the abuse of power. We look and see poverty, crime, and educational problems, and don't realize how much that exact problem allows a cop to do something that he would never do across town in our neighborhood. We see a problem that is not OUR problem, that we aren't personally contributing too, and forget that in a society, every member of the society contributes to the system. If the system is unjust, then as a part of this society, we are a part of injustice. And we are, indeed, our brothers' keeper.

I don't have answers. I know it's complex. I just also really believe that we have to open our eyes and realize that we ARE a part of this, and it IS our problem.