On February 8th, 2010 our lives changed forever.

Morgan woke up in the middle of the night and her water had broken early. Really early. She was only 27 weeks pregnant with Monkey. We were young and he was our first child, we didn’t know what to do.

We ended up at the hospital for the next seven weeks. Monkey was delivered at 34 weeks and as healthy as he could possibly be. By nothing short of divine intervention and countless prayers, he spent no time in the NICU. We went home three days later.

On February 8th, 2017 we were in a very different place. We were at Disney World with our growing family of five and all my wife’s sisters, their parents, the spouses and our niece.

This was not planned on purpose but as we pulled up at the resort we staying at for the next four days, Morgan looked at me and said something close to, “This is a lot different place than where we were seven years ago with Monkey”.

There have been times during last five years (we didn’t know about Monkey’s genetic mutation or seizures until he was two) that we would have not even thought a trip like this would have been possible. There were stretches where he would have 15 – 20 seizures a day.

Our amazing son turns seven this week. Seven, like three from ten and seven from an eternity ago it seems. I feel like we have lived three lifetimes somedays since that day we checked into the hospital and at least two of them were the first 48 hours we were there.

Now, full disclosure here, I have failed. Not just a little but HUGE. I didn’t so much forget about his birthday as I almost let it go by.

I have to travel this week for work and the last three weeks have been three of the longest I have had while working where I do. I don’t have to go too far away for the trip and about didn’t even put up a fight to be home to celebrate. I will be but I can’t believe I even let it come to this.

Every day that my son is with us is a gift. A moment to cherish and hold close. We do not have a guaranteed number of days and certainly not birthdays to spend with him. They are each as important as the one behind and the one to come. For me to even arrive at a point where I could have missed one is heartbreaking regardless of any surrounding circumstances.

We live a far different life than a lot of people. We don’t live it without the company of special-needs parents who live the same way, but we are certainly not the majority. We must constantly fight for our children and be their voice in a world that will marginalize them and forget. They will grow older and the attention and acceptance of the life we live will wane. We will be old people and if God allows, still have our son living with us and being cared for by us.

We cannot afford to let any day and certainly no birthday just pass by without the right amount gratitude and awe. We won’t be perfect, but we can’t allow ourselves to become complacent or too comfortable. I am so thankful that I have an amazing (and forgiving) wife who is the mother to our amazing child who will never let me settle for either.

When all I thought was sacred was shattered in the fallout

And my feet of clay the weight can no longer carry

When love is not a feeling

And HOPE feels like a cop-out

The ground beneath my feet a sudden shift and I’m buried

And all my heart

And all my soul

All my faith to pieces fall as we go

And I’ll sing of your glory now

I’ll sing of your glory now

I’ll sing of your glory now and forever

-Bebo Norman, “Sing of Your Glory”

I love this song. But probably not for the reason you might suspect. I love this song because it speaks of the other side of hope.

The side that we don’t like to talk about out loud. The side that hides in the back our mind with all of our other deep dark fears and secrets. It speaks truth to the unspoken words that we carry every day. What if our hope is for nothing? What if our pain and suffering lead to nowhere? What then of our faith? What then of the hope that we cling to at the end of another long week?

As we near the end of the year and rush through another Christmas, I can’t help but to think good riddance to 2016. Our faith has been tested our hope has waned and on the whole our year has been pretty good.

So what is the problem? Sometimes you just wear thin. Sometimes all the hoping is tiring and the waiting can blind you from the daily goodness in your life. To follow brokenness with thankfulness and praise can be a tall order.

Does your hope ever feel like a cop-our? Does your heart ever not feel love? Of course it does. As we remind ourselves that this Christmas season is not about stuff, but about the birth of a savior that would die on a cross, remember that same savior prayed to his father to take his cup.

Hope onward and onward until your joy is complete. However, that is challenging when our hope is not complete until we have given it to the glory of a baby in a manger.

It’s official. We are those people. My grandmother invited us and my cousins to her house for a Christmas dinner tonight. Our week was busy before it began with church activities and plans with our kids to do various holiday goodness. I meant to call her on Monday to tell her we wouldn’t make it.

We remembered to send a gift. I (me) did not remember to call and tell her we wouldn’t make it. I didn’t even remember the dinner was happening until I got a couple of texts from family making sure we were alright since they we were there, and we were not.

Our lives are different than most. Our priorities are not guided by our dreams or desires on a daily or weekly basis. They are dictated by necessity and survival. The choices we make often alienate us from others or to the inattentive eye seem like we just don’t care. These could not be less true. We do care and would love to live just like everyone else. But we can’t.

If you’re now thinking that this sounds like I am just trying to justify my forgetfulness, your are only partially correct. The other part, the bigger part is to try to help you understand or if you’re rowing the same boat we are make sure you know you are not alone.

We will make decisions that may be perplexing. We will want to be at dinners and visit with friends. But after one such lovely afternoon with good friends, you should probably know just what I told them, “We’ll do this again soon, and by that  I mean we’ll want to but we’ll see you in six months to a year”.

Our schedule is not our own. We live by lunar cycles and seizure cycles. We do what we are are able to do until we have no energy left to do at all. And we do it all for our children.

On a lighter note, Merry Christmas! Sorry for the seriousness and no adorable pictures of the kids. I’ll get some lovely Christmas ones up soon with some stories from what I’m sure will be an eventful Christmas 🙂

“Daddy, when Bubba(Monkey) grows up, will he have a beard?”

This was the topic of conversation between me and my four-year-old daughter tonight at bedtime.

Quite forward thinking for a little girl.

I blame this on Disney. Anybody else got a daughter, niece, small child girl in their lives that is all about some “Dream big princess”? I admire Disney’s efforts to help little girls and young women see their future and hope for great and amazing things.

–Aside. For those of you who are clearly out of the loop, Disney’s present indoctrination campaign focused on girls shows a plethora of little girls dressed up or dreaming about being astronauts, doctors, lawyers, presidents, cops, etc, etc. To the backdrop of some lovely music and many of Disney’s princesses doing amazing things (think Pocahontas cliff diving or Rapunzel chasing her dreams).–

Moving on to the reality that sets in after such a conversation.

My four-year-old daughter has now thought about the facial hair growth of her special needs brother. Outside of whether or not daddy has trimmed his beard lately or that it might scruff her when I kiss her goodnight, this is not a thought I would have imagined to cross her young mind.

She will forever think of her brother in ways that I do not think she is able. She already is hyper vigilant to his needs in ways that should not have to be at such a young age.

It is not because we have asked her to think this way, she just does. She loves her brother more than I think even she knows.

Last week I had to go to a conference for work. My wife and kids stayed at my in-law’s house just down the road. The first night they were there, Princess comes out of their room after she has been put to bed. This would typically be frowned upon.

However, on this night she came out with a simple and reasonable request. She needed a brighter nightlight, she could not not see her Bubba.

These are not the exception or break in otherwise patterned behavior. This is her normal.

We fell into this life. She was born into it this way. She knows nothing else.

Welcome back.

As of August 5th this year I am done with my master’s degree. So instead of staying up late writing a bunch of research papers and reading I can get back to doing what I like. It has taken me more than a month to feel like picking up my computer to write since finishing up. It feels good to just write again.

We have had what feels like a very busy year and probably one of the few years in my life that I am just ready to be over.

Though, I cannot not dismiss the goodness that has come our way and I hate to ever wish away time, but 2016 can move along and take its problems with it.

Enough of the negativity. Monkey has had a great year. We seem to have found his therapeutic dosage for his CBD oil. We usually get 15-20 days seizure free and seizure cycles are only last 3-5 days. Quick recovery time and good eating for the most part. He has gained some weight and has clear, bright eyes. Progress is slow and steady. Prayers have truly been answered and we are enjoying watching him come to life.

Now, #3. Oh, that boy. If he were first, he would have been the last. I know you’ve heard that before, but this kid doesn’t really like to sleep. He is a joy when he is awake but it has only been in the last week that we have had more than 3 consecutive hours of sleep in months.

Princess is busy holding down the fort. She makes sure we are doing what we are supposed to, when we are supposed to, and just the way she would like. We are in trouble. She is 4 going on 40.

I was running around the house doing chores and trying to get one last thing done. She stops me in my tracks, looks at me squarely and says, “Be thoughtful of Bubba”. He was down on his mat watching me run around. I had told him on each pass that I would be right there. In an instant my half-grown, wise beyond her years, 4-yr-old leveled me to the ground.

It is moments like this in my life that I am reminded to stop and enjoy what I have. We are sometimes far too eager to dwell on all that is not right around us, all that is not as planned. It is easy to be drowned by all that is not as we think it should be. To be reminded of the glory of daily miracles, and continue to look to future with hope is awful daunting task sometimes.

It feels like we are just surviving most days. Every now and again, however, we feel the vibrant pulse of life. We go to go the beach or the mountains, and get away from the stress of our daily grind. These are escapes allow us to recharge a little and let our children see the fun people we used to be a lot more of the time. It is a struggle to stop and see the goodness of each day. But we must. We cannot not overlook the awesome we have right now, right here. We must acknowledge the gifts God has given us in the days we have, while we hope for a future that is not here yet. We have to rest in the glory of God’s goodness for today.

It has been a while hasn’t it? It was a busy fall around our house with #3 (that’s official folks, that’s what I’ll call the little fella here) coming the end of October, holidays, etc, etc, etc.

One quick note about Thanksgiving. We stayed home as #3 was only a few weeks old and it was AMAZING! We usually chase tail around the upper part of SC on Thanksgiving and while we love seeing our families, it was great to sit at home in my sweat pants and not just see ALL of Macy’s Thanksgiving Parade, but see it twice! You’re jealous, I know. Give it a go sometime, we’ll have to again one day.

We had a seizure free Christmas for the first time three years. That was enough Christmas for us without a doubt.

Six years ago last Tuesday, February 9th our lives abruptly changed course. Morgan woke up in the middle of night, slipped out of bed and headed for the bathroom.

I sleep hard, really hard. I had no idea for at least 10min she wasn’t next to me. I got up when I saw the bathroom light on to check on her.

As I come in she says, “I think my water broke”. In our first-time-parent un-knowing we debated the merits of the puddle she has just left in the bed and after more discussion than was necessary decided to call the doc.

Monkey was on his way.. sort of. For the next seven week we lived in the hospital. It was probably the last time we spent that kind of dedicated time together for such a long period of time. It feels like yesterday and my back certainly still remembers the awful pullout chair that was my bed and Morgan’s the hospital bed.

That first night lasted forever. I tried to stay calm but a co-worker of Morgan’s had ruptured early (gone into early labor for you fellas or non-birthing types) not the month before and ended up loosing her child. I remember going to see her and her husband during the few days they had with their baby girl.

It was all I could think about. I think I might have let my mind go a few times to what could be the worst.

The worst never came and 54 miraculous days went by without Monkey or Morgan developing an infection. The docs decided not to gamble for more time and induced labor at 34 weeks. We went home three days later with a healthy baby boy.

Then came the real miracles. As most of you know, within a month of Princess being born the seizures started. I can’t tell you what happened when anymore, and I really can’t tell you about anything else that might have been going on during that time.

People will tell you parenting and specifically parenting a special needs child is like running a marathon. The next two years felt like running wind sprints  sprinkled through that marathon.

Somewhere in the middle of all the chaos we found what I will loosely call balance. It was more like learning how to overcorrect and still catch the next step.

Somehow we became advocates and a voice for our son as well as others that suffer from seizures. We have spent that last two years doing what we can to help get access to CBD in our state and thanks to a very brave mother whose child has the same genetic disorder as Monkey, we do. We will be forever indebted.

We have and do lose sight of the splendor and mercy that has come our way over the last six years. But as I write these words Monkey is having a late night laughing fit with a toothless smile that brings my heart to life again.

Ever think you might forget to see a miracle? Sometimes it feels like we might or that we may not again. Life bears painfully down and tries to squeeze the last of your hope from your soul. But then, the goodness and grace of Christ still finds a way to shine. If only for brief moments in the midst of what for us feels like unbearable weight.

I know that the coming months hold lots of change for us. I don’t know what it will look like but I know that life will go on and we must choose to keep up. Time goes by too quickly. A lesson that has proved to be too real lately around our small town.

I’ve said it once and I’ll say it again, even as our lives feel like they just get crazier, our only choice is keep fighting and preserving and remember that we know the One who can carry the burdens that we cannot.

“But the God who sometimes can’t be found, will wrap his arms around you…” Bebo Norman, Rita

“In this wasteland where I am livin’ there is a crack in the door filled with light, and it’s all that I need to get by.” – Wasteland, Needtobreathe (great band from nowhere other than SC)

This is pretty much how I feel, daily. I’m not alone, I’m sure. But as long as I can catch a glimpse of the glory beyond where I am right now, I will make it, we will make it.

I look forward to the days and months ahead. There are some pretty exciting things coming and some awesome things happening in our lives right now. First and foremost, Monkey will be completely off of his pharmaceuticals as of the end of this week!!!! That is something to get excited about! We have seen more smiles, eye contact, movement and overall better life in the last several months since we started the slow process of weening him off these drugs. Our son is coming back slowly and I really don’t need anything else.

But more is on the way! Number 3, as I think I’ll officially refer to him at least for now, will be here in here in the next 6 or 7 weeks! I have finally started taking care of my wife’s nesting honey-do-list. Things are getting painted, non-used furniture and other things are being stored to make room for baby things.

It is fall. I love fall. Much like the first few warm days in spring though, I get an itch. I need to go somewhere. Hopefully to the mountains just as the nights start to get genuinely chilly. I need to build a fire. Morgan also happens to lose the six month edge in age she has on me this month.

Lots going on. I’m looking forward to getting to be home with my family after the arrival of Number 3. It is simply a few of the best weeks of life. No, we don’t sleep much and I’m not really sure how this is going to go with two from 3-5 yrs old and a newborn, but it is time with my family and that is always good.

It’a all just part of the overpowering glow coming from that crack in the door. The beauty of it all is that we really couldn’t handle the door being opened all the way. God’s glory would probably be too much for us. Moses didn’t fare so well with the burning bush and I bet we wouldn’t either. There will come a day though when we will see in full. But for now, I’m good with the crack. It gives me all the hope and peace I need to get through the day and the times when I feel like I won’t.

So Monkey had the worst three days he has had in almost 9 months this past weekend. We had been at the beach with my family. His regular seizure cycle happened to kick up Monday while we were there. He never really recovered from there. He had one good day when he knew he was at the beach on Thursday. We usually leave on Friday to avoid the traffic coming home.

Starting Friday night through Monday, he pretty much had a seizure every hour and sometimes more frequently than that. We lost count, but it was over 100.

This does not usually happen when all other variables are constant, not even on a bad week. Something was wrong. After three very long nights and two rescue meds that really didn’t do much other than slow the pace, we went to see his pediatrian on Tuesday morning.

Turns out, our gut was right. He had picked up a bacterial infection. We got him started on some antibiotics that afternoon and by the end of the week he was mostly himself again.

This is our life. Monkey cannot tell us what hurts. He does not run fever with infections. We guess, we lose sleep and follow our instincts.

What we do not get to do is overreact and freak out. Somethings in life, sure we can. But when these times hit, we have to prepare ourselves for the long haul.

These weeks are long and exhausting. And they will always be just around the corner.

As with most difficult times in life we have a choice, all of us. We can decide to do what we must and make difficult decisions with patience or we can shut down. Well the latter isn’t much of a decision for us. It would end pretty poorly for Monkey.

In times like this we rely on our God given intuition and faith.

Besides, we have Princess who must carry one her daily activity and Morgan with #3 to think about. The balancing act can be challenging, but we do what we must.

I tell you all of this not to brag or reassure you of our fortitude. I say this to encourage you.

Sometimes it can be challenging when we see a friend or family member go through the various storms in life. How we react with them is just as important as how we handle ourselves in these situations.

Pity is not the response. Be the positive to the tired. Be the voice of Christ’s comfort. You can do this, you will survive this with a little help from the creator of the universe.

Think of the disciples on the boat on the Sea of Galilee in the middle of a storm. They woke their teacher because they were afraid. He calmed the storm and then turned to ask where was their faith. He was on the boat! Right there! They still needed the reassurance of Jesus even while he rode the high waves with them.

So think of those in your life as they fight their battles. Do not meet their sorrow with more of the same. Remember that Jesus turned to calm the storm. Help bring peace to the storm.

It’s been a while. The summer has been busy. I hope that you have caught my posts for Firefly. There should now be a link here on my page to their site also. For those of you who don’t know, they are a company that specializes in the equipment and assistive devices for children with disabilities/special needs. Their goal is to provide products that help our kids to be included in daily family life instead of having to watch from the sidelines. They create them in fun kid friendly ways with them in mind first and foremost. Even better is that they don’t look like over sterilized pieces of metal from the hospital! We have a few of their items and love them! Shameless plug now over, but I am enjoying writing for them so please check out my posts there as well as the other bloggers who contribute.

Other than it being hottttt the summer has been good to us. Morgan is a new person when she doesn’t have to balance teaching from home with being the five million other things we all need her to be on a daily basis. She truly loves being able to devote all of her energy to our children. While we can’t wait for the day when this gets to happen all year, we are very grateful for the summers!

Number three is well on their way to joining us this fall! We have found out that we are having another boy! It is very exciting as look forward to his arrival. I think we may have settled on a name… maybe. We have had more trouble deciding what to call this child. We easily had names for either sex picked out for the first two within weeks, hopefully we’ll get it nailed down soon!

Monkey has been doing great! He and Princess are both loving swimming in the pool. He gets into his neck ring and just kind of relaxes right into almost sleeping while he floats around. He has started doing horse therapy every other week as well and seems to really be enjoying it! It has definitely helped with his stability and balance control.

We’re getting ready for some much needed vacation at the beach this coming week with my family! Princess has been waiting  a whole month (the last time we were at the beach) for us to go back. Needless to say, she is excited. I’m sure I’ll have lots of fun to update you about when we return.

Princess was eating breakfast this morning with her mom. She got up from the table and on her way out of the room announced that she needed go give Bubba a kiss. Bubba is what she calls Monkey. Now mind you that he had a rough day of seizures yesterday and a couple in his sleep so he was out cold when she said this at 10am. Times like this help remind of how incredible this time in our toddler’s life is and how much we should savor every moment.

She can be an absolute terror sometimes and stacked on top of a stressful day that can be pretty rough. But this, these times, these snippets of wonderful pull us right back from the edge and warm our hearts. The day’s troubles are gone and we are left with a sister’s love for her brother. It’s perfect, unprompted, genuine, raw and above all a glimpse of Christ’s beautiful intention for us all.

Bubba got his kiss and a couple strokes to the forehead and she resumed her everyday life as a three-year-old.

On a different note altogether, we have been keeping a secret. It’s kind of a big deal. We even kept it from our families for a while. As long we could hold out really. It’s going to change things around our house quite a bit. The rest of you might as well know now before somebody offends my wife and asks if she’s getting fat. That’s right! We’re adding a third of our own this fall! Baby #3 as we endearingly refer to this one, will be here by the beginning of November. We are excited and a little overwhelmed, but mostly just excited to add to our little family.

As if I didn’t already have enough excitement around here to write about. This should provide enough material to keep this blog going for a long time to come 😉