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.
Mother of two amazing little boys, one who just happens to be a TS warrior.