Having Samuel for One More Day

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 would have a bad day or week in the midst of several weeks or even months of no seizures.  Now, he has a good day or week in the midst of several weeks or months where he is having hundreds of seizures every day.  This pattern is getting worse and worse as time goes on.

Fortunately, this last week was one of those rare good weeks.  He went several days with no seizures whatsoever, and several more with only a couple seizures here and there. 

This morning, that week of cognition came to an abrupt end.  As I was getting breakfast ready, Samuel sat on the kitchen counter to help me cook his eggs.  After the eggs were done and I moved the pan off the hot stove, Samuel had a drop seizure and fell off the counter.  Initially, it didn’t look like too bad of a fall, and, given that Samuel has situations like these all the time, I was relatively unconcerned.  After a few minutes, however, it was clear that he was more hurt than usual.

When Samuel gets badly injured, often the trauma of the injury makes his seizures worse.   His autism already makes it difficult for him to communicate what is wrong in situations like these, but when he’s also having seizure after seizure, it’s nearly impossible for him to inform us what is wrong.  This morning, he went through a cycle of screaming for a moment, trying to comfort himself through stimming by clapping his hands, screaming in pain from clapping his hands, then lapsing into several seizures, only to have this process repeated over and over again.

Eventually I had consent to the fact that I needed to figure out what was hurting Samuel without any help on his part.  After several minutes, I finally determined that his hand was hurting, and upon closer inspection, I saw a severe burn on his left hand.  While he was on the counter, when he had his drop seizure, he must have leaned his hand on the hot stove before falling off the counter.  Then, every time he tried to comfort himself through stimming, he would clap his hands, slapping his burned hand over and over again.

Upon learning what was wrong, I was able to begin treating his injury, and after about thirty minutes of screaming and seizures, Samuel began settling down.  His hand was still hurting him, but he was at least calm enough to let me begin working on the needs of our other three children.

This morning was one that was filled with grief for me.  Obviously, Samuel’s hand getting burned was a difficult situation, but what was more difficult is the fact that yesterday my beautiful son was full of life and joy and seizure free, and today he’s back to having hundreds of seizures, drooling and incapacitated. 

This cycle of grief happens over and over in our home, and while it causes a great deal of distress and pain for me, there is so much joy that is interwoven into that grief.  I love and cherish each of my children, but my other three kids are the same person every day, their changes as they grow up happening so slowly, I often take the time I have with them for granted.  With Samuel, this is not the case.  We know that every day we have left with him is a gift, and that perspective makes every day with him full of joy. 

What brings even more joy is that on the days where he isn’t having seizures, and I see that bright and energetic boy back with me, it is like I am a parent who had lost his child, and I get to see him again for one more day.