Stand up

IMG_5605Right before we went to the beach, Monkey got an UpSee. The picture explains much better than I can, but it helps him be upright and feel the movement of walking and standing. It’s great. He loves it! Our ABM (Anat Baniel Method) therapist will tell you he’s not sure if it helps him learn to walk or not but at least it gets gravity on his side for other bodily functions that work best with a little help from gravity.

He also loves standing against the wall. He just likes to be up. So does Princess. She will come and stand next to him on the wall. She’ll continue to play or do her thing but she loves to be next him. Every now and again she’ll reach over and hold his hand or try to bring him something to play with. When he’s getting strapped into his UpSee she cannot contain her excitement! ‘Bru Bru walk! Let’s go Bru Bru! Outside Bru Bru!’ She grabs his hand walks with him.

She knows it is a special time when Monkey is standing. I don’t know what to tell you, she knows it and  she loves it. She loves her brother so much. I wrote a note once with little intention of anyone ever reading it. My wife encouraged me to share it with friends on IMG_7175Facebook (pretty much my first blog post). In that I tell you there is no truer example of the love of Christ in my life than the love my children share. I could type this sentence in every post I’ve ever written or will write in the future. It is the encouragement that gets us through every hour of every day. An encouragement that inspired me to write this blog to begin with.

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I hate this is so blurry. But since it’s because he’s moving, I’ll get over it 🙂

She loves her brother. She is his biggest cheerleader and I have a very strong feeling that she always will be. I don’t think that there is a person on earth who has a better understanding of what it means when our Monkey stands. To us, it what we do to help him learn (and digest). For Princess it is joy and an unbridled excitement. I will tell you and tell you again about the joy I feel when I see them together. When I see her explode with laughter and eagerness that her brother is standing, I can only begin to understand how great God’s love for us must be and the joy He feels when we do things so simple as standing and loving.

What cool kids do

Some like to play sports. Others enjoy some quiet reading. Perhaps some TV or video games. Well, you’re about to find out what the really cool kids do for fun.

We have spent the last day and half in Charleston, SC. Yes, The Holy City. We love it there, have wonderful friends that call it home. No, no yachting, fishing, promenading , shopping in the market or the other sundry of incredible things you can do in one of the oldest places on the East Coast and certainly the most cultured 😉 There was a time in our lives when we spent a good bit on time on Rutledge Ave. Well, we still do, just not quite the same neighborhood.

Monkey has been hooked up to an EEG (http://www.mayoclinic.org/tests-procedures/eeg/basics/definition/prc-20014093) for the better part of the last two days at MUSC (Medical University of South Carolina). This my friends cannot be topped by any other mere Charleston experience (if you do not hear the sarcasm falling off my fingers, you do now). This particular wonder measures his brain activity, can detect where seizures originate, and determine if there is any other concerning brain activity that occurs between seizures.

photoA quick rundown of what this looked like. Monkey has seizures in his sleep regularly, this is nothing out of our ordinary. We hear him, take a peak on the video monitor, make sure he’s good and everyone goes back to sleep. While on vacation at the hospital they gave us a button. He has a seizure, we push the button it marks the time on the EEG report so they know where to look. Ingenious, right? Well, if that were the whole story, sure. Seizure, push button… overhead light comes on, alarm sounds at nurses station and in rushes every nurse and CNA on our hall. Monkey had two seizures in the middle of the night and one at 7am. Now this is how we do Chuck Town. I think I liked debutante balls and cocktail parties better.

Disclaimer here is that these lovely people do their jobs very well. Some parents and situations require them to show a little panic. We are not those people. Talk about getting your heart rate up. I think we needed to be hooked up to the pulse/ox machine more than Monkey did. They did read our reaction to this fairly well and calmed it down a bit. Good news is it’s over. Monkey cooperated and had seven seizures while hooked up and did so within 24hrs. Which is great. Some kids get to sit around and wait for days to have a seizure their docs get to record. Better news is we’re home. Initial results looked good, nothing unexpected going on.

Next Monday’s adventure is a swallow study. Cancel your dinner plans and BBQ’s folks, this is how the cool kids do it.

A Confession

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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.

Beach week!

IMG_2216.JPGThis past week we have been on vacation with my family at the beach. It is something that we have done every year for my entire life minus a couple instances where people made some haphazard decision to go somewhere else. (Catastrophe struck, we go to the beach, we are beach people.) My cousins their spouses, their kids, my sister, my brother-in-law, nephew, mom, dad, aunt, uncle and grandmother all go. We have grown and shrunk, but mostly grown. We have to rent two houses now. It’s a lot of people. It’s a great time, and tiring and I’m home now writing this. The bags are unpacked, house cleaned and kids are in bed. Whew… now, there is another week off after this one right?

For the last two years, Monkey has scarcely known that he is at the beach. He has had seizures all day everyday and slept them off while the rest of us beached it up. Which is a shame beacuse when he was two, shortly after he started having his first seizures, he loved it!

The great news is this year, until early this morning and into the day, he went the whole week without a seizure!!!!! It was incredible! He played in the sand, he got in the surf, we went for walks and he watched IMG_2223every thing! I think he probably just got exhausted, but wow! He played! He picked up sand and put it in his mouth, knew who people were and played with them and his toys. It is difficult to completely tell you how wonderful it really was. He has not reach out, picked something up, and put it to his mouth in months, let alone feed himself. I did not witness this event first hand, but my wife an aunt tell me that he put food in his mouth!

It has been joy. He hates getting sunscreen put on, he actually crawled away from us while trying to put in on him. It has been a week of the smallest, huge accomplishments that Monkey has had in while. He has photoplayed with Princess and reached out for her attention like she has not experienced from him in a long time. He is thrilled to be home and left to his own devices. He has been in motion since he hit the living room floor. Despite a rough start to the day, it has ended wonderfully.

It has been a gift of a week for us to get to see our beautiful son come to life and enjoy what we know he does.

Men

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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

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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.

There he is!

First some housekeeping.  For the purposes of ease, we’ll refer to our son as Monkey and daughter as Princess. Now…

There he is! (dere e iis, phonic spelling as our daughter says it, or something like that)

So as we are now on our 5th seizure medication in two years, we’re decently pleased. By that of course I mean that it’s a tolerable lesser of evils. Little in the way of side effects and marginally helpful. However, we are at the top of the dosage limits and he will probably out metabolize the drug  soon. Monkey has intractable seizures as a side effect of his brain malformation. That means that they are relatively uncontrolled by the medications.

In the last 8 months or so Monkey has regressed quite a bit develpmentally due in part to increased seizure activity but also because of the last medicine he was on. By Thanksgiving last year he was pretty much just sitting around looking at the floor. He was not engaging his toys or us a whole lot. Prior to this time he had the energy level of a typical three year old. He would army crawl for mobility. He could push a chair across the room, climb up the chair, and then climb onto the table where he had pushed the chair.

I say all of this not dwell on the past. I say it because he is coming back around! Starting to move around again, play with some of his favorite toys and he is making good eye contact. Now, he does not talk. However, for those who read him well and particularly for his mom and I, he is communicating his emotions and feelings. It is a true joy to see him coming back to us. We still have a long way to go before we get back the IMG_0437day when we find him standing up with his face pressed against the glass doors in the middle of our house.

This all may sound sad. I assure you that it is not. We know that we have been given a great gift in world of kids with brain complications and epilepsy.  Some parents never know who their children are behind the drugs and seizures. We were fortunate enough that Monkey had two years of life before we knew his diagnosis or he showed signs other than developmental delays.  We know who our son is. We know when he is missing and not himself. We are in a constant struggle between seizure control and making sure he doesn’t disappear.

So we will continue to hope for better. Hope to balance side effects and seizures. New laws in our state and others nearby offer us hope that maybe cannabis oil can help him. You may have seen some of the success stories for children with severe types of epilepsy that have started this treatment. We are cautiously excited. There is at least an opportunity to pursue, that doesn’t have the physiological side effects of most of the anti-seizure drugs available.

It’s hard to get excited about these things beyond having a decent choice. But it’s also hard not to at least entertain the idea of having our son back. One day we will see his beautiful smile light up the room again. This is our hope and our gift is knowing what it looks like already.

Getting started!

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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.

Our different kind of normal