A Father, His Family, and His Special Needs Son

  The family with Samuel in the hospital after surgery      The other day I was listening to a song by Linkin Park and began to weep at a lyric: “Sometimes bad things take the place where good things go.”     It’s been a while since my last post. Over the past year, we’ve watched Samuel continue to decline. We’ve spent literal months in the hospital and had brief moments of hope, only to have them dashed again by despair.    While we continue to fight for our son every day, we recognize it’s a ticking clock we are fighting against.      Our most recent hospital trip was to the operating room so Samuel could get a feeding tube surgically inserted into his stomach. This feeding tube is necessary because he no longer has the capability of ingesting enough nutrition or medicine orally, and therefore is entirely reliant on the tube for sustenance.      Before we went to the hospital to have this surgery done, my wife laid ...

Every week on Wednesdays I take one of my children on a date. This week, my 5-year-old daughter Lauren and I decided to go see the movie “The King of Kings” in theaters. As we watched the show, I couldn’t stop thinking about my Samuel.    The movie depicted the life and ministry of Jesus. He made a blind man see, a lame man walk, helped the deaf to hear and even raised a man from the dead.    I saw these miracles and couldn’t help but wonder where the miracle was for MY son? As the show went on, it showed Jesus praying in Gethsemane, being tortured, and inevitably being killed on the cross. It showed His mother Mary watching as he died.    As I saw this mother watching her son die, I wept as I thought about my perfect son, and the slow decline we’ve had to helplessly stand by and watch. Many years ago, my wife and I had the opportunity of going to Jerusalem and visiting all the places Jesus walked. We saw where he was born, where he was raised, where he tau...

  A few days ago, my three-year-old asked for some fruit.   I willingly gave him one piece of fruit; however, he was not content with one piece.   I denied him any additional fruit, and immediately a battle started.   He was bitter and resentful, and threw a tantrum before me. He yelled at me that one piece of fruit wasn’t enough.   He wanted more.   What should have been a piece of fruit he received with joy and gratitude turned into something full of bitterness and resentment, and for a while afterward, he was angry at me, his father, for only giving him one piece of fruit instead of more. Any parent of a toddler has been in this situation before.   Toddlers are wonderful, but they lack their parents’ foresight, and they often start a battle over things their parents can see are in their best interest. Last week Samuel had a few days where he was completely cognitive again.   I could see that the fog had lifted from his mind, and we got to h...

One of the most famous musical masterpieces ever written is Handel’s Messiah, with the most famous portion of it being the Hallelujah chorus.  Sang in triumph and victory, they repeat the word Hallelujah over and over. It makes sense that this word would be sung in triumph, given that the definition of Hallelujah is “God be Praised.” For Christmas this year, we watched the movie “It’s a Wonderful Life” as a family.  This classic film follows the story of George Bailey, a man who thought he had hit rock bottom because of all the bad things that had happened to him over the years, he often comments in despair over the cold and broken home he lives in.  He seemingly faced disappointment after disappointment. While the pain and stress of his situation is raining down on him, George’s son asks “Dad, how do you spell Hallelujah?” There have been times in my life where I’ve looked at my cold and broken life, and have been frustrated by my perceived misfortunes.  A few years...

  In one of my favorite scriptures, it says “Weeping may endure for a night…” Recently, our four kids all attended swim class.   This is something they do on a weekly basis, and each week they get an assessment of what level out of ten they are in their swim lessons.   Jonathan, my seven-year-old, moved up from level 8 to level 9.   Lauren, my five-year-old, moved up from level 7 to level 8.   Even Andrew, my two-year-old, is progressing really well.   After Samuel’s assessment, he moved from a level 4 down to level 3. That night, I wept. This was yet another moment of grief for us, as we watch our son’s constant seizures cause decline in his abilities.   Each week we witness more examples of his decline, and each week we have to go through the grieving process once again as his seizures slowly get worse and worse.                 The following morning, we went to a fa...

When Jesus was on the Earth, his disciples asked him “How can we know the way?”       Every week, instead of attending Sunday school classes, Samuel takes me to each picture of Jesus throughout our church building and describes those pictures to me. He’ll say things like “Jesus is blessing his disciple!” Or “Jesus is getting baptized!” This is my favorite thing I get to do every week, however, it means I don’t get to attend some great Sunday school classes, all teaching sermons on kindness or love, or obedience.      This week, we walked by a group of adults talking in the hallway, when Samuel stopped to point to a picture of Jesus. As he did so, all the adults stopped speaking and turned toward my son. Samuel, in his cherubic voice, pointed to a simple portrait of Jesus, and said “Just Jesus.” One of the adults looked at Samuel and said “all we need is Jesus?” Samuel gave them all a thumbs up and said “that’s right!” Then he walked through the crowd ...

A commonly heard idea among parents who have lost their children is that they would give anything to just have their child again for one more day.   As Samuel’s cognition continues to rapidly decline, we have come to terms with the fact that we are going to outlive Samuel, and our entire focus in life right now is to enjoy the time we have with him as much as possible, recognizing that each day may be the last. I always tell people that there is a duality to Samuel.   When he isn’t having seizures, he is energetic, loves to run around and be chased, and he loves to dance and sing to music.   When Samuel is having lots of seizures, he becomes docile, often just wanting to sit and look at books, and all that energy is gone.   Often, when he is having his seizures, it feels like I’ve lost my son. Throughout the years, we have never been able to get a clear understanding of what is causing him to lapse into hundreds of seizures a day versus when he is seizure free. ...

Samuel before his cognitive decline        When Samuel was born, I had grand visions and ambitions of all the things I wanted to teach him.   He was going to be a world-famous pianist, an NBA basketball player, a multi-billion-dollar entrepreneur, and the most articulate scholar.   Any progress he made in life filled me with such pride as I watched him get better and better at everything he did.      This last Sunday, our special angel friends in the library at our Church building brought some wooden puzzles for Samuel to play with.   These were puzzles designed for toddlers, where you pick up the firetruck and put it in the spot where a firetruck fits.   As always, our friends’ faces lit up as they watched Samuel struggle to complete this puzzle.   Each time Samuel found the right spot for a piece, his mouth would open wide in delight and he would jump and flap his hands.   Our friends were so patient as Samuel would ...

Although too often, I choose not to do this, I am never happier than when I am doing what I can to help someone else in need. It's no wonder this is the case, given there's a scripture that says, "When ye are in the service of your fellow beings, ye are only in the service of your God."    On Sundays, it is very difficult for Samuel to sit in Sunday school.  Being neurodivergent, he learns in a different way and at a different pace than other children his age, especially on days where he is having a higher volume of seizures.  Because of this, we have developed our own way of teaching him during Sunday school.  I take him through the halls and show him all the paintings of Jesus and describe what is happening in the painting.  The repetitive simplicity of this really appeals to him and he's always excited to find all the paintings of Jesus throughout the building. A couple Sundays ago, we wandered into the church's library, where a volunteer couple stood, r...

       There’s an old quote by Theodore Roosevelt that says “Nothing worth having comes easy.”  I think any parent would agree there are few things in this world that quote applies to more than having children.      This week, Samuel has had nearly 1400 seizures.   We aren’t counting seizures while he sleeps, which means he has more than one seizure every minute of every hour he’s awake.   This isn’t the first time he’s gotten this bad, but it is always heartbreaking to witness.      This morning, I sat Samuel down at the table for his breakfast.   Without help, nothing is easy for him.   Eating two eggs will take all his concentration and around 40 minutes to accomplish.   The duration of breakfast, he will be silently staring at his plate, enduring seizure after seizure while he tries to eat a small amount of food in between each.   After I got him all set, I went about my other tasks of feeding t...

 Our church had a special broadcast for us to watch this Sunday, designed to help our home become a place of spirituality and peace.  Standing in the kitchen at 11 0’clock, I was blown away at how tranquil the house was thanks to that broadcast. First we had my wife, beautiful as ever, her hair a knotted mess as she rocked the latest “still in pajamas looking more exhausted than a teenager on Monday morning” look.  The baby made sure she got at least a couple hours of beauty sleep the night before, and now, although she had been awake for some time, she is just sitting down to eat, being very picky about her breakfast, as it always has to go through a rigorous curing process.   ·          First, it has to appear to be the kids’ breakfast.   ·          Let sit for at least two hours, ensuring it has been fully abandoned by said kids ·        ...

 One of my church leaders once said that the most important word in all the scriptures is the word "Remember."  On the surface, this seems like a fairly trivial word, but looking more closely, I am convinced he is correct. Raising four children is difficult.  I don't know a parent out there who can claim that raising so many children, regardless of special needs, is a simple task.  The special needs Samuel has just adds to it.  On the best of days, the additional work with Samuel involves cleaning up his diaper, getting him to take his medicine twice a day (he has 24 pills he has to take twice), hooking him up to his vagal nerve stimulator twice a day for 25 minutes each time, hooking him up to his neurofeedback every other day, a process which involves cleaning his hair, putting an adhesive gel on his head, sticking a series of electrodes on his head, then having him watch a computer screen in complete silence (which, as you can imagine, is pretty tricky with t...

  My mom used to always say “It’s amazing what someone can do when they have to.” My Son Samuel is a superhero.   He was diagnosed with Epilepsy when he was three years old.   There are five major types of seizures someone with epilepsy will typically have that range from them looking like they are just staring absentmindedly, all the way to a Tonic-clonic seizure, more commonly known as a grand-mal seizure, where they are full on convulsing on the ground.   Samuel experiences every one of these five types, sometimes all in one day.   He can have as few as six seizures one week, and then as many as 400 seizures the following week, and has even gone months at a time having one continuous seizure.   We have tried every natural and traditional intervention we have ever found, with nothing that has made a lasting impact on this condition.   In other words, this is something Samuel has to go through. Samuel is not a superhero because he endures seizures...

There’s a leader in my Church who once said “You can have what you want, or you can have something better.” It was the spring, the temperature outside was perfect, and some dear friends of ours had invited us and our family to an activity where our children would do a bunch of fun activities to experience a little bit of Ukrainian culture.  I had been very excited about this event for some time leading up to it, and the day had finally come. I spent the entire event in my minivan with Samuel throwing one of his classic temper tantrums in the back seat.                 Instead of watching my children learn Ukrainian words, eat Ukrainian food, and listen to Ukrainian music, all I experienced was my screaming 7-year-old.  This was one of many, many experiences where we just couldn’t participate in an event the way we were hoping.  Once again, the crowds, the noise, and the atmosphe...

  Even though he is eight years old, my son Samuel, who has autism and epilepsy, needs a baby monitor beside him through the night.   This monitor is not here to alert us to when he wakes up, but to alert us to when he has a grand mal seizure, and is in danger of choking to death on his own saliva and bile.   My job, when I hear a noise akin to the Nazgul from Lord of the Rings on the monitor, is to jump out of bed, run to his room, and make sure he is propped up or on his side and that his mouth is clear of anything he can choke on.   I then hold my convulsing son until the seizure has passed.   Typically, these only happen every month or two, but they have begun getting more frequent.   Our 6-year old, Jonathan, was born with a weak respiratory system.   The day he was born, his lungs needed to be sucked out and he had trouble breathing.   Every doctor we’ve seen, traditional and holistic, has tried to tell us that his throat and lungs are fin...

Today I was watching a movie during which the main character asks his father, “was life this hard for you?” The father answered, “yes! I wouldn’t have had it any other way!” Between taking care of kids, growing my businesses, and working with 8 different medical professionals to help my special needs son, how many times have I thought about just how hard life is? I can only hope to have the faith of this father, and endure with such strength and gratitude,  so that when my child asks, “Dad, was life this hard for you?” I can respond, “Yes! I wouldn’t have had it any other way!” All of us, in any circumstance have a Father in Heaven who we can ask these words to. We had a Savior in Gethsemane, kneel down and go through every experience necessary, so that when we ask “Was life this hard for you?” He can respond, “Yes! I wouldn't have it any other way!  For I AM the way.”

It’s 6:30am. I have one task to accomplish. I need to meal plan for the week. It shouldn’t take longer than 5-10 minutes.        I sit down to meal plan when suddenly my one-year-old, Andrew, falls down and hits his head. I pick him up and comfort him, then put him in his high chair and ask my daughter, Lauren, to feed him.       I sit down again to meal plan, when my special needs son Samuel, comes up to me, having pooped in his diaper and needs to be cleaned up. After taking care of him and setting him on his way, I look over and Lauren has spilled the food I asked her to feed Andrew. I clean up the food, finish feeding Andrew, and get him down from his high chair.        I sit down again to meal plan, when my middle child, Jonathan, decides to make his own oatmeal. Andrew sees the opportunity he’s been waiting for, and sprints to the oatmeal container with a toddler speed reserved only for moments where he k...