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

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

Sickness in the house

by James, posted in Uncategorized

We have been off to a rough start in 2017. Super D and I have both been sick, which is why there was not a post last week.

Thursday I got a call from the school not long after Super D got there. He was running a fever. So, I went to get him.

Now, a low grade fever is not something we worry about. Daniel’s temperature will often be between 99 and 100. He does not sweat like a normal person. We are not sure if it is the medicine or a side effect of the epilepsy. I know one of the medicines he was on could cause this issue, but not the only one he is currently taking. The solution is usually to get him something cold to drink and let him cool down.

Unfortunately, this fever was the same virus Baby B had a few weeks ago and the one I am still fighting.

Most kids will bounce back fairly quick from this type of thing. For Daniel, any sickness lasts twice as long. Where Ben’s fever lasted a couple days, it took four days before Daniel’s broke.

We see an interesting thing happen when he is sick. He does not have seizures. His body devotes so much energy to fighting the illness that it can not muster the energy to seize. At least he gets a little relief.

He is now back to school, but still fighting the crud. We can only hope this will be the last sickness this year.

I know, I’m dreaming.

Great crowds came to him, bringing the lame, the blind, the crippled, the mute and many others, and laid them at his feet; and he healed them. – Matthew 15:30

Christmas with Super D

by James, posted in Victories

Christmas has once again come and gone. It is always a struggle in our house. What do you get a child who does not play with toys like a “normal” kid? We have discussed not getting him anything and I have thought about getting practical things like clothes. However, this year like all those past, we did our best to find toys he might like.

But why wouldn’t we? To do any less would send a message we do not want to send to him.

We are still trying to figure out what to do with his gifts. The idea of tearing paper is extremely offensive for Daniel. He will not do it, no matter how hard we try. This year he even refused to stick his hand in a stocking.

Part of this was, I believe, was due to the rough start we had Christmas morning. He had a seizure before we got up and then a second big one while Aaron was passing out presents. This, combined with the overwhelming nature of opening gifts and the absolute chaos in the house, was too much for poor Daniel.

This year was a little different than others. As the day went on he played with a few things, especially Ben’s toys. We are thrilled to see progress like this.

On a side note, Super D’s progress left me with one of the best birthday presents ever. I asked him for a hug. He looked me in the eyes, threw his arms open and gave me the biggest hug I have gotten from him in some time.

But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. – Psalm 5:11

Merry Christmas!

by James, posted in Uncategorized

Merry Christmas from me, Super D and the rest of the family. I pray your day will be filled with family and the love of Christ. May the great gift of the Savior’s birth be on your mind and hearts as the wrapping paper flies.

God bless you and yours on this glorious day.

And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. – Luke 2:8‭-‬11

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 Look of Knowledge

by James, posted in Victories

I took Super D with me Saturday to a farm auction. I hated to take him along, but Darlene was going shopping with the other boys, so Daniel tagged along with me. Aside from being a little chilly, it was a good day. Daniel really did well considering he spent the day in his wheelchair.

For me, outings with Daniel can be somewhat frustrating. Not because of him, but because of others. People like to stare and if he gets to hollering, they like to give disapproving looks. This is worse if it scares them, which, honestly, is sometimes quite funny for me.

I have often told myself I should take advantage of these stares. I should go introduce Daniel and explain what we are facing and the hope we have. What better way to share the Gospel than through this wonderful little boy.

Saturday, unfortunately, I was not in the mood to deal with people. Now that is not an excuse. My mood should not dictate if I visit with strangers, but it does.

I kick myself that I missed a great opportunity to visit with a young father and his two boys. The boys were watching Daniel, and imitating his excitement and flapping. I don’t believe these boys were being mean, I think they thought it was a game.

Their father was horrified. He tried to shut them down without looking. You could see it was a very awkward moment for him.

Perhaps I would have made it worse if I had talked to them. However, I will never know because I didn’t take the time to share Super D’s story.

I did have a conversation with a gentleman Saturday. Some people stare out of disgust and others out of curiosity. This gentleman watched Daniel because he knew. I can always tell those who are walking the same path we are. It might be a parent or, in this case, a grandparent. They always have a different look. It is one of compassion and grace.

This gentleman has a nine year old grandson who is autistic. I had a chance to have a good conversation with a concerned, loving grandfather. It is in those moments where we can all find strength. For me, it was the compassion of a stranger who is on the same journey as us. For him, I believe it was a chance to share a little hope they have found as his grandson has begun to speak.

Arrogant foes are attacking me, O God; ruthless people are trying to kill me—they have no regard for you.
But you, Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness.
Turn to me and have mercy on me; show your strength in behalf of your servant – Psalm 86: 14-16