Everybody now! This little light of mine!!! I’m gonna let it shine! This little light of mine! I’m gonna let it shine! This is my version of singing. Really, you don’t want to hear me sing. Just ask the poor kids I teach Sunday School to. Every now and then, things just happen. They put up with it, but nobody is about to ask me to sing in the sanctuary, not even by myself 🙂

The question has little to do with singing however. It’s got more to do with location. God’s presence in your life in certain geographical locations. There are places that the light shines differently. There are places that it shines brighter, cleaner, and in a more revealing way.

For Morgan and I we are fortunate to live in one those places to us. We also spent the last four days in the mountains of North Carolina at my parent’s vacation house. Just the four of us, well five, we took my old dog. She is the only one we have now that lived during the childless days of our lives and we hiked every weekend exploring the Blue Ridge. We take her along to relive her glory days. But just us and the kids. It was great. Monkey had a great time, and had a good weekend. He was up each morning ready to go! It was relaxing and we got to start the wonderful process of sharing some of the things in God’s world that we hold close.

We love the mountains. The rivers, rocks, waterfalls (as Princess would say, watershalls) cooler weather and the light.

I hope you have these places in your own life. Places that as the afternoon is about turn the corner to evening, you look at the light coming through the trees and you stop. Something grabs your soul. It heals. It hopes. It lets you dream. Places where you meet God or should I say He meets you.

Sometimes it is hard for us to see the flood of light that surrounds us. We have a bad day, week, month, year. I would tell you to look for it, but I’m not sure it works that way. I would tell you the steps to take to see this light but I’m not even sure it’s the same for everyone.

What can I tell you? It is real and embracing. It warms your heart, reminds you of something cherished, and lets you look to the future and be comforted that this light is shining the way.

The incredible part? That as long as the sun continues to shine on our world, this light shines everyday. So no, don’t go looking for it, just open your eyes to see the beauty of God’s creation. It’s right in front of you. Be reborn and invigorated for life. Maybe not the one you chose or would have, but the one you have the distinct pleasure of living.

Sorry for the long wait. I know you’re on pins and needles waiting for the next words… I hope not anyways.

So it’s official. We are mini van people. I don’t know what this means. I like to think of it as practical. Which in itself must be some sort of commentary to my age. Or perhaps, just priorities. Either way, we have bought a car not because it was the fun thing to do (granted, the process is never fun, I hate car dealerships).

But I did find myself sitting in the thing for an hour playing with all the dad friendly gadgetry that they put in there to make me feel better about driving it around. The wonderful part is it’s easy to put Monkey in and we will save a gagillion in gas since we were hauling the fam around in a Suburban.

Next up, Princess is a little compulsive. As she really grows in to two and is getting revved up for three, she has become quite particular about several things. Morgan says this is my fault due to my patterned behaviors in doing everyday things. I accept, but she’s still her mother’s child and for those of you who know my wife, you know the truth. I will say no more.

Want some examples of this funny and sometimes insane behavior? Of course you do. This is the best entertainment you’ve had all day.

Here we go. Our side steps where we most frequently enter the house or leave has an iron rail that splits it in two sides. Oh yeah, she’s got her side and we have ours.

Now what happens when Daddy goes down her side you may ask? Well, this is pretty much how it goes down. She sits down or stops moving altogether and insists, as if I have committed a cardinal sin, that Daddy has gone down HER side. I must ascend the stairs and return appropriately down the other side. All of this occurs under her careful supervision, of course.

This trend of her path/side/chair is pretty much how we go these days. We have tried to start mixing it up a little here and there. You know, just in case this is permanent 😉 Might as well get a jump.

Why do I tell you this? Well, this stair business combined with car entry procedures, especially with the new car (cough cough mini van) can take quite some time. Now, meanwhile, Monkey is strapped into his seat watching his sister orchestrate perfect house leaving and car loading procedures.

Never thought we’d say this, but it is way easier to get Monkey into the car than it is to get Princes in. And our special needs child is supposed to be the difficult part of this? Clearly our daughter got just the right combination of my quirky compulsiveness along with her mother’s natural ability to tell people exactly how to do something. The correct way of course.

For those of you who don’t know, today is Pitt Hopkins Awareness Day. Monkey has a friend with this rare genetic disorder. This post is for him.

We know he and his parents through our hometown and therapy. Crazy right? Small place, small world and everything (at least as I have come to know it) comes through here at some point.

This amazing boy is one of about 400 worldwide with Pitt Hopkins. That is rare. Check out the Pitt Hopkins Research Foundation. Also see the incredible kids at Eastside High School in the upstate of South Carolina who have raised a lot of money for Pitt Hopkins research as part of their Spirit Week.

Lastly click here to see an incredible video that the Pitt Hopkins Research Foundation has put together.

Now, if you didn’t click any of those links. DO IT NOW! No kidding, don’t even read the rest of the post unless you do it. DO it. Do it, do it now.

Clicked yet? NOW! I’m sorry if I was sitting beside you this would be like a childhood game of ‘I’m not touching you!” Have you clicked them ALL? How about now? Ok. I trust you.

Did you do it?

For real this time.

A pastor I once knew (and not specific to them, I’m sure) said and probably still does, “Preach the Gospel, use words when necessary”.

Is that enough said? Probably.

Our son and his brother in the world of rare genetic disorders don’t do much in the way of talking.

But I guarantee they have a lot to teach you about your life. About how to live. About how to love. About being better. About amazing, incredible, awesome, struggle and hope. Most of all about love and hope. Might sound familiar to something you know (1 Corinthians 13:13).

It’s like this. We do a lot of things with our mouth. Some of them are fairly valuable, like eating and drinking. Speaking, we do that too. Compared to the others? Might take a back seat. I’m not saying I wouldn’t love for my son to burst into strings of sentences about how he feels and about what he sees. I would be lying if I said I don’t hope for such a thing. But it still would not be his words that would do the teaching.

So today, what’s left of it, think about those with Pitt Hopkins and remember, these kids are not just rare because of their genes. I have come to the conclusion that they are probably more rare because they can teach us more about how to love and hope than we could ever hear from someone’s words. So if you’re ever given the life changing opportunity to get to know one of these superheroes, don’t let it pass you by, you will truly be missing something awesome.

This is just what you needed. It is just what we needed. It has happened a couple of times over the last week and it was right on time. As I have said in previous posts, this time of year is the busiest time for our family. I joke with folks in July that it will be October by the time I know who or where I am again.

So what was this little something? Well, Monkey laughed. It was great. We were sitting in the bed getting some work done one night and we heard it. We didn’t know what it was at first and then we checked the monitor. Monkey was wiggling around and giggling with a little smile on his face. Fantastic! Made our month, our week, day, hour, year. And it’s happened more than once.

We got a small sample, listen close, you’ll hear a little giggle. MOV_7007.MOV

That makes me smile. One of those I can’t stop it from happening kind of smiles. I know it might not seem like much, but that is super awesome.

In other news, sorry for the long gap. It’s been busy. I’ve started back to graduate school, Monkey has therapy, Princess has gymnastics, work, work, homework. You know, life. I’ll try to get back on something more regular soon.

Other awesomeness, we now know of three other children with lissencephally. Two of them are of the same family in a place not so far from where we live. The third, that we found out about first, was actually on the NBC Nightly News one evening. Check he and his brother out here. There is something beyond awesome when it comes our children and their siblings.

Also, thanks for reading. I’ve talked to several people lately who have enjoyed reading. Glad to know that as I sit here writing pretending someone is listening to my thoughts, that someone is. Hope you continue to enjoy.

I want to sit on a beach. Right now. I want to feel the early September breeze off the ocean in my face and watch the stars crawl off the edge of the world and dazzle in the night sky. I want to see the eastern sun rise and have nothing to do all day.

My wife says I like to dream. I think she’s right. I can’t stop myself. I can’t help but think about such things. I hear the right song or feel the wind blow just right or catch a smell and I’m there. I guess that’s  a good thing. Mostly because I’m not sitting on the beach on the Carolina coast right now. I’m not adrift on my dream sailboat listening to the waves wash against the sides or to the marsh grass wisp in the breeze.

I could be million places right now. But I’m not. I ‘m sitting and writing about it. I don’t know why. I have no profound thoughts for you tonight. I have no incredibly sweet or touching news from our lives this week.

Monkey had a so, so week. He started off with several bad days and has slowly improved. He had a pretty awesome afternoon today. We’ve just been getting through. That’s usually what this time of year feels like; with the fall season, like a hot pie out of oven, just out of reach. I can smell it and know that it will be so delicious.

At least football started this weekend. That was nice. Nothing like being able to sit in front of the TV for hours, coming and going from various tasks and always having a game to watch. ESPN even had a game that started at 8:30 AM yesterday morning. Incredible.

Tomorrow being Labor Day, I think that’s what is on the agenda, labor. I believe we are painting our bedroom. Some variety of yellow.

I’m sorry that this is neither riveting or very exciting. I just keep thinking about my beach, a cold drink, some early evening sunlight and a chair.

A man noticed my bracelet the other day. He asked me if I went to church. I responded that, yes, I did attend church. After we traded location and denominations of our respected congregations, I let him know why I wear the bracelet. First it says, hope. It is from the Global Genes foundation that researches and celebrates rare genetic disorders.

I briefly explained I wear it for my son and about Monkey’s condition. He asked if it was something that would get better on its own. I responded that it is not a curable disease. He in his honest, heartfelt, and a uniquely Southern response that we do so well here, said, “Not curable according to men, but we know something different.”

Now. Yes. And no. Before I tell you how I responded you need to know something. God’s plans are perfect. I believe this with my whole being. There are reasons for things good and bad that happen in our lives that are explained by one purpose. The revelation of God’s love in our lives. Sometimes this is easy and sometimes… well it just is not.

Now back to the fellow who asked about my bracelet. I told him that my son does not need to be cured. I told him that he is exactly as he was created to be. He is just as he should be, whether that means he gains anything developmentally or otherwise through the years. I’m not sure what the fellow thought of my comments, we moved on.

So what do we hope for? Well, we hope for what all parents hope for their children. We hope for them to be the best humans they can be. But we also hope for understanding. We hope for better. We hope for a house that can accommodate Monkey as he gets bigger and heavier. We hope for people to see love when they see our son. We hope for people to see people when the see those who are exceptional. We just hope. We hope for what is not seen (Hebrews 11:1). It is all we do really.

During this same week, my wife was teaching her first LIVE streaming lessons of the school year. This works just like it does in a brick and mortar school. Get to know you activities and the teachers share about themselves.  For my wife, this obviously includes Monkey. It is of extra interest as she teaches science. As Morgan went through slides with her class that include pictures of the fam and the dogs and cats, the comments came in from the kids in her class. They pop up in a chat box on the side of the page. Lots of her kids responded in what most consider a typical and age appropriate way. Lots of “I’m so sorry to hear that” and the occasional “Wow, that’s cool”.

Then one middle schooler offered a response that can only be characterized as amazing. “God just loves him a little more”.

Wow.

Did I say middle schooler? I think I did. Now since this is still a public online school this conversation did not get the attention that it deserved. But I think it’s safe to say it stands on its own.

I cannot think of a more adequate description for my son’s life. The love we have learned and share from our lives with Monkey, is cause and purpose enough. Remember what I said about those plans God has. Perfect.

When Monkey has seizures for more than a day or two at regular intervals, we give him an additional medicine to try to help break up his seizure clusters. That’s how they come, in clusters. Whereas some folks with epilepsy have Grad Mal seizures (see the folks at Mayo again, here for definition) Monkey has Complex Partial seizures. Once he gets going on some kind of regular rhythm, he sticks to it pretty close to the minute. Every two hours, three hours, two and half hours… you get the idea.

The additional medicine is supposed to help break up the pattern. It also happens to effect the smooth muscles in his body. It relaxes them. There are smooth muscles all down your esophagus and your intestines. As you might imagine, in addition to the side effects of the seizures, chewing, swallowing, and digestion all become less productive. So when you think about your four year old who doesn’t want to eat dinner, mix that in with a little physiological inability. Dinner time can take a while. If this happens to last for several days (clusters, medicine, etc) Monkey begins to lose energy and weight. Neither are very good.

When he loses energy he loses muscle tone for lack of use. When he looses weight it can potentially effect dosing of his regular medication. We had one such instance of the cluster, medicine rotation earlier last week as Monkey recovered from a cold. We don’t like colds, for Monkey, they’re bad news. Anything that taxes his immune system lowers his seizure threshold and he’ll have some.

No segue here folks. Sorry.

We have a third child.

Caught you with your jaw down didn’t I?

She is 17. She is also my youngest sister-in-law Jordan. She was five when Morgan and I started dating in college. We would take her places and people would assume she was ours. Sometimes we would kindly correct folks and tell them that we would have been 13 at her birth. While not impossible, no. Most of the time, since she looks like Morgan’s copy, we would just smile and move along. Not much has changed. On to the point.

She is a senior!!!!!!!!! We have been doing college applications and talking about careers. We threatened to put up banners at school welcoming her to her first day back to school. We didn’t so instead, this is what she gets!! 🙂 Enjoy your senior year squirt!

And again no segue. I’m not feeling very literary tonight and quite scattered.

We have been watching a lot of “A Charlie Brown Christmas” at our house this summer. Princess has some Charlie Brown PJ’s and we forgot to put them away with the winter clothes. She found them in her drawer a couple months ago and then stumbled onto our DVD copy of the special. It has been in the DVD player since and is watched at least five times a week. Nothing wrong with hearing Linus’ speech five times a week to remind you of the amazing gift of our messiah come to be human. Doesn’t get any better than that.

Monkey smiled this week. A lot. It was fantastic. Open mouth with teeth smile on occasion. Sorry we were too enamored to take any pictures of the really great ones, so this one will have to do.

Lastly, I work during the summer. But as days get shorter again and cool air makes for evening dew on the grass, I still get sad about school going back. I also get excited about fall. There is just something spectacular about the changing of seasons around summer that makes me feel like I’m seven again and the only thing on my mind is how long I get to play outside.

This past week at work has been crazy. I’ve had to move to another office to fill in for someone who has retired. I am always happy to do what needs doing and it is good to be there again (I’ve spent most of time with the college at this location). My co-workers are great. They are always asking me how the kids are doing and taking a genuine interest in my life and family.

I would say that most are at least somewhat familiar with Monkey’s life. Certainly those who I worked with during and immediately after our pregnancy with him. However, I do not go out of my way to tell anyone about how Monkey’s life is different than theirs or their children’s. Don’t ask, I really don’t know why. I go to work to work and if I happen to get into such conversations, I’m more than happy to share if you seem to actually care.

As I was running around like a chicken with my head cut off, I ran into a co-worker I have not seen in some time. She is always especially interested in how my hunting seasons go. She knows that it is one my favorite things to do. Sometimes, I have very little to report (this is not for a lack of effort mind you) and she likes to give me a hard time for such fruitless endeavors. Since she has not seen me since deer season last fall, she asked how things had gone and if I still had some meat in the freezer. This is just the set up and really has nothing to do with where I’m going, promise, I’ll get there. My point is that when we see each other we talk.

So then she asked me a question. It kind of took me back and I half took it as a joke. I thought she was kidding because I had made an assumption, and as one of my favorite english teachers and mentors always said, “you know what that makes out of you and me”.  The question was, “Will you let your son hunt?” The assumption, that she knows that Monkey isn’t able to do such.

Since I did not have much time, I responded as kindly and quickly as possible. “He can’t pull the trigger, but I’ll take him for as long as he can sit still when he’s older (with a genuine amount of hope)”. Really just thinking that it would be nice to peacefully sit in the woods with my son enjoying creation. She responded that of course not now but when he was older. Then that assumption hit me in the face. She doesn’t know. I gave a quick explanation that Monkey has a brain malformation and can’t walk or talk, so this really isn’t issue to consider, but if Princess ever wanted to put on some camo and climb a tree, I was good.

Two things have come to mind since. First, I assumed. I think we’ve covered that, but that’s what I did. I think it’s because I walk around constantly thinking about Monkey and it’s our lives. The biggest part of our lives. How could someone not know? Well, that’s pretty simple. If you don’t tell people, they don’t know. What a simple thought, while being a pretty big deal for some of us.

Second thought. I’m glad I don’t talk about Monkey in such a way that his obstacles in life are what people hear. I have talked to this co-worker about my son regularly for the last four years. I can’t believe I have not specifically talked to her about Monkey’s specific awesomeness. At the same time I’m glad that it does not have to dominate the way I talk to people about our family.

What does this particular person who I talk to regularly know? She knows I love my son.

It was a simple question. However, it is one that no one has ever asked us. “Were you ever angry?” This was the question our dental hygienist, Mandy, asked my wife last week when she took Monkey and herself for a cleaning. She is a friend of our family, she works with my sister-in-law Lindsay.

Morgan came home and told me about it. I asked her how she responded. She told her that more than anything, it was perfect timing. Two weeks after Princess was born Monkey had his first EEG and MRI. We didn’t have time to sit around and dwell on what might be.  Angry, it is just not anything we have really ever had time for. From the time we knew we were ready to start a family and through her first pregnancy, I guess we always knew that we could have a child with special needs. We skipped the option for genetic testing for both of our children and will for any future children we have.

Sure, we could have found out about Monkey’s genetic mutation earlier. You may wonder why we seem so indifferent to this seemingly huge decision, especially looking back. The reason is because we would not have wanted to have done anything differently. I mean this from an emotional standpoint but also medically and practically.

If we had known going in, we probably would have been slightly less prepared to receive our son for who he is. We would have been far more concerned with medical complications and naming his disorder. We might have even forgotten to name him or remember what to call him. We might have possibly talked more about his potential obstacles in life more than we would have talked about how overjoyed we were to become parents.

There might not be a Princess.

Let that sink in a minute. I know I have to. If you have been reading my blog from the get go. I don’t have to explain to you the hole that could have potentially been left in our family.

Medically speaking if we had all known, and by all I mean us and the medical staff, how might things have gone differently when Monkey was born? We already had the an entire NICU staff on standby in the delivery room. He did not have to spend any time in the NICU and I attribute that largely to our pediatrician who thinks with common sense instead of his credentials.

Monkey had a feeding tube for all of a day and a half. I can certainly see how knowing might of incidentally effected the amount of time that feeding tube would have stayed in. If it had stayed in longer Monkey might not have learned to feed on his own when he did. Therefore, he might not have developed crucial habits and early skills related to eating and swallowing. If this had happened there is a large possibility that Monkey may have faced a similar fate to most kids who are born with some degree of lissencephally. That would have most likely looked like aspiration pneumonia. Due to the lack of strength and low functioning of his esophageal processes, liquid and other foreign substances (foods) would have made it into his lungs. In most children with lissencephally, because of other missing or low functions, it leads to death.

It was a fair question. It was good question. It came from a person who cares a lot about our family and has followed along through our lives with Monkey. It is just not something we have ever taken the time to do. It is not for a lack of our ability to be angry. If you know me or my wife really well at all you’ll know that we both posses just a little bit of anger attached to a sometimes short fuse.

So, were we ever angry? Or are we ever angry now? I don’t think so. At least not about how he is or how things turned out. We are angry about plenty of other things though.

There was some time right after we found out Monkey’s diagnoses that I think I did what most would have done. I was sad. I mourned, what at the time I saw as loss. The loss of doing some of the things I love with my son. Snow skiing, soccer, mountain biking, hiking and backpacking, camping… I couldn’t shake it for about three days. Then, it was over. Loss turned to instinct to care for and fight for my son for the rest of my life.

Most of the time we just find ourselves feeling grateful that he is awesome.

While I was reading another blog the other day (What Do You Do Dear?), I reached a conclusion. I was also reminded that I promised an honest account of our life. There are times you need to know how beautiful our lives are with our two amazing children. Then…

There are times you need to know that we are FREAKING OUT. The Ides of August (well the beginning of the month anyways) are upon us. This time of year in our house should be renamed from August to the month of Chaos. As you know my wife is a teacher and I work for a college. August is a stressful month. Teacher work days, tuition deadlines, late nights at the office, demanding students and parents, and the list goes on.

Well, these things are all pretty normal for us this time of year. We adapt to chaos well. We even pride ourselves in our ability to adapt and carry on. However, this August is different. This August we are freaking out. Monkey turns the FIVE in March. Holy freakin’ *expletive! FIVE! FIVE! FIVE! FIVE! I can’t stop typing it because I can not believe it!

In addition to the unbelievable fact that we must really be getting older and our awesome son is too, in one year we will be forced to cross a bridge that, very honestly, we are not even ready to think about seeing in the distance. Monkey will be required by South Carolina state law to start school. School, right. We  have to do that. Kids go to Kindergarten at five. I did or preschool or something.

We live in rural county with poor school choices all around. The public school system is not a choice for our special needs child and the local private school is not what I would consider equipped to even host Monkey for a play date (I’m sorry in advance to the natives, I don’t want to hear about this when I see you. you know I’m right and if you don’t… Bless your hearts, I am right).

So, what was the grand plan when we decided to move back here anyhow? The dream is homeschool. Now I have to apologize to all the friends and family that live in great school districts. They aren’t good enough either. A gagillion page IEP is not my idea of a good time. My child will not be put in a chair all day and pushed around like some sort of invalid, nor do I think I should have to spell it out motion for motion. You either understand how to read my son and are genuinely interested in helping him or you’re not. That’s all. I have nothing against you in your plight in the human race. You just are not equipped to help my son learn to be the best human he can be. You’ll be too busy reading the instruction manual to positively participate. Just because your school system can teach the masses and even Special Education to some extent, does not mean you can handle my son. I know that there are great Special Educators in this world, we went to college with one and I would hire him personally to homeschool my son if I could afford to do it.

We are particular about how we care for our son and don’t fully trust a whole lot of people to do it at all. This is our problem, I know. We accept full responsibility for our dilemma. But nonetheless, here we are. Did I mention we are freaking out? We both work. Albeit that my wife works from home, this still does not leave a lot of time during the day to devote strictly to the education of our son. We need her income, we need my income. We have not won the lottery yet and are not independently wealthy. So, we do like the rest of you. We work.

Not to mention the fact that he has seizures. All the time and has historically after heavy seizure periods, developmentally regressed. There are some who argue why we even need to worry over his education at all. To you, I have no words, you probably don’t read this anyhow. He goes to occupational and speech therapy every week. Yes, the school system would do this for free. No, they don’t have the right people in place to handle the job. Those awesome folks are few and far between unfortunately.

I could keep going. I could type until next year, maybe it could keep me distracted so I don’t have to deal with it, but I’ll stop.

So here you go. This is us, freaking out.