Hope is such a fleeting feeling. One second you're so filled with it and the next, you're deflated. When you feel for a moment that hope is gone, you turn a corner and are back on top of the Hope Roller coaster. The roller coaster that makes you feel naive when you have too much and like a martyr when you don't have enough.
Thursday was a 'top of the roller coaster' kind of day. We got him hooked up to the EEG and Luke did what he was supposed to do. He seized, a lot. He showed off every type of episode we questioned. He made sure it was quite clear why we were here and why we needed help.
Thursday night was rough, but it was felt purposeful and helpful for it to be so bad. I was actually relieved that it was a bad night. I knew that the toughness of it would provide answers. It was so nice for the silver lining to be right there, probes attached to his head wrapped in gauze. We were capturing this information to help Luke find some relief.
Still so hopeful.
Friday morning the roller coaster took us through the tunnel and upside-down. The doctors came in to share that things were as complicated in Luke's brain as we had suspected. So, Luke is hooked up to an EEG. These are the probes you see attached to his scalp which monitors his brain waves. We are here to monitor what Luke's brain looks like when it is seizing, to determine what is a seizure and what is not, and to determine where the seizure activity is coming from. Another thing we are looking at is Luke's brain when he is NOT seizing. Luke's brain waves have always been a little slower than typical. This is either the cause or the effect of his developmental delay. They go hand in hand. Other than that, Luke's "background", or his brain when it is not seizing, has up until now looked pretty good with only one area, the right frontal lobe that has seemed irritated.
This is where we went barreling downhill today. This is where we needed a barf bag.
Luke's 'background' today, his activity in his brain when he is not seizing, is not good. You know what, I am going to go ahead and say it is just plain bad. It is chaotic and irritated. This EEG was much worse than the one 20 months ago. Not one area like before, but. ALL areas are hot spots for potential seizures. ALL areas of his brain are firing abnormal activity, and they are firing off a lot. The doctor said they looked at the waves about 10 seconds at a time and 9 of the seconds had abnormal activity firing from parts of his brain. So it is going to be a lot harder for the epileptologist to determine the area that is causing the seizures because the background, the parts that are supposed to be normal and calm, are freaking out. The waters are very muddy.
But, even more telling about the abnormal EEG, is what it means concerning Luke's development. His brain is so chaotic, No wonder the child is regressing the way that he is. His brain is in a constant battle with itself. There are so many detours and road blocks that the normal development, language, walking, reasoning, is so beyond difficult to happen. This part, is most likely not fixed with the surgery. The surgery is to help with the seizures, but this background, this chaos is going to be a different battle all together.
Our hope was for a clear answer, a clear problem area that could be removed and the rest of the brain could get back to normal. That one bad part of the brain that was ruining the party for everyone else, that idea seemed to whizz past us and around the corner out of sight. That's why there are seat belts on roller coasters. Even when you can see the turn ahead, even when you know it's coming, it still sends takes your breath away, it sends you flying.
The conversation with the doctors, getting the 'bad news' broken to us, sent mom and I flying all the way back to 'that day'. 'That day', three years ago, when we learned what TS was. 'That day' we learned TS was now our life and the life of our baby. That day, however, was also full of hope. TS is a spectrum disease. There was no way to know 'what Luke would be like'. The doctors had no way of determining how severe his case was. So, I decided to take it one day at a time.
That EEG reading we saw today, took me out of the present and sent me flying back to that day we received the diagnosis. I went back in time to that day. I broke the bad news to me back then. A new mommy, scared and ignorant and innocent. I told me what the next years would hold. The meds, the therapy, the roller coaster of hope and disappointment. I told me that my baby would be lying in the same kind of crib three years later. Still unable to talk, unable to walk, unable to feed himself.
I told me what TS was really like.
So I went to the dark side for a visit today. I mourned the loss of normal for the 500th time. I let myself deflate. I let myself play the narrative out in my mind of what things will look like when Luke gets bigger and stronger. I went there even though I work so hard to stay in the moment because every once and a while, you have to. The pixie dust only gets you through so much. Sometimes, you just have to brace yourself for the drop and free fall.
And then it was time to cut that crap out. I caught my breath and ordered my cart to get it's butt back up the hill.
Our story didn't end that day of diagnosis, three years ago, and it isn't ending today. Our story is not over. You already know that I hate weird indie movies that end abruptly with no answers. No way, not happening here. It is still early in this odyssey. Hope is not gone. It is not over for us. Surgery, while complex and complicated, is still a possibility. An hour ago we added 20 more probes (that's a total of 50) on to Luke's head because the doctor already feels she is getting closer to narrowing it down a few areas that could be the culprit for the most dangerous seizures he has.
The fight continues. But there is also a moment to stop and process the reality of the narrative. It is time to stop the fight for a second and let in acceptance and peace for what will be and what is. This, right now, where we are, this is meant for us. Complete healing may not be in our cards. It may not be how this story is supposed to unfold. But that won't make our story a tragedy. It doesn't make us get off the roller coaster. Because, while we will still get answers and a plan from this trip, we have also gotten the unexpected. An extended family, warriors, and team who is ready to love and accept Luke no matter what his EEG looks like. Luke is still the main character in this crazy fairy tale and no matter what happens he is still our hero.
I know we are not alone. Your prayers and gifts and messages and care packages and texts and cards and calls are dragging my cart back up the hill. I know that our goal now is the same as it was before we got here. i know you know this is not how this Jacked-up Fairy Tale is going to end. I know we won't stop telling the story until we get to our own version of Happily Ever After.
Mother of two amazing little boys, one who just happens to be a TS warrior.