There is a book written by the father of a little girl who has bilateral perisylvian polymicrogyria, it is called Schuyler’s Monster. In the book he talks about their visit to see Dr. Dobyn’s. Both he and his wife were reeling from the diagnosis of their daughter, they just couldn’t get passed it. They were sure they were going to go see Dobyn’s and be told the diagnosis was a mistake and that their little girl was going to get better. What they had was hope. I think I did too when we left for Seattle. The thing about hope is that it is easily crushed. Quite frankly, I felt crushed after seeing Dr. Dobyn’s. I still do. It’s been four days now and I am still trying to process what happened. I spent months reading and learning about the brain. I focused on that right side because that is where Jackson’s damage is. I read countless medical studies, took notes, jotted down questions, and had a good understanding of what the right side of the brain can and cannot do. I went into that appointment armed with knowledge and 3 pages of questions. Within minutes those questions and everything I have learned over the last few months no longer mattered. I never even asked him one question on my list.
When we were given Jackson’s diagnosis the only good thing was that the damage was only on one side of the brain, unilateral. Bilateral, both sides, is bad. Knowing that it was just one side was my saving grace. If I have a bad day I think “Well, I am at least thankful that there is only damage on one side.” It keeps me going sometimes. Four days ago Dr. Dobyn’s told us that he suspects there is damage to the left side also. Bilateral. Hopes crushed. No more saving grace. More diagnosis. More shit to deal with.
So to give you the full picture here is how our appointment went. First of all, Seattle Children’s is huge! Kevin said it was like Disneyworld because the parking areas were named the Whale Parking, the Giraffe Parking, etc. They even give you your own badges with your picture on them to wear while you are there. It was very big, very organized and to me, kind of a calming place. I know this is weird but I actually felt happy there because there weren’t any “normal” children. There were all these kids with special needs. It made me feel kind of at home. Of course we waited an hour and a half before we got to see Dr. Dobyn’s, so it was your typical medical office visit. Dr. Dobyn’s seemed a little unorganized to me at first. He spent a good 5 minutes looking for his pen, which was clipped to his shirt. Then he didn’t have all the test results I had sent over so he spent time getting his assistants to get them. He kept asking questions I felt he should know, like how old Jackson was, what his diagnosis was, and a general history which I had already typed up and mailed to him (per his office’s request). I was a little frustrated. All this anticipation and work to get the appointment and then he wasn’t prepared. I should also mention that after 4 ½ hours of being in his car seat from the night before, sleeping in a new bed with his parents, being woke up at 6:30 a.m., being put back in the car seat, a 50 minute drive in Seattle rush hour traffic and an hour and a half wait in the reception area, Jackson was done with it all. He was exhausted, out of his routine, and mad. So he does what he usually does to let us know he is unhappy, he screams. So there we were waiting for Dobyn’s to get organized with a screaming kid in the room and I was a beyond frustrated. Finally, Dobyn’s got around to looking Jackson over, playing with his body and moving it around a little, and started asking some good questions. After looking at Jackson’s MRI and doing some research on seizures, Dr. Dobyn’s told us that just looking at Jackson and his features led him to believe Jackson was bilateral, not unilateral. He said a unilateral kid would be walking and talking by now. Although he couldn’t see any damage on the MRI to the left side, he said it could be in the layers of his brain. He also thought that Jackson’s seizures could be contributing to his developmental delay. He talked about some brain surgery options that may be considered down the line to help with the seizures but suggested we do whatever we can to get the seizures better under control through medication. He did say that Jackson’s head size was normal, which was a good sign. Apparently some kids with PMG have either a small or large head which is an indicator of problems. Dr. Dobyn’s himself was confused by Jackson. He wasn’t sure why Jackson hadn’t developed more and said that there was something going on that he just couldn’t see. So instead of some answers or clues, which I thought we were going to get, we got more unanswered questions, more mystery. He accepted Jackson into his study, told us to work with our neurologist and get aggressive with these seizures, asked us to come back in a few months and if the seizures aren’t better by then, then we would come back and see him and see the epilepsy specialists at Seattle Children’s. As we left he said “There’s definitely someone knocking around in his head, we just have to figure out how to get him out.” I liked that. I think Dr. Dobyn’s is just as interested as us in finding out what is happening in Jackson’s head, and I’m glad we have such a knowledgeable doctor ready to work with us. As we got in the car and drove away from the hospital Kevin said something to the effect that he thought that the appointment went well and was good news, I on the other hand, burst into tears. It was good in the fact that we now have more resources for Jackson and I have wanted to see an epilepsy specialist and now we may get that chance. But it was very hard for me to hear that there may be damage on that left side. Dr. Dobyn’s told us there was a good chance he will be mentally impaired and need care for the rest of his life. That kills me. I want Jackson to have a shot at life. Just simple things like running and playing, going to school, having friends, having the chance to set goals for himself and the opportunity to achieve them. I don’t think it’s fair that he may not get a chance that so many other kids get. I just want what every parent wants for their child and for some reason my baby doesn’t get an equal chance. And it hurts me in a way I can’t even explain with words. So much came from this appointment and it has kind of put me in a tailspin. I feel like we got the diagnosis all over again and now I have to break through all this sadness, fear, frustration, anger and grief again and I just don’t have the energy for it. Right now I just feel drained and hurt. I want to crawl in bed and feel sorry for myself for a few days. Then I look at Jackson and see how happy he is, how cute he is, how he makes me laugh every day, how I love him so much it hurts, and I know that I just have to pick myself back up, love on my little boy, take care of him, and make sure he doesn’t feel like there is anything wrong in his world. Basically I have to be a mom.
When Jackson had his overnight EEG in March at Sacred Heart they determined he wasn’t having seizures in his sleep, which is very good. However, the first night we were in Seattle sleeping with Jackson we discovered he is having seizures in his sleep. He had them every night we were in Seattle. This is very bad as it causes epileptic regression. Essentially this means that Jackson may take two steps forward developmentally, but with epileptic regression, he will take a step back. It will cause more damage to his brain which will hurt his ability to make progress. This was difficult for me to find out. Another good thing for Jackson turned into a bad thing.
After the appointment I emailed my sister an update (she’s on vacation). She emailed me back and told me that she had a dream the first night of her vacation that she and my Dad were talking about Jackson. For those of you who don’t know, my Dad died in May. She said that Dad told her Jackson was going to be ok. Alright, maybe it was just a dream, someone else’s dream, but if my Dad is sending me a message from wherever he may be, I’m going to hold on to that. I really need something to hold on to right now, and I know my Dad would never lie to me. If my Dad says Jackson will be ok, then he will. He will.