It is 7:30 and he wants to go for a ride. He grabs his chewy tube once I get him into his enormous special needs car seat. He is looking out the window as we cruise through our neighborhood of neatly manicured patio houses and young live oak trees. The light streams in on his contented face. He rocks back and forth in his carseat to a U2 song. A Starbucks run with my boy on a summer morning is sweet.
Three minutes into the drive, out of the corner of my eye I see his head drop in the rearview mirror. I see his arms out stretched, shaking, rigid. I hear the gagging and then hear his breathing has already stopped. I rush through the light and pull quickly into an empty parking lot.
I open his door and immediately prop up his head. I try to get him into a position to increase airflow. He begins to drool. His eyes roll back in his head. He finally begins to gasp for air, and I do too. The worst is over. I sigh. I get the headrest in position to cup his head. His neck is like a wet noodle after a seizure of this magnitude. I look at him before I shut the van door; he always looks like an angel after the seizure short-circuits his brain. I pull my hair back and twist it into a knot. I try to relax my shoulders and take a deep breath.
All this only takes 2 minutes. It is an average morning for us. Me whispering, “Keep breathing, keep breathing, come back to me, come back to me...”
I keep the radio turned off. Silence is the best thing for his brain, now in a postictal phase. I know now that the hours of deep sleep will envelop him like a blanket. I wish after this repeated trauma I could also sleep that deeply for hours, but there is a company to run and a hospital trip to pack for.
Last night, I stayed up late reading a book, “Hope Heals”, about a woman’s incredible journey of hope and faith through a massive stroke that nearly killed her at the age of 26. It includes a photo of her from her wedding day. She was a model and actress, and in the photo she is running barefoot in her huge white dress. Joy just radiates out of this picture, even on the black and white page. Now she can’t run anymore, and her face no longer resembles one of a model. Her story is one of stunning loss and sadness, but also hope and real healing. Her husband's love as a caregiver and cheerleader is stunning. Their story is beautiful and inspiring.
I am always struck by the books and stories of people who survived tragedies, but begin to move into the future. They begin to rebuild and move on; but our story feels so different. They work through the entire grief cycle; we can never seem to complete even one single cycle. We have much more in common with the progressive diseases that are slow, that twist the body and sometimes even the mind for many years. Tuberous Sclerosis, a genetic disorder, has no remission or cure. Our friends with Muscular Dystrophy and Rett Syndrome know about the cruelty of regression even more than we do. These diseases steadily reverse and rob your child of skills and abilities they once had. They stop walking, stop eating, and eventually stop breathing. Cruel is an understatement.
I envy people who have been through “the worst of it”, and know they are on the other side. To be six years in and know for certain the worst is yet to come is a terrible reality. Nobody has that inscribed on a rock in their garden “the worst is yet to come”. It doesn’t make for a good Instagram post. For some of us it is the reality. How do you even deal with that?
What can I tell you about a life when the worst is yet to come, in terms of medical diagnosis? It sucks. And you will want to run away. And you will feel more trapped than you have ever felt. You will look everywhere for an escape hatch. You will look at the wrinkles on your face, and the old videos of your once speaking and healthy child and want to stop feeling anything at all. You will numb yourself and distract yourself. You will find out what it means to live in a war zone. There is no cease fire and no peace time parades. You will be a wartime parent, not a peacetime parent. I take the analogy from the world of business, when Ben Horowitz explains the difference between the peacetime and wartime CEOs:
Peacetime CEO focuses on the big picture and empowers her people to make detailed decisions. Wartime CEO cares about a speck of dust on a gnat’s ass if it interferes with the prime directive. (Our prime directive is to keep our children alive, not much else really matters.)
Peacetime CEO spends time defining the culture. Wartime CEO lets the war define the culture. (The war defines your life. You deal with it. You adapt. You make battlefield decisions as best you can.)
Peacetime CEO always has a contingency plan. Wartime CEO knows that sometimes you gotta roll a hard six. (No contingency plans when your child stops breathing or their brain gets infected. You learn to weigh risk vs. benefits in a matter of seconds. You pull the trigger. You make the call, but you never forget the gravity of the situation...this ain’t Vegas.)
Peacetime CEO sets big, hairy audacious goals. Wartime CEO is too busy fighting the enemy to read management books written by consultants who have never managed a fruit stand. (Always too busy fighting the enemy to take advice from well meaning people who have actually suffered no more than a headache.)
So that is the reality. I am a wartime mom. I roll a hard six sometimes. I use profanity on occasion, especially when bodily fluids and seizures dominate my day. I fight the enemy. I make real time decisions without the luxury of asking 10 people for advice, or praying about it for 2 days.
To my other wartime mamas, here is my advice. Think like a soldier. Think like a person going off to battle. Do not pity yourself. Find your inner warrior. Do not make excuses. Make preparations. Get your head straight. You are in a war. You are not in a cupcake competition or running a 5K through your hometown. You are making life and death decisions that you are not properly trained to make so of course you feel overwhelmed. Make them anyway. God gave you this child and this war. You were called to this battlefield. Stop trying to figure out why you are here with bombs going off, while your friends are in another country sipping wine and getting more Botox. Fight your war. For one day you might find yourself at the West Point of Wartime motherhood as a teacher. Your suffering will not be wasted, your lessons will not die on this battlefield.
Do not let the brutality of this war change the tenderness underneath that warrior, sweet mama. Do not let the scars change you so much that you can no longer savor the sunrise or experience the joy that is set before you. The rest and joy you so long for may not come on this battlefield, but it will in the end. A peacetime will come for you, but for now your war wages on. So mama...you need to suit up. Put on your helmet, check your rations and pack your good attitude...this battlefield needs you.