A Father, His Family, and His Special Needs Son

  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 ...