The kids had their birthdays the last week in March and first week in April. Monkey is now five. Princess is three. Sandwiched in between their birthdays is our anniversary. We have been married for eight years and together for thirteen. Those who have known us as long as we’ve known each other, know that that there is some dispute over the exact day of our meeting. However, I find it in my best interest to defer to my wife on that. It was January 11th, 2003 (or was it the 10th?) that we met for the first time. At least I think.

We are getting older. I am very aware that we are not old. At least in one sense. I do however feel old some days. I go the gym or run and my body just does not recover quite as quickly as it used to.

It has made me pause and think back on the last several years. A lot has happened. We married, moved, changed jobs a few times, had our beautiful children and grown older. In a sentence it looks pretty standard. The memory serves to be pretty complex but in a simple kind of way. We struggle, as all married people do, to remember why it is we got in to this mess to begin with. In the midst of our newly minted three year old reminding us that she will one day be bigger, older, and more beautiful than she is now as well as Monkey making steady progress towards a life of controlled seizures, we catch a glimpse of what we thought life could be. Shortly after, we see what reality looks like and look forward with hope for what is to come.

Funny thing about plans and life. They don’t always go as you intended. There are not enough self help books in the world, not enough blogs, or storytellers to possibly capture life. While we may entertain ourselves with these, they are only a fuzzy reflection of what is going on around us.

I write from my point of view. The psychologist, sociologist, pastors, counselors, etc write from their well educated, yet still personal perspective of life. We read, we listen intently, and even pay good money for the opinions and perspectives of others. We can’t get enough. It’s an odd thing isn’t it?

A friend of ours from college works for Storycorps. Last I knew, I admittedly haven’t even traded more than a Facebook like with him in some time, traveled for the company and listened while recording the stories of people from across the country.  The idea being to capture the story of humanity.

We have a never-ending curiosity about us. The need to feel camaraderie with our fellow humans, connection (most of it electronic these days) and shared experience is immense. TED Talks always has a new speaker. Always a new story to tell. Those well trained and educated folks I mentioned earlier explain the explosion of social media on this desire.

Now you may say, I don’t really care for the company of others. I really don’t either. I have my wife, kids and a couple of close friends. But, and a BIG but, I’m still sitting here writing to share my thoughts and our life with you. Some of you I know, some I don’t and some I haven’t seen in a long, long time.

Why? Simple really, we’re just feeling what our creator felt when He made us. Living out a simple innate truth, that we were and are made for a shared experience of a living God, the living God. Hebrews explains it terms of the ‘great cloud of witnesses’ that have been and will be those that testify to the glory of our Jesus who decided to get up out of a grave, speak through the miracles of creation, and through the words of the storytellers before us.

This is getting long, so let me make what I stumbled into as my point. This storytelling and shared experience of God with each other is what we must build our families on. Societally speaking, we have a choice of how to use this powerful tool and the legacy of life we leave behind. Will it be one of vapid selfies from every experience we ever try to have? Or, will it be one worthy of a story? Tell a good one, let it reflect the joy of sharing that formed us in the image of loving God. Leave it in your children so that they know how to live.

Do you every want to know if God is listening to you? To your desperate pleas for peace and cries for help. Do you ever wonder if the your deepest desires and hurts are truly understood? The answer is yes. He hears, understands and responds. There’s a catch though. Sometimes He answers with just what we’re looking for and sometimes He answers with just what we need.

Sometimes what we’re looking for it just up the road a piece, but what we need is here, now, hidden in the everydayness of our lives. It is in the middle of our prayers and tucked away in unexpected moments.

Morgan was with the kids in children’s church on Sunday morning. Princess was playing with the other kids and Monkey was standing with some help from his momma. A friend of ours was their teacher for the day, a witness, if you will. Not once, or twice but for a miracle of three times, Monkey laughed, giggled and smiled at his momma!

That’s all the proof we need. He is listening and He knows the exactly what our hearts need. That is mercy at its finest, an experience of Christ’s love in one of the most meaningful ways He could give us.

I know this has been the topic of much joy and a previous post. Oh well, you’re going to get one just like this pretty much anytime that boy laughs or smiles. It will always be what drives us, keeps us and reminds us that we are not in this alone.

Do not panic. Everyone is ok. I have just not had time to write.

Are you still there? Everyone doing alright? I hope so. Good talk.

We don’t like to look back. We don’t get rid of the videos and pictures on our phones. We can’t and we may never. Every now and again Princess gets hold of one our phones and starts scrolling through them though. She stops and watches the videos. She makes us look. We do, we might even smile. She likes to see pictures of her when she was small and Monkey when he could move and do.

We can’t stay there though. It hurts.

We know we will find that boy again one day and if you’ve been reading for a while, you know that it pretty much consumes our thoughts.

We can’t get too excited about what is to come either. We know better days are ahead. But we can’t forget the now because that is pretty much all we’ve got. That is a struggle. It’s hard not to get carried away by what good things are ahead. We do it all the time. It’s hard to find the now in the middle of a crazy, bad, sometimes awful day.

I don’t have words to tell you how because I’m still trying to figure it out. It’s been one of those days, as it goes by, you can’t wait for it to be over. I have to look back on my day and cherish the time I had with my son, my daughter, my wife.

You might see this as a gloomy way to live. But as a parent of child I may very well outlive, I have an acute awareness of the time I have and the unknown of the future. One day God will take back what he is letting us borrow. Monkey will run, jump, talk, and sing. But right now, he’s our’s and we cannot wish a moment to go by unnoticed.

What does a new year mean to you?

For us, it usually comes in as quietly as any other night. In our bed, watching some TV and falling asleep as early as our minds will allow. The kids go to bed at the usual time. Princess isn’t quite old enough to really know anything is going on. Our church was unable to have its usual fireworks display this year, so there wasn’t much to do.

When I was younger it seemed like more of an ordeal than it is now. Especially as I got old enough to enjoy it with my friends but not as old as I am now that even if I could go to a party, I’m not sure I would.

It does bring a sense of reflection. I’ll keep it short, but needless to say our year end letter to friends and family probably wouldn’t read like most. I could have never told you a year ago that we would be actively engaged in the medical marijuana movement. Especially my wife. I laugh every time I think about her advocating for this. For those you who know her, this is just a touch ironic.

Monkey has had a long year. We’ve gradually improved the care he has received through the year which ended with a switch to an amazing neurologist with an incredible staff that genuinely cares for more than just the drugs our son takes, but for all of him. It also ended with access to the CBD oil that we thought would never come. It is slow going on how best to use and balance. We’re newbies in a world that we have just fully started to see and we have a lot to learn. Princess has grown faster than I could ever have imagined. And well, we’ve just been hanging in there.

I’ve never been one for a list of resolutions though. For the last few years Morgan has chosen a word to focus on for the coming year. You may have done this or heard of others who have. Instead of setting unattainable and faltering goals that require you to change beyond your capacity and natural inclinations in life, you choose just one word. One that will guide your thoughts, desires, emotions, decisions, goals, and every other aspect of life.

I’ve never really put much thought to this either. I probably can’t even tell you what her words have been in the past. However, as I was driving to work one morning this week, I heard the Christian radio hosts I listen to talking about this idea. Again, I didn’t pay it much attention. But it seemed to plant somewhere in my mind. My word for this year is driven. I didn’t so much decide this or put time into the idea. It just kinda happened.

Have you ever reached a point in your life where something feels like it has to give? I don’t mean to say that things are bad, just that they could be better and in some ways very much need to be. Well, I find that we are in just such a place.

So as the days have passed I have put some reasonable thought to what it is I should be driven towards and for. Well, I started in some of the most natural places. I need to be professionally driven to continue doing my job to the best of my ability. To work hard and study hard so that the rewards are equal. Be driven to be the best father I can to my children. Fight every battle that presents itself to Monkey with all of my self while loving Princess with equal ambition. Driven to be a better husband. To love, understand, help, support, encourage my wife with more patience and less single-mindedness.

Last but not least be driven towards Christ. If I can be driven to love with the same grace, peace, and mercy that I am loved, then rest will take care of itself.

I cannot truly express my desire to be driven for these things. It has become a stirring feeling that seems like it can lead to a more intentionally lived life.

A belated Merry Christmas to you all! I hope that you had a great week of celebrating with friends and family and like us, I am sure you are glad it is now over. As I have gotten older I have found it difficult to remember why we have Christmas to begin with in the midst of the getting to everywhere we are supposed to be. The birth of our messiah in a barn seems to take a back seat to a schedule that we have gotten down to a manageable level of activity. At least it is all over within a few days.  Don’t get me wrong, I enjoy seeing family and spending time with those we love. But it is tiring.

Since Monkey’s diagnosis and the onset of his seizures, we have not had Christmas with him. This year was different. It started out not looking so good. The Sunday before Christmas we had to take Monkey to the doctor with a respiratory infection and low-grade fever. One nice ear infection and four shots of antibiotics later, he was feeling much better. He managed to recover by Tuesday and had a great Christmas! He had no seizures, was able to pay attention, play on his new platform swing and with his sister. It was amazing! It was all we needed to be reminded of the simple joy of Christmas.

Morgan  and I have the awesome gift of having jobs that give us two coinciding weeks off during Christmas. Back to playing with the kids! More to come soon before it’s back to work and school.

It has been a kinda crazy last few days. Tuition for Spring term was due last week which always leads to a very busy week at work. On Friday a co-worker of mine passed away very suddenly. She had been out for a surgery for the last few months and had just come back to work in the last week. She passed out while at work on Friday, was transported to the hospital and died shortly after. She was a wonderful God-fearing woman and will be missed beyond all measure by many more than just those of us she worked with.

Then on Friday afternoon I took off to Boone, NC with the youth from our church for our annual trip to help process shoe boxes for shipment at the Samaritan’s Purse, Operation Christmas Child warehouse. If you don’t know about this incredible ministry (I’m not sure how you missed it) check it out.

It is a trip that brings great amount of joy to all of us who go. The short version is they send out shoe boxes packed by folks from around the country with goodies, the Gospel, and the tools for local missionaries to share the love Christ with children around the world.

In terms of the history of this event in our church, I’m a newbie. I’ve only been for the last three years. The first year was just overwhelming to see the process, the amount of energy and volunteers that go into this simple yet powerful ministry.

The idea is so simple and may not seem to carry much value to some. However, I find it to one of the most beautiful ways we can share God’s word with the world. Why? We get to pack love and joy into a box that goes on without us. That means we can’t get in the way of Christ when that box shows up in the hands of child who has not yet experienced limitless mercy and grace.  Our personal baggage and sinfulness isn’t there to dilute the goodness.

I also get to go with some of the most amazing young people I know along with one of my best friends who is the youth leader. These teenagers remind me every year that we have reason to look with hope toward the future. They reflect Christ back to a world that desperately needs to see them lead in a way that merits following.

While I love to go on this trip, it also means I have to leave the family at home. Monkey wasted no time protesting my absence and started having seizures on Friday night and continued on through the weekend. Hopefully, he’ll be over this round soon. I know this sounds crazy, but we’re not sure he can’t have them on demand. He was certainly not looking at me very nicely as I left.

We have a doctors appointment on Tuesday with a new neurologist that we hope to be promising and more useful moving forward.

It also appears that Christmas is next week… whew. I don’t think I’m there yet.

We always get our Christmas tree put up the day after Thanksgiving. We take the kids out to a place nearby to pick out a tree. Yes, a real tree. Unless you’re allergic, I have no idea why you would do anything else.

The first one Princess picked out was 12 ft tall. We let her know that was a bit too tall and kept moving. After that, every tree was too tall… ‘Do you like this one?’ She would respond, ‘No, too tall’. We did eventually get one with her stamp of approval. We got it in the house and started decorating. This is the first year that Princess has been old enough to really ‘help’. She had a great time and four hot glued back together ornaments later, we were done. She has also collected several other decorations and placed them around the house where she sees fit.

As we decorated the tree I hung up an ornament from Monkey’s second Christmas. This was before Princess was born and before he started having seizures. It is one of those with his hand print on one side and a picture of him on the other. He is sitting in a Radio Flyer push cart that friends of ours gave us and has the biggest, cheesiest, amazing, giggling grin on his face.

I had to stop. I showed it to Morgan and we both remembered a time when our son had words, moved and had the energy of a typical two year old. We can’t stay there too long. We would never be able to look ahead. But we are always so grateful to look back and see the prize.

I don’t know what it will take or how long, but we will find that boy again. We are getting glimpses of him every now and again. While eating his breakfast last week he held his momma’s hand for the entire meal. This is a big deal. He usually protests his momma feeding him and it takes a while. He does much better when I feed him. He’ll grab my arm and pull it to him. Just to make sure I don’t forget to keep the food coming.

These are the moments we live for.

After we completed the decorating of our tree, Princess found two sets of reindeer antlers and put one on and ran around the house. Then she took the other pair to her brother who had been laying on the floor watching the lights on the tree. She sat him up the best she could and put them on his head. Then laid down next to him.

These are the moments that keep us alive and keep us moving forward.

Wow!! Sorry for being so slow to post this week! I think I have exceeded my usual self imposed time limit. It’s been busy and I think I’ve had some writers block or something…

It has been a good week. Kids got their flu shots last week and that was fairly uneventful. Took them for some Chick-fil-a dinner afterwards. We get home and Princess is playing with her kid’s meal toy at the dining room table. It is a bracelet thingy with ABC cards that she can practice writing her letters on. She appeared to have it stuck on her arm. So I pull it off set it on the table and go about what I was doing.

She stops. I mean if she had glasses, she would have been looking over the top of them at the end of her nose. “Daddy, you are so rude!”

She then proceeds to put her toy back on her wrist. Where did my almost three year old go? And where did this going on 13 year old come from? This is going to get better right?

I’m guessing no, best buckle up.

Monkey had a cold/recovering from flu shot early this week but slept it off with no seizures today. So that is good news. Morgan and I went to Greenville, SC for  the medical marijuana hearing for which my wife is on the committee reporting back to the state senate.

A bill was passed last session to legalize the possession and use of cannabis oil for intractable epilepsy. The oil is a derivative from the marijuana plant. It has little to no side effects and is indefinitely adjustable for each patient. However, they didn’t give us any way to get the stuff legally. That’s what this is about.

Very interesting day, as was the last meeting in Charleston. Lots of people came to testify and tell their stories for their children and then of course you have those people who have less than medicinal purposes showing up to make their case for something else. Like I said, interesting. But things seem to be headed in a good direction.

Consider this my public service announcement for the week. Don’t forget about the awesome child of your friend, family member, etc when you talk to them. We love to talk about our kids. Especially when it’s not about how many seizures they’ve had today or their current medical regiment. We as parents of special needs children have to fight our own laziness everyday to include our children in the everyday activities of our family. Not to be harsh, but when you find yourself in the company of special needs parents, try to remember this. Especially those of us who have fully functioning children too.

I’m probably not making much sense, but my point is don’t leave our kids out. You don’t mean to, I know. But even the small things can get us going. You’re excited about an experience you’ve had you think, man I bet (insert functioning child’s name) would love to do that one day. Guess what, (insert special needs child’s name) probably would too. We as their parents will work on accommodating the how, but we love it when you think about our kids participating in life instead of watching the rest of us enjoy it without them.

Who doesn’t like a good wedding? I know I do. Good food, candles, unity sand ;), friends, family, drinks and cake. We went to a wedding for good friends of ours tonight. It was cold. It snowed in SC on November 1st. A day to remember no doubt. But I’ll go a bit further. I will remember this wedding. At least I hope to.

Why? Well it was for good people in an awesome place on a crazy day in weather here in the south. The other reason is that I really enjoyed the message and delivery from the officiating minister. It was not anything particularly unusual. A little 1 Corinthians 13, some rings, vows, a kiss and there you have it.

The difference? I think it’s because I’m older than I was when I heard something similar at our own wedding. I think it’s because the minister was so frank. Marriage is wonderful, it is amazing, it is the best thing I’ve ever done with the most amazing woman. Guess what though? It’s hard. You work at it. You struggle through it and it only gets better. But only if you can manage to remember why you got into this business to begin with. You love each other, you support each other and encourage one another to be your best selfs. You will change. The minister kept on saying, ‘your life will never be the same again’. How very true.

Oh, and don’t forget the important part of the day. The ‘before God and these witnesses…’ We the spectators are certainly the less important part of the equation. You just made covenant with God. Moses broke one of those with the big fella once and watched his people cross the Jordan without him.

So in honor of some awesome people who are awesome friends and good people. Good luck and work hard. After you enjoy the honeymoon of course ;).

Second thought for the night. We are not special parents because we have an special needs child. You may have seen other parents write or say something similar, but it’s true.

We saw an old friend of my wife at this wedding. We were doing what parents who have left their children with the grandparents do. We talked about our kids. We were talking about colds, sick kids, and how it seems like the little things are the most dangerous. They do what we do, in the exact same way. They are good parents to their awesome kids.

I’ll get to the point. Scary things happen. They happen to all of us and our kids whether or not those kids have special needs. Do you know what good parents do in a pinch? They do what they have to for their children. That is all we do, what we have to for our children, it’s nothing special. It is certainly in God’s plans that we have Monkey. But we are not any better or different than any other parents that would do anything for their children. We do what we do because we have to, not because we are any more amazing or different than other people who love their children with the fullness God intended.

It’s been a good week. I think. The kids have had colds. I had a final for my first class for my masters. I think I did ok. I am experiencing a feeling I have not really had in my life to date. I knew all of the information on the test but had a spaz attack and missed some. Hopefully I did enough to keep my A. I didn’t miss them because I wasn’t prepared  or didn’t care. I just missed them because. It is a terrible feeling and a good thing I haven’t been like this my whole life. I don’t think I could have handled it. The pursuit of academic perfection is tiring.

Anyhow. The kids had their snotty noses. They seem to be mostly over it. The best part is that Monkey didn’t really have that many seizures with this round of crud. So that is awesome!

Radom thought for the day.

Consider this. Expectations. What is it that we expect for our kids? What is the goal? Just not to bother us hard working and exhausted parents too much? I hope that’s not it. But somedays, it’s the best we’ve got.

I’m watching TV while writing this and a commercial just rolled by 19 Kids and Counting. Now, no matter what you think about these folks decision to continue having lots and lots of children, you must admit there is something admirable going on here.

What do I think it is? They are rearing and raising people. Not just watching their kids grow up while passively being extraordinarily busy.  They have an expectation for genuine relationships and are not just looking for their kids to be out the way.

As a parent I see no greater goal. I hope to one day turn my children loose (well Princess, I’m pretty sure that if Monkey ever leaves us, it will just be to live with her). Watch them grow into something truly their own.

I worked at a summer camp while in college. My third summer I was given the responsibility of being a unit coordinator. This meant that instead of being with campers all day I was responsible for a group of counselors. One day while a group of campers with their counselors were doing a work project that I was overseeing, my boss comes by. He looks at me watching. He looks at my counselors half heartedly helping their camper who are less than excited about pulling weeds. Then abruptly pulls me aside and asks why I’m not getting my hands dirty.

Crucial life lesson. You can’t lead unless you’re willing to get in there and do what you’re are asking others to do. You don’t tell people what to do and then stand around watch. Excitement is not transferred with words alone. Love is not understood by providing stuff and keeping busy.

I’m about to upset someone. I just know it. Hold on to something.

Quit making excuses for why you have so much to do. Slow down. Play. With. Your. Kids. Laugh with them, share with them, and show them how to do some real loving.

Check this out. When someone asks you to do something, you like it when they speak calmly and say please? When your kids ask you to do something, wouldn’t you like the same? Of course you would. Guess what? You might give a try to slowing down and asking them to obey your requests politely.

Forgive my soapbox, but after all, this my blog and is essentially my soap box. You have chosen to sit in front of it 🙂 Thank you by they way!

I am just tired of looking around and seeing parents complain about things that they have the immense power and responsibility to change. Yes, that is right. I think we as parents have power and HUGE responsibility. The bizarre part of this is, some folks think it is everyone else’s job to rear, raise and encourage the goodness out of their children. Everyone but themselves.

Now for those you who are reading this and don’t have kids or don’t think you ever will… This is not just about parenting. This about living. The same rules apply to your friendships and other relationships. It just happens that the most important relationships in my life are with my children and wife.

So go get your hands dirty.

Dismount soapbox. I encourage you to find one for yourself and see if we can start raising people. Thanks for reading.