Brave enough to be scared.
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.
The Houston Perspective
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.
Mother of two amazing little boys, one who just happens to be a TS warrior.