So a long time ago, my emotions made a choice on my behalf. They shut down. They shut it all off...
I couldn't really deal with what was going on with me and mine, but even more, I couldn't deal with what was going on around me, outside of my world. It seemed unbearable to process: his seizures, his meds, his plateaued development, so... I didn't. I didn't process anything, really. I stopped thinking about how I felt about all of it.
The shut down was involuntary at first. A wall was starting to be built and then, as it went up, I began to feel better and safer. That's when I made a decision to shut it all the way off. The wall building continued and I became the foreman.
I told myself I was doing it because it was the right thing to do. I wanted to protect myself from enormity of it all so I could then care for those around me. I couldn't be the one to fall apart. I didn't have that luxury. I wanted to protect my friends and family and coworkers from the misguided pain of my true reality. I didn't want to accidentally unload on someone and decapitate the innocent who was just trying to reach out. I didn't want to give people the 30 second 'elevator pitch' of what was going on with my baby, my Luke. Sharing my story while passing in the cereal aisle gives people just enough information to almost be dangerous. Why would I do that, set someone up to be unknowingly hurtful?
I was just protecting everyone else, right?
I had convinced myself that this was the humble and noble thing to do.
But the truth is, I was scared. Or maybe, actually, I was confused. Why wasn't I a wreck? Could I really build a wall tall enough to keep everything out? Who am I, Donald Trump? For a while, I actually just waited for the emotional breakdown to barrel through the wall like The Kool-aid Man. Everyday that the breakdown didn't come, I told myself it may come tomorrow and if it did, no one would fault me for it. But it never did. The magnitude of having a child with a genetic disease never felt unbearable to me because I wasn't feeling much of anything. So where were these emotions going? They had to be going somewhere. The longer I went without breaking down the more fearful I became of the storm gaining momentum. While time is supposed to heal, the longer I was in my world, behind the wall, the more terrified I became of my inability actually to deal with or face this reality. So then, the taller and thicker and stronger my wall became. I didn't breakdown because I physically couldn't.
I am strong because I am numb and go into the world to share my life with the ones I love. I talk to them. They ask how I am and where ya been. I answer. Then I hear my life coming out of my mouth, but it's like I hear it for the first time. As it hits their ears, I see my life on their face. My life, my morning, my afternoon, my night, rolls in like Eeyore and his rain cloud and sucks the color from their face. And then they realize that it is their turn to respond. Their mouth is still open, but nothing comes out.
Most people prepare on the way to sad events. Funerals, for example, have a script we can follow if we draw a blank. We can be sorry. They can be in a better place. Their pain can be over. We can start a meal train and shower them with casseroles. But this. Sick kids. Chronic, genetic disease. These do not have scripts. There are no safe phrases to fall back on that come easily to your mind.
Before people even try, I throw them a life raft and let them escape safely from the conversation, but, in doing that, I have to lie and say I know in my heart that it will all be okay. You both walk away relieved it is over. Your dismount, however wobbly the landing, had a very high starting score based on difficulty, so you feel it was a relative victory.
It pained me to bring my pain to others. So, I stopped talking and sharing. I didn't know HOW to do it. It was very important for me to be honest, but also, not sound negative or whiny. I couldn't pull that off, so I stopped trying. The wall gets taller.
But REALLY, also, in full disclosure since now, apparently, this is my diary and not a blog about Luke, I didn't talk and share and reach out because it didn't matter. It didn't matter that you knew someone that once had seizures. I didn't matter that your son didn't talk until he was three. It didn't matter that medical marijuana worked for your co-worker's sister's kid. It didn't matter because, in the end, Luke would still be sick and, for some really jacked up reason, I would be mad at you. So thaaat sucked. Being angry with people for caring about me? For having healthy kids? For trying to understand or relate? So guess what... taller, stronger, wider.
I stopped listening to music. I stopped reading. I stopped checking Facebook. I blocked people who seemed toooo happy. Stupid liars, I thought. And then... one day, He shifted the wind and I woke up from the haze. I missed who I was, but even more, I missed who I was supposed to become when Luke was given to me. And just like that, the big, tall wall came tumbling down like a house of cards. With one small breeze, all the work, all the building, all armor I wore to protect myself, was gone. It was just me. Open. Vulnerable. Exposed. But it was ok. I didn't need any of it anymore. I wasn't afraid.
And here I am, ready to tell my story and ready for my story to be shared. I am ready for people to know that it’s hard. I am ready for people who don’t even know us to keep us in their prayers. I am ready to be ok with sounding negative when it is just too hard to find the silver lining. I am ready to sound selfish when I write an entire blog about myself on my son's website. Luke's story doesn't need to be hoarded or protected. Luke's story is mine and yours to share. He reminds us that Cheerios fix everything and that strep isn't really that bad. He reminds us to laugh and kiss and dance even through the pain. We are all in this together. We are all just trying to figure out how we fit in this life experience. And we all want to know what the heck we are supposed to be doing with ourselves while we are here. No one has it figured out. That is the beauty of it all. Whether you speak to the Lord above or to the mountains or to the universe, I think we can all agree that we have an expiration date. Our time here is brief. So while the days can be long and the nights even longer, life itself is so short. We do not belong to this world. We are here on a lease. Some of us are just lucky enough to be leasing an angel.
There is this really weird moment that happens to new moms a few weeks into the whirlwind that is life with a newborn. You look around and realize, the laundry is done, the dishwasher is unloaded, you have showered and pumped, hell, you may have even done your makeup. You've made your bed and eaten. Your baby is sleeping and you may have gotten 5 hours of sleep the night before, so you are feeling rested. Holy crap... I think I am done. I think I am going to have a moment in real life what Instagram momming looks like. I am going to sit down and hold my baby and relax, or at least try to. It always sounds like something I would want to do, but I suck at it.
This moment happened for me on July 18, 2013. Three weeks after having Luke, I was battling a little postpartum and hiding it perfectly from everyone with chores (I am a terrible actress). I remember seeing pictures of people clean and rested and happy with their baby on social media and I couldn't wait to give it a try. Oh Desiree, who will you choose? I went with The Bachelorette as my choice. Its a fun thing to watch with friends from work and make fun of each other for liking guys we consider tools (because they all aren't?). So you have to know whats coming... right? Luke starts doing something so weird with his body. He gets really tense and his arm starts flapping around. I remember my pediatrician telling us not to panic when babies made weird movements. They startle easily, ya know? But then he starts crying. Then it happens again and he cries even more. My baby didn't really cry. Something was wrong. I called the pediatrician and they sent my call right over to Kosair and they recommended we come there right away. Now, I am not going to say that I am a laid back person. Most of you are giggling right now at the thought of that character trait being associated with me. So I own it with pride, I am intense, borderline aggressive. I blame my mother, per usual. But honestly, I don't even need a scapegoat because I love it. But my point is, I am not laid back, but I am also NOT an alarmist. I did not want this to be something that's answer was "Kosiar". I preferred the answer "Flintstones vitamin" or "warm bath". So I waited for Steve to get home and we left. I sat in the back with Luke with the instructions from the nurse to "make sure he didn't stop breathing" and sang to him while texting our parents. We pulled into Kosair ER and checked in. I remember being abnormally nice to the receptionist which is a weird, yet helpful trait I have through all my experiences. For some reason I very badly want to be viewed as a 'normal person' or 'kind'. Call it fake because, my Lord, sometimes it is, but its a safer place for me to function for myself and everyone around. We went back in the room to meet the first of 8 people asking for symptoms and to see the video I took and to 'take a listen'. You have to remember that Kosair is a teaching hospital so many of the first few people you see aren't your doctor, they are updating your doctor on what the heck is going on. Save your energy for them. Luke was screaming at this point and he hadn't had another episode since we had arrived and I got the feeling they felt like I was making this up. Its a guilty feeling to want your kid to do the thing that made him scream so that they could see you weren't crazy and they could send you home with your vitamins and a pat on the head. The nurse came in with all her experience with babies to 'get him to stop crying' with this special hold they only teach you when you are an ER nurse and a grandma. This was going to do the trick... I'm sure if it was reflux it would have. But, as we found out 36 hours later, it wasn't reflux. I didn't need to stop eating wasabi peas and nursing. It was Tuberous Sclerosis. The disease that would take us from the ER, to the neuro floor, to the ICU, to the operating room, and home all in a matter of 4 weeks. Those 4 weeks of sleeping on the floor and blowing my hair dry with the hand dryer and living on coffee and cookies changed us all. I went into that hospital a little girl, scared and unsure, and I came out a warrior. So did my family. At this point we can activate our call to duty in a matter of minutes. Bags are packed, communication is in place, people jump into their roles in seconds.
I guess the main reason I want to share this story, other than to fill in holes, is to say that we aren't living a different life this week or month because this blog has begun. I didn't start writing because things are especially bad. I started writing because, for the first time, I can. We have been living in this climate for a long time. We have the outerwear. Our hair has adjusted to the humidity. We've been here. The weather may have changed a little, but it isn't dramatically worse. Some days there are storms and some days are sunny. Tornado, snow, rain, random hurricane, sun, wind... we are ready. We love that you came to visit, but to us, this is home. This is long term. Seizures may come and go, but this place of TSC is our lifelong climate for our whole family. Its weird and hard and exhausting, but we wake up everyday, check the weather, and dress accordingly.
Mother of two amazing little boys, one who just happens to be a TS warrior.