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.
"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.
Cause some days, it is just weird to be positive.
Hospital twice in a week. Once for infusion and once for a check in with Franz.
We have had three nights in a row of inconsolable tears.
Seizures have gone from "normal" to full body electrocution to clusters of 10-15 jolts in a row.
He wants to get up, but he doesn't have the strength or balance.
He wants to suck his bottle but his motor skills can't find his mouth.
He wants to be held but not touched.
So, we went down on the Vimpat because it was messing with his balance. Is that the problem? We held the Afinitor for two days when we got his labs back last week because of his white count. Is that the problem? The infusion makes him run a fever and vomit and we have read about other side effects that go along with infusions such as migraines. Is that the problem? He was off the Afinitor for a month five weeks ago and it takes a long time to get out of body. Is that the problem? TSC is a moving target, always moving and changing. Is that the problem?
I know that this is just one (three) bad days in a row. I know Houston is just around the corner and we will have some more answers. I know Dr. Franz is the best TSC neurologist in the world. I know faith and fear cannot coexist. But some days it just feels weird or disrespectful to be in a good mood. It feels distasteful to laugh when there is this pain that you cannot save your child from. I will say, shopping the Dress and Dwell clothes boutique overstock sale last night did help. Getting away so you don't feel like an a-hole for smiling and getting excited about something trivial. Even if it was the sale of the century (seriously, everything was $10), is going shopping while your child is hurting irresponsible? I know the answer is no, but I also know that every parent knows this feeling. We all have this disgruntled person, either in real life or in our subconscious, that tells us somehow that what we are doing is not enough for our children. We aren't doing it right. We are selfish for going to dinner or work or school. We are reckless for spreading ourselves to thin to try to do it all.
Come on guys... we aren't.
We are the example to our kids of hard work and responsibility, but most of all we can show them that it isn't weird or rude to be happy when the wheels are falling off, it is freaking awesome. (And so are my new $10 velvet leggings.)
...and then there was the text I got that made this happen..
We were just hanging, watching Elmo, getting ready for bed. Sometimes at night I start to reflect on the day, the week, my life. I get into my checklist of things to do before bed and fall into my own head. 20-30 minutes will go by and I will realize I haven't said a word. It's not that I start feeling sorry for myself, but in these hours, my reality seems all the more "real". I zone out and fall in to my thoughts and the next thing I know, the kitchen is clean and jammers are on. Then comes that precious time when the checklist has one final component, snuggle. I force myself to stop and smell the boys hair. I try to stop, but it only takes seconds for my inner primate to appear and I am back to clipping nails and cleaning ears. Then my phone dings and I got this text below...
Watch to see the sweetest gut punch possible.
Ever been punched in the gut by a whole bunch of love? It is an awkward feeling. In this particular situation all the emotions were able to escape through my face, specifically my tear ducts. This text reminds me that my head is a dangerous place to hang out.
My heart knows the truth and I am not alone.
In afternoons when I haven't spoken in 2 hours because no words are there, you are there to shout his worth.
On days where I feel like I am dropping the ball, you all are there to pick it up for me.
In conversations when I forget to ask how your life is going, you don't assume selfishness, you share with me because you know I care.
When I felt like a blog would seem like a lame attempt at validation or attention, you reminded me that we can all grow from sharing our pain, love, and insecurities.
Opening up our life was not a decision taken lightly by me. Being vulnerable is not an emotion I'm down with. But the hope, support, and, strangely enough, community I have felt from this was unexpected. Letting people in allows the possibility to be understood, maybe not agreed with all the time, but understood. I've said it before and I will say it again, thank you so much for being part of our little Land of the Misfits. We don't have to have it all figured out. We will shout for the other when they are too scared to talk. And we will pick up that ball when our butterfingers can't hold on. And on those days you can't get out of your head, we will give you a gut punch of love.
A Very Special Thank You to Teshea and Alex Barbee: great friends and prayer warriors. This summer they visited MIX and recruited some more members of the team.
MIX is a summer camp for 6-8 graders put on by CIY (Christ in Youth), Students are encouraged to be Kingdom Workers in Gods Kingdom and use their own gifts to spread the word of Jesus. They focused on "SPEAK TRUTH AND LOVE" at all times. There were 1,000 kids there being pumped up by scripture, song, fun games, small groups and spending quality time together.
Do you ever just fall to your knees, finally ready to hand it all over, but the words just don't come? What am I suppose to ask for? I mean isn't it obvious? How do you start? I do know that it helps to start with a compliment before you ask for something. OK. God, hey, great job on watermelon. I mean, I love it, my kids love it. I've really never met anyone who was like disgusted by it. I ate a whole watermelon every two days while pregnant with Luke. He is finally eating it again which is now adding a seventh item to his "I Will Consider Entertaining the Idea of Eating This" list. So bravo. Ok, so I think that was a strong start. Let's get into this... Maybe I am supposed to lift my head to the sky and like look up to heaven. I've seen them do this at church. It will help you hear better, I think it helps to look up... Man, my fan is dirty. I wonder if the Shark Professional Rocket Handheld vacuum is really that easy to use on fans. Who knew that this was a much needed demand of the everyday housewife, attachments to clean your fan? Well, I am clearly not as concerned about it as I should be. I bet that would change if I had that vacuum. I would have the cleanest fan ever.
Then my mind goes quiet, white, and I realize why the temporary obsession with the Shark Professional Rocket. It was on a loop in the hospital while we were on the floor. Funny how, what seems to be, an inconsequential background noise, ends up being a big part of the soundtrack without you realizing...
36 hours into our month long stay in at the hospital, my 3-week old had experienced CAT scans, MRIs, EEGs, EKGs, labs, and ultrasounds. The errands of tests had eerily slowed to a halt and we just sat. We sat until an army of interns, residents, fellows, and attendings all came in with their most composed and compassionate look they could muster. They had probably practiced in the mirror when they found out they were doing a rotation on the neurology floor. I could tell about halfway into the speech that the little girl in the back was going to remember this moment for the rest of her life. The time she gave a family this incredibly rare diagnosis. She and her boyfriend would talk about it at dinner and he would insist she get the chocolate brownie since she had such a rough day. You could tell that they were soaking in the lessons of bedside manner from the neurologist. It is good to get down on their level, look them in the eye. Use a calm, nurturing tone. Be thoughtful with your words. Remember, this is their child you are talking about. She kept talking but I was replaying the probable pep talk they had before and the debriefing after. I don’t know why but I really wanted to follow them out of the room to know how they thought it went. As she spoke, she leaned on the corner of the wall. It had a plastic corner-protector-thingy on it and it kept squeaking. Did she not notice or was she too nervous to stop her rocking? They had print-offs for us that they had surely read themselves too before entering. Giving us the diagnosis of Tuberous Sclerosis, a disease that affects one in 6,000 births and that has no cure, they were sure to tell us. After the news was broken to us, the doctor pulled up a chair and put her elbows to her knees. “We have a few options…”
After numerous medications were tried the topic of surgery began to creep into the conversation. At first I was offended at the nerve. I had only washed that little head with baby shampoo a handful of times. I hadn’t figured out which way to part his hair yet with that stubborn cowlick. The same cowlick that had made me worried if he would be made fun of a few weeks earlier. So now, this head, this perfect head, you are going to open? Yes. Because sometimes epilepsy happens because brain waves misfire and sometimes, like in Luke’s case, his seizures were coming from, what looked to be, a hot spot. This tuber in his left frontal lobe needed to come out. This tuber quickly became my enemy. I hated this tuber and, within hours, I wanted to go into Luke’s head myself and get that SOB out of my child. Once it was out, Luke would be better and we would go home and we would all laugh about this one day. WHAAAT? You had brain surgery? No way! I saw him up speaking at the ESPY’s about his rocky start but how he battled his setbacks and was a better golfer because of it. He thanked his mother for always fighting for him. We would both cry. I would give that silent smile/ wave that you do when you are mentioned in a speech and it would really be a beautiful night. Ok, so I am on board. Get the tuber out and we are going on the PGA tour in my retirement. I’m sure that they have amazing scholarship opportunities for a resilient and adorable young man.
So surgery was the answer. And for ten days after the surgery my dream really started to take hold. They got the tuber out. Luke stopped seizing. We held our breath for the first week but by day 10 we were back to tummy time and peek-a-boo when they started back up again. The first one I actually just started at. Am I seeing this? Is this happening? But they kept coming. And coming. And coming. By that weekend we were having 30 a day and the doctor’s told us there was nothing else they could do for us except put Luke in a Phenobarbital induced coma. We politely asked them for discharge papers and headed up the river.
It seems really selfish to learn a lesson from your baby’s brain surgery. It seems even more whacked to take said lesson from brain surgery #1 and apply it to impending brain surgery #2. But I am in the business of sucking every drop of growth and joy for every experience I have. Why the heck not? This storm is not going to pass. The last surgery didn't wrap everything up in a nice clean end of chapter and the next surgery we are considering will not either. I got sucked into a quick fix last time, into creating the narrative that I thought I wanted/ needed. (Award shows, cowlick problems) But I realized a long time ago that I can fight my tail off for my child, but I am not calling the shots. This surgery may help the seizures. His development may start to progress. But Luke has a genetic disorder. It is not giving up hope to accept that. God made him this way. I will not pray for Luke’s TSC to be cured because this is who God built him to be. It almost seems like I would be asking God to fix a mistake he made. And that doesn’t happen, right? So, asking for things to be different than they are seems like I am without faith. I want Luke’s seizures to stop. I hate them and they suck. But God knows that. My point is YOU can pray for Luke to get better, stop seizing, be cured, be normal. Actually, I would ask you to do that for me because I can’t. I can’t stay in that space of unease/ angst/ disappointment. I have had to transition to another place for a long-term stay. My prayer is different. I will pray for strength and wisdom and courage. I pray for acceptance of this beautifully messy life that I have unexpectedly been blessed with. I will pray that no matter what is thrown our way I will be strong, but more importantly, be kind.
You can pray for the storm to pass, and I will pray to learn to dance in the rain.
There is this really weird moment that happens to new moms a few weeks into the whirlwind that is life with a newborn. You look around and realize, the laundry is done, the dishwasher is unloaded, you have showered and pumped, hell, you may have even done your makeup. You've made your bed and eaten. Your baby is sleeping and you may have gotten 5 hours of sleep the night before, so you are feeling rested. Holy crap... I think I am done. I think I am going to have a moment in real life what Instagram momming looks like. I am going to sit down and hold my baby and relax, or at least try to. It always sounds like something I would want to do, but I suck at it.
This moment happened for me on July 18, 2013. Three weeks after having Luke, I was battling a little postpartum and hiding it perfectly from everyone with chores (I am a terrible actress). I remember seeing pictures of people clean and rested and happy with their baby on social media and I couldn't wait to give it a try. Oh Desiree, who will you choose? I went with The Bachelorette as my choice. Its a fun thing to watch with friends from work and make fun of each other for liking guys we consider tools (because they all aren't?). So you have to know whats coming... right? Luke starts doing something so weird with his body. He gets really tense and his arm starts flapping around. I remember my pediatrician telling us not to panic when babies made weird movements. They startle easily, ya know? But then he starts crying. Then it happens again and he cries even more. My baby didn't really cry. Something was wrong. I called the pediatrician and they sent my call right over to Kosair and they recommended we come there right away. Now, I am not going to say that I am a laid back person. Most of you are giggling right now at the thought of that character trait being associated with me. So I own it with pride, I am intense, borderline aggressive. I blame my mother, per usual. But honestly, I don't even need a scapegoat because I love it. But my point is, I am not laid back, but I am also NOT an alarmist. I did not want this to be something that's answer was "Kosiar". I preferred the answer "Flintstones vitamin" or "warm bath". So I waited for Steve to get home and we left. I sat in the back with Luke with the instructions from the nurse to "make sure he didn't stop breathing" and sang to him while texting our parents. We pulled into Kosair ER and checked in. I remember being abnormally nice to the receptionist which is a weird, yet helpful trait I have through all my experiences. For some reason I very badly want to be viewed as a 'normal person' or 'kind'. Call it fake because, my Lord, sometimes it is, but its a safer place for me to function for myself and everyone around. We went back in the room to meet the first of 8 people asking for symptoms and to see the video I took and to 'take a listen'. You have to remember that Kosair is a teaching hospital so many of the first few people you see aren't your doctor, they are updating your doctor on what the heck is going on. Save your energy for them. Luke was screaming at this point and he hadn't had another episode since we had arrived and I got the feeling they felt like I was making this up. Its a guilty feeling to want your kid to do the thing that made him scream so that they could see you weren't crazy and they could send you home with your vitamins and a pat on the head. The nurse came in with all her experience with babies to 'get him to stop crying' with this special hold they only teach you when you are an ER nurse and a grandma. This was going to do the trick... I'm sure if it was reflux it would have. But, as we found out 36 hours later, it wasn't reflux. I didn't need to stop eating wasabi peas and nursing. It was Tuberous Sclerosis. The disease that would take us from the ER, to the neuro floor, to the ICU, to the operating room, and home all in a matter of 4 weeks. Those 4 weeks of sleeping on the floor and blowing my hair dry with the hand dryer and living on coffee and cookies changed us all. I went into that hospital a little girl, scared and unsure, and I came out a warrior. So did my family. At this point we can activate our call to duty in a matter of minutes. Bags are packed, communication is in place, people jump into their roles in seconds.
I guess the main reason I want to share this story, other than to fill in holes, is to say that we aren't living a different life this week or month because this blog has begun. I didn't start writing because things are especially bad. I started writing because, for the first time, I can. We have been living in this climate for a long time. We have the outerwear. Our hair has adjusted to the humidity. We've been here. The weather may have changed a little, but it isn't dramatically worse. Some days there are storms and some days are sunny. Tornado, snow, rain, random hurricane, sun, wind... we are ready. We love that you came to visit, but to us, this is home. This is long term. Seizures may come and go, but this place of TSC is our lifelong climate for our whole family. Its weird and hard and exhausting, but we wake up everyday, check the weather, and dress accordingly.
Mother of two amazing little boys, one who just happens to be a TS warrior.