Category: Stuggles

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 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!

Jesus Wept

by James, posted in Stuggles

Thanksgiving this year finds us in Florida. It was a week of firsts. This was the first time Daniel had ever flown on a plane. He did amazing. It was also Ben’s first time at the beach. Despite having ear infections in both ears when we got here, he took to the beach like a local.

Today we took off with my brother-in-law to go fishing. As I was standing on the pier with Super D watching the other kids run up and down the beach, I was suddenly struck with a great wave of sadness. It came on quickly and without mercy. At first I told my wife I was just missing Colorado. Then suddenly the real reason hit me.

I was mourning the loss of Daniel’s ability to play like the other kids.

It took me a bit to figure it out, but there it was. Daniel should be down there running and playing with his cousins. But he wasn’t and he couldn’t safely be like the other kids. The grief in that moment was devastating.

Grief is a funny thing. There are times when it comes out of nowhere an can quickly ruin a fun event. Seeing other kids play is often a trigger for me. I am so thankful for every day with Daniel, but that does not stop the occasion time of sadness over what will never be.

I have read things where authors say they pushed through the grief or got over it and never looked back. I recently heard someone tell how they worked through all the stages of grief in an hour and have just pushed on.

I don’t think these people are truly handling their grief over the loss of the hopes and dreams they have for their child. What people do not want to admit is the mourning and grief does not end when we get our diagnosis. Every milestone and event is a reminder of the dreams and hopes we had for our children, many of which will never be. For me, kindergarten was very difficult. I know the transition to middle and high school will be tough too. Watching the other boys get married will likely be devastating.

We need to drop this act. Life with Super D, and every other super hero child, is difficult. We, as parents, must be able to admit how had it is at times and be free to mourn the lost hopes, dreams and milestones. Stuffing the grief does not help anyone. Neither does spreading the idea that it is a one and done thing.

So, parents, drop the everything is OK act. Mourn those milestones and praise God you have milestones to mourn. Stop making other parents feel like something is wrong with them because they acknowledge these times of grief. And to those who are not blessed with their own super hero, give us the freedom to mourn these moments, without judgement or condemnation.

Even Jesus mourned over the loss of Lazarus just moments before raising him from the dead. If the Messiah can mourn, why can’t we?

 

 

The New School Year

by James, posted in Stuggles

The time has come, school is back in session. Daniel started at the new school here in Colorado Springs. So far we are off to an ok start. He was super excited to be back in school, but that excitement had faded by the end of the first day.

This transition has been a little difficult for all three boys, but it could be extra difficult for Daniel. The life skills class in Kansas had four students in it. On top of that, he had the same para for three years in a row. She was like family to us. Now not only does he not have his favorite people, but the class is much bigger. He now has 15 students in the SSN classroom, although some only spend a small portion of the day in there. He is suddenly a little fish in a big pond.

The shear size of the schools is a big change. The elementary school Daniel attends is one of 24 elementary schools in the district. They have three middle schools and two high schools. The middle school and high school’s our kids attend alone have more students than the entire district we came form in Kansas. The high school alone has 1800 students and 120 staff members! Needless to say, it took a lot of adjusting for the kids. I was even overwhelmed at Super D’s back to school night.

This is also the first time in the kid’s life that they can walk or bike to school. The older kids are ok with it, Daniel not so much. The school is about a half mile from the house, so we walked to the back to school night. He did very well that day, so we set out Thursday morning. Daniel was excited to be there, so I thought this would work out well.

Boy was I wrong.

I made the decision to take Ben and walk down to get Daniel after school. Ben complained halfway there that he wanted to sit in the shade. Then he fell down, so he was upset by the time we got to school. Daniel seemed ok until we started off. Turns out making him walk home after a big day at school was a recipe for disaster. He made it home, but he was not having it the next day.

Friday morning brought a huge fit when we mentioned school. In the end Daniel would only go if I got the wheelchair out. No big deal. It would have made the trip easier and faster, if I had left Ben at home. By Friday night I had given up and drove the car to get Super D.

Today was a new week. This morning I loaded Super D into the Weehoo behind the bike and set off for school. He loved it and seemed to be happy to be there. Hopefully this week he will get back into the swing of things and back to the point where he likes school.

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

Dangerous Regression

by James, posted in Stuggles

It has been rough around here the last few months. We cannot seem to shake the sickness. On top of that, Super D has had very few good days. He has been regressing for several months now. I didn’t realize how bad it was until last week.

Wednesday morning started like most Wednesday mornings do. I was out of the house by 6:10, headed for the Men’s bible study at church. Darlene showed up at 7:30 to drop Baby B off on her way to work, and then I headed home because Aaron was sick again. An hour later I got a text from Daniel’s teacher.

That morning Darlene had cooked sausage for the boys. Daniel couldn’t wait and attempted to steal a piece while it was cooking. Darlene didn’t think he had gotten burnt and didn’t see any signs of it.

Only, he had burnt himself on the pan.

Unfortunately, this is not the first time we have had issues like this. Super D has lightning fast reflexes. The last time he got burnt, he reached into the oven to sample the casserole I was checking on. I had barely opened the oven door when I saw a little hand dart in. He wasn’t even in the kitchen when I started to open the door, I made sure of that.

Last week’s incident made me realize how far Super D has regressed in the last 6 months. There was a time when we could tell him something was hot and he would stop, give an approximate sign for hot and then move away. Not anymore.

It is a symptom of a much bigger issue. Suddenly, all cause and effect reasoning seems to be gone. He does not appear to understand the simple though process of “I did this and it hurt, so I shouldn’t do it again”. He will do the same things over and over.

It is aggravated by the fact that he does not seem to feel pain. If he does feel it, his pain threshold is so high he is seriously hurt before it registers. If I touch a hot pan, my brain pulls the hand away quick enough to only leave a little redness. I’m afraid a hot pan would end in blisters for Super D. As quick as he is to grab things, the brain is twice as slow to register pain, if it does at all.

It is a scary thing. It is nearly impossible to watch him every second of the day with three other boys in the house. So we have to adapt. This means posting a guard between the table and the counter so he can not enter the kitchen. Of course, then that person can not see if he is climbing the gate to go upstairs. If no one is available to help, I often resort to bringing the wheelchair inside. I hate to confine him, but I can not risk him getting hurt while I cook.

Hopefully, we will be able to find the cause of the regression and fix it. Until then, we will have to be on guard.

This is our crazy Life with Super D.

I will say to the Lord, “My refuge and my fortress, my God, in whom I trust.” – Psalm 91:2

Tests and more tests

by James, posted in Stuggles

Yesterday was a long day for Super D, and us for that matter. We had an appointment to have an MRI done. The last one we had done was over a year ago. It seems this is something we end up doing every couple years. They never find anything new, which is a good thing.

This time we had it done in another attempt to rule everything out. At the end of the month we are having another EEG done in this search for answers. I doubt either one will be helpful.

The MRI  is not as easy as it is for an adult. We can lay still. For Daniel, the procedure requires he be sedated. A 45 minute MRI turned into a four hour event, not counting the drive time to Topeka.

So why put him through this?

Because we are running out of options. We need to add a new medicine, but we need to make sure we have the latest and greatest information available.

His seizures have been getting worse again. He has had several big seizures each day for the last few days. Yesterday was one of the worst we have seen. The number of seizures was not as great as some days. It was the severity of the seizures today. He stopped breathing during one in the hospital, long enough for his face to turn blue. It was bad enough the nurse needed to give him some oxygen.

Something is going on in his brain. We desperately need to find out what. It may be the natural cycle he seems to be on, but these have been worse than any we have seen in the past. Nothing about epilepsy makes sense, but it is worse for Super D. He does not fit into any known category. The doctors do not know what to do with him. Hopefully these tests will shine a little light on the situation.

In the end I will not be surprised if we spend several grand to be told exactly what we already know. But, we will spend the money if there is even a slight chance we can find something new that might help treat him.

If only my anguish could be weighed and all my misery be placed on the scales! It would surely outweigh the sand of the seas… – Job 6:2-3

Five Years

by James, posted in Stuggles, Victories

It was five years ago this week our great adventure that is Life with Super D began.

Yesterday a memory popped up in Facebook reminding me of that week. Five years ago we were visiting with neurologists and having numerous test done. Five years ago I posted this on Facebook:

“More tests today and another stay in the hospital tonight. The doc is sure it is epilepsy, but it is treatable”

I look back on this simple statement and thank God I did not know then what I know now. Five years ago this was a bump in the road, one we could throw some medicine at and everything would be back to normal. Little did we know fire years later we would still be attempting to treat something that is not treatable, or at least not yet. The go to seizure treatments did not work, so we moved on to things which had a greater risk of side affects. Still no treatment works for an extended period of time. Surgery is not an option as the seizures are not confined to one part of the brain. A neuro stimulator may work, but there are chances for serious complications.

Until we find the key to controlling Super D’s seizures, we will celebrate the good days and mourn the .facebook_1485954712572bad. Either way we will praise God.

Five years ago today I had posted this picture, taken in a hospital room at Children’s Mercy here in Kansas City. The caption said “SMILES ARE BACK!!!”. Five years ago we experienced a roller coaster of emotions, from the sorrow and pain of hearing Daniel has epilepsy to the joy of seeing something a simple as a smile. That is how the last five years have been. Sorrow and pain followed by great joy. Nothing on this earth says everything will be ok quicker than a smile from this sweet angel or a big hug from my super hero.

Through it all we have been forced to grow. This type of thing is not something which can be ignored. It is also not something mankind is able to endured alone. The last five years have tested our faith. God has continually given us more than we can handle so we could learn trust and to give our struggles over to Him. It is through those test and trials that we have grown stronger and closer to God. We are not special people. We are no different than anyone else. God has blessed us differently than others.

Yes, I see the last five years as a blessing. I have seen God do things and move in ways many will never have the chance to. That is a blessing. I also see the world differently than I did five years ago. Don’t get me wrong, if I had my way Daniel would not suffer for God to be glorified. My ways are sinful and taken from a finite view of things. God sees the beginning from the end and, even though it does not make sense to me, He has a great work that required the last five years and the years to come. Regardless of the outcome, He is in control, not me. There is great freedom that comes from that fact.

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. – Psalm 27:13-14

The Uncertain Future

by James, posted in Stuggles

Life with Super D is filled with varying degrees of challenges. Unfortunately, they all add up over time. Eventually things fall apart. Normally it is not that bad, but this one was the worse yet.

Daniel had a very good day. He was calm and not into everything. As the night went on he got a little more rambunctious. However, for him it was a good day.

That is, until he decided to throw the little metal train. The train flew across the room, landing on Aaron’s head.

Now, Daniel throws a lot of things. I think it is a game to see what happens. The problem with things flying through the air is someone is bound to get hit. Aaron seems to be in the way of the flying toys more often than anyone else.

In a moment of shock and hurt he screamed at Super D. This is not unusual these days, Aaron is at that age where he yells. A lot. It was what he said, though, not how he said it. He screamed at Daniel, “I hate you” and ran off. A few minutes later he told me he hates Daniel.

I keep telling myself he does not really mean it. I have yet to convince myself that is really the case.

All the varying degrees of challenges take their toll. They erode relationships and add a lot of stress to this house. He takes so much time from the other boys, they lash out against everyone else.

What if they really grow up to hate Daniel?

It is unlikely Daniel will ever live a normal life on his own. While we still face an above average possibility of death by seizure, I would like to think he will outlive us. My hope has always been one of his brothers would care for him. It beaks my heart to think they could have such resentment for Daniel that he would not be welcome with them. Yet, it is a real possibility.

The thought of Daniel living in a home is not a new one. We have had people make comments to that effect before. For us, that is not an option. This is his home and this is where he belongs. My hope is the other boys will eventually feel the same way.

I imagine my grandfather struggled with many of the same thoughts. For almost ten years he cared for my bedridden grandmother after her stroke. When she passed away this spring he was 92, if I remember correctly. He fought long and hard to keep her at home at times. Why did he do that? It all boils down to love.

Will the other boys love Daniel enough to take care of him when we are gone? I wish I knew. Then again, maybe I do not want to know. Either way, he will be taken care of.

God will still be on His throne.

We love because he first loved us – 1 John 4:19