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.
"My horoscope warned me about traveling in September. I'm sorry. This is my fault. Scorpios and travel right now, they just don't mix."
-Patty Smith (Mom/ Nana)
Some repercussions of mom's bad universal juju would be a fuel tank blowing up on Interstate 65S as we traveled to the airport. Another example would be that I got tagged through security and when they gave me my bags back, they did not give me my laptop. (I later heard, "Would the idiot who left their laptop in security please return to get it.") But here is why it is important to travel with mom, even when the stars tell her not to. Everything is a little more complicated, but everything is a little more fun. How could anyone say that changing the diaper of a giant 3 year old in an airplane bathroom with a "changing table" that was literally a leftover tray table that they installed over the toilet, how could that, end with peeing your own pants laughing? I felt like Chris Farley in Tommy Boy. People who make you feel like it's ok to laugh during stress/ pain/ feces are worth the chaos. They are worth the hurricane wreckage left in their path.
When you are half Italian and half Irish, there are just some things that are beyond your control... mom has a High Blood Pressure personality, if that is a real thing. Go big or go home. In or out. Black or white. She forces people to care. She forces people to know. She forces people to laugh. I love that aggressive love.
So we barreled our way through the airport with a trail of Pixie dust mixed with just a little Cortisol, no, I'm going to say a lot, flying behind us. It was like they stuck the stress hormone and glitter in the sprinkler system and someone pulled the fire alarm. However, the logistics of wheelchairs and car seats and bags aren't that bad when you aren't trying to act like you know what you are doing and you have the cutest dude on the planet with you. People want to help.
We got settled in to the plane and within 5 minutes, the man behind us was patting Luke's head, telling him he was proud of him and the stewardess was in love. We got smuggled extra cookies, Sprite, and blankets.
The poop escapades began about 30 minutes in to the flight, but I have to take a little responsibility for that with the amount of fig bars and apple juice I was shoving in to his face to try to keep him chewing and sucking so his ears wouldn't pop. The only other part that I really need to think of a solution to would be his Larry Long Legs. I literally laid on his legs the entire flight to keep him from launching the poor lady in front of us into the cockpit. Mom continued to send up bottles, toys, candy through the stewardess who was now our devout gopher and Luke's personal assistant. As we left the flight people stopped to tell Luke what a good boy he was and that he was coming to a good place to get some help. How did the whole back end of the plane know about Luke and add him to their prayer list? You got it, Hurricane Patty.
I could have somehow pulled this trip off alone. I would have asked and paid a lot for help. My room would not look like the aftermaths of a natural disaster. I would know where my room key was. But why? Who would go get Luke French Toast sticks. Who would get me the biggest Pumpkin Spice Latte ever created? Who would have French fries and a cheeseburger on my nightstand when I got out of the shower? Who would have taken Luke on a walk to see the big trucks? Who would have almost missed the flight to go find milk for the bottle? Mommies never stop driving us crazy and they never stop saving the day. They never stop fighting for us and with us.
So I get to experience Houston's hope with a hurricane and a rainbow following behind.
Still dancing in the rain, even in Texas.
So a long time ago, my emotions made a choice on my behalf. They shut down. They shut it all off...
I couldn't really deal with what was going on with me and mine, but even more, I couldn't deal with what was going on around me, outside of my world. It seemed unbearable to process: his seizures, his meds, his plateaued development, so... I didn't. I didn't process anything, really. I stopped thinking about how I felt about all of it.
The shut down was involuntary at first. A wall was starting to be built and then, as it went up, I began to feel better and safer. That's when I made a decision to shut it all the way off. The wall building continued and I became the foreman.
I told myself I was doing it because it was the right thing to do. I wanted to protect myself from enormity of it all so I could then care for those around me. I couldn't be the one to fall apart. I didn't have that luxury. I wanted to protect my friends and family and coworkers from the misguided pain of my true reality. I didn't want to accidentally unload on someone and decapitate the innocent who was just trying to reach out. I didn't want to give people the 30 second 'elevator pitch' of what was going on with my baby, my Luke. Sharing my story while passing in the cereal aisle gives people just enough information to almost be dangerous. Why would I do that, set someone up to be unknowingly hurtful?
I was just protecting everyone else, right?
I had convinced myself that this was the humble and noble thing to do.
But the truth is, I was scared. Or maybe, actually, I was confused. Why wasn't I a wreck? Could I really build a wall tall enough to keep everything out? Who am I, Donald Trump? For a while, I actually just waited for the emotional breakdown to barrel through the wall like The Kool-aid Man. Everyday that the breakdown didn't come, I told myself it may come tomorrow and if it did, no one would fault me for it. But it never did. The magnitude of having a child with a genetic disease never felt unbearable to me because I wasn't feeling much of anything. So where were these emotions going? They had to be going somewhere. The longer I went without breaking down the more fearful I became of the storm gaining momentum. While time is supposed to heal, the longer I was in my world, behind the wall, the more terrified I became of my inability actually to deal with or face this reality. So then, the taller and thicker and stronger my wall became. I didn't breakdown because I physically couldn't.
I am strong because I am numb and go into the world to share my life with the ones I love. I talk to them. They ask how I am and where ya been. I answer. Then I hear my life coming out of my mouth, but it's like I hear it for the first time. As it hits their ears, I see my life on their face. My life, my morning, my afternoon, my night, rolls in like Eeyore and his rain cloud and sucks the color from their face. And then they realize that it is their turn to respond. Their mouth is still open, but nothing comes out.
Most people prepare on the way to sad events. Funerals, for example, have a script we can follow if we draw a blank. We can be sorry. They can be in a better place. Their pain can be over. We can start a meal train and shower them with casseroles. But this. Sick kids. Chronic, genetic disease. These do not have scripts. There are no safe phrases to fall back on that come easily to your mind.
Before people even try, I throw them a life raft and let them escape safely from the conversation, but, in doing that, I have to lie and say I know in my heart that it will all be okay. You both walk away relieved it is over. Your dismount, however wobbly the landing, had a very high starting score based on difficulty, so you feel it was a relative victory.
It pained me to bring my pain to others. So, I stopped talking and sharing. I didn't know HOW to do it. It was very important for me to be honest, but also, not sound negative or whiny. I couldn't pull that off, so I stopped trying. The wall gets taller.
But REALLY, also, in full disclosure since now, apparently, this is my diary and not a blog about Luke, I didn't talk and share and reach out because it didn't matter. It didn't matter that you knew someone that once had seizures. I didn't matter that your son didn't talk until he was three. It didn't matter that medical marijuana worked for your co-worker's sister's kid. It didn't matter because, in the end, Luke would still be sick and, for some really jacked up reason, I would be mad at you. So thaaat sucked. Being angry with people for caring about me? For having healthy kids? For trying to understand or relate? So guess what... taller, stronger, wider.
I stopped listening to music. I stopped reading. I stopped checking Facebook. I blocked people who seemed toooo happy. Stupid liars, I thought. And then... one day, He shifted the wind and I woke up from the haze. I missed who I was, but even more, I missed who I was supposed to become when Luke was given to me. And just like that, the big, tall wall came tumbling down like a house of cards. With one small breeze, all the work, all the building, all armor I wore to protect myself, was gone. It was just me. Open. Vulnerable. Exposed. But it was ok. I didn't need any of it anymore. I wasn't afraid.
And here I am, ready to tell my story and ready for my story to be shared. I am ready for people to know that it’s hard. I am ready for people who don’t even know us to keep us in their prayers. I am ready to be ok with sounding negative when it is just too hard to find the silver lining. I am ready to sound selfish when I write an entire blog about myself on my son's website. Luke's story doesn't need to be hoarded or protected. Luke's story is mine and yours to share. He reminds us that Cheerios fix everything and that strep isn't really that bad. He reminds us to laugh and kiss and dance even through the pain. We are all in this together. We are all just trying to figure out how we fit in this life experience. And we all want to know what the heck we are supposed to be doing with ourselves while we are here. No one has it figured out. That is the beauty of it all. Whether you speak to the Lord above or to the mountains or to the universe, I think we can all agree that we have an expiration date. Our time here is brief. So while the days can be long and the nights even longer, life itself is so short. We do not belong to this world. We are here on a lease. Some of us are just lucky enough to be leasing an angel.
You know when you start shopping for Christmas in September and you have convinced yourself that you have it all together and it is going to be like, the best holiday ever? And then you find yourself at Wal-Mart crying in the aisles on December 23, thinking, "How. Did. This. Happen?" There is such thing as too much time to prepare. You can't pack your toothbrush a week before you leave. Some things have to be figured out in the moment or even after. For a person who is desperately trying to grasp the illusion of some sort of control in this chaotic time, waiting is not a possibility.
So, what have I been doing to "get ready" for Luke's pre brain surgery adventure. Well, yesterday, for example, I called the financial counselor at Texas Children's Hospital to discuss prior authorizations and Medicaid choices. Her annoyance with my questions was beyond apparent. So, I apologized for bothering her on a Friday afternoon and getting on her nerves with my obvious ignorance of the topic at hand and explained that I just needed help to understand this intricate process. You see, I have a small case of Post Traumatic Insurance Screw-Up from Luke's last brain surgery when the hospital lost paperwork and we ended up with some surprise bills. (Does anyone else HATE the word suRprise. WHAT is that 'r' doing. I mean, I know there are two in the word. But I have no beef with the second. It makes sense. I'm cool with it, but that first 'r' gets me every time.) So, anyway, my trust is a little shaky in the billing department. She assured me that she and the insurance companies would take care of it and that "parents don't normally get involved in these authorizations". Well, maybe not most parents, but unfortunately, Patanya, I have your direct line now. I am going to be versed in writing prior auths (thats what we call it in the insurance business) by the end of this, with your help.
So, this is what happens when you book my child for a pre-surgery appointment three months in advance. I'm going to be all up in it, sister.
In my defense, it is genetic. Mom has multiple contacts at the hotel. She has a wheelchair accessible shuttle coming to pick us up from the airport. And she is now best friends with the special needs flight coordinator, Kim, at United. They shared stories of their grandkids and cried together for 35 minutes.
I know there are innocent bystanders in my wake, but it feels good to fill this stagnant, painful waiting with some 'doing' and some 'sharing'. If we are going to fly across the country, or at least to the bottom of it, I want to know, maybe like, or possibly even trust the people who are going to be a part of his brain surgery. Right now, I am just in the business to force those who have to be involved, to care about my son just a liiiittle bit more than everyone else. I want them to work just a liiiittle harder for him. I want them to be just a liiiitle more precise/ thoughtful/ careful/ patient. What else are you supposed to do when you lift it up? When you hand it over to the best doctors in the world? Sit there and wait.... I am pretty sure God delegated this task to me. I'm pretty sure he is cool with me doing this part for him. My principal, at the school I teach, always says, "When we all do a little, no one has to do a lot." Just helping out down here.
These people go to work everyday. They do their job. The answer calls of crazy parents. They take blood from screaming kids. They handle baggage of tired, traveling families. I want them to know our story. I want them to fall in love with Luke I want them to stop and notice his angel wings. I want them to care.
We know what it feels like to get in the zone of our jobs. We know the people who make our jobs feel like work and we know the people who remind us why we started doing whatever it is we do in the first place. I want Luke to be the boy that these people talk about at the dinner table with their family. The little boy who can't talk, but speaks to you. When I think about us getting on that plane, I visualize the map of the US. As the plane crosses the midwest into the great plains, a stream of pixie dust scatters across this great nation as Luke flies above it, touching all those in his path. Too much? Nah.
We leave for Houston on September 28. We will be admitted to the hospital the next morning where they will start this 3 day EEG. I am very anxious about what this will find. Luke has not been doing well as of late. He has run a fever, he hasn't been sleeping (God bless my parents), he has vomited, he has continued his subtle seizure activity, he has cried... a lot. As I type, I am becoming very anxious. I know there is more going on that we can't see with Luke's brain. The child can't stand anymore. He can't find his mouth to put the bottle into (I'm pretty sure it is supposed to say, "in which to put the bottle", but I just can't with that grammar yet). What I am more nervous about is what they may not find. What if.... No. No. I am not going to do this. When I start to 'go there' in my mind, I shake my head like an Etch-a-sketch. (HIT RESET: Faith. Trust. Breathe... Repeat) So, anywhoo, we will be in the hospital until the collect as many seizures as they need. They have us booked for 3 days, but we may be discharged sooner. And then we will commute from the hotel (it is literally across the street, quit being dramatic, Steph) to the hospital for the remainder of his appointments and tests.
I guess the main question I keep getting (mostly over and over again from my mom) would be, "Is there a chance they can just keep us down there based on what they see and just do the surgery while we are there?" No. They are going to collect as much data as they can from Luke's tests and then sit down as a team and discuss the plan. I, personally, appreciate the thoughtfulness and collaboration behind determining which portion of Luke's brain to remove. I mean, come on, we have at least 7 teachers meetings every single year to prepare, discuss, and review how we will hand out and collect the testing materials for our state's standardized test. So I think I handle these doctors wanting to have a few extra meetings before they open up Luke's precious head.
It is incredibly painful to wait. Lucky for me, waiting is not something I do. I've got a story to share and pixie dust to spread.
So many directions I could take this. So many holes to fill. Don't worry, now is not the time to fill them all.
There have been some huge moments for me this week which have left me on a constant upward mania swing. These personal awakenings, if you will, make me sound as if I am at Joshua Tree eating magic mushrooms, so I apologize, but clarity, gratitude, and, best of all, peace comes with this trippy- hippie, communal love-fest that I am on.
To get to where we are now, we have to go back a little bit. Or should I say down down, down, in the hole I let myself fall into this weekend. The trip to Cincinnati was...confusing, lets say. We went in an emergent state with Luke. He cried the entire trip (2 hours) up highway 71 North. We got there and were rushed through the ER. We received some meds that didn't work and then we waited... for 24 hours. Luke got a load of Vimpat and we were on the road headed home the next day by 6. Luke was no longer in pain, but I could tell he was continuing to have the seizure like activity that brought us up there in the first place.
Now, don't get me wrong, he is doing better than a few days ago, but it was just a tough trip. Nothing really happened and nothing really changed other than doses of meds. We ran up with so much momentum, is it selfish to say it was anticlimactic? I mean, I didn't want them to rush him to surgery, but he had 20 seizures in one day. Shouldn't I just be happy that Luke is doing better? Sure. But, that didn't mean that driving home seizing and smiling as opposed to seizing and crying didn't feel defeating.
So what is the plan?
The plan is to simply get back to where we were two weeks ago. A few seizures a day, but stable and comfortable so that we can get to Houston.
Why is Luke still having this subtle activity?
Well, we have gone back up on the Vimpat that we had begun to wean off. Dr. Franz very clearly stated, for those who were on the fence about what the med was doing to Luke, that it was not "poisoning Luke" and making him so wobbly. What has happened is that the seizures are localized. This means they are not spreading across his whole brain when they start. Sounds like a good thing, right? Except, it is like caging up a wild animal. Yeah, the rest of his brain is 'protected' (I use that loosely) but the part in which the seizure is being contained, is getting constantly attacked. He compared it to stroke-like repercussions. The brain is not dead, like in a stroke, but it has been through the ringer. Dr. Franz, from the moment we started seeing pop-up activity associated with weaning the Vimpat, became very worried. He said it was like a house fire. It starts in the frying pan and you think its no big deal and the next thing you know your home is engulfed and you are sitting in the ER with an IV of Ativan.
So, what's the take away? Where is the enlightenment? What do we do with these moments that land with a dull thud? Ok, stick with me through this one. Two things will be apparent. While a Hoosier at heart, I am not a farmer. And you will understand why the good Lord gave me boys.
Our experiences are like farmland. Some times, some farms, are more... fertile... let's say, than others.. These weeks/ months/ years has been abundantly fertilized for us. This plot of land that I am working with just got yet another truck load of manure. But, what I found is if you put enough goodness into and around the said excrement, a weird thing happens... something grows. So one option is to do nothing with these terrible truckloads. You do nothing and you know what you get? Rotten turds and flies. And couldn't we all go on and on about that kind of person, I mean field? But I'd rather put on my Car Hearts... Carharts... and get dirty. I'm trying to grow some pumpkins. (Pumpkin Spice fo' life) So your other option is to take your fertile farmland and get your butt out in the field with your tractor or whatever it is that people use to plant stuff. I was going to say hoe, but even though I know for a fact it is a real tool, I'm tryin to keep it classy. Ok, so you are out there tilling the land. Watering it with bittersweet tears of seeing your three year-old in his new wheelchair. Feeding the plants with the Miracle Grow of the soul, laughter.
My Miracle Grow moment happened while sitting around a table with people I have loved for 20 years, laughing about the most inappropriate topics imaginable. It was magic. Seriously, I can't even vaguely explain what we were discussing to make it appropriate for my more mature audience. It was terrible and disgusting, but as I left my stomach muscles were sore (I am way out of shape if laughing makes me sore) and my face hurt. To be around people who want you to be honest but also challenge you to want to try to be joyful, even when you are up to your knees in it, is hard work, but it's good work. You put enough good stuff in to a field that full of crap, it is impossible not to get one heck of a yield that you can share with everyone.
Let's raise our pumpkin spice lattes in the air and toast to helping each other shovel the slop.
Here's to the harvest. it's coming soon, brother.
So, as stated in the previous post, Luke had seizure like activity Wednesday evening from about 2 in the afternoon until he went to bed that night. Thursday morning offered no relief. He was agitated, crying, and seemed to be continuing to have seizure like storms going on. He got a dose of Ativan at 9 and again at 11:30, but he still continued his discomfort and agitation, not the mention the increased amount of his normal seizures he was having. It almost seemed as if the Ativan was revving him up which is the complete opposite of what it is supposed to be doing. So, we are having seizure activity for almost 24 hours and his rescue med is not stopping his seizures, giving no comfort, and maybe even making him more uncomfortable.
I'm just going to hit the high points if you don't mind:
1. Got the call. Left work, headed to Cincinnati.
2. Went through ER to be admitted.
3. Received another does of Ativan (this time IV) through accessed port.
4. Became very/ more agitated.
5. Continued to have normal size seizures. Crying stopped.
6. Got moved up to floor.
7. Ate some graham crackers.
8. Have told the same story literally 14 times today (that is NO joke).
9. Have confirmed his home meds 5 times
10. That's it. No big changes tonight. Just waiting to hear from Dr. Franz about plan tomorrow.
11. Oh, and he has had 20 seizures today.
And, I'll be darned if I don't end this cranky little update with a sweet ray of sunshine. We got his blood work back and, based on my experience in hematology, his numbers look really good. Granted no one has come by to tell us that... dang it... I was doing so well. I'm about to go shower and watch some makeup tutorials on YouTube, that may help. Never mind, Luke just woke back up. Guess its a dry shampoo kind of trip.
Mother of two amazing little boys, one who just happens to be a TS warrior.