Category: Uncategorized

A Crazy Month

by James, posted in Uncategorized

May has been a crazy month for us. First of all, school is out. This throws Super D for a loop. As I am writing this, he is in the other room being very vocal and completely annoying the crap out of Ben! We also had some major milestones in the house. Our oldest graduated from High School this month, Daniel will be off to middle school next year and Ben finished Kindergarten! It has been a crazy, and emotional, month.

Some of the craziness is a good thing. Daniel has been a handful, but that is the good part. The VNS appears to be making a difference. He has been more vocal, often practicing numerous consonants, which he has not done in years. There is a trade off to this, however. As his mind clears up he gets so ornery! I suspect part of it is he does not know what to do with this new understanding of the world.

If you think about it, it has to be a little scary. For him, the fog he has lived in for the last nine years is starting to lift. He suddenly is processing more input and the ability to make sounds he has never done before, or at least in years. Saturday he had an outburst in a restaurant. He was excited and proceeded to tell us a whole story in his own language. It was loud and had most of the patrons looking. It was such a wonderful thing to see for us. The best part of it was the people sitting behind Daniel gave me a look of joy as we were leaving. They got it, as so many here seem to.

I am excited to see what the coming months bring for Super D!

Book Update

by James, posted in Uncategorized

Reaching The Overlooked is now available for preorder! Hard copies will begin shipping March 12th, 2022. Don’t want to wait? I don’t blame you! It is available in ebook format for the Kindle as of February 9th, plus it will be available on Apple ibooks and Nook in the next few days.

Print copies and eBooks can be purchased by using the links below

Xulon Press (direct from the publisher)

Amazon

Barnes and Noble

Kindle Edition

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?

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!

The Passing of time

by James, posted in Uncategorized

I have heard it said that time flies when you are having fun. I believe the last two years have proven that theory wrong. Time has flown by, but it was not fun. I realized today it has been almost two years sense I last made a blog post. December 2019 was busy. Then 2020 came. Nothing happened in 2020. We spent a lot of it locked away from the world for Daniel’s sake.

While 2021 has been better from the standpoint of getting back to some degree of normal, it has been harder than 2020. We lost my mother in law in January and a week ago I was finalizing the service for my grandfather. We have been fortunate to stay healthy.

There have been some good things that have happened in the last year. Super D was approved for a Vagus Neuro Stimulator. It is an interesting device, somewhat like a pacemaker, only attached to the Vagus Nerve in his neck. The idea is it will retrain his brain not to seize by sending a small shock for 30 seconds every five minutes. As long as he stays healthy, he will have that done in December.

I began the blog with the best intentions and lofty goals. Life with Super D makes it difficult to write a blog post every week. On top of that I have been working on another project, but more on that later. The hope now is to publish a blog post every month.

I have had some interesting experiences over the last year. Even though the blog has been stagnant, I have received numerous emails about the harness we bought Daniel. Those have been a bit of encouragement to start blogging again. The other project I have been working on is all about helping and reaching our families, even if it is just one. God has been drawing me back to this work with those people who just need a few answers. You can read that post here.

This month will be a little different. I expect to release another post in a few weeks with details on the other project I was working on. There are a few things that need to be finalized first.

Stay tuned!

A World Turned Upside-down

by James, posted in Uncategorized

Two weeks ago life for Super D and the rest of the family began to change. We sold the house in April. Two weeks ago today we had the biggest moving truck I could get parked in the driveway.

Two weeks ago today life as we knew it changed drastically.

We loaded the truck preparing to leave the only home our kids had ever known. For sixteen years, that was home. We moved in to the house in April 2003. That same day we announced to everyone we were expecting our first child. Over the years we welcomed three more boys into our home.

We also began the incredible journey we are currently on – the journey we call Life With Super D.

Two weeks ago a new chapter in life began for us. Not only were we preparing to leave our home, we were preparing to leave Kansas. God was calling us to join him in another place, so we were going.

As I type this I can sit on the sofa and look at Pikes Peak.img_0913.jpg

All this change has been rough for Super D. He did ok for the first week, but this week he has been a pill. I think he is suddenly realizing we are not going back to Kansas. This is a tough time for him. Change is always difficult for kiddos like Daniel who are very routine oriented.

We have a little bit of a return to normal coming in a couple weeks. We got an email from the school system last night. They have an extended school year class that meets in the month of July. Starting the 8th, Daniel will be back in school Monday thru Thursday mornings. This is a huge blessing. He gets some routine, and there will be someone in the district that gets to know him before the school year starts.

As far as God’s calling goes, we are still in waiting. We visited a church Sunday that wanted to get a special needs ministry off the ground. We will have to see where that leads, if anywhere. One prayer I had as we began to move was that God would place us around other families who have children with special needs. We have two other families across the street!

Life has taken an unexpected turn in the last couple months, but at least it is a good turn!

I was made a servant of this gospel by the gift of God’s grace that was given to me by the working of his power – Ephesians 3:7

Hello old friend

by James, posted in Uncategorized

It has been quite a while sense my last post. Life has gotten very busy here. Four boys will do that to a person! I really, really want to get back to writing on a regular basis, but I do not think it will happen. At least not on the set schedule I had previously. This will be a season of randomness, as I attempt to find some balance between all that competes for my my attention.

Baby B keeps me running most days now. I forgot what it was like to have a developmentally normal two year old in the house! This is my first go at the toddler years from a full time parent standpoint. I understand now why Darlene would often give me the “I’m done” look when I came home.

Super D has had a rough winter. The Felbamate had given us 5 months seizure free, then the flu season hit. Someone was sick in this house almost every week for the last four months. Baby B had influenza A, so in an attempt to keep Super D healthy, we got him a preventive dose of Tamiflu. We should have chanced the flu. It made him sick and we are pretty sure he was having hallucinations from it. The viruses took their toll on his seizure free record. For the first time sense being diagnosed, I thought I was going to have to use the rescue medicine. He had two seizures that lasted over 3 1/2 minutes. One was at school, one here at home. It was also the first time in years he has stopped breathing during a seizure. Thankfully that happened here when it was just me. It would have pushed the school nurse over the edge.

He is finally back on the mend. The last couple weeks have been good, other than the spring fever that is filling the house. I think Daniel and I have it the worst.

There are big things to come this year. Stay tuned!

Update

by James, posted in Uncategorized

So, it has been a while sense my last blog post. Things have been crazy here. I decided to take two classes the first eight weeks this semester and one the second eight weeks. This left very little free time. I have read seven books so far this year for school and am working on number eight. With the added school work, blogging has gone by the wayside. 

I planned on writing a proper post today, but life happened. I hope to be back on track in the future. 

Stay tuned, there is more life with Super D to come!

The Shadow of Death

by James, posted in Uncategorized

Super D has had a bad couple weeks. The poor guy has been sick. Sickness brings on all kinds of issues. Last week he had a seizure at school where he stopped breathing and his lips turned blue.

For him to stop breathing during a seizure is nothing new. He went through a period where every hard seizure caused him to either stop breathing or hold his breath. However, the episodes where fairly short. This was the first time he has turned blue from lack of oxygen.

I feel bad for the staff at school. The seizures themselves can be a scary thing. When you add in the fact that he might not be breathing, it is terrifying.

Things like this remind us that death by seizure is a real thing.

For the ladies at school, this is something new. For Darlene and I it is another facet of life with Super D.

We had to come to terms with this years ago. One of the first things we learned was there is a high risk of death with seizures. It is always with us. Death has it’s own room in this house. Some days it is hiding in the basement, in a dark corner. Other days, like last week, it is hovering over the house like a dark cloud. Either way, death is always nearby.

It is something you have to make piece with, because it will not go away. For me, it took a less than gentle reminder from God that Daniel is His child. I am powerless. No matter how much I try, I cannot change the number of days God has given Daniel. In reality, I would not want to. God is in charge, not me. There is great comfort in this.

I do not understand why children suffer. As a Christian, I understand God has a purpose for this trial. He sees the big picture and has allowed this to accomplish His will. To be honest, while I believe that, I do not understand it. But, I have a very finite view of things. Some things we are not meant to understand. Sometimes we can only trust God.

For us, we take one day at a time. We try to enjoy the time we have. As time goes by I think less and less about the shadow of death hovering over the house. It is a part of life. Every day I learn to trust God more and more. He is in control.

The Lord is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. – Psalm 23: 1-4

Reblogged from Without a Crystal Ball. “The 5 Reasons it’s Difficult to be Employed and Raise a Child with Special Needs”

by James, posted in Uncategorized

From time to time I come across great blog posts from other patents of special needs kids. This year my plan is to share a few of these. – James

When I was a child, my goals were to be in the FBI, a lawyer, a famous writer, or a top executive of an organization. Never one time in my life did I tell anyone that I just wanted to be a mom or a…

Source: The 5 Reasons it’s Difficult to be Employed and Raise a Child with Special Needs