Tag: special needs

The State of the Union

by James, posted in Victories

Things have finally slowed down here. I finished my spring classes and decided not to take a summer class. I am going to enjoy the calm for the next week. Super D will be finished with Kindergarten on May 17th. Josh and Aaron will be out on the 26th. We will have a couple weeks before the extended school year starts for Daniel.

Over the last few months we have had some big changes for Super D. We had another EEG done at the end of March. The neurologist said it looked different than the one done a year before at the Cleveland Clinic, but the same as the last one we had done at KU Med. Basically, it didn’t tell us a thing. That is what we expected though. His EEG results have been pretty consistent.

We did start him on a new medicine. He has been on Felbamate for a month now. This is a drug none of the other doctors had mentioned. It is also the second medicine we have tried where we were required to sign a waiver before starting the meds.

When this medicine was in the trial stages, they suddenly had 18 people out of the 100,000 in the trial die. This prompted the lawyers to require a waiver, and likely why we have not heard of it before. Here’s the thing, most of the people who died were middle aged women with autoimmune disorder. The youngest death was 13. It is a nasty medicine, but that is where we are at with his treatment.

Now for the good news.

The Felbamate seems to be working! We are cautiously optimistic at this point. We have seen other medicine and supplements work at first, but then fail after a period of time. So far, we have been on this medicine about 5 weeks and we have not seen a major seizure in 5 or 6 days. Even the periods of “activity” that often lead to a seizure have been reduced dramatically.

I got to hear Daniel call me dada Saturday. It has been years sense the last time I heard that.

Hopefully this is the divine intervention we have been seeking.

For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O Lord, be upon us, even as we hope in you. – Psalm 33:21-22

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

70 and Sunny

by James, posted in Victories

Last weekend was absolutely beautiful here in Kansas City. Darlene and Ben had been sick last week, and poor Super D was still not himself. So with the temperature around 70 Saturday, we decided to take advantage of it.

We loaded everyone up and headed out. What started as a simple trip to get some parts and groceries turned into an all day excursion. We ended up spending some time at the Mahaffie Stagecoach Stop and Farm in Olathe.

Super D was not really into it. He does not understand the history or seem to enjoy the exhibits. He watched the animals a little. As we were leaving, we let him out of the wheelchair to run a bit. He headed straight for the animal pens, but quickly took off in his normal game. For him, it is more fun to run from Dad.

This is a normal outing for the family. It makes going out a challenge, but we still do it. Life for many years has been all about Daniel, no matter how hard we try no to make it that way. And, as much as I hate to admit this, it is taking it’s toll on everyone.

So when days like Saturday pop up, we take them. Daniel might not have enjoyed the day, but the other boys certainly did. Aaron loves animals, so this was right up his alley. Ben was happy just to be outside and run. Even Josh seemed to enjoy it.

For me, it was a great day. Even though we have to adjust our trips slightly to accommodate Super D, it was a return to a certain degree of normal. It was a time to enjoy my family. Leaving Mahaffie, I was struck with the realization of how blessed I really am.

Sunday only strengthened this realization. During the prayer request time at church, Daniel was asked if he had any prayer requests. He said Dad. Sometimes that little boy surprises me.

We take things day by day, enjoying the good days like Saturday, struggling through the bad, but always thankful for the blessings we have.

Rejoice in the Lord always. I will say it again: Rejoice! – Philippians 4:4

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 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

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

The Kindness of a Stranger

by James, posted in Victories

Christmas time means shopping, and shopping means lots and lots of people. This year we have done less online and more in stores, with Super D in tow. With all the people, this can be challenging to say the least. Often the wheelchair will not fit down crowded isles, and if it does, the hands and feet never stop moving. People tend to get cranky when he pulls their carts sideways as they go by.

Our last big shopping trip went about the same. We set out with Super D and Baby B to pick up a couple last minute items. What should have been a three hour trip ended up being close to five. Days like that are hard on the little ones, especially Daniel.

After the second stop, we slipped into Chick-Fil-A for lunch. Super D was struggling by then. Lunch was our normal outing event, with seizure activity followed by hyperactivity. Throw in a little throwing of food and some attempting to bolt and you have a normal restaurant experience for our family.

I normally watch people, this day was no different. However, it was different in the fact that no one was paying attention to Super D. Or at least I thought no one was.

As we were finishing up, a young lady in her 20’s appeared at our table. She had been sitting close by. To my surprise, she must have been watching us. She stopped to tell me one thing.

“Your doing a good job.”

By that time I was getting frustrated. God knew what I needed and sent this stranger to tell me.

Now, a lot of people tell me things like this. For it to come from a complete stranger is something entirely different.

I do not know who the young woman was. She will never know how much the simple comment meant to me. In a world filled with so much anger and hate, five simple words can make a huge difference.

Next time you see a family struggling with a special needs child, give in to the urge to encourage them. A simple word of kindness can mean so much to a stranger.

Let your gentleness be evident to all. The Lord is near. – Philippians 4:5

The Fear of Water

by James, posted in Victories

Shortly after Super D turned two, we took a trip to a local indoor water park or Josh’s birthday. We thought this would be a great weekend trip. Daniel loved water just as much as the other boys. How could this turn out bad?

But, alas, it did.

Daniel was extremely excited when we got there. He ran straight for the water. We decided to get a life vest for him. You know, safety first. He was not happy, but at that point we could halfway reason with him.

Then it happened. The giant bucket dumped thousands of gallons of water from twenty feet up. That was the end of the fun.

I do not know if it was the noise, the water, or the children screaming. Whatever it was, it absolutely terrified Daniel.

This set into motion a couple of years where we avoided water if at all possible. The fear of water was so overwhelming for Super D that when we started at the Britain Center he would not go into the therapy pool. When I tried to carry him in, he screamed and braced a leg against each side of the doorway.

The ladies at the Britain Center are absolutely amazing. Within a year, they not only had him going in the pool, but he was actually enjoying it. By the time he graduated, he was blowing bubbles in the water, putting his head under and even floating on his back some.

To this day, I still have no idea what the exactly caused the fear response. I am just thankful it is gone. That is, until he jumps into a pool on his own. (Yes, he did this last year!)

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 23:4

 

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

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