Category: Victories

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.

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

Quick update

by James, posted in Ministry, Stuggles, Uncategorized, Victories

So, Daniel’s VNS surgery did not happen. He was exposed to someone who was Covid positive within two hours of returning to school after thanksgiving. Thankfully his Covid test was negative and he returned to school on Friday. The downside is we have to wait until January to get the VNS.

Good news in the book front. The first round of editing is done! We are on track for a February release.

Have a great Sunday!

Another Year

by James, posted in Victories

Today is a very special day. Today Super D turns 9!

It is hard to believe he is nine already. The years have run together. I loose track of how long we have lived with epilepsy. It seems like it was just a couple years ago when this journey began. In reality it has been seven and a half years.

We have a birthday tradition in our house. When it is your birthday you get to choose a restaurant to go to. We decided to celebrate Daniel’s a day early, so we took him out to Chick-Fil-A. His favorite food is macaroni and cheese, so we decided we would take him there so he could get his mac and cheese fix.

As we were leaving it hit me. We made it another year. We made it to nine.

There was a time when I was not sure he would live to see nine.

It is hard to think about that. On one hand I am so thankful we are celebrating his ninth birthday, but on the other it is a reminder of how fragile his life is.

Daniel has changed our lives in ways I never could have imagined. His challenges have brought heartache and sleepless nights. They have also brought patience, compassion, purpose and a deep relationship with God.

When you ask people who their heroes are you will likely hear professional athletes, historical figures and actors. My hero is the wonderful little boy who turns nine today.

Happy Birthday Super D. Daddy loves you.

Daniel's Birth 017   IMG_E0859

Breaking Through the Red Tape

by James, posted in Stuggles, Victories

Almost a year ago we began the process of getting Daniel on Medicaid in Kansas. We knew the wait was a long one, so we started early. I had no idea what we were in for.

The process in Kansas was the biggest mess I have come across yet. Not only do they have a wait, but the process is full of bottlenecks and less than stellar agencies. Living in Leavenworth county, we only had one option to file and process the paperwork. They were not very helpful and I always felt like I was a burden to them. It would take them months to even look at paperwork and then they would not follow through with what they had promised.

So when we moved to Colorado I expected more of the same. It was actually the complete opposite. When I called, the lady who had to do the evaluation actually talked to me on the phone. She scheduled an appointment to meet within two weeks. Every time I have emailed her with things she responds almost immediately. It has been such a wonderful experience.

But at the same time it makes me sad for those families in Kansas who cannot get the help they need.

The process seems to be just as difficult in Colorado as in Kansas, but the difference is the people. Here we have an advocate who is a parent herself. In Kansas we had a paper pusher who seemed to work a job. The only way to get the best service is to find people who really understand and very few people understand as well as a fellow parent.

Colorado also gets something that most states do not completely grasp and the talking heads in DC cannot even fathom. Colorado understands it is the middle class families that are dying. There are a lot of great government programs out there for those who fall into the category of low income. Don’t get me wrong, we need to care for those who struggle to survive; we have a biblical mandate to do so.

But what about us?

See we fall into the middle class in America. We make a good living, enough that Daniel cannot get government benefits. The issue is, we barely make enough to survive. For us this means we are good day to day, but one hospital trip or a new medicine the insurance will not pay for and we are in trouble. The vast majority of Americans are in this category.

We are fortunate enough that I do not have to work. But what about families who both have to work just to live? A child with special needs often will require one parent to be at home. What do they do then?

That is where Colorado excels. They have a waiver for families like ours. If Daniel does not qualify, we can buy in. This opens the door for assistance with respite, diapers, medical co-pays and even gives me the option to get paid to care for him. All this is open to those of us who, while very blessed, struggle to keep our heads above water.

So, what can you do to help the situation? Great question! I’m glad you asked!

I have no idea.

Not what you expected was it?

The problem is very complex. So let me tell you what I do know. We, as the universal church, have a mandate to care for those who are less fortunate. We often fail to see the less fortunate as those who seem to have a good job and appear to have it all together. Trust me, we put on a good front! The answer is to pray with your eyes open. I’ll give you a little tip, if you listen well enough families like mine always let the struggle slip. Even a little help can make a big difference, especially if the family does not know Jesus.

The biggest thing you can do for the middle class families in America is let people know about the struggles we face as special needs families. This is especially true for those of us who are living this life. The more people know the better off we will be. A situation only changes when people understand the issue and are compelled to compassion.

Be an informed voter. This is so important. Things like minimum wage increases and tax cuts seem to solve the problem of the poor. But they destroy the middle class. God has given us all a brain and the ability to reason. Think and pray through those things before you follow your favorite news channel or political party.

The greatest thing you can do is pray and be ready to act. No matter what, God is still in control.

I will instruct you and show you the way to go; with my eye on you, I will give counsel. Do not be like a horse or mule, without understanding, that must be controlled with bit and bridle or else it will not come near you. Many pains come to the wicked, but the one who trusts in the Lord will have faithful love surrounding him. Be glad in the Lord and rejoice, you righteous ones; shout for joy, all you upright in heart. – Psalm 32:8-11

A good day for KC!

by James, posted in Victories

Darlene and I had an opportunity to attend a groundbreaking ceremony yesterday. This was not ordinary ceremony. This ceremony opens the door more families with special needs to get the help they so desperately need. Yesterday Shawnee Mission Medical Center broke ground on the new B.E. Smith Children’s Pavilion.

This new facility will be the home to the Lee Ann Britain Infant Development Center. It will replace the aging former school they currently reside in. For those not familiar with the work of the Britain IDC, they provide therapies for children with special needs. They currently serve 200 families a week between the preschool, pathways autism program and the various therapy’s they offer. This new facility should provide the opportunity to serve more families in a state of the art facility.

For me, one of the most powerful times was when Doug Smith, whose father the center is named for, stood to speak. He had a short speech, but one that carried a powerful message. He took the crowd to Exodus 3: 1-5.

Meanwhile, Moses was shepherding the flock of his father-in-law Jethro, the priest of Midian. He led the flock to the far side of the wilderness and came to Horeb, the mountain of God. Then the angel of the Lord appeared to him in a flame of fire within a bush. As Moses looked, he saw that the bush was on fire but was not consumed. So Moses thought, “I must go over and look at this remarkable sight. Why isn’t the bush burning up?” When the Lord saw that he had gone over to look, God called out to him from the bush, “Moses, Moses!” “Here I am,” he answered. “Do not come closer,” he said. “Remove the sandals from your feet, for the place where you are standing is holy ground.” (Christian Standard Bible)

Mr. Smith told the crowd they were standing on holy ground. That really stuck with me. See, this was not simply another groundbreaking ceremony. This was a God moment. For me, it was a visual reminder that God is moving in mighty ways in the special needs community here in KC. A good vision combined with a hospital and donor who desire to honor God produced an amazing outpouring of love and support.

It caused me to stop and consider where God is calling me. A great dream of mine was rekindled yesterday. The dream had somewhat faded from the doubt the enemy casts. I had forgotten how big God is. Yesterday, He reminded me.

We have a great work still to do when it comes to reaching the special needs community with the gospel of Jesus Christ. It will not be easy or quick, but it is possible. May God use us in a mighty way.

The best candlestick maker Kansas has ever seen!

by James, posted in Victories

We had a first last week. We got to see Super D in his first music program! The first grade classes at Tonganoxie Elementary presented “Three of a Kind”. Daniel got to play the candlestick maker.

Daniel’s para had asked me if we were interested in having him participate. I was very interested, but somewhat apprehensive. After all, crowds tend to be overwhelming for him. I had the chance to meet with the music teacher beforehand. She had an excellent plan.

In order to get Super D to his place on stage, she assigned two boys to hold his hands and lead him to the “boat” for their part of the program. This two boys took their job very seriously, making sure Daniel go to where he needed to be and back safely. After his part was done, he did very well sitting in the chair they had provided for him.

We discovered a new talent during the show. Daniel has the ability to blow raspberries on his hand to the tune of a song There is nothing like hearing a loud fart sound coming from the stage in time with the song.

I would have been more proud if he would have busted it out in his armpit, but hey, we have to have goals.

It was a wonderful evening. I cannot say enough about the excellent staff at the Tonganoxie Elementary. They have been so good to use over the last two years. Mrs. Haney went above and beyond, in my opinion, to see that Daniel was included. All the staff there has been so good about that.

It was an emotional night for me. I’m tearing up while typing this. I never thought I would get to see Daniel in a school program. That was one of the many dreams that died for me years ago. But thanks to a first class school staff that really cares about the kids, that dream was brought back to life.

This was also another view into the changing world. See, Daniel is just one of the kids. Those two boys did not fear their job, they seemed honored by it. Daniel’s whole class loves him. When he is gone, they ask about him. They do not see my boy as an outsider. He is simply Daniel, one of the class. That warms my heart.

Change is possible in this world, if we would only take our cues from a first grade class.

Oral stemming and dental hygiene

by James, posted in Tips and Tricks, Victories

I took three of the four boys to the dentist a couple weeks ago. Trips to the dentist can be a challenge for any of the kids. We never know what to expect with Daniel.

I am usually prepared for the worst. Most of the time that comes from Josh and Aaron. They are both at the age where brushing teeth is not something they remember and when they do, the efforts are minimal. To make matters worse, Josh has braces. Our last orthodontist trip ended with me having a visit with the hygienist because he was not brushing well. The dentist visit ended with a similar scolding.

Super D is the wild card. So far he has done very well, aside from trying to bite fingers when she was attempting to get the x-rays. We managed to get pictures of the front teeth, but the backs were not happening. I don’t blame him, having that sensor shoved into the back of your throat is not fun for anyone.

Well, I take that back. I ran into a friend there with her two girls. The youngest was so excited to tell me how she was going to get x-rays!

Dental hygiene is another challenging area for Daniel. I’ll admit, he often only gets his teeth brushed once a week. We ended up buying him some DenTrust three sided toothbrushes. These are wonderful things for children with oral sensory issues. Daniel will still bite down on them, but we can usually get all the teeth brushed. The three sided design means one pass covers every surface.

He does better each time we go. This visit, he allowed them to brush his teeth and floss them. Letting the dentist examine his teeth was not as popular. The best part, listening to him giggle as the toothbrush tickled his gums.

The dentist asked if he had oral sensory issues. I expected her to tell me he had broken or chipped a tooth. Fortunately, this was not the case. She told me the oral sensory seeking actually helps keep his teeth healthy. The constant chewing and saliva clean plaque off the teeth and wash it away. Hopefully he continues to be blessed with good teeth.

The next checkup, Baby B gets his teeth check too. He loves to imitate Super D. Hopefully he will follow in Daniel’s footsteps when it comes to dental visits.

Lord, our Lord, how majestic is your name in all the earth! You have set your glory in the heavens. Through the praise of children and infants you have established a stronghold against your enemies, to silence the foe and the avenger. – Psalm 8:2

Divine intervention

by James, posted in Victories

The last time I wrote a blog post, I promised to get back into the swing of things. Well, life happened. Or maybe I should say I just got lazy! Either way, I have not written gotten back into the habit of posting every few weeks.

The last post, State of the Union, mentioned we had started a new medicine and had gone 5-6 days without a seizure. Well, now it has been about two months we have been on the Felbamate. We went 30 days without a seizure. When Super D finally had one last week, it was minor and only lasted 10-15 seconds. This is a huge blessing. To go from at least 3 big seizures a day to one every month has made such a big difference.

For the first time in years, Daniel has called us momma and dada. He is much more alert and responsive. We are seeing less behavior issues. He is beginning to follow simple one step commands again.

In the last week he has gotten all his shapes right at school. His IEP goal was 80%, if I remember correctly. 100% is not out of the question now.

Smiles and laughter are the norm now in our house. For so many years we longed to see the sparkle in his eyes again.

It is easy to take developmental milestones and normal child behavior for granted until it is not there.

Did we find the miracle drug? I don’t’ think so, but it is a miracle. I had settled in to the idea that it was not God’s will to heal him and any seizure control was going to be divine intervention. That is what we have experienced the last month.

I have a few ideas why God chose to wait this long to bring some seizure control to Daniel, but I do not know the exact reason. I am thankful for the wisdom he has provided over the last five years and the relieve Super D has now.

Does this mean he will be seizure free one day? I don’t know and I honestly do not want to know. I’m not sure I could handle knowing exactly what God has in store for the years to come.

Regardless of what is to come, we will rejoice in His grace and mercy, even if the outcome is not what I want or desire.

God is good, full of grace and mercy, even when things do not go as we want. He sees the beginning from the end, where I only see the here and now. What a great comfort it

The eyes of the Lord are everywhere, keeping watch on the wicked and the good. Proverbs 15:3

is to know Him.