Category: Stuggles

The Blessing in the Thorn 

by James, posted in Stuggles

Here we are, the day before Thanksgiving. I was not planning on writing a post today, but we have a lot to be thankful for. 

First and foremost, we have all four boys with us. This may seem like a strange statement until you face a childhood thorn.

Many kids with epilepsy do not live to see six. so every Thanksgiving is a reason to celebrate.

That fact is forever in the back of my mind. Today is extra hard. 

All I can do is trust God and rejoice in many, many good things which come from life with Super D.
So tomorrow we will eat too much and then indulge in the American consumerism mentality Friday. All the while thanking God for another year with Super D.

What are you thankful for? 

Finding A Voice

by James, posted in Stuggles, Victories

The time between major seizures has been holding quite steady lately. We routinely make it 3-6 days between major seizures now. This has been a major blessing. However, it is not without some side effects.

As his mind clears up we see Super D get a little more chaotic. I often tell people it is likely scary for him. For us, it is a little unnerving when our mind gets cloudy. For Daniel, he has lived with a cloudy mind for most, if not all, of his life. So now, things are being turned upside down.

He now has to learn how to deal with it.

This clearing has brought on a lot of speech. He is starting to put words together. Just the other day I heard him tell someone “Thank You”. It was amazing!

There is downside to his new found voice.

He has began to scream. Not just any scream. This is a high pitched, ear piercing, blood curdling scream. It is the kind of scream that hits such a high note my brain cuts the sound off. For anyone who has fired a high powered rifle without hearing protection, you know what I am talking about. In the car it is brutal.

It also scares the crap out of bystanders. He almost gave a lady a heart attach Saturday when we were out. You should have seen the cop looking as we walked down the street behind him.

The scream is bothersome, but I will take it any day over no voice at all.

Some of the Pharisees in the crowd said to Jesus, “Teacher, rebuke your disciples!” “I tell you,” he replied, “if they keep quiet, the stones will cry out.” – Luke 19:39-40

Halloween

by James, posted in Stuggles, Victories

Monday was Halloween and beggar’s night here in Leavenworth County. Halloween is bittersweet in our house. Josh decided years ago he was to old to trick or treat. So for several years it has been just Aaron.

We tried a few years ago to take Super D out. The Britain Center loaned us the Big Mac they used for Daniel. No, not the artery clogging sandwich from the clown restaurant. This Big Mac is a button. Imagine the easy button on steroids. The great feature of it is the ability to record a voice and play it back when the button is pressed. They worked hard with Daniel, getting him to press the button and wait for the candy.

Armed with his “voice” we set off. Our trick or treat adventure lasted three houses. See, for Super D, the only reason to go to someone’s door is to go inside. Every house we went to, he would push the button and then try to push into the house. In reality, I can not blame him. Darlene commented this year about what a strange tradition it is to dresBatDaniels kids up and send them out to beg for candy. In Daniel’s world, I imagine the whole event seemed extremely absurd.

This year, as we do every year, we bought Super D a costume. This year was different. This year he picked it out himself. We have him three choices; Batman, Superman and Spider-Man. He chose to be Batman.

Monday we got dressed and headed out. We did not take Daniel door to door, but he went with us. We stole the straw bale from Darlene’s fall decorations to use on our little hayride. Daniel rode on the trailer in his wheelchair. He seemed to enjoy it and did not show any interest to trick or treating.

Overall, it was a good night. We all had fun. Maybe one day Super D will get into this crazy tradition.

Be patient, then, brothers, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop and how patient he is or the autumn and spring rains. You too, be patient and stand firm, because the Lord’s coming is near. James 5:7-8

To Die For Mac and Cheese

by James, posted in Stuggles, Victories

The last few weeks have been very good for Super D. His personality his back and we are having fewer seizures. Last week he had a major seizure on Monday and then one again on Friday! That is huge for a little boy who typically has one or two major seizures a day. We have a good idea what has brought this about, but more on that another day.

We have stopped the ADD medicine, although not by choice. The insurance will not pay for the extended release medicine the doctor prescribed.

I would be fine with not giving Daniel any more medicine. However, we have a few safety issues.

He does not understand danger. His ability to reason is not what a normal child’s is. The ability to understand cause and effect does not appear to exist. This seems to be particularly need bad when it comes to heat.

Sunday he burnt himself. He reached into the hot oven for a handful of homemade mac and cheese. Now, I don’t blame him, my homemade mac and cheese is good, but not risk bodily harm good! The scariest part of this was his reaction. He did not cry and scream. We did not know he had burnt himself until later when we noticed the blisters.

I hate to put him on more medicine which could destroy his personality again, but I can not have him getting hurt.

We are fairly certain a lot of this behavior is due to the depakote. We will be taking Super D off that medicine in the next month. I am hopeful some of this behavior will stop when it is gone.

In the meantime, we watch him like a hawk and enjoy having Daniel back.

I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. Ecclesiastes 3:10-11

A Long Two Weeks

by James, posted in Stuggles

The last two weeks have been a little rough for Super D. We have had quite a few seizures recently. Friday, a week and a half ago, was really rough. Daniel had seven seizures in a matter of a few hours.

The next day was quite calm. Sunday, however, was a rough day. Daniel had his first colonic – tonic, or Grand Maul, seizure.

He ended up getting sic this past weekend. It could have been the illness that brought the increase in seizures. Or maybe it was the changing weather here in Kansas. Or it could have simply been the up and down cycle we have seen from the beginning. Or it could have been…

There is the problem. We never know what brings on a bad day or week. Being nonverbal, Super D can not tell us when he feels bad or what is wrong. All we can do is guess at what is going on.

We know some triggers. Constipation is the first thing we assume. It is the only thing we can guarantee will cause an increase in seizures. Sickness always brings some on. Lack of sleep is another.

This time we are trying to be more scientific. The neurologist has order some blood work to test Daniel’s Depakote levels. Will it tell us anything? Doubtful. But, it is better than guessing and wondering.

My son, if you accept my words and store up my commands within you, turning your ear to wisdom and applying your heart to understanding — indeed, if you call out for insight and cry aloud for understanding, and if you look for it as for silver and search for it as for hidden treasure, then you will understand the fear of the Lord and find the knowledge of God. For the Lord gives wisdom; from his mouth come knowledge and understanding. – Proverbs 2:1-6

The Drug Challenge

by James, posted in Stuggles

Super D is down to three different kinds of medicine.  Getting the needed medication multiple times a day has become a challenge in itself.

Daniel is on a medicine called Depakote. Depakote is a nasty, nasty drug that tastes absolutely terrible. The solution was to give him an extended release tablet.

There was just one problem. Super D can not swallow pills. So we dissolve the midday dose and crush the morning and evening pills so we can mix them with his Onfi.

From our standpoint, now we not only have to carry multiple medicines everywhere we go, but we also have to remember to find water to dissolve a pill. This takes at least 30 minutes, but could take as much as an hour. It is amazing how inconsistent the dissolve rate is on generic medicine.

So, when we travel we take two liquid medicines, pills, something to crush the pills, a cup to mix medicine in, and several syringes. Daniel’s medicine take up a bag off it’s own.

We have gotten good at mixing medicine in parking lots. I have learned the dash of the vehicle is a nice warm place to dissolve pills. The biggest challenge is remembering to bring his midday meds if there is any chance we will be out when he needs them. Evening excursions are just as challenging. We have to decide, do we give him his medicine early, or do we wait.

Who knew three medicines would require so much work.

Blessed are those who find wisdom, those who gain understanding, or she is more profitable than silver and yields better returns than gold. – Proverbs 3:14-15

Accepting the Unacceptable

by James, posted in Stuggles

We had a pastor who liked to ask, “Do we want a God we can control, or one who is in control?” For Christians, the answer should be simple. We want a God who is in control. Or do we really? Do we really understand what it means to have a Divine Being in control of all aspects of our life? That is something every person has to struggle with in life. That question is, at least on the surface, essential to coming to Christ. I did not really understand this until after Daniel was diagnosed.

For those who do not believe as I do, bear with me. This is about our life with Super D.

The first few weeks after after we realized something was wrong are a little bit of a blur. There was an ER visit and an appointment with a very old school neurologist. It all came to a terrible conclusion one Friday afternoon in the EEG wing at Children’s Mercy here in Kansas City. What should have been a hour long EEG ended up taking three hours.

At the end of it all the neurologist came into the waiting room to tell us how bad things were. The doctor stood in the door way of the waiting room. “Your son has a rare and very serious form of epilepsy. We can give him one of these three medicines,” he told us. All I remember from his talk is one was safer, one would only work for a while, and the third could cause permanent vision loss. His next statement shook me to the core. “There is a high risk of death by seizure with his condition.” And with that he left the room.

Yes, those were his exact words. This is bad. It was bad enough he wanted to hospitalize Super D over the weekend, even though they would not start treatment until Monday.

Talk about a stellar bedside manner!

This is something no parent wants to face. It is not fair. In fact, it is straight up crap. But that is life. We are not promised a life of ease or one without trials. Man screwed that up thousands of years ago. 

But, every day is a little easier than the one before.

There are moments of panic and days when it is not easy. Bad seizure days bring the reality that we may outlive Daniel back into my mind. We went through a period where Super D would stop breathing during seizures. Every seizure left me wondering, is this the one? The rare occasions where Super D sleeps in make me nervous, afraid of what I might find.

This is not something you come to terms with overnight. I struggled with the idea I could outlive my child for close to two years before I came to terms with it.

That brings us back to my opening paragraph. See, I wanted a God who was in control, until it came to Daniel’s life. Then I wanted to be in control. I wanted to fix it. The parent in me said it can not be this way, there must be some other solution.

Only, it is not in my control. There is absolutely nothing I can do to change the outcome.

It was only through Divine intervention that I came to terms with it. One day the LORD reminded me “He is more my son than yours and I will take him when I want”. I’ll admit, I still struggle with it. Some days are harder than others. Stories where children die are always brutal.

Regardless of how we view it, this trial is not in vain. God is in control. He knew Super D before he was born. As a good father, I want what is best for my kids. God, as a good father, wants the same thing for us. He is walking through this with us and is actively working on our behalf. He lifts us up during the bad times and celebrates with us during the good times. 

We may not understand it, for we are not meant to understand everything. We have hope and hope, at times, is all there is. 

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life? But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:25‭-‬27‭, ‬33‭-‬34

A Strange Sunday

by James, posted in Stuggles

Sunday was a strange day for Super D. He had two larger seizures, which is not out of the ordinary. It was the seizures themselves that were odd. Both seizures caught him by surprise.

Normally Super D knows when he is about to have a seizure. I do not know exactly what it is that alerts him. We wonder if he is seeing auras or has some other visual indication one is coming. Whatever it is, it has been a huge blessing. Falls from a seizure had been non-existent for a year or more until two months ago.

We were visiting a relative in July. Our boys and one of my nephews were playing in the yard. Daniel started running around the yard and then had a seizure. He went stiff as a board and fell over backwards. We assumed he could not find an acceptable place to set down. We wrote it off as a fluke and went on.

That was until Sunday. Shortly after getting up, Daniel was playing with his basketball goal that hangs on the basement door. Suddenly I heard the half groan, half cry that he emits often during bad seizures. I was only a few feet away, but by the time I got to him he had his knees against the door, head back and those little fingers caught in the basketball net. That net was the only thing that kept him from falling on a chair he pushed over there. Later that evening he had another one in the driveway. He was standing beside my SUV and went down.

Darlene wonders if the ADD medicine makes him feel so off that he can not tell the difference between what is the new normal and when a seizure is coming. I’m hoping it is only a fluke, however, it very well could be warning us something is wrong. Unfortunately, only time will tell. 

The Lord is gracious and compassionate, slow to anger and rich in love. The Lord is good to all; he has compassion on all he has made. All your works praise you, Lord; your faithful people extol you. – Psalm 145:8‭-‬10

The question

by James, posted in Stuggles, Victories

We took a trip to the county fair this summer. The older boys and I wanted to see the garden tractor pull. We wandered around looking at the animals and exhibits, then settled into seats as the unlimited category finished their first pull. Super D was not too sure about the tractors, which was surprising because he loves tractors. All was going well until the unlimited class came up for a second pull.

Darlene decided to take the baby and Super D off the grandstands to get away from the noise, hoping Benjamin would go to sleep. All was well until the second tractor took off. Suddenly, Darlene was standing beside me yelling over the roar of the engine, “We have to go, NOW!” My first thought, we had a pullup malfunction. Lets face it, crap happens and often at inopportune times. The situation was far troubling than that. The noise was too much for Super D. All he could do was scream every time an engine roared to life.

We told the older boys we had to go home. Super D was done. Aaron, our 10-year-old, got quite upset because he wasn’t ready to go. Then it happened, he asked the question I feared would come one day.

Why is everything always about Daniel?

There it was. Six little words of frustration from a child. Six little words that cut like a knife. Six little words that affirmed what I had feared, no matter how hard we try, the other boys are not getting the attention they need and deserve.

Those six little words reminded me how important time was. They also drove home the point others had tried to make about the importance of time away from Daniel. That may sound a little harsh, but there is no other way to put it.

Those six little words told me something else. They screamed at me that I was failing as a father and a husband. I had let my family down. While I thought I was doing a decent job of spending time with everyone, I really was not. I had unintentionally made Daniel more important than everyone else. I had spent so much time with him in the last two years, I was having trouble seeing things as they really were. I had unintentionally sent a message to my boys and my wife that Super D mattered more than them.

I don’t think any of them would or could express it that way. Aaron expressed it this way a few weeks later. “You want us to go back to school because we stress you out.” Darlene admitted she felt the same way. In reality, I stressed myself out by not letting go and they took the brunt of it. I alienated those closest to me without realizing it.

Thoes six little words I had dreaded have become six of the greatest words ever spoken to me. They have rewritten a story line which should not have been written to begin with.

What a blessing it is to know, even though I dropped the ball as a father and husband, they love me and are quick to forgive.

Above all, love each other deeply, because love covers over a multitude of sins. – 1 Peter 4:8

First Day of Kindergarten

by James, posted in Stuggles, Victories

Daniel started kindergarten this week. For him, it brings some much needed routine and structure. For me it brings some needed rest, but it is also bittersweet.

Kindergarten is a big milestone for Super D. Thirty percent of children diagnosed with I.S. do not live past the age of 3 and many who do develop Lennox-Gastaut Syndrome, which is a devastating, untreatable form of epilepsy. While he shows signs of LGS, many of the typical signs are not there. It is a cause for celebration.

Even though we are celebrating the milestone, there is still some sadness which comes from it. We have always taken the boys to school for the first day of grade school. This has been so important to me that when I had jury duty, I convinced a federal judge to delay court so I could take Aaron to his first day of kindergarten. This year was different. This year we walked Super D to the bus when it pulled up at the end of the drive.

So, why the change? The answer is simple, we felt it was best for him.

Life, to a large extent, revolves around Super D. My tradition of taking the kids to school on the first day needed to be put aside to make the transition easier for Daniel. In reality, it is more than that. It is a subtle reminder that there is no “normal”.

The first day was a win. Daniel did really well. He really likes his teacher and para. So do we. This is the beginning of a new chapter in the story of Super D’s life, a new and great adventure in the making.

When I said, “My foot is slipping,” your unfailing love, Lord, supported me. When anxiety was great within me, your consolation brought me joy. – Psalm 94:18-19