I have wanted to write this story since it happened, but then life got too busy and the emotion of the experience dissipated. As weeks passed, it was like, as my long-time friend, John, used to say, "It's out of the moment." Circumstances over the last month make it important for me to tell the story now because it marks a big change in Ben.
Christmas Eve last year, we attended the family service at our church and had an absolute wonderful time. Since I was pregnant with Logan, we have attended services three times at this church - Logan and Sean's baptism and last Christmas. To our credit, before Ben was born, we were active participants and luckily, church members remember us from then.
So this year, I had high expectations for the Christmas Eve service. As usual those expectations were thrown out the window as soon as we sat down in our pew. Ben was very noisy, so I took him to the back of the church in his Convaid chair. Using eye gaze, he lead me down the stairs to the basement of the church. At this point I was carrying Ben because the stairs prevented us from using the chair.
Leave it to Ben to find the room with children. They were waiting for their appointed time to perform in the pageant. I recognized one mom. She was friendly toward me, but it was obvious that everyone was getting ready for their performance.
Immediately, Ben saw cookies and drinks and made himself at home at the table. Ben sat beautifully on the chair and ate two cookies and drank a juice box. He was very excited to be a part of these festivities. Although I felt a little uncomfortable busting in on this group, I was delighted that Ben was enjoying himself. I can live with uneasiness if it will make my children happy.
Everyone was getting ready to leave the room, the excitement was building for the children and I knew we should get out of there. I placed Ben on the floor in a sitting position so I could clean up the crumbs from his snack. Before I could react, Ben took a dive to the floor, hitting his chin exactly in the same place he has hit it every time he has this falling forward seizure. I exclaimed, "Damn!" - obviously forgetting where I was. Fortunately, no one noticed anything.
I scooped Ben up and ran/walked to the sanctuary, put Ben in his chair and got to where Ryan and the kids were sitting. I quietly showed Ryan what happened. I was shaken and Ryan was visibly upset too. At this point, Ben was bleeding profusely from his chin. Ryan made the decision to leave immediately. I grabbed the kids, and we were out of there in seconds.
We determined Ben did not need stitches or glue, just a good cleaning and antibiotic ointment. I broke down in the car. It was Christmas Eve and because emotions build over months, the enormity of our situation came crashing down on me at that moment and tears were my release. I was tired of the seizures disrupting Ben's life, his progress and simple things like attending church.
That was December 24, and Ben has not had another one of those seizures since that day. Let me be clear, Ben is still on seizure medicine and if we took him off, he'd have seizures. We were seeing "extra" seizures that the medication was not stopping. Since the start of them this summer and fall, Ben's physical progress had stopped and, in some ways, diminished. Our hopes for him walking, even with a walker, were looking grim.
Last week, I started putting it all together. When nothing happened at the EEG, I thought back to when I last saw Ben have one of the falling forward seizures. I could not remember anything after the Christmas Eve event. His teachers and private therapists had not mentioned observing any either. Then things began to click into place - Ben has been a crazy, energized little bunny these last several weeks. Nothing tires him out. He has been swimming, walking with his walker at the mall, museums, YMCA - and still going full-force at 11pm at night.
Not sure why the seizures stopped on that Christmas Eve. Perhaps science has the answer, but I will chalk it up to answered prayers.
Christmas Eve last year, we attended the family service at our church and had an absolute wonderful time. Since I was pregnant with Logan, we have attended services three times at this church - Logan and Sean's baptism and last Christmas. To our credit, before Ben was born, we were active participants and luckily, church members remember us from then.
So this year, I had high expectations for the Christmas Eve service. As usual those expectations were thrown out the window as soon as we sat down in our pew. Ben was very noisy, so I took him to the back of the church in his Convaid chair. Using eye gaze, he lead me down the stairs to the basement of the church. At this point I was carrying Ben because the stairs prevented us from using the chair.
Leave it to Ben to find the room with children. They were waiting for their appointed time to perform in the pageant. I recognized one mom. She was friendly toward me, but it was obvious that everyone was getting ready for their performance.
Immediately, Ben saw cookies and drinks and made himself at home at the table. Ben sat beautifully on the chair and ate two cookies and drank a juice box. He was very excited to be a part of these festivities. Although I felt a little uncomfortable busting in on this group, I was delighted that Ben was enjoying himself. I can live with uneasiness if it will make my children happy.
Everyone was getting ready to leave the room, the excitement was building for the children and I knew we should get out of there. I placed Ben on the floor in a sitting position so I could clean up the crumbs from his snack. Before I could react, Ben took a dive to the floor, hitting his chin exactly in the same place he has hit it every time he has this falling forward seizure. I exclaimed, "Damn!" - obviously forgetting where I was. Fortunately, no one noticed anything.
I scooped Ben up and ran/walked to the sanctuary, put Ben in his chair and got to where Ryan and the kids were sitting. I quietly showed Ryan what happened. I was shaken and Ryan was visibly upset too. At this point, Ben was bleeding profusely from his chin. Ryan made the decision to leave immediately. I grabbed the kids, and we were out of there in seconds.
We determined Ben did not need stitches or glue, just a good cleaning and antibiotic ointment. I broke down in the car. It was Christmas Eve and because emotions build over months, the enormity of our situation came crashing down on me at that moment and tears were my release. I was tired of the seizures disrupting Ben's life, his progress and simple things like attending church.
That was December 24, and Ben has not had another one of those seizures since that day. Let me be clear, Ben is still on seizure medicine and if we took him off, he'd have seizures. We were seeing "extra" seizures that the medication was not stopping. Since the start of them this summer and fall, Ben's physical progress had stopped and, in some ways, diminished. Our hopes for him walking, even with a walker, were looking grim.
Last week, I started putting it all together. When nothing happened at the EEG, I thought back to when I last saw Ben have one of the falling forward seizures. I could not remember anything after the Christmas Eve event. His teachers and private therapists had not mentioned observing any either. Then things began to click into place - Ben has been a crazy, energized little bunny these last several weeks. Nothing tires him out. He has been swimming, walking with his walker at the mall, museums, YMCA - and still going full-force at 11pm at night.
Not sure why the seizures stopped on that Christmas Eve. Perhaps science has the answer, but I will chalk it up to answered prayers.
I hear you! There are days that bring things into focus and ones that overwhelm, just as there are ones of happiness and new good things.
ReplyDeleteSome of what you wrote really hits home for me. I too have learned to overcome uneasiness and continue with something off the "normal" radar that's making our son happy. Hey, it's not hurting anyone, why not?
I've had times when I was tired of aspects of Autism and developmental delays getting in the way of simple, normal things, like going to the grocery store, taking them out to the playground, or talking about my kids with other moms.
Sending you good thoughts for a healthy year!