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 crash in the dining room where Samuel was.  I looked in to discover that our baby had climbed on the table, spilled Samuel’s water all over Samuel, and spilled Samuel’s eggs all over the floor, which was now a feast for the dogs.  Samuel in the meantime, was still staring blankly, soaking wet, at a table with no plate or food on it.  He was helpless, unable to ward off a baby, or even cry out for help. 

    The most heartbreaking moment in this entire episode was when I looked into his eyes and I could see sorrow.  A sorrow he was unable to express, as his seizures were so bad that not only could he not speak, he couldn’t even cry.  After getting him cleaned up, I held him close and cried for both of us.

    Every time Samuel goes through a period of time where his seizures take away his voice, it is not easy to recognize my son.  He goes from hopping and running around joyfully, to sitting quietly, forgotten, in the corner.  When he needs something, he will come up to us, walking slowly, constantly shaking, and stare at us with eyes desperate to communicate, but unable to.  Often, it will take him several minutes to get out one word, or even give us a thumbs up as we try to go through everything he may be seeking.  As parents this isn’t easy, purely because we also have three other kids, work, and a household to take care of.  Often, we can’t sit for 15 minutes while we wait for Samuel to say four words to tell us what he’s looking for.  Frequently, Samuel ends up being left alone with no voice.

    Despite all of this, there are moments where if you look very carefully, you can still see my Samuel.  My wife told me last night that she now has a goal to make Samuel smile every day, even when he’s suffering through these seizures.  My wife will be so patient and make a huge effort.  She will sing silly songs, or pretend that the dog is saying something funny, and every now and then, despite him shaking, and staring absently into a void, we will see a smile come across his face, and for the briefest of moments, we will see our Samuel again.  A flicker of light to remind us that our son is still in there.

    It’s true that nothing worth having comes easy.  In the midst of 1400 seizures, nothing with Samuel is easy…which is probably why that little smile is worth so much.

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