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A Confession

confessionLying seems like such a harsh way to say it. Perhaps bending the truth would make me feel better… However, neither of those really capture the essence of what happens. During a conversation I had with one of my cousins last week I told her the truth. It felt good. It felt right. I slid it in there like a nice punch line. Now before you get all worked up, this is not earth shattering in the ‘I can’t believe they do that!’ kind of way. At least I don’t think so.

So here it is, for all the world to know. Are you ready? Really ready? I’m not sure you are… but here goes.

Father forgive me for I have sinned… I dare not mock the Catholics. Nevermind that business.

Lets try again. This getting old yet?

We make things up! All the time. About Monkey and mainly his seizures. No no, not super important medically factual information. But we often find ourselves in conversation with well meaning friends and family about Monkey and his seizures. They want to know what causes them, they’re naturally curious. Well the only scientific answer there is or ever will be is that his brain is smooth. Very technically it’s called neuronal migration disorder associated with his isolated lissencephaly (this big supercalifragilisticexpialidocious word means smooth brain).  So a brief science lesson by the non science teacher in the house.

Your brain has wrinkles and folds. Within those wrinkles and folds are housed millions of synapses that fire neurons and receive neurons. The wrinkles and folds carry the fired neuron along its way until it reaches its intended destination, your body reacts accordingly and you put your food in your mouth. I’m pretty sure this is a close, if not scientifically irrefutable, explanation of your brain according to my basic college level biology understanding.

So what happens in Monkey’s brain when a synapse fires off a neuron on its instantaneous journey of a long long way in brain miles, is that it doesn’t have a good road to travel. This is because his brain is smooth. It  has far fewer wrinkles and folds than mine and yours. His fired off neuron may travel just fine for a bit and then it runs into brain pothole. A place where the original path runs out of a good wrinkle. Well, I liken this to a bulldozer running into a wall that cannot be moved. The driver of said bulldozer would have some serious whiplash. And such an accident on the neuron highway has struck again as Monkey is trying to fall asleep right now.

So what’s with the confession you ask? Well, sometimes we don’t get into the anatomy of a seizure in well meaning and social conversations. People will mention that they have heard this and that about the causes of seizures. They had a friend who’s kid ate something, there was a low pressure system and storm coming, etc, etc.  We do speculate the environmental causes of Monkey’s seizures to some extent. We think logically about what occurs during times of his seizure clusters and try to form a hypothesis about what is going on (I am married to a science teacher. Did I mention that?) Sometimes we even reach the same guesses as Suzie’s friend’s, mother’s, aunt’s, cousin’s, boyfriend’s, nephew’s, brother. But that is the best they are, guesses.

We share these thoughts with doctors, or used to. They just look at usseriousdrface with that doctor look. You know the one. They’re looking at you like they’re listening, but you’re thinking, I bet they’re just thinking about what they want for lunch. Then they say something profound like, ‘That’s interesting’ or maybe ‘That is possible, I suppose’.

We even bring it up ourselves and speculate together with the well meaning friend or relative. Just like last week when I was talking to my cousin. I just heard the words coming out of mine and my wife’s mouths as we talked to her. She listened with loving kindness, as she does all things, and then I told her the truth. Sometimes we are just making it up.

Why you ask? Well because some people don’t or can’t understand. Sometimes it’s easier for us just to talk on through a conversation. A lot like that bulldozer. Sometimes we’re just tired of explaining it again. Then there is the possibility that if we didn’t talk to you all as if we understood it all and have it wrapped up neatly, we might start to believe we don’t. Which is probably closer to the truth. I hope you can forgive us. Sometimes its just easier and depending on who it is or how we’re feeling right then, it’s even a little fun.

Men

symbol-20252_640I have reached a conclusion, men don’t care. Or nobody thinks we care. Or some combination of both. There’s nothing out there for us, tailored to our sporadic thoughts and limitless ability to care about only semi-useful information. Nevermind, everything is catered to that… What there is a shortage of is that which helps our hearts survive in a modern society. Same story, different century, and same results. We’re just men/boys and can’t be expected to be faithful and driven towards a God-centered life, with all of the societal distractions and expectations to provide and spend money (the source of monastic societies?). Even popular Bible/Devotional sites skate past us. I think it’s possible to be speaking from a generational perspective in this case. But if that’s true, where will our hearts and those of our children be in the future?

Maybe we’re just assumed to be primary consumers? I don’t think so. Not anymore. Let’s be honest, our wives/girlfriends/mothers/somebody consumes the information around us and prioritize it for us. This is not Mad Men. If my wife doesn’t like it, we don’t buy it. I even have her read these posts; just to make sure I’m not completely leaving women out, for just this reason. Hypocrite? Yep. So if your ‘other’ told you about or to read this, sorry. Maybe you need to hear it.

Do you ever like to type in the first part of inquiry on Google just to see the list of common searches? Probably not, I’m just weird like that. Nevertheless, when I type in ‘devotions for’ the first responses are as follows… women, teens, couples, Lent and then men. Really, after Lent? I’m not downplaying the importance of deprivation leading up to the resurrection of Jesus, but really? Nor am I belittling the value of couples spending time in God’s word. What I am say is this, shouldn’t we as men do our best to make sure we’re whole enough to be part of that couple? (Good news, as of editing this, we jumped Lent, but I’m leaving it for impact and literary sake. But at least during the Spring, Lent. Probably be Advent come December.)

I know there are pastors out there who encourage and write for men daily. But in my limited opinion we are one of the most susceptible groups of humans in the world to follow a path of immorality, while being told to feel good about it. Which is funny, most people see us as the presumed leaders of morality.

A few things need to happen before we can possibly lead in this way. First, we have to constantly remind ourselves that our mind is not as strong as we think it is. Second, we need to be encouraged and reminded daily that our purpose in this world is far beyond our physical needs and desires. Third and not any less important, is how unfaithful and useless our eyes can be when we forget about these first two. My wife reminds me to do common chores around the house regularly. My cardinal sin is forgetting to put a trash bag back in the can after I take out a full one.  Simple, I know. But the point I’m making here is that if we can’t manage to train ourselves to remember the little things, I think we might be in trouble.

What now? Start by being the courageous man you were created to be. Be amazing. Be better and rise above the cloud of crap that is around you. While most of us can’t just cut off the world around us, we at least need to be conscience of our weakness and inability. Perfection is not a requirement.

Beautiful morning

Two days ago Monkey woke up with a seizure. This is not unusual. He often has seizures all night long. In this case, it was just this one, first thing. Monkey and Princess share a bedroom. We live in an old two-bedroom house. We really could use the third. But houses don’t really sell here and secretly we love our house. It has old oak floors and bead-board ceilings.

10487217_10152509062711675_541402670449650124_nSo they share a room. This works pretty well most of the time. He doesn’t wake up when she gets up crying for mommy and she doesn’t wake up when he’s having a seizure. On this occasion however, Saturday morning about 8am, she did. He sometimes makes noises when having a seizure and did this time. Princess woke up instantly. ‘Oh no bru bru! Oh no!’ They sleep in single beds side by side. She has an owl stool she uses to get in and out of her bed. Down she goes, pushes the owl stool across to Monkey’s bed and gets in. Pulls the covers off him, checks on him, decides he needs further attention and comes running for mommy and daddy. This seems like an appropriate time to remind you that Princess is two.

This is what it is all about isn’t it? We as parents live for moments like this. It is a pure reflection of God’s love in our children’s lives. We would love to take credit for these times. However, that would be like claiming the miracle of Monkey’s life in general. It is in moments like this we’re reminded of what is more than just us. We get a glimpse of love just as it was meant to be, untethered and worthy of imitation.

Getting started!

I was inspired to write a blog because of my son. He has a rare genetic disorder that, at the age of four has left him unable to walk or talk or function at what most would consider a normal developmental level. I searched for successful blogs by dads on the topic of special needs children. While finding some that were, let’s say useful. Most were as sterile and institutional as the overpriced equipment and ‘specialty’ devices that are marketed to us to presumably make our children’s lives easier.

IMG_0157My question was where is the dad that recounts the daily struggle of parenthood in a forward and honest way. Let me be clear, I don’t mean the dad that laments the loss of his hobbies or ability to drink beer and play golf at his whim. I don’t mean the polarized stands on either end of the spectrum. I mean the honest; I participate in every aspect of my child’s life because I am his dad, period. Not because I am trying to relive my youth, make the wealthiest predecessor, or create the next ruler of the world. Not that dads of special needs kids have those as options, but I am also looking for that dad of ‘normal’ kids. I’m looking, but I know where you are. You’re doing what you always do. You love your children and family with everything you are and hope to be. You allow your children to change your lives. So don’t misunderstand my search, as one for something I don’t think exists. I’m just tired of looking around and only seeing the bad, over cultured, under committed, man.

So here I am, writing. Life is hard and challenging. I am not looking for pity. I am looking to provide encouragement and perhaps direction to dads specifically, but people in general, to overcome and share an experience that leaves us searching.

What do we do when life throws us something unexpected?

Well, some crumble, understandably so at that. Some fight what they can’t see. Then what we all should aspire to, to continue. Continue living and helping live. I will not pretend like this is easy, but as parents, as fathers, do we really have a choice? I mean, yes, I could quit. Whatever that means… stop caring for my children and my family? THAT IS RIDICULOUS!

I realize we live in a culture and world where people just give up all the time on lots of things. I’m not talking about soccer practice or violin. I’m talking about the ease with which we quit what is important; marriage, jobs, providing, nurturing, and loving each other.

Really, I want to provide an alternate story. I want dads especially, but people everywhere to provide a better story. The one that most of us live, the one where difficulty arises and we preserve. But better than that, the story where we thrive.