When Apollo 11 splashed down to Earth, NASA carted the boys to a Quarantine Facility to readjust. They figured the chamber would decontaminate them from any strange moon diseases, but it would also readjust their bodies to the strange pressures of Earth.
The chamber was located in Houston, Texas.
So they sat there, in Houston, after just completing the unthinkable, the unimaginable. They sat there for three weeks, in Houston, unable to join their friends, family and support system.
They don’t isolate astronauts anymore, probably because NASA barely exists. But whether the chamber actually does anything or not, it feels like a necessary step when you have literally been off the planet for some time. I kinda get what those scientists were thinking 50 years ago. To just send Buzz and Neil back in to Kroger after bouncing around on the moon seems kind of reckless.
Your body, your mind has to learn how to be a citizen again.
So, I get it. It doesn't mean I like it, but I get it.
I still have things I feel I need to clean and wrap and cook and DO. But I also understand that if we were to have flown home on Sunday, stepping off that plane right back in to being a daughter and mom and friend and neighbor and sister and aunt... my head might have combusted.
So the past two days I have been in my decompression chamber of a hotel bed. I have showered and napped and snacked... all of which have been exhausting. Luke has taken it easy himself, having more than one bowl of bacon and dedicating the rest of his energy to "becoming digestively regular" after pain meds and anesthesia has backed some things up.
My mom has ordered me back to bed and tucked us in as she ran around Houston picking up carry-out, filling prescriptions, and locating every Starbucks in the Houston metropolitian area.
But there was a moment yesterday that all that recharging didn't feel like rest anymore. The blanket felt little heavier and I seemed to sink in the bed a little deeper. I knew it was time to get up but my legs felt like lead and my head ached... I was letting the Houston Hangover creep in.
Until Patty Smith does what all moms do, she told me to get my butt up, get my shoes, grab my hat and, most importantly, put on some lipstick.
Astronauts put on their suits to protect them from outer space. Athletes put on their uniforms as a ceremonial step to get ready to take on their opponent. My uniform, my war paint, to go out and be all that it takes to be Luke’s mom, is lipstick and a Nike cap...
So Luke and I scraped ourselves out of bed grumbling like teenagers all the while knowing mom, per usual, was right.
And so we shopped... which is really just practice being a human again.
I had to wait in lines, maneuver crowds, and exchange pleasantries.
I also had to learn how it felt to take a non-seizing child out in to the community.
We could scoot his chair up to the table at dinner, no longer fearful that he would have a seizure and hit his head on the edge.
We could sit through the whole meal without having to walk out as he cried himself through an episode.
We practiced being 'kinda' normal.
To watch Luke eat a meatball and throw silverware on the floor and and spill his drink and grab people's shirts as they walked by was unbelievable.
We have been to very few restaurants in the past three years but to be able to make it to gelato and cannolis at the end of a meal was a first that brought me to tears.
We are practicing being humans down here and we are getting pretty good at it. As much as I am ready to see my little Sammy-Biscuit-Boy, I know that Houston is apparently the place to be when reintegrating in to the world.
We let our bodies and minds get used to the change in pressure. We let our eyes adjust to sunlight. We catch our balance as cars fly pass us on the street.
And then, when we will step out of the chamber Friday afternoon, we will be ready to take on our new lease on life...
We ran hard for days.
That's my element. I've told you before.
Go. Do. Push. Fight.
It's when it's over that I don't know what to do with myself. They told us that we are supposed to rest. That we are supposed to "take it easy". We are supposed to chill...
Strangely enough, this is the part where I find my discomfort. This is where I run out of things to do, so instead I must feel.
This is where reality catches up with me and emotions sneak in. This is where I am faced with it all... fear and relief and gratitude and anger and lonliness and happiness and exhaustion and love. This is when my heart is so full it starts to leak out of my eyes.
I want to run from it, but I have been told you can't run forever. Sooner or later you have to feel something.
Be Still, I am told.
So I am.
I feel it all today as we walk out of the hospital.
I am tempted to ask housekeeping if she needs help vacuuming in the lobby or maybe I can start packing and re packing our bags, but I stop myself.
Luke just had brain surgery.
Yeah, that happened.
I miss Sam and feel guilty for being away from him and for the sacrifices he must make.
I know, I know, but you would, too. So just let me.
Luke has been seizure free for two days.
This is the longest he has gone in two and a half years.
I'm just going to sit here with that for a while... as much as I want to rotate laundry...
I'm just going to sit.
Happy xmas (war is over)
Out of ICU and back to our home-sweet-home, the 10th floor. Luke did amazingly last night. He ate, he drank, he played, he fed me Cheerios... and he slept. Which also means I slept, albeit in a room with two other beds and hourly vitals. Hey, I will take 4 hours any way I can get them.
Luke did vomit when we got on the floor and is just feeling crummy. It actually makes me feel better that he is showing some post-op symptoms because, to be real honest, I wasn't convinced they may have forgotteb to do brain surgery with as chill as he was last night. At least now, even though he feels poorly, I know that he is reacting normally for a child undergoing two brain surgeries in one week.
We really like normal.
As my man-child lays on top of me I try to soak in every smell of his vomit breath, the feel of his breathing, the feel of his filthy hair.
Yesterday was big, but today is monumental. Today we see.
I lay here and battle the confidence I want to carry that the surgery was a success. I want to put good thoughts out there and have faith. But then I also remember that Luke has tuberous Sclerosis and the seizures may come back. I want to be prepared. I keep up my guard, ready for the surprise attack.
As he starts to wake, he startled and stretches. Every time he jumps, my heart jumps with it ready to press the button to alert the nurse that the seizures have begun again...
I wonder if that will ever stop and then I laugh to myself.
I'm a mom, duh, I've been warned, I will never stop. We will always be ready to fight for our babies. No matter if they are 3 years old or 32. It's never a question. We are always ready for battle when we love so fiercely. Our armor never gets put away.
I guess sooner or later you just get strong enough to not notice it is on.
Tuber out, but...
Luke is out of surgery and all the tubers they were targeting are out. Dr. Curry was very happy with the ablation. Nothing was left behind this time.
On the scan they found a small blood clot in the area that was ablated on Tuesday. Happens in 1% of all brain surgeries, but has happened in 66.6666% of Luke's. Bad blood clots are big and dense, Luke's is small and spread out.
Heading to the ICU for overnight monitoring. Luke was mad at us because we didn't get him Cheerios fast enough, but other than that I am in awe of the fact this kid just had his second brain surgery in a week. He is playing and singing (his own version) and eating and drinking. He is hugging and kissing and bossing us around.
Every time he moves or twitches, I jump ready for a seizure. I am trying to prepare my self for the possibility that the seizures could still come back. I will never put down my aromor. I will never be ready to jump in to battle. The possible victory in this visit will remind me that even when you are lying on the battlefield, bruised and beaten, that does not mean it is over. We all have a fight everyday that gets us out of bed while on somedays makes us want to crawl back under the covers, to be seizure free, to be sober, to be happy, to love yourself. We fight because we are built to push and grow. It feels right because we are warriors.
I will not take of my armor tomorrow, but I may see how difficult it is to dance while wearing it.
Two things that I hope I do until the day I die. Fight and Dance.
and you all say you feel helpless... goofballs.
Keep 'em coming. We feel you.
Surgery day + update
This day has been eerily peaceful... can't imagine why.
go to bed... we've got a big day ahead of us tomorrow. SURGERY TOMORROW!!
Started to post an update this morning and then the doctors walked in... news at end. More to come. Feel confident we will have some solid answers today.
And So We Continue to March...
Don't put your battle gear away quite yet.
Go get it.
All of it. The big stuff, too.
Its not over. Not even close.
Lots of news come at you hard and fast with no anaolgy to buffer.
-80% (not 100%) if the tuber was removed
-6 depth electrodes were placed in his brain to capture post-op activity
-the new "hot spot" is a cluster of tubers (2-3 clumped together)
-the new hot spot is very close to Luke's left motor track and we may not be able to get this tuber out with laser.
-Luke just had a seizure... like a normal, regular, reason-we-did-brain-surgery seizure (I was pretty sure that wasn't supposed to happen)
I wrote this cute little nice post after surgery to go up today but it's not really an accurate tone for how I'm feeling right now.
Worth reading if you are in the mood to be positive.
To add insult to injury...Luke got finished with surgery around 11:00 and took us on a little 4 hour trip to hell while we came out of anesthesia and finally got enough morphine in his system to rest.
I'm actually going to wrap this post up before I get myself in trouble. I find it a Christmas miracle that I haven't said any cuss words yet because, honestly, they have taken the place of the "Rocky Theme Song" on a loop in my brain.
So, go get your armor and tell the troops there is no rest for the weary.
We aren't done yet team.
Go throw your shirt in the washer. Go get your war paint. Go get your sheild.
I am not afraid. I will not back down. I will fight.
And so will you.
So get your butt ready.
I am going to need another day from The Army like yesterday. Marathon not a sprint people.
The battle may not have gone as expected, but now I turn my eyes to the war.
Love you Soliders!
I'll get you my pretty...
Last night The Wizard of Oz was on this thing called "regular TV" that we were forced to watch in our hotel. It was either that or BeachbodyTV and I think at this point I have made my stance clear on the whole exercise situation.
This is what is now responsible for the constant "Ding dong the witch is dead..." song rolling through my head. I told you all, I am not that musically mature. Or regularly mature for that matter, but that is another day.
There is this whole story that you miss when Dorothy drops her reckless butt in the middle of Whoville or where ever the story finally begins in color. There is all this pain and angst that stupid witch brought on that cute little land. We don't know their story, we don't know their loss, but we can tell by the pointe ballerinas that they have waiting in the wings that they were ready to celebrate her demise.
They knew, before the audience, that even though they celebrate, they are not done fighting. They know there is time to breathe and be thankful.
AND then we meet the wicked witch of the West. She's new to the scene a lose cannon and we don't really know her well enough to know what she is capable of. We fear her becuase she is the unknown and also because she is busted.
Ding, dong the wicked witch is dead...
Our tuber is gone.
That tuber we knew so well. We hated him, but we had developed a bit of a strange relationship with him. I knew what to expect. I blamed things on him. Everything would be ok once he was gone.
And now he is gone. And a new villian creeps out of the darkness. Not quite the entrance as the Wicked Witch. Not sure this bad momma is coming in hot, cracking up like a lunatic. She is sneaky. She plays nice at times. She has hid behind her Hitler-grade brother for years. But now she is getting the stage and we will see if she is all talk or if she is ready to try to step up in his place.
But we have her number. No more sneeking past us. We have a New Yorker and a Hoosier (kinda) working this one. Talk about a tag team.
The doctors removed the tuber but they are not letting Luke out of the state of Texas until they get a beat on this Wild Card.
They have placed depth elecrodes through Luke's skull and in his brain. They are bolted in and will capture electrical activity from 6 different places around the right side.
We will leave those electrodes in his brain for 5-7 days OR until we see something we don't like coming from this area. IF Luke continutes to preform this new seizure type even after the orignial tuber is removed, there is a possibility for another ablation.
The location of this tuber is a little more complicated and we will have to take language and left hand gross motor in to account before we determine if another ablation is a possibility.
But that is like 3 steps down the line and it almost seems silly at this point to plan that far ahead. We know better.
We can continue on with the parade. We have earned it for sure, but we won't forget that the witch has a sister and we aren't sure yet if she is going to earn herself a little visit from the baddest crew around.
Team Luke coming for you baby!
Hear our battle cry...
Love and choo choos
Long day with little time to process information we received, so nothing cute to throw at you today I'm afraid. This little train is out of steam.
-surgery still on for tomorrow
-check in at 6:30am
-ablating tuber on right parietal lobe
-inserting multiple depth electrodes to monitor concerning areas.
-leaving electrodes in for days/ week to capture possible seizures
-possible second ablation next week based on findings of electrodes
Will follow up with more details tomorrow. But my Baby Sam is here tonight so you are just going to have to wait.. hoping that he and Thomas the Train can fill my tank up with some good coal.
Feels like the trip should be ending but instead we are just beginning.
Weird day. Hoping tomorrow can get my back on the right tracks.
I know that you know there is always way more to tell. At this point we all understand TS is never a one-and-done kind of thing. But neither is life. There is an asterisks that goes with every story, every chapter. And this one is no different. Just like last visit, there is always the fine print.
I hesistated to even share this "wait and see, it may be nothing" kind of information but you all said you are all in.
So here we go...
There may be another place, other than the big nasty tuber, that is causing Luke to seize.
We were very prepared for this possibility.
We knew coming down here that we would probably see more action than just the one tuber since he has been off the Afinitor for a month (the drug that has kept Luke from having 50 seizures a day). Going back on the medicine after surgery will most likely give us control of this new seizure type.
Will we monitor with depth electrodes? See if we can remove? Wait to see if we can treat with meds?
We will have more to go on tomorrow.
Hearing the possibility that surgery may not take care of all seizures was momentarily deflating, but, again, not surprising and definitely not going to break our spirit and depleate our hope.
We continue to live in a world of cliches, so I reach in my bag and pull out my A-Day-At-A-Time card.
We knew there was more to the story.
And I bet at this point, you did, too.
The dawn has arrived.
After digging through 30 episodes, Dr. Masters JUST (8:50pm) finished analyzing Luke's "remarkable" seizures and came in to deliver the news that YOU were assured we would be getting. I, on the other hand, am not going to lie, for a few hours of the painful waiting today I started to prepare myself for other all the other scenarios and possibilities... but we don't have to go to Hypothetical Land this evening.
The large "typical" seizures are very clearly STILL coming from the tuber on the right parietal lobe .
THE PLAN IS A GO*
*Nothing is in stone yet, obviously. We still have to meet with Dr. Curry and Dr. Weiner Monday and confirm the plan. They could feel differently about the readings. Or they may want to monitor, with depth electrodes, other places in his brain that have started to get a little sassy since we have been off of the Afinitor in preparation for the surgery (it is an autoimmune suppressant). But honestly, you could stick a depth electrode in my eyeball right now. I am so relieved and thankful and (I'm going to go there)...excited.
You guys... we may be getting a break.
Like this may be really happening...
Ok, that is all I am allowing myself to do. I already possibly jumped up and down with mom and we maaaay have high-fived. Time to reel her back in. I have too romantic of a brain to let it start snowballing out of control with possibilities...
Stay in the moment.
Enjoy the morning's warm sun.
We made it through another dark and stormy night.
I will sit on my proverbial porch and sip my real life coffee. I will listen to the silence and feel the stillness in my heart. I will notice that even though the load we carry is great, it is just a little lighter today. I will take a moment to appreciate the promise of this new dawn.
The Dark Night
Yesterday was a worker bee kind of day... go, go go... do, do, do. Plenty to keep you busy and your mind out of the darkness. Until the night comes and you are forced to address what the day before you holds. To say that I am axious is a bit of an understatment. Something about the lights in the EMU make me see Luke's TS a little more clearly. Just like the last trip, talking, observing, answering, reporting... It makes things a little more real. And I guess, every once and a while, my reality bites... Hoping the Darkness of the last night cliches itself into a Beautiful Dawn.
Here we go...
The Cliffs Notes
I tried to write a post that was just full of gratitude but also funny and witty and yet genuine and I really couldn't do it. I can't thank you enough, for your support, but also being with me. I don't know how to say thank you for what you have given me and my family. It's a definite character flaw. I'm working on it.
So, I will try... thank you. Or how about THANK YOU. Ok, no, that just seemed like I was yelling at you... but for real. This could have been the darkest time of my life. And as tough as it has been it has been the richest.
One of the many families that have spoiled us are the Koerber's. They are part of the family we have created. They are such an inspiration for resilience and growth. In keeping with their amazingness they wanted to use their Christmas party to raise money for Luke and to help spread his story. Jacquelyn asked me if I would write a little something to tell Luke's story... I started to do what she asked, I really did. Then I accidentally made a 5 minute YouTube video. Oops... It is being played right now at the party. Possibly a little bit of a mood kill, but I know some of you have jumped in to this crazy show a little later in the season. I understand that you probably don't have a free 7 hours to go back and catch up on past blogs so I want to share this with you to get you caught up.
Years 1-3: The Cliffs notes.
Butterflies and Bees
I have woken up every morning for the past week with the theme song from 'Rocky" blasting in my head. All day, as I walk the halls of Mt. Tabor Elementary, as I put the dishes in the dishwasher, as I work on homework, it feels like I am in a constant roll of opening credits. It's a movie about a mom just trying to get by, doing her best for her two boys, preparing for a second brain surgery for the oldest.
Its a long opening theme song.
Pretty generic, I know. I wish I had a better song palate and chose something way more hip or complex. Something that communicated my tender side, my deep side, my theoretical side.
Truth is, right now, I don't have those sides.
All I have going on is Rocky.
All I can feel is the fight.
All I can do is go-go-go.
I don't know why Rocky though. Its not really a secret, I'm not much of an athlete. I have pretty much sworn off exercise until my pants don't fit anymore.
But there are some people (You know who you are... weirdos) that need it. When other people have too much to drink, they eat a cheeseburger and go to sleep. You guys, you all go to hot Bikram yoga to sweat it out. When other people get overwhelmed, they crawl in bed and binge watch 'New Girl'. You all, you weirdos, go for a run to 'clear your mind'. You don't lift and jump and bend just to get in a bathing suit, you all even do these ludicrous activities outside when its cold!
You do it because you like it.
Because you need it.
Because even when you hate it, you know you are better for it.
So, I mean, I kiiiiinda get the hype. Don't get me wrong, I haven't worn yoga pants for anything but Target runs in 12 years, but I get the whole pain and gain thing. I get the blood, sweat, and tears. I get pushing it to the limits and then going just a little farther.
This year has been a year of rigorous exercises of the mind and soul. Maybe it is a marathon or maybe it is bodybuilding, I am not sure which analogy makes more sense yet. (Leaning towards bodybuilding with my affinity towards self-tanning.) Nevertheless, this year has been a year of intense training and growing and stretching and pushing.
It has been such a difficult and heartbreaking year watching Luke regress and suffer.
It has been such a rewarding year because I can feel the results of the work that has been put in starting to pay off. I can feel our momentum starting to build.
BUT. Do not get it twisted. This is not a beautiful closure to 2016. I am not going to tie it in a nice little bow for you and fade into the sunset.
I am not in a great place presently.
I am tired. I am hard. I am cold.
I am so over preparing and training. I am tired of the same workout. I am tired of the same schedule. I am tired of the same challenges. I am over it.
I am so ready to put this year in to action. I am ready to get this show on the road.
It is time to take all these lessons and heartaches and hurdles and go DO.
I'm not an idiot either. I know that this fight isn't the end of my training schedule. I know that this surgery isn't going to cure Luke. Luke has Tuberous Sclerosis. It is a genetic disease. He has other tubers. The seizures will come back.
So the training schedule may change, but it never goes away.
We don't get to stop working out. Just like those nuts on the treadmill. They aren't finished when they get to a size 2. Its never over. Their routine never gets easy.
"Once they are potty trained, our lives will be so much easier."
"Once I stop breastfeeding, life will be so much better." (That one is actually true... i know, I am a jerk).
"Once they can talk, they will be much better behaved."
And then it happens, they eat, talk, pee, (if you are lucky) and you wait for the relief... it doesn't come because all of a sudden life is tough again for a completely different reason. A new challenge presents itself.
We are never done. It is never over. The routine never gets easy. It just changes.
"Done" isn't an actual thing that you get to be.
"It's always something..."
Yeah, stoooopid, thank goodness it is always something. All that means is you are lucky enough to get to keep breathing and loving and fighting and growing.
Results are wonderful. They are stepping stones to new adventures (corny) or challenges. But they are like the Olympic games. They are exciting and inspiring and moving and special. I love an overly necessary celebration as much as the next guy, but lets give a nod to Tuesday, shall we? Let's throw some respect to the sleepless nights and fevers and medicine changes and emails and blood tests and stitches and therapy. You got to do the work because you love it. You have to love the process, even Tuesdays. The process is where we spent 99% of our life.
But my 1% is coming rapidly. Next week we get to do something with the momentum of this year. I am ready for December 8 when we will get another 72 hour EEG reading to confirm Luke's seizures are still coming from one tuber. I am ready for December 13 when we have laser surgery to remove that S.O.B/ tuber from my 3 years old's head. I am ready for 2017 when we will find a home and start preschool and see what Luke's TS will look like without that nasty tuber jacking everything up.
But mostly, I am ready for today..
We are promised nothing. We are owed nothing. Every day we are here is a gift (so corny) even the ones that knock you to the ground. That is why I plan on rolling in to Houston in a gray sweat shirt/ swaet pant combo and a black toboggan. You can knock us down. Shoot, you can knock us out. But we don't stay down for long. We are champions of the everyday.
Ain't nothing wrong with going down. It's staying down that's wrong.
Mother of two amazing little boys, one who just happens to be a TS warrior.