Tag: LGS

A Cross to Bear

by James, posted in Stuggles, Victories

I hate social media, but believe it is a necessary evil in today’s world. This is especially true for an author. There are times when it serves a purpose. For me, it is often the reminder of memories shared in the past. Last week I was reminded of a quote stumbled on while doing a research paper for school. It struck a cord with me, just as it did several years ago.


“Christianity has always insisted that the cross we bare proceeds the crown we wear. To be a Christian, one must take up his cross, with all of its difficulties and agonizing and tragedy-packed content, and carry it until that very cross leaves its marks upon us and redeems to that more excellent way which comes only through suffering” – Martin Luther King Jr

The reality is we are not promised a life of ease, or one free of suffering. Many of you reading this know this all too well. The struggles of life as a parent of a special needs child is often full of struggles. We all face a choice when life happens and we are faced with the unthinkable. When the suffering and trials come, do we rejoice as being counted worthy or do we get angry with God?

Trust me, rejoicing in the hospital or funeral home is not easy. In fact, it is absolutely impossible when we try to do it on our own. There are days where there is no joy at all. But God is good to remind me that He is still faithful even when the pressures of life seem to be too much to bear.

On the other hand, what do we do when life is going our way and everything seems good? Are we quick to shy away from those who are suffering?

After the Roman soldiers beat and mocked Jesus, He was led away to be crucified. The literal cross He bore was too much for the human beaten human body to carry to the crucifixion site, so they forced a man named Simon to carry the cross for Jesus. I doubt at the time Simon understood the significance of this task. He simply did it because he had no choice.

The cross many of us bear is a heavy burden. It often becomes more than we can manage. Many of us are longing for a Simon to carry it for a little while. So, what do we do when the Holy Spirit prompts us to carry another person’s cross? Do we jump in and shoulder the burden, or do we look away?

It is not easy to take on someone else’s burden, especially when we have our own to carry. For a Christian, we have no option. Jesus took the ultimate burden off our shoulders, taking the cross that was too heavy for us to bear on His shoulders. To bear someone else’s cross for a few hours is a small price to pay.

One day we will be able to trade this cross for a crown.

The Next Line of Defense

by James, posted in Victories

Three weeks ago we finally made it to Denver for Daniel’s VNS surgery. We have been trying to get this done for months now. He was either sick or had been exposed to Covid the three previous times we tried to get it done.

You may be wondering what exactly is a VNS? VNS stands for Vagus Nerve Simulator. The VNS consists of two parts; a generator and a wire lead. The generator is a small battery powered box that is very similar to a pacemaker. it is approximately 1 1/2″ long, 1″ wide and 1/4″ long. A incision is make in the left chest above the nipple and a “pocket” is created under the skin to hold the generator.

Chest incision 24 hours after

The lead is a 18-24″ long wire that plugs into the generator. It has a coil of wire on one end similar to a corkscrew. An incision is made in the neck and then the lead is fished up to the incision in the neck. The corkscrew is wrapped around the Vagus nerve in the neck.

Neck incision 24 hours after surgery

The thought behind the VNS is to disrupt the electrical signals in the brain in an attempt to teach it to “forget” how to seize. It works by sending a small electrical pulse from the generator to the Vagus nerve. Initially it sends a 0.25 mA shock to there nerve every five minutes for a total of 30 seconds each time. By the end of April it will be at full strength which is 1.5 mA shock every five minutes for the 30 second duration.

There are two more functions of the VNS. Starting with the first ramp up, it will sense Daniel’s heart rate. When his heart rate takes a sudden jump, the box will sense that and send an additional shock to the Vagus nerve to counteract what it perceives as seizure activity. It also comes with a magnet that can activate the generator. When he has a seizure, we are able to swipe the magnet across the box and send pulse to the verve that acts as a rescue med.

Three weeks in we are hopeful. He had a seizure Thursday night. When I swiped the magnet, the seizure immediately stopped. Normally it takes a little time for a seizure to end. They normally look like a hill, with a peak in strength and then slowing to a stop. This went form full seizure to nothing withing seconds of swiping the box.

For us, this brings a lot of hope, hope we have not had in years. The medicines are working very well to control the seizures. Perhaps this will be the thing that brings them to a stop, or at least minimizes the frequency to a manageable state.

January ramblings

by James, posted in Uncategorized

So, I’m a little behind with this month’s blog post. I struggled with a bit of writers block. I guess it comes from spending a lot of time in final book things. I had a couple topics, but they require a little more brain power than I could muster!

Some of the block was because January was another rough month in our house. For me, it started our with making my fourth trip from Colorado to southern Iowa in as many months. It was also the second funeral I have officiated in four months. Then we all got sick. We did not get tested, but from the symptoms I am sure we had Covid. I am not sure if we got it from Ben’s class or if I brought it back from Iowa.

The biggest disappointment from this month was canceling Daniel’s VNS surgery. The week we were all sick was the week the surgery was scheduled. The reality is we are not alone. The nurse made it sound like they cancel as many surgery’s as they actually complete right now.

This was the third time we had to cancel the surgery. Two were because Daniel was sick. The second time was different. He was exposed to a Covid positive child two hours into the school day after thanksgiving.

This has been on my mind a lot lately. A special needs classroom often has students with compromised immune systems. Yet it was another special needs parent who sent their child to school before their Covid test results came back.

Now I know their are extenuating circumstances. I doubt these parents meant any harm. To me, it is more indicative of the state our country is in. We have lost the ability, as a whole, to care about others. The idea of putting others first is foreign to many, even in the church. Covid has brought it to light in a major way. Personal rights, wants and desires have taken place of caring enough for others to put them first.

It’s sad that so many have lost the ability to think of others. For families like mine, who already fight for our kids, this is one more dangerous hurdle to overcome.

I have a challenge for February. I challenge all my readers to take this month to be conscious about how we really love others. Not just our family, but the people we encounter every day. How do you treat the cashier at the grocery store? The waitress? Our coworkers?

When our time on earth is done and the Lord calls us home, what will people say? Will they praise you with stories about how you lived and loved? Or will they struggle to find anything nice to say?

We are in control of the legacy we leave. So what kind of legacy are you building?

The Christmas Conundrum

by James, posted in Stuggles, Victories

December is here. Christmas is only five days away as I am writing this. My hope is you all have your shopping done and everything wrapped. We are officially done, well almost. A car that would not start took over the garage so one final gift could not be finished until today. I am a procrastinator, so I am usually finishing up right about now. Not exactly a good plan for someone whose sensory issues are triggered by crowds!

Christmas is an interesting time for us. This year Darlene and I had to have a discussion I never thought about. What do we do with Santa? I know, in the church world this is a topic that often creates disagreement and tension. My thought is to let kids be kids. Children need to have a good imagination and a sense of wonder. I also see how we can take the myth of Santa Clause and turn it around to create an opportunity to talk about the gift of Christ. So in our house we have run with the Santa thing.

This year we had the realization that Ben is old enough to recognize that Daniel does not have a “Santa” gift. Now, Super D has been the exception once the older boys realized the truth. I am not sure he understands the who thing, and even if he does, unwrapping presents is not his thing. Christmas gifts are too much sensory input for him. I am going on the idea that Ben will not notice what Daniel gets.

This year also brought on something I had not thought through before. We were shopping on Black Friday when my mom found a gift for Daniel, but was worried it looked too much like a baby toy. In the end she found the exact thing she wanted, but it made me think about age vs developmentally appropriate gifts. In reality this is an easy one, it is better to get developmentally appropriate gifts that he will play with, enjoy and understand.

If only it was that simple. I’ll admit, while it is best for Super D, buying a gift intended for a five year old for a eleven year old creates a little struggle inside. It is not a bad thing. It is, however, a gentle reminder he is not like his peers, or his siblings. Perhaps it is harder this year because middle school is eight months away. Maybe my subconscious has just suppressed it until now.

These realizations are not a bad thing. Daniel is not like every other child his age, and that is a wonderful thing. One of the buddies at church described him as a big teddy bear. He is super lovable and sweet. He also has an ornery streak a mile wide that can send me over the edge in the blink of an eye. The reality is, that is very normal behavior for a fifth grade boy! Moments like the gift realization are blessings that put the “normal” behavior into perspective which creates joy and not just frustration or anger. I wouldn’t have it any other way.

Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance. And let endurance have its full effect, so that you may be mature and complete, lacking nothing.
James 1:2-4

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