It crept up on me.
Like a sniper in the digital night, I drifted, unknowing.
Scrolling back through my camera roll, years, searching for an image that was strong and true, yet safe enough to share with the world.
I looked for a picture that said, “Look where we were,” so that I could better celebrate, recognize, where we are now.
You see, every once and a while, I can’t feel it. I don't get it.
The gratitude becomes normalized and I am not enveloped daily by the beauty of the growth.
I can't appreciate the victory of going from 10 seizures a day to none.
I find my pragmatic self-reminding my optimistic/ romantic self that Luke, my 4-year-old, is still non-verbal. The developmental delay makes social events and even errands impossible at times. But when I start feeling sorry for myself and my inner voice sounds more nasally than normal, it is good to remember where we were.
When the chip on my shoulder starts to give me back pains, I know I need a jolt.
So, I keep looking. A video of him trying to walk when he used to fall constantly?
Or when he used to try to feed himself but his arms were contracted and he couldn’t use his hands?
Or when the only place we could play and I could relax was when he was wedged in the cheese pit at the gym?
I scroll through an old album, click on a familiar thumbnail and as soon as the video starts to load (my phone is a 5S and is no longer enjoying its role of running my work and personal life all while being chewed on) I start to panic. I know what it is, but I can’t get it off. My phone is now, more determined than ever before, to play this video and is ignoring my aggressive attempts to go back to the main menu.
The image is frozen but I see his long arms stiff and straight. The first frame of the video lingers on, loading. I see his eyes rolling back and to the right and his head in my lap. My breathing stops. The video starts.
Whffff, Whfff, Wffff.
Whffff, Whfff, Wffff.
Whffff, Whfff, Wffff.
Luke seizing. Stiff. Distant.
Luke seizing. Gone but trying to break though.
Luke seizing. Seizing. Seizing.
And 3 seconds of a moment that was so normal to daily life that I never considered the emotions it could evoke.
3 seconds brought a wave of fear and sadness and terror that I thought had been properly grieved and processed and mourned.
3 seconds of an event that happened 10 times a day every day for years, if not more.
3 seconds of a video from two years ago and the tears came for every evil seizure that crept up on us and tried to drag my baby off into the darkness of night. We played a tug-of-war for his life for four years. Doctors, family, friends, therapists on one side and the benign tuber that was causing refractory epilepsy on the other side of the rope.
The tears came for the boy Luke was trying to be.
Free. Independent. Curious. All relentlessly interrupted by the chaos of the storm inside his head.
The tears came for the mom I was trying to be.
Brave. Faithful. Strong.
As I cried, I felt relieved and almost excited to finally be having a breakdown (me= psycho). I thought this meant that some of the pain had caught up with me and I was finally able to pack it away once and for all. I mean, I thought I had properly stored it away for the offseason. Yet it came tumbling out of the closet like a bin of old blankets crammed away for summer.
So, like any unforeseen mess that life brings, I took a breath and asked the mess why it was here. Like running into an ex at a bar, I fumbled over myself trying to put a coherent idea together. I rambled in my mind about why I needed this ‘emotional breakthrough’ and why it was good and how healthy and healed and whole I would be once I was done crying and it was over.
I took a breath and laid down on my pillow and the pain that I had packed away, draped over, covered me, and tucked me in as I cried myself to sleep.
Pain is not something that you can surpass. You can shelve it. You can put it away and pack it up neatly, but, while sitting on the shelf, it does not disappear.
It waits for you. It waits until you are ready. Ready to pull out the cardboard box from the basement of your heart and try to figure out what it even is anymore. The longer it sits, the harder it is to make out what it even was to begin with.
But pain, I have found, is like the monster under your bed. You create the grandiose ideas of its powers and strength. The longer you lay in the idea of the pain, the more horns and teeth and snot it has. Until you muster up the courage and peek under the bed and realize it is the sock you have been looking for and a sippy cup of old milk, do you realize that you should have just looked under the bed hours ago.
As I dug through the layers of sediment for my fossilized emotions I excavated something else that had enveloped the pain. The emotion that seems to coexist with pain and fear, but when it is unpacked and cleaned up, refurbished, it is left to stand alone.
The real reason I was in the fetal position that night.
The real reason I was a puddle of vulnerability.
The real reason that I was going to be ok.
What I had unpacked was Love.
It was love that had me wanting to throw up.
Normal for you to love something so much it hurts. It brings you to tears. It compels you to use hashtags such as #soinlove or #loveyoutothemoonandback.
Normal to you, maybe.
But not me. It was dangerous to love Luke with all my heart and all my soul. It was hard because I was always almost about to lose him. I couldn’t love him with this full whole love because what happens when the seizures would snatch him from a puzzle or a bath or a nap? I couldn't gaze deep into his eyes because he was rarely behind them and when he was there and you got attention you knew he could be ripped away at any second.
The video reminded me that I had forgotten it was dangerous to gaze and love and adore.
Seeing his eyes roll in his head and hearing the chill in my voice... I sounded so brave.
But I couldn't feel courage because I couldn't feel anything.
I had felt nothing just in case fear or loss or despair tried to creep in the side door. That clip made me feel as though my heart was removed from my chest and placed on a peg in a Whack-a-Mole game, ready to be demolished in one heavy swing.
The year and a half away from the seizures had given me the luxury of forgetting. And what did my romantic, rash, ridiculous self do?
I went and fell in love.
So why was this love so painful? Why did this love hurt? Wasn't I supposed to be happy, not aching?
So, I sat with that raw mess of a feeling for a few days.
Much like a fitted sheet for a bed, I knew there was a way that others were able to neatly store their stockpiles, it had even watched tutorials on the process. So easy! They mock back at me. There was no Pinterest Hack for this one.
I tried so hard to shove it away, but the exposure to light and air had made the truth swell and grow and it no longer fit back in the sturdy, compact box it had emerged from in the dark.
And then, during the exquisite reunion of Real Housewives of Beverly Hills, while I was clearly and successfully in the process of numbing and escaping from all of this exhausting growth and self-discovery when Pain came barging in like the Kool-Aid man demanding to be heard, completely interrupting my Nachos and Chill time.
The can had been kicked to the end of the metaphorical road and the time was upon us. This visitor was here, again, to remind me it was time to feel and think and emote and process.
These are things I typically try not to do past 10p.m... for health reasons.
Pain just stood there, quiet and awkward and made me look at it. Stare at it. See it for what is was then and what it was now. Then, Pain raised its eyes to mine and lifted the black hood away from his face and off his head.
And revealed who he really was.
There stood Love.
Pain, that I had tried to pack away was just Love that I had sent out into the world looking for a home and was met with a No Vacancy sign.
It was chronic illness.
It was divorce.
It was loss.
It was Love that was given, sent out, but never took root. It was the Orphans of Love that had to transform and adapt to survive in this scary place far from Neverland.
It was Love that didn't feel safe and protected so it had to bulk up and try to be tough.
It was Love that stood there trying to fool me with a mean mug and a wifebeater (I honestly have no idea another name for this particular undergarment).
But, come on. I teach 3rd grade, for goodness' sake.
You can’t get me with that move.
You can cock your head to the side and cross your arms and shrug and grunt, but I've got your number.
When you finally let Pain come out of the front lawn and into your heart, when you get the Pain to come out from under the desk and walk with you down the hallway, holding his hand, when Pain decides to come out of the alley and into the light, you see that it is just Love that was scared and alone, left to fend for himself.
It was Love that was afraid it would be told ‘no’ or rejected or ignored or lost and so it morphed into Pain and tried to hurt you first and beat you to the punch.
It was Love with no one to tell him to turn off the tv or eat his vegetables or use his manners.
It was Love with no one to read him a story or pray with him at night or put a Band-Aid on an invisible boo-boo.
It was Love that was packed away to be dealt with later, clearly with no place to fit for now.
But I see you.
I’ve seen enough 9-year-old boys on the playground “being mean” to girls to see through this charade.
Pain, you are just Love trying to not to be seen, not be caught in the act.
Your longing to belong and invited is now absurdly and offensively apparent.
Quit chasing me and making fun of my training bra.
Quit whispering and giggling.
Quit trying to pull my hair, I know you love me.
What do we tell the girls on the playground when the boys won't stop "picking on them?”
You want the game to end?
Running feels beneficial because it is forward momentum.
You are moving, you are doing.
But those years of running might as well have been on a hamster wheel. It's like the video of the person who falls in the pond and they are screaming and flailing and getting themselves into a tizzy and then someone says, “Dude, stand up.” And they realize they are in 3 feet of water.
Dude, Steph. Stand up.
Chill. It’s not a nervous breakdown.
It’s called Love, ya lunatic.
If you have talked to me in the past few months chances are i said, "podcast" so much that it made you never want to listen to a podcast ever. I may have even uploaded some in your podcast library. Go look. You may not have been watching.
However, if my aggressive love turned you off from podcasts for your entire life, please make a tiny exception. No, not for Brené Brown on Oprah's Super Soul conversations, while I will still argue that this (along with Elizabeth Gilbert and Glennon Doyle) is life changing,
The podcast is continuing education for our deeper understanding of Tuberous Sclerosis and epilepsy with candid and honest interviews from the doctors that saved Luke's life. I am hopeful that others may hear Luke's story and find the courage to fight for their child's life even when those around you may disagree with your decisions or dismiss your hustle.
Keep on soldiers. Do you, Boo.
Click HERE to link to Texas Children's website and listen to podcast OR go to podcast though iTunes here.
If you search in podcast just type in Outcomes Texas Children's and you should be linked right to it as well.
I'd like to leave you with an oldie but a goodie. If you want to feel your wisdom quantitatively, this song is 18 years old.
To quote The Hova-Man, Jay-Z for your young guns out there:
I'm a hustler baby. I just want you to know.
It ain't where I've been. But where I'm 'bout to go.
Telling the story never gets old. I always learn something new about the Lease that was entrusted to us in Luke and how it has changed, enriched, derailed, and, ultimately, trumped the Master Plan I had for my life.
Thank you to Associated in Pediatric Therapy for being a part of our team and our family. There are many days this is pretty lonely work and having APT is an important piece of my Sanity Solution. Click here to see the monthly newsletter spotlighting Luke as the Patient of the Month!
Thank you again to John Ramsey from Wave 3 Listens Live! He was legit honored to meet Luke and made us feel so special. A live show could have been a disaster, but other than wiping Luke's snot with my bare hand in the middle of the interview or my randomly intense southern accent, I think it went really well.
Writing tonight will be an acrobatic event, hovering above the darkness of physical and emotional exhaustion. This terrifying new extreme daredevil event is called actually feeling your actual feelings for once in your life. I know, scary. Crazy. Dangerous. So I apologize ahead of time if I sound like I have a blanket wrapped around my head, self-medicating with cinnamon rolls 'cause I might be...
So, on that ominous beginning, let me do a full mania and seemingly contradictory swing and say that Luke's trip was incredibly powerful and awesome. The doctors beam when they see the glow of clarity and growth that they gave us. They lifted the veil back and allowed Luke to see the world and the pride coming from their eyes is beyond professional and ego, they can see his light.
Time has given us the lens to see how remarkable Luke's progress really is. Not everyone has that- a neurologist who loved us enough to send us to Houston. Not everyone has a community to support them and lift them up. Not everyone is a candidate for surgery. Not everyone is a candidate for the less invasive approach of laser ablation. Not everyone stops having seizures.
It feels like being a passenger on the sinking Titanic, freezing out at sea and you see a rescue boat or ship or what-have-you. So this recuse boat comes wadding through the thousands of people freezing and drowning. You watch the boat carefully scanning the wreckage, the spotlight cautiously, precisely picking through the victims. You see the boat and realize how far you are away. You are in the worst possible position to be seen or helped. You hold on tight to your life raft, your hope and Leo for as long as you can, but in the back of your mind, you make peace with the fact it might not be your turn to be rescued. Then, the spotlight finds your face and stops, dialed in. You are to be saved. "Captain Curry" (Luke's surgeon) pulls up and yanks you out while the rest of the team rushes to give you steamy, hot cocoa and those weird aluminum foil blankets people wear after marathons, sending you back to live a life that wouldn't have been possible for Luke to live 20 years ago.
And I told myself I wasn't going to use analogies. I might as well have tied frostbite, Celine Dion, and the Heart of the Ocean into that one. Geez.
We were rescued from a life that the diagnosis of TSC used to mean for parents and families, but we were not saved or healed or fixed from TSC. These check-ups can be positive and hopeful, but replying, "Our Houston trip was great," devalues the reality of chronic disease.
I don't say this to be Eeyore.
I don't say this to be dramatic or attention seeking or a martyr.
I say this because I don't want to lie.
When things got tough and gray and uncertain with Luke a few years ago, I lied to people and told them that he was ok, that I was ok. I did this, not because I am a private person, as you may have gathered from my constant oversharing, but because the truth made people physically uncomfortable or start crying or speechless or get hives or start to moonwalk out of the room. I actually felt guilty and apologized to people when I told them the truth, like I kinda ruined their day.
I am going to share the hard stuff with you here, now, so when I see you I don't lie straight to your face. I guess that is a good place to start when working on self growth.
1. Luke probably won't talk.
No, I have not given up hope. No, there is no way to be certain. Yes, Luke is a walking, flapping, giggling miracle. But, I went to Houston to ask hard questions that may not have clear answers. We didn't fly there for a What-A-Burger and barbecue, albeit worth every calorie. We went to ask questions, gather data from experts and bring it home to our spiritual team and to our medical team in Cincinnati.
Here is what we have. Luke's left frontal lobe was removed at 5 weeks old. Luke has had two bajillion seizures. Luke is 4 and a half years old and the typical speech development window is closing.
My takeaway from this is just sadness. This is just sad for me. Not surprising.
Just sad, ya know? Sadness has been bumped to the wings, replaced by resentment and blame the past few years, thinking that was a stronger approach. But come to find out, it is so much safer and less toxic to be sad as opposed to angry. Yesterday and today I even tried out the whole crying thing and I think it might have helped. Who knew?
2. Luke's recent twitches may/ could/ might be seizure activity.
For the record, I am still owning the hashtag seizurefree, but, just like most things in life, there is continued fine print. Luke's EEG captured NO seizures, however the brainwaves were much more chaotic than what was captured back in March. This, coupled with this myoclonic jerking that we have noticed, may be an indication that something ugly is brewing in that cute little head of his.
However, this is where I put on the breaks. We are not going too far down this road to our Hypothetical Hell. We will go to Cincinnati in the next few weeks for an overnight EEG study where we can capture more comprehensive data and then we will decide whether or not to freak.
Uncertainty, this uncertainty, is just scary.
It's not surprising.
Just scary. I know we will wade through the waters together. But no one can walk through it for me. I have gone nose to nose with TSC before and Luke holds that victory. But this adversary, fear, is something I have been trained to avoid at all costs.
This time will be different though.
This time I will look fear in the eyes and see it and feel it and face it. You gotta know who fear is and what it looks like and feels like before you can be fearless. There is no way to bypass this standoff with fear. There is no wall high enough to ward off these the Gremlins of Fear. The fear that as long as you don't feel too much or celebrate too much or love too much, you won't be hurt. No matter how much we try to protect and guard ourselves from the hard times, sadness and fear never stop taking our breath away. We love with a disclaimer always swirling around in the background, whispering to us This won't last or The other shoe will drop or whatever falsely "protective" cliche that extinguishes our joy in the present and creates unsubstantiated anxiety for the future. When we do this, we look back and kick ourselves for missing the moments. The small ones, the precious ones, the ordinary ones flooding our day. Moments when, something is so overwhelmingly beautiful that if I paused from my chores for too long and notice it and feel it and appreciate it, afraid if it is stolen from me, I would crash to the ground and shatter...irreparable. But then I remember that we were plucked out of the icy waters of the certainties that used to be given to kids like Luke with TSC and, now, we are lucky enough to be able to live, with the rest of you fools, in the Land of Uncertainty.
May we all be brave enough to tell the truth to each other and ourselves, lean into love a little harder, and be brave enough to be scared because there is only one thing certain in the Land of Uncertainty, and that is that nothing is certain.
What I’ve learned preparing for and returning to Houston...
1. I had lost perspective on the gains Luke has made.
There is something about having him in this same hotel room, the airplane, the hospital waiting room. There is something about those places that qualify his growth in ways that Home could not. The furniture in the hotel room was all 'safe enough' to stay in the original place. We don't have to pad the floors. We don't have to put a towel down in restaurants to protect Luke's head. The nurses ask questions like, Now, can he still not use his hands? or Does he still fall all the time and bump into things? or How is his eye contact?
This place forces me to zoom out and in doing that brings me to this...
2. I, come to find out, may be a mess.
To be continued on that one. I have tried to write a few times, but, whew, I think I need a bottle of wine and my girlfriends before I am ready to even try.
3. This place makes me brave enough to be scared.
It forces me to confess that I would actually like to know if he will ever talk. It makes me say out loud that there is a twitch that he is doing that makes me nervous. It makes me ask what the future miiiiggght look like. But I know that being scared doesn't mean that you aren't brave and it also doesn't mean that you lack faith.
Tomorrow we will ask the hard questions. We may get tough answers. Even tougher is the possibility that we may not get any answers at all.
The uncertainty of TSC is nothing special. Everyday we all wake up and have no idea what the world has in store. There is discomfort in this but anytime discomfort there is growth. Once we push through that muddled mess, our faith and love is what remains and courage stands by our side.
My memory is terrible. Thank goodness.
I had forgotten, until returning to the TS Clinic in Cincinnati, how bad things used to be.
As Luke galloped around today, flapping and giggling, in the waiting room I flashed back to a memory from last year.
I remember shuffling behind Luke, holding the back of his shirt to catch him before he hit the floor when the seizure would take hold.
I remember running into the hallway holding Luke, yelling at Dr. Franz to hurry up if he wanted to see Luke seizing with the hopes that him seeing the episode in person would unlock some secret to our freedom.
I remember coming in for a check-up and bringing an overnight bag just in case they admitted us.
My mind has held these memories captive, protecting me, guarding me, until it knew that I was ready.
I was able to remember today because time is magical.
Ten months of smiles and eye contact and hand holding and hugs that don't end with the tonic-clonic rigid pulsing that I had grown so accustom to.
Ten months of memories made at school and therapy and church and our new home that don't get washed away multiple times a day by the storm.
Ten months of being a son and brother and grandchild and friend, not just a patient.
I once thought time would heal by helping us forget, but time is what allows us to feel strong enough to remember.
You know better. You know things aren’t as simple as they look in the pictures, but you can’t help yourself. You see friends, family, strangers even, with their cute little families eating pizza on the couch taking a selfie. You can’t help yourself from getting excited. You scroll to see another couple with their sweet, sleeping newborn sitting on the deck somewhere relaxing over some appetizers.
As your own child grows inside you, you can’t help but create images of the moments you and your family will have together. The park. The zoo. The pool. Target. Road trips. Ball games. Standing in line for a hysterical picture with Santa.
After Luke was born, we were on our way to this life, to these moments of happiness that I was sure would bring me joy. I figured it would just be a matter of time before we could parade around town running errands, visiting friends and making memories.
Don't laugh. I was young. Naivety is a precious thing.
But life, as we know, had other plans. And at 3 weeks old, we found ourselves bringing Luke to the emergency room.
We didn't even realize Luke was seizing and I started to second guess myself as the nurses in the ER tried to soothe him, figuring I was just an amateur with a colicky baby.
Within a few days, we found out that unfortunately we were not overreacting and were given the diagnosis of tuberous sclerosis (TS). Those words, when given to us on day two of our stay, meant nothing to me...but on day 16, when our 5 week old baby was wheeled back to brain surgery still being bombarded with seizures, the gravity of the diagnosis was beginning to take shape.
Luke’s seizures stopped after surgery for only 10 days. They returned with a tsunami of more than 30+ a day and we were right back in the ICU when the local doctor informed us Luke was not far from being placed in a medically-induced coma and this was to be his life. He told us we needed to except that there was not much more we could do.
We decided to kindly ask for our discharge papers and traveled to a hospital where they had a TS Clinic. They told us the disease was a challenging one, but they were going to do everything they could for Luke. And they did.
Traveling to a place where you feel loved and safe, at that point in our life, almost felt like those family vacations we dreamed of. It was our time to get out of the house, pack, eat lunch in a restaurant (the hospital cafeteria) and even enjoy just the simplicity of the drive.
TS doesn’t fight fair, even against the most reputable doctors in the field. We had moments of victory, but the therapies, diets and medications were no match for the growths in Luke's brain.
The disease was dominating Luke’s body, our family and my joy. When that hospital told us it was time to consider another surgery, I was hesitant for two reasons.
First, the previous surgery, in which I was so confident, was unsuccessful. I, his mother, had pushed for a surgery on my 5-week-old baby and it didn’t work. I just wanted it to be fixed and over, ignorant of the life marathon that is chronic disease. I wanted to get back to my life and my vision of what things were supposed to be. I was determined this would just be a speed bump on our way to “normal.” That one day, I would tell Luke the story of his time in the ICU and he would listen, roll his eyes and pull back his hair for the millionth time to show his scar and prove his mother wasn't a complete lunatic.
I live everyday wondering what part of Luke we lost when they removed part of his brain. Our doctors today have assured me over and over that it was the right move, even calling it an “emergency surgery," but it doesn't take away my questions.
The second reason I was apprehensive, was that our clinic, our home, our safety net, had told us we would not be having the surgery with them. We would be having the surgery across the country with strangers in a new land: Houston, Texas.
As we boarded the plane to Houston during fall break for our pre-surgery visit, my friends headed to the beach or camping. They were going to live the life I had envisioned for myself and my family. So I forced myself to believe this trip was better than any moment I could have imagined for myself. I was going somewhere that had something those places couldn’t give me … hope.
And then we walked into the West Tower of Texas Children’s Hospital and I got it.
Some people get that feeling when they hike to the top of a mountain or gaze into the awesomeness of the Grand Canyon. Some sit on the beach and let the waves bring them back to center or stand on a glacier and recall the centuries of life it has endured.
I was bombarded with that feeling at every turn at Texas Children’s, through valet, on the elevator, in the waiting room and appointments with doctors. The feeling that you are right where you need to be. The feeling that you are not alone. The feeling that, no matter what, we are going to be OK.
The visit concluded that Luke was having about 10 seizures a day and his brain activity, when he was not seizing, was just as chaotic. Luke had been backsliding developmentally and we were running out of time.
We headed back to Houston for surgery with no idea when we would return home or how many surgeries would be needed. And finally, after working with the team and knowing their hearts and their talents and their teamwork, I knew I could trust the process.
Sure, I wanted to be able to be home for Christmas, or know when we needed the hotel room, when to book our flight home or when I would get to see my 18 month old baby at home, but we didn't have these answers because we weren’t leaving until Luke was better.
That was as much of a plan as I needed.
The team wasn't shaken after Luke's first surgery when he began to seize only hours after they had removed part of a tuber and placed depth electrodes to monitor. They assured me from the beginning that this wasn't a simple process. They explained there were many steps to their method. They explained the reasons why there were no definitive answers until we were in the trenches.
And I heard them. But I really didn't get it until the seizures continued and I realized no one was defeated. The electrodes were in and the doctors were getting the most precise data possible.
Luke seized. The team collaborated. Surgery number two was scheduled. The tuber that thought it had won was finally defeated by a laser and a doctor in cowboy boots.
We left Houston in December 2016 and Luke has been seizure free since. I am beginning to have moments when I think, this must be how it feels to be the mom in the pictures.
Swim lessons. School. Sprinklers. Church.
These moments are precious, but I am no longer waiting on some moment to bring me joy. I am determined to find joy in all the moments, whether it be in a hospital room or a hotel room.
This disease may be stronger than medicine or therapies, but it is not greater than my joy or my love.
We all take a broken road to get to the place that changes our life. We stumble and fall and are disappointed at turns we did not intend to take. But this broken road leads us to a place of hope and strength. When we find a team that we can lean on, if only for a moment, it gives us time to breathe and remember who we are.
We were chosen to live this life. We were chosen because we will settle for nothing but the very best for our children. We will fight. We will sacrifice. We will question. We were chosen because we will not let these diseases take our hope.
And we were chosen because, no matter how our story unfolds, we will choose joy.
Thank you so much to Texas Children's Hospital for highlighting Luke's story. Our hope is that sharing what we have endured will help others not give up on finding the places and the people that will stand with them on the battlefield of chronic illness...or whatever battlefield you stand on today, feeling alone and tired.
Click here for link to Texas Children's website
WELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I revisit this poem because it reminds me that it is ok to be disappointed.
It's ok to wish that I was with everyone else beebopping around Italy.
It's ok to want to smack those who complain about a layover they had on the luxury jet or their sunburn from the beach or their hangover from too much wine... you poor thing.
And... It is ok to admit that Holland was not my choice.
It is NOT ok, however, to act like I may have at 15 years old, pouting because my friends were responsibly and legally relaxing in Panama City, FL while my parents had the nerve to take us on a family ski trip to Utah.
I will try not miss the beauty on this hypothetical family vacation, consumed in my own sulking and self-pity.
This time I will smell the tulips, I will visit the windmills, and I will stare, in awe, at The Rembrandts, no matter how much I don't really get them.
It gives me peace to know that it I am not expected to understand.
I am just expected to appreciate.
I really don't like movies unless they have a happy ending. I am a brat like that.
Why would I want to sit around for two hours to see people unfulfilled in the end? That is silly.
So why does it feel so awkward or unreal that this is the ending to the Houston Chapter of our story? Why is it hard to process? Why does it feel like a dream?
I have had to work through some serious emotions in the past few years, and let me tell you. I look forward to this challenge.
Thank you all again for projecting your cheers and prayers so loudly that we could hear them in Houston.
We are home. We are safe. We are eating Cheerios.
All is right and good.
So, let's turn the page. I'm ready to see what the next chapter holds for us all.
I was ready for the bad news.
I was braced and prepared for decent or mediocre or difficult.
Who would have thought that it would be the good news that left me speechless.That brought me to tears. That brought me to my knees.
Another big day ahead.
But first we stop to be grateful.
We stop to say thank you and we feel you and we love you.
We stop to say that hope was a powerful weapon and much easier to get through security.
We stop to be still and know.
And then... you know the drill.
We continue to march..
Three and a half years ago we walked back into our home after a month long stay in the ICU, hundreds of seizures, brain surgery, and the loss of innocence and hope that comes with a new baby.
I walked through the house, my house, but I felt like an imposter.
The girl that once lived there was gone. The girl that loaded the dishwasher (sometimes) and moved furniture around and looked at paint colors... The girl who left the house just a few weeks prior did not return.
She didn't live there anymore.
I walked through the halls slowly and the crime scene of my bedroom replayed the memories that I had shut down for weeks. I looked at my clothes, my shoes, my makeup... they didn't look like mine. None of this seemed to fit with the person that had returned. It belonged to someone else.
She was silly and petty and naive and simple. And she was gone.
Since then I have said goodbye to a few versions of adult me... even as I go back to revisit videos and posts from Houston in December, I am shocked to say that She is not who I am today.
She is strong. She is on it. She is ready.
And really, I think I have gone soft.
All this happiness and growth and normalcy has ruined the ninja-warrior that I had considered myself to be.
At first I was disappointed.
And still, I miss her strength. I miss her steadiness. I miss her drive.
And then I realize that she can never be anything more than a ninja. You never hear about the other side of a ninja's life. Ninjas don't have hobbies, or friends, or family. Ninjas don't go on vacations. You don't hear about what church that ninja goes to.
No, because if you are a ninja, that is all you can really be.
I'm assuming there is a high burnout rate for us all. It really isn't a sustainable lifestyle, especially if you, like me, value connections with humans.
But I had accepted that this may be my lot in life and I would do it with pride and honor (you know, like a ninja).
You never know what will make you finally loosen that death grip on the sword. You never know when the release will come, but when it does and you are still standing there, lost and alone in the battlefield, you can finally just let go and walk away. You don't even hear your weapon hit the ground because you are already gone. Even with one foot still on the field, you have your eyes forward.
And just like that... You are ready.
Ready to join the world. Ready to be more. Ready to have more.
And so, as we travel to Houston tomorrow for Luke's 3 month follow up, I wonder, "Who will be boarding that flight?"
Will it be the girl that cries and eats chocolate while watching This is Us? Will it be the person who naps and snuggles and snacks and laughs?
Or will it be the person who holds her child down and comforts him during the hour long hook up to the EEG? Will it be the person who doesn't need food or sleep or water, just coffee and a shower?
Can those two people exist at the same time? Can a soft ninja exist and be successful? I mean, I guess, I shall expose the truth of my limited artistic exposure these days and reference, yet again, another animated classic, Kung Fu Panda. If that chubster could get his act together and defeat that brute of a leopard or whatever, then I should be able to Kung Fu my way through Houston again and be ready, albeit a little wobbly.
If that pudgy little panda could have a heart and friends and an appetite, all the while developing some killer ninja moves, then by golly, I can, too. .
So, there...it can happen. These two things, love and fight, can exist simultaneously. Crisis averted.
Tomorrow I will try to travel to Houston armed with faith and hope instead of a sword. Tomorrow I will try to enjoy my time with my baby and my mom. Tomorrow, I will try out what it feels like to be Luke's mom and, this person I have become, otherwise known as Steph, at the same time.
Every once in a while, the stars align and, yet again, you get to lease an angel. All the dead ends and speed bumps along the way make it worth it because the road brings you to these people that you feel honored to bring in to your child's life. Therapist, respite, teacher, nurse, doctor, surgeon.
This is their job.
They downplay their role in our life. They try to turn it around to give us the credit. They discount the magnitude of the joy and relief I feel seeing him connect with others outside our family.
They love him and they get him. And they get me, which is also a task. When I see Luke run to any of these people and embrace them, I feel a tightness I didn't even realize that was there, release. He is going to be ok. One day, when I am not here anymore, he is going to be ok.
Knowing they are my safety net. Knowing that they pick up what I miss.... That is the reason I am ok. That is the reason Luke is ok.
Luke started school today. Now, not preschool in a conventional kind of atmosphere. We aren't there yet.
Today he started homebound school. This is a program for medically or emotionally fragile students in public schools to still receive an education, even if they can't come to school with the other kids.
So as the buses full of students pulled away from Mt. Tabor, where I work, I clocked out as a teacher and for the first time, I stood on the sidewalk and became just a mom. We walked into the building and I swelled with pride, hoping to run in to people in the hallway who have been praying for and rooting for Luke for almost four years.
We walked hand-in-hand to the classroom and I watched Luke explore and process his new environment with no fear and so much excitement and wonder. His teacher is someone I have had the privilege of knowing for twenty years and someone I have been working with and in awe of for 10. She, just like so many people who are in Luke's life, reinforces the Special in "Special Needs". They are people you pass in the grocery store and have no idea the lifesaving talents and gifts they possess.
When we first walked in I had convinced myself that it was just like another therapy session, no big deal.
But as we pulled out of the parking lot, it hit me. And yet again, the realization began to leak from my tear ducts.
Luke just went to school. Luke just used crayons. Luke just sat at a table... on tile...without a helmet.
Luke Harrison, the boy who had 15 seizures a day in December just went to school.
To the angels in our life now and the ones we have yet to encounter, remember, your drive to work might as well be in a chariot with trumpets blaring in the background.
I know you don't get paid much, but I know that money is not what fills the account that you value the most.
The work you do matters.
The work you do is noticed and appreciated and valued.
The work you do saves.
Thank you, Angels, for being available for lease...
I've decided to trust fall into the normal life. Luke could not be more precious and Sam continues to prove himself as my rock. Just now beginning to feel the fear that goes along with loving two people so much that it hurts...
It is like you are plopped in the middle of a show that everyone has been obsessed with. I have heard so much about it so I should know what is going on. Everyone assumes that I must have been tuning in, but I haven't. I have been rescued by trauma.
I was rescued from soccer and baptisms and preschool.
I was saved from these decisions. I was robbed of them.
When they were discussed by my friends, I scoffed at their petty little lives with their petty little problems. Yet here I am, plopped right back in to life, trying to figure out, for the first time in my four years of parenting, which sippy cup you use to wean off the bottle.
The bar was so low for so long. It was impressive that I brushed my hair and smiled from time to time.
This feeling of being normal is what I yearned for, but as I step in to Normal Suburbia, I have to say, it scares me.
Last year being a good mom just meant doing everything we could to get the seizures to stop. Just don't die.
This month being a good mom involves education, therapy, nutrition, socialization, religion, and discipline.
The fact that I am more tired, more annoyed now is weird.
I keep waiting on something to save me. A project. A calling. A path. A fight. But when I stop and wait for it to fall in to my lap, I am only met with silence.
This void was purposeful, yet all I have tried to do since we returned was to fill it up. But the void is not an opportunity to do more.
The void is supposed to be a void.
The nothingness has meaning.
I thought I was on my knees. I thought I had lifted up the fight and surrendered. But how dumb? How can you surrender and be still when you are still out there hustling?
These moments of silence. This discomfort was meant for me. I lied and said I knew I wasn't driving, but, come on, I had my hands on the wheel. My knuckles were still white.
But I sit here, 8 weeks later, pouting in the drivers seat, running on fumes. I have been down dead ends and backroads. I yearn for the interstate where I feel at home and free. But just like Lightning McQueen, I sit here in Radiator Springs trapped in a bubble of slow paced love with no highway in sight.
I've seen the movie a few hundred times, so I get the goal. I need to stop and smell the roses. I need to just go on a drive. I need to work on relationships. I'm no dumbie. I know how the movie ends. He loses the big race and the Piston Cup yet still wins a soul and a Porche.
So, I buckle down and start paving the road (he has to do that in the movie).
I need to slow down. I need to vacuum. I need to remember I have baseboards. I need to catch up on 3 seasons of Game of Thrones. I need to play with my boys...
When I am with the boys I don't lose this crusty, entitled attitude, but it just takes a backseat. Both the boys are like magic. They're sponges and learning so much everyday. The growth that Luke has made in a few weeks is monumental to us.
He looks at us.
He plays with us.
He cries for us.
He tries to get us to laugh...
He WILL talk. And I don't mean it in a "If you will it, then it will happen" kind of way. I mean it in a "Dude is going to talk for real" kind of way. He's smacking his lips and blowing raspberries and attempting to mimic my sounds when I sing to him. I push my nose against his and with his eyes wide he smiles in anticipation. I take a deep breath and he knows it is coming. Do you want to build a snowman? His smile grows and he waits for more. Or ride our bikes around the hall? I wait... BLLLUUUAAHHH he sings back. Our first duet.
It is not that I want him to talk so badly that I am saying he is going to talk. I am saying, the train has left the station. It is in motion.
The clarity in his eyes. The sound of his voice. The feel of his fingers wrapping around my hand to take me with him on his adventure. These moments are not unappreciated. They bring me to tears of joy.
When Sam kisses his brother goodnight and tucks him in. When they sit on the bed and watch a movie on the iPad. When they play peek-a-boo. These moments are not missed.
I try to soak it in. Maybe I am just not really absorbing it like I should. Maybe I am trying to multitask too much and this "all-i-need-are-my-kids" feeling is blowing right past me.
So I stop and try to remember how to chill.
I sit and play instead of putting away laundry.
We eat dinner together instead of unloading the dishwasher.
I lie on the floor and do 'airplane' instead of writing.
I am still, yet the chaos of the unknown new path swirls around inside of me.
If I were cool, I would try yoga or meditation to calm my brain and find some peace, but instead I find myself working on my issues through aggressive conversation in the car alone. As I drive to work, I chug my coffee and yell, "What am I supposed to be doing with my life?" I have decided that prayer is good no matter what. So yelling is better than years of the silent treatment.
If you pass me on Grant Line Road around 7:20 and you can't figure our whether I am in an argument or singing Alannis Morrisette either one could be true.
So when I realized that a racecar was the character/ person/ automobile that I most associated with, you can see why I have been less than inspired to share this discovery. I keep trying to make the turn on dirt and my wheels just keep spinning out.
My over zealous nature has left me in a cactus or two over the years, spun off the road from leaning too hard in. How many thorns must we pull out of our rear before we realize that its 2017 and cars can basically drive themselves.
"When you go hard enough left, you find yourself turning right". So like a New Age Budda, Lightning McQueen is finally the one who teaches me that the only way to get moving in the right direction is to stop moving all together.
30 days and 3 hours.
30 days and 3 hours of no seizures has already put the light back in Luke's eyes. He notices things that he never has before. He interacts differently with toys, food, and people.
These seemingly small connections are being made in his brain that will undoubtably pave the path for huge gains.
2017 has been an unbelievable year for Luke. We've spent more days than not, cozy in our jammies, eating bacon and doughnuts. We have snuggled on the couch and watched Elmo when Sam has been so kind to give us a break from the Choo-Choos, sipping chocolate milk and snacking on Cheerios.
Life is calm and good and beautiful.
I am supposed to put my battle gear away and 'enjoy this time,' but there inlies the problem... I don't think I know how to do that anymore.
For the past three years, I've done nothing but fight. Fighting through pregnancy and hospitalization and insurance and surgeries and more pregnancies and divorce and regression and medications and custody and more surgery.
And now... now what.
We walked out of The wreckage as victors. We came home to a Hero's Welcome. We were shocked and scared when, a week after surgery, Luke's brain pressed pause and sent him back to an infant developmentally, while it healed. He couldn't sit or stand or use his hands. Still... We kept fighting. Then, It was like we were standing in the middle of a medieval battlefield. Blood and sweat and hair flying through the air until Jan. 1, 2017 when the fighting suddenly stop. It was as though the Army stood up, put their weapons down and just walked home. It was amazing and creepy all at the same time.
The fight, all of a sudden, was over.
So, what am I supposed to do now?
The past year has made me in to a maniac of a fighter. The busier and crazier things got, the better, sharper, tougher I became.
And now that fight is over, I don't know what to do with myself. Who am I anymore if I am no longer a fighter?
Sure... this could seem like a perfect example of Munchausen by Proxy syndrome if you look at it from a conspiratorial point of view. But that is not what I am getting at. I don't want to go back to seizures and stitches and neutropenia. I am not a sadist or masochist.
Of course, I'm not disappointed that Luke is ok. I just don't know how to be ok now in the calm.
How do you stay a hungry fighter while still having peace and faith that it will all work out? How do you know where to go and what to do when you have the luxury of options? How to you keep the fire going without any fuel?
I know I should enjoy relaxing. I know I should be grateful to have our health. And I do feel those things, but the drive, the push, the desire to do more, to be more, to have more, the desire to fight won't stop. It is who I am now.
Ya know, I used to apologize for my aggressive and loud and over-the-top self. I pushed Her down for so long, insecure that She would not and could be loved.. But last year I needed Her and She was ripped out of years of hibernation and pushed to the front line.
That person, I liked Her. I missed Her. I was proud of Her.
I finally got to be Her again. I had to.
But She missed a lot of life. She has never been a normal adult. She went from adolescence into a decade of seclusion and now she is the reason I stand here frozen, looking around, trying to figure out what the heck just happened.
She stands there in the empty battlefield, weapon still in hand but no one around.
It is quiet, but I can still hear my story, my song, my chant. The army has gone back to their families, to their lives, to their homes. They rest and heal and try remember who they were before they were a solider. They pray for peace and the mundane. But don't want to go back to that life, to who I was. I don't want to send Her away because I know that this standstill is short-lived. I know that we will never be 'normal'. First because I don't want to be and secondly, because Luke is not 'fixed'. It probably wouldn't hurt to put the sword down for a minute but it's not going in the attic. I need it handy. I will need it again. Although we may be lucky enough to not be fighting seizures, there is no surgery, no cure for TS or developmental delays or autism. It's therapy and medications and threatments and connections. The fight for our children never ends and is not a fight reserved for parents with children with special needs. It is the reason we don't spend our days eating Pizza Rolls in bed and watching The Godfather trilogy.
Yet, still I stand here, holding a sword with no opponent around. No home to return to. No arms to carry me through the door and nurse my wounds. I know I am supposed to move forward and heal but the battlefield seems like an inappropriate place to do that.
I look around this battlefield knowing that it is time to take the first step, but unsure which direction is home.
I know one day I will miss these moments.
I know one day I will look back on this time and really be able to convince myself that this was the best time of my life. I will look at pictures and see the Instagram filter. I won't see that there were 15 attempts to get both of their heads in the picture and my under eye circles that I PhotoShopped out or the crying that ensued after I forced all of us to sit so close together for 5 seconds or the candy that was used as bait. I won't remember the meds and therapy and exhaustion and the regression.
I will see the filter on the picture and their chubby cheeks and hear their little voices and I will miss this. This pace is hard and fast and relentless, and while many times this feels like a marathon, I know one day I will look back and it will feel like a sprint.
Speed. Pace. Distance.
Not normally words that are part of my vocabulary.
Going fast is something that my body typically doesn't allow me to do unless it is my foot to a pedal.
However, the winter months have brought to my memory the fact that I do, in fact, have an athletic activity in which I enjoy.
No, not snowboarding. Don't get ahead of yourself. I am not that cool. Just plain ole 1990's Paoli Peaks skiing.
It is fast and scary and independent and it is outside. Which I am assuming means that, since I love to ski, I therefore love nature and exercising.
But I remember being very confused as a child seeing cross-country skiing,
Why don't they take off their skis and just walk?
When do they get to the hill?
Did they get lost?
Why would you want your legs to have to make that motion for so long?
Where is the fun? Where is the thrill?
When do you sit on the lift with your friends at the end and talk about what happened on the way down?
When do you go to the ski lodge and eat and drink?
I am much more of a downhill skier.
It is Fast and Furious. It is Crazy and Free.
Then, most importantly, there is the precious time at the bottom of the hill to discuss the craziness that happened on the way down. The chair lift is social time that is built-in to a sporting event. Genius. They were really thinking when they set this one up.
And even better, part of the sport experience, is a Ski Lodge where you go to eat and drink and sit by the fire and, again, discuss the craziness of the day.
I am a downhill skier.
But somedays I feel like I am on a cross-country expedition.
The days are long and quiet and filled with time to think..
These days include exciting topics such as: Silence.... Reflection... Perseverance.... Dedication... Solitude...
I am not Henry David Thoreau. I am no Mountain Man.
I am a sit by the fire and talk kinda chick, not go searching in the woods for the firewood so I don't have to be around people kinda lady.
I am a Doer, not a Thinker.
That thinking stuff is dangerous. You can only think for so long before you drive yourself mad or finally find something to be upset about.
Which is exactly what happened when we returned from Houston.
We came back on a high.
The community was unbelievable. Luke was seizure free. He was walking and talking and clapping and looking into your soul and laughing. We had been busy and checking things off the list from Dec. 7- 23. We were on fire.
And then, in keeping with the feel of any feel-good holiday blockbuster, I opened my door Friday, December 23 and got the feeling that I can only imagine that little old lady's dream of when Publisher's Clearing House knocks at their door. Except, instead of having Ed McMahn there with balloons, it is everyone you have ever loved in your parent's front yard holding candles and singing to you as one big Grand Finale to the craziest year of your life.
You don't get higher than that moment.
And then we were home. And not only did the pace slow down. which isn't good for my psyche, but so did Luke's progress.
The pace slowed.
Then it stopped.
Then it threw itself in reverse and hit the gas.
Luke was puffy and uncomfortable and starving and still not sleeping, all of which we were hoping was just from being on a steroid for a month.
Then he stopped walking.
Then he stopped sitting.
Then he started twitching and jerking and flapping.
I recorded a few of these episodes, convinced that the seizures were back. The doctors assured us that Luke was "still tremulous from just having two brain surgeries (so chill out)" but that offered little relief.
And then something really terrifying happened.
Luke forgot how to use his hands.
He wasn't paralyzed. He could still move his arms to flap when he was excited (which he just so happen to be all day and all night long) but when you sat with him in front of a toy he liked, he would look at you and cry and plead and try to grab it with his mouth. It was like he didn't know that he had hands anymore. When I put him in his highchair and poured Cheerios on his tray, he would throw his face into the pile, grabbing all he could with an open mouth.
Ok, yeah... fine he was seizure free.
But call me crazy, it was hard to be excited or relieved or anything other than confused.
He was doing so well right after surgery. Why had it stopped?
The doctors said to give it some time and I did, all while secretly preparing myself for the possibility of my "New Normal".
I mean, we went to Houston to stop the seizures. It happened. I'm not an idiot. I know it wasn't going to make life perfect. Why should I complain?
Because I have to feed him? I've been doing that since he was born.
Because I still have to sleep with him? I've been doing that since October.
I should be grateful. Focus on the positive.
But without time on the ski lift, it is hard to see the finality of the hill. Without time to push reset and recharge, those few days felt like a cross country expedition. All I could see was a white blanket in front of me. I seemed to pass the same tree and rock and leaf over and over. The same motion. The same surroundings. The same view.
I started the slow decent down the slippery slope. I will be doing this same thing fooorrreeverrr.
I know when my mind starts to go there.
I don't try to stop it anymore. It is healthy to slip down that slope every once and a while. There is a time to acknowledge that even through the strength and faith and hope and peace there is also disappointment and loneliness and fear. On these days, the days I just go ahead and go there, I look in the mirror and see myself as a 15 year old girl. I am wearing only lip liner, my eyebrows are over plucked and my hair is orange from my at home "Sun In highlights" that my hairdresser still yells at me about. My arms are crossed and I am pouting about how the world isn't fair and no one reeeallly gets me.
It is no use... My wiry grays and red lipstick and brow pencil can't cover up who I become on those days.
The sulking teen seeps through the Sephora mask I wear.
So I accept where I am and allow Brandy and Three Doors Down to play over and over in my head while I sweep up the same Cheerio pile for the 15th time this weekend. I make loops around my parent's kitchen slipping cereal in to my 3 year-old's mouth and chatting with my friends about the whirlwind of their holiday. In true teenager fashion, somehow muster the energy to be mad at them for having fun without me.
And then I look over at Luke.
He had been dive bombing his tray with his face trying to feed the insatiable hunger that has put at least 5 pounds on my string bean turned lima bean of a boy.
I look over and Luke lays his head on the tray.
Without thinking he takes his hand and rakes the Cheerios into his mouth.
I stop what I am doing and move closer, listening less to the voice on the other end of the receiver.
He stops. He looks at his hand. He looks at the Cheerios.
And just like that, it all clicked back in to place.
Luke found his hands and I found my hope.
By the end of snack time, Luke was picking up apples and bacon and cereal. He was clapping. He was picking up his cup and throwing it across the room.
And, in a flash, I was a 32 year old again.
It is a wide turn, but we are starting to turn the corner.
You see, it isn't the surgery or the seizures or the sleep deprivation or the homelessness or the regression or the loneliness or the failure that breaks you down, that makes you want to listen to Jagged Edge and Creed in your 5 disk CD-changer and feel sorry for yourself.
It is the inability to step out of it. It is continuing to miss the ski lift. Just stopping and breathing and laughing and crying and remembering a time you were more than a mom.
Being a friend or a daughter or a girlfriend or a sister. Those are the times that make it possible to tap in to those reserves when you are on empty instead of reverting to your adolescence as a means to cope.
Those trips up the lift make you ready to lean in to the next time around.
Those moments make you better and stronger and lighter and sharper the next time down the hill.
I should end with the fact that, I do in fact love and appreciate these moments with my kids and in 2017 I am going to be more present and positive for my children.
But that is impossible.
They get all of me that there possibly is at this moment. They get it all because I do adore them and I do genuinely enjoying hanging out with them... A LOT.
They can't get anymore of me... unless I somehow find more of me to give.
There is more of me out there waiting for me to find it and I know just where to look...
See you on the chair lift.
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.
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.
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.
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.
Mother of two amazing little boys, one who just happens to be a TS warrior.