I popped the bathroom door open just enough to see Avery singing into his hairbrush in front of his mirror, belting out our new anthem for his invisible audience. I was caught between tears and laughter. It was one of those moments.
I've always loved this song by Sara Bareilles, but recently it's taken on a new meaning for us. I was singing it in the car a few weeks ago, and something made me turn it up. This is our anthem! Then I started casting funny face glances at Avery (he's my funny face boy--when we take selfies together, we make funny faces), who was sitting in the backseat. I started dancing a little in my seat as I drove (this embarrasses my children to no end, "MOOMMMM!!! Other drivers are going to SEEEEEE you!"), and twirling my finger at him as I pointed and continued my funny faces. I want to see YOU be brave! Show me how big YOUR brave is!Naturally, being 8 years old, he rolled his eyes, crossed his arms, looked out his window, refusing to even look at me, and just could not believe his mother would behave this way. What-ever.
For the record, I have no idea where my children get their sass from. But, I digress.
To my maternal delight, I knew I had gotten through to him when I heard him in the bathroom that night. YES!
You see, Avery's had a rough patch this year. Through testing for something else, we inadvertently discovered he's having "no see-um" seizures (official diagnosis is right side temporal lobe seizures). Because we were not expecting a seizure diagnosis, I made them check the paperwork three times to be certain they were telling me about my child, and not someone else's. I was horrified when they told me in front of Avery. Isn't this something a parent should hear on her own? After the appointment, I sent my oldest son to the car with his little brothers, and fell apart in the lobby, right there on the floor. It was horrible; I vaguely remember two women, strangers to me, and to each other, coming to my aid. One prayed over me, and both held me as I sobbed. The second shocking call came while I was getting my hair cut, from one of the neurologist's interns, who was later disciplined for the way he handled the call. When we first saw the neurologist, based on the exam, the EEG from the sleep study, and family history, he didn't think we had much to worry about. After the first EEG the neurologist did, we found out we had a lot to worry about, and that was the phone call I received--again, in front of all three children. Keeping it together in front of my kids is not my forte; I sent my oldest next door with the littles for frozen yogurt, and again, fell apart. The stylist received an extra large tip that evening.
We call Avery's seizures "no see-ums" because he does not exhibit symptoms, so we don't know when, or even if, he's having them. I cannot see this enemy, and I do not know how to fight it. I've been angry, bitter and frustrated. I've cried and yelled. I have sobbed during worship, and prayed on my knees at the altar with my pastor's wife and husband at my side. I have laid on the floor, wailing with maternal agony, gripping my husband as he held me, scared out of my mind before we received the official diagnosis, wondering how bad it was going to be. There are nights I'm afraid to go to sleep because I don't know what is happening to Avery. I watch him like a hawk. Every activity he's asked to be part of, I overthink because of this new diagnosis. My child already has ADHD, anxiety and is on the Autism Spectrum--isn't that enough??? He's begun having migraines, which is not a good sign for a child with seizures--can we please just stop???? When is enough, enough? As Avery's mom, this has been the most frightening thing for me to go through. As a family, we've seen too much--too much God--to look elsewhere, to lean on Anyone else, to believe anything else, so we are relying heavily on Him in this. I've wanted to yell at the doctors: "FIX. MY. CHILD." I know it will do no good. Instead, I yell at the One whose shoulders I know can handle it, and, in His time, will fix my--our--child, as He sees fit. There is so much the doctors cannot tell us because of Avery's lack of symptoms. They cannot treat him due to the lack of symptoms. There has been one thing they have been able to tell us, though: Our son will get worse.
And there's one thing we tell Avery's doctors: Our son has God. Our son's conception was God's miracle, and God is not just going to walk out on him.
In all of my fear, I have watched Avery hold his shoulders high, as I have tried to not let him see my own panic. Through all of the testing, he walked bravely. His only fear of the MRI was the needle that would help him sleep through it. I, however, sat in the waiting room with my husband, grasping his hand until he not longer had any feeling, while he did his best to stay strong for me, struggling with his own feelings and emotions, as I sniffled either into my tissue or his shirt. Avery complained a few times about the itchy EEGs, but you would too if you had to wear them for 24 hours, and carry a video monitor around with you. I was the one who had to take period breaks in my 'crying closet' so my son wouldn't see me break down, unable to handle what he was having to deal with. One morning, he announced, with complete confidence, "When God heals me, I want the world to know, because I want everyone to know to that God still does miracles, and I want people to believe in God." Just like that, out of the blue. We hadn't even been talking about God. The car had been completely, unusually quiet, and after Avery's pronouncement, it remained that way, a stunned silence.
We've researched the brain until we're both blue in our faces. Avery knows everything you could possibly ask him. I think he wants to know the "why" in the why his brain is sick. What, when, and how it happened. Why he doesn't exhibit symptoms (we're finding this type of "no see-um" seizure is being seen as more and more typical in kids like him on the spectrum). The truth is, there aren't any answers right now. I asked him one morning how he feels about all this seizure stuff, because he doesn't always have to be brave. He explained to me, shattering my heart into pieces, that he wants to be brave so I won't be scared. If he's scared, then I will be scared (isn't this supposed to be the other way around?). So we agreed it's okay for him to be scared, and even angry. We fist-bumped, and agreed to try to be brave together, but to remember we don't always have to be brave. He didn't ask for this. But the important thing is to move on from the anger, and learn to carry it with grace. He may not have asked for it, but he has it now, and there's not much we can do about that part, aside from praying for healing, understanding and God's will. Even though we do not understand it, there is a reason for this diagnosis. I have to believe that, or I won't survive this.
I know in my heart everything is going to be okay. Getting there is the long, hard journey. But Avery is going to be okay.
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