"I've also lost a son. Nothing compares to what some people in this room are going through. And as bad as losing a son is, you parents, some of you, are having to endure far worse suffering."
-Dr. Paul Hardy, 2014 New England PANS/PANDAS Association conference
Our son Max served as cantor for the first time last week. I shut down the urgent care I'm working at part time early that night to make it in time to see him. He sang beautifully. I'm not just saying that as his mother. I'm actually not the type of mother to brag and I worry a good bit about inflating my kids' egos (right or wrong). He really was amazing. He was angelic. All the various parishioners came up to us afterwards and said how wonderful he was and more than one said he brought them to tears. He was so calm and peaceful up there with the whole church looking at him, listening to see if he'd hit the high notes, if he'd get it all right. And he did. He'd learned the entire mass the night before. Barely any time to practice. No one would have guessed it. Self assured, hit
ting every cue, projecting his voice, spreading the joy of the Lord.
On the drive home, he worried he hadn't done well. I gushed to him that he'd been amazing. "Didn't you hear all the nice things everyone was saying," I asked.
"They were probably just saying that to be polite," his PANDAS countered.
"Max, people say "good job, honey" to be polite. They don't say you brought them to tears and are a blessing from God."
Screw you, PANDAS, I thought.
We went home and I made a nice dinner for us. My husband and I were beaming with pride and he said, more than once, I can't believe how far Max has come.
I winced when he said it. I'm superstitious when it comes to jinxing. But I'm also a PANDAS mom. A PANDAS mom whose kid went undiagnosed for eight years. So, I know not to get too comfortable with the good times because bad times are always around the corner. I was happy, though, to see my husband so happy, if only for a little while. He deserved to just be proud and happy for a little while.
Then it happened. (Oh well, at least we had 5 minutes)
I had the kids setting the table for dinner and Max's older brother was being difficult. He's on the autism spectrum and he's thirteen and copping a major attitude right now as hormones surge. Max's little sister Lena was throwing a fit about something or other. Max got upset with Mies for swearing and yelled at him not to swear. I decided to reign in the chaos and said, "Enough! You all lose ten minutes of computer time!".
Mies and Lena calmed down. Max did not. Max lost it. Or rather, his PANDAS lost it. The bear came out.
The meltdown lasted almost an hour. Max was not there. The bear was. His pupils dilated, his voice lowered. He did not care he was scaring the little sister and baby brother he is so devoted to and gentle with. He did not care about me or anyone else. We all hated him. We were all out to get him. His life was utterly ruined and all was hopeless. He wanted to die. Screaming and throwing and threatening. He wanted to kill.
The devil was an angel once too, you know.
His little brother and sister were afraid. We had him in the finished basement that is the kids play room. It is also the area we send Max or his brother Mies if they are melting down. it dampens the sound for the other kids listening, afraid. It keeps those that are melting down safe. But it is not soundproof. The little ones know it is not really Max. That there is something unholy and unruly and very very big in our house. Something they should fear. They're right.
I stood in the kitchen trying to distract them but I'm not very good at it. At these times, my heart is with Max in the basement. I know he's inside the bear's belly. He's afraid too. Afraid of a bear he thinks is himself. It's not, Max. It's not. My heart breaks for my littles, but it breaks for Max too. We need the Huntsman to cut into the belly of the bear with his axe and set our Max free.
My heart breaks for my husband. His heart is breaking too. Cardiac ischemia permeates. Our troponin is so damn high.
The meltdown eventually passed and Max crumpled as he does after the possession of the bear is done. I went into the routine I use for him now at age eleven: validation, a hug, and a speech about grit. I told him he needed to do his after dinner chore and he wept that it was too much, he couldn't. And I told him he had to, and on and on about grit. Lord, how he must hate that speech by now. But it worked and he started his chore and my husband encouraged him and talked about something mature and helpful he'd done earlier that day to help out with the little ones while I was at work. And Max got through his chore and had some computer time where he composed music and returned to himself.
That night after the kids were in bed, my husband and I talked. Max had been doing better. We thought the flare was passing since I'd put him on a course of Omnicef and Lodine. We strategized. What can we do differently as parents? Should I change his meds around? Are we being vigilent enough with detox? Is it time for IVIG?
The next day, I weighed the situation and decided to begin the process of trying to get IVIG approved by our insurance company. Max's PANDAS is severe, late stage, and not responding to other immune modifying therapy. I began to think about the possibility it might work but hope hurts sometimes. And then I began to envision all the strep germs that will be floating through his school this fall. The bear awaits his chance to attack.
It is easy to feel discouraged. Easy to feel less than hopeful. Easy to spend too much time focusing on validating for myself how hard this really is on Max, on all of us. How can you not when you live in a culture that barely admits your child's illness even exists?
But then I give myself the same talk I give Max when the bear has beaten him up. The one about grit.
Yes this is hard as hell. No it's not fair. It's not okay. But it is what it is. And so we fight the bear. We do everything we possibly can to get Max well. And never give up. But wherever we are in that process and whatever the end point, there is so much more to us than this damn bear. The bear does not determine what Max will be in this life. It does not define our family. And while there is nothing good about PANDAS, we can draw meaning out of it and bring good from it. We will never be grateful for this ungodly bear. But we will not be defeated by it either.
Grit is 75% of success. I have said this to my children a thousand times. More than anything else. Because it's true. Talent is only 25%. It's a scientific fact.
By extension, I am of the belief that biology is only 25% of health. With determination, perseverance, hard work, optimism, resilience, we decide the rest. The grit of the parents and the grit of the patient. Of the doctor too. I do not refer here to those who say those of us with mental health diagnoses need to just pull ourselves up by our bootstraps. Quite the opposite. I am saying we identify our challenges and keep looking for strategies to address them (whether they be medical intervention, changes to lifestyle, finding a good therapist or seeking out the support of friends and family and God for solace and to learn acceptance). We also maximize our strengths and appreciate all we have. Optimism, determination, perseverance, hard work, resilience. An optimism sometimes illogical.
And so we push Max to eat just a little more than the bear is telling him to. Push him to start doing the dishes when the bear says it's too much. Push him to use the techniques Dr. Deb, his therapist, teaches him to face down his fears. Hopefully we don't push too hard. But we know we have to push.
And so we push ourselves too, as parents. To read more, watch more lectures, go to more conferences, talk to more doctors and parents. But more than that. To remember to find joy in our lives, to focus on all the things we have to be grateful for, to pray and seek peace, and to search for meaning in this nasty bear that resides in our house and hearts. We come up with all the ways we can to educate my fellow physicians so they catch this early in kids who present in their office with a child who's become someone else. To see there's a bear in that exam room with them. PANDAS caught early can often be treated fairly simply. There is still a lot of hope for those whose children were caught late, but we must be honest it is harder, longer road to achieve remission. And we must be honest that the years of living with the bear takes its toll. On our children and our entire family.
I was told by all those therapists and specialists for eight years that Max's problem was a lack of consistent discipline on my part. And so, the worse he got the more I did all the wrong things. They said if I didn't, he wouldn't get better. I'm sorry Max. I am going to do everything I can to reach those doctors and therapists now to help other families. I am going to do everything I can to kill the bear that stalks you and whispers such scary things in your ear all day long. Tells you not to eat, tells you there are people out to kill you, tells you the darkness is full of evil. Only the bear is. I will take my ax and fight the bear until I get you free. Optimism, determination, perseverance, hard work. You show such bravery and grit, I promise I will meet you there.