Shortly before Christmas, Reuben's seizures took a twist. They often do this every 3 to 6 months and we arrive at our new normal. This time the new normal is hundreds of seizures every day...heading for a thousand a day, but probably not quite there and we are not even really trying to keep track at this point. They are nearly continuous all day and all night long. However, they are for the most part short partial seizures where he is still conscious and only loses control of a part of his brain/body. Then there are a few drop seizures and few generalized/tonic-clonic seizures scattered in the mix.
What I have shared is that every night when I take Reuben up for bed, we read a book and then I pronounce a blessing over him and then we sing. The blessing is the same every night.
May the Lord bless you and keep you.
May the Lord make his face to shine upon you and be gracious to you.
May the Lord lift his countenance upon you and give you peace.
Some nights it almost seems wrong to pray such a blessing over him when he has been seizing all day long and is periodically seizing while I am blessing him. But then again, it doesn't seem wrong and in fact God has fulfilled the statements in the blessing.
The things mentioned in the prayer above are not about circumstances. They are about a state of being. You can be in difficult circumstances and still experience God's face shining on you and Him being gracious to you. You can have peace, even when everything seems to be going wrong.
This is indeed what I see in Reuben. By this point in his life (prior to this new normal pattern) he had experienced thousands of seizures. Now he is racking them up really fast. And yet, he is still the personable Reuben we all know and love. He keeps getting hit over and over again and he just keeps getting back up and picking up where he left off. Reading a book with him his head will droop down and his lips will quiver for a few seconds and then his head will pop up and he will point at the page and say something about it and we will continue on. Walking around the house, he will just lock up and not be able to move his feet, so you just hold him until he "is back" and then you keep walking. No fussing, no complaining...just get back up and keep going.
Over the past week Reuben has had a few drop seizures that have landed awkwardly and even with his helmet on, have still managed to draw blood on his jaw line. Nothing too serious that a little ice, some tylenol and a bandage could not handle. They hurt and he would cry a bit and then be going again.
This morning it was a bit tougher...he didn't just get back up and keep walking...at least not right away. Shortly after breakfast one of the drop seizures hit and Reuben fell forward to the floor totally limp. His chin took the worst of it. The first glance told us we were not going to handle this one at home. Luckily Leah was able to cover the home-front so I could drive while Andrea sat in the back with Reuben.
Reuben was a champ in the triage area of the ER. Holding out his arm for checking his blood pressure, holding out his finger for the pulse-oximeter. They applied numbing cream and got us into a room to wait for that to take effect before coming in to take a closer look. So, Reuben and Andrea sat on the bed reading books and taking selfies...including a selfie video where he has a partial seizure during the video and is actually laughing at himself as he sees himself having the seizure on the screen.
Reuben did great as they put in two internal stitches and seven external stitches. That numbing cream is pretty amazing, he didn't even flinch while the Dr. did the stitches. She actually tried to do most of them while he was having a partial seizure so he would not be aware of it. After they were done, we asked Reuben if he was ready to go home and his response was "No". He was having a fine morning hanging out with Mom and Dad at the hospital. We came back home and made sure he always had someone close to him while he read books, played on his iPad and watched some of his videos on the computer.
There was some crying after it happened because it just plain out hurts to hit the floor face first with no muscle control or awareness to slow or break your fall, just face first onto the floor. But after that, Reuben was just back to his normal self. So no, Reuben's circumstances are not great, but Reuben does appear to have the peace of God surrounding him.
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