My son is screaming.
Logically, I know it is because he has autism and autoimmune encephalitis. I know he has a virus that is either entering or leaving his body and it is affecting his brain. I know the inflammation in his brain leads him to scream, to succumb to irrational fears, to hyper-focus his anger and anguish on me.
Logically, I know this. Emotionally, I’m wrecked. Because he’s screaming and we have friends over. Our children were so thrilled to see them walk through the door and I was overjoyed to have their warmth and kindness fill our home.
We don’t often have people over because our world can change on a dime. And this day, it did.
I saw the switch flip in my son’s countenance and I knew there was no coming back. Once a flare up begins it doesn’t end until the inflammation subsides. The only relief we will get is when he sleeps. Part of me is focusing on the logical part of this. It’s 4:00pm and not 8:00am, and within the next few hours the screaming will stop because he will fall asleep. The other part of me, the soul part of me, just wants my son and our family to have a normal life. A life in which we can have friends over without worrying about brain inflammation wreaking havoc on the playdate. A life where things don’t suddenly spiral out of control and my son won’t be taken hostage by fears, intrusive thoughts, and the physical pain of his head throbbing.
It’s been three years of this. Three years of this murky AE diagnosis, which doctors are still trying to properly diagnose, understand, and treat. Three years of letting my son’s words, which are uttered out of anguish and illness not intention, come crashing against me. Like a rock that will not succumb to the wave, I stand steadfast while the waters come. But it hurts. It hurts as much as it did the first time this happened three years ago. It hurts every time this happens, which in bad seasons can be daily. And I am tired.
For a brief moment, there is a lull. I sit down next to my friend on the couch and tell her about the dichotomy that lives within me: I love him so much and will do anything for him / I just want this to stop.
I tell her how deeply pained I am to live this contradiction every day. How hard it is to let people in because I fear this is what they will see. How grateful I am to her for being a safe person.
She looks at me and says, “It’s an honor to be someone who you trust to see your life as it truly is.”
I know if I start crying, I won’t stop. So, I thank her and hug her.
My son’s behaviors and agitation increase again and she and I work together to keep the playdate going as long as we can. Pressing into this hard moment as a team. Understanding that the deepest friendships are forged through faith, kindness, compassion, grace, and authenticity.
She reminds me that friendship is a harbor. To provide safety to those in my life. Someone my friends and family can be honest with. Who doesn’t shame. Who makes others feel understood and loved.