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Having Samuel for One More Day

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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.   Years ago, he woul
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Samuel's Ministry on Earth

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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 have seizure after seizure while trying to accomplish this task.
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In the service of your fellow beings

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, read
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When Samuel Loses His Voice

       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 the other three kids, doing dishes, feeding the dogs, etc., when suddenly I heard a c
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Just Another Peaceful Sunday Morning

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 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 ·          Announce that it is time for mom to eat it ·          Salt thoroughly with the tears of the children now realizing their old, abandoned
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Autism and Marriage

 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 three other
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Samuel the Superhero

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  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.   Like my mother said, if someon
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