Day #1 post-IVIG #3
I had to work urgent care today and couldn't go to mass so I listened to "Salve Regina" in between patients. It has a calming, centering effect. But today it made me sad. As I listened to the different hymns we sing at mass, I thought of Max.
We are eleven months into the worst flare he's had since onset eight years ago. He started to improve after the first IVIG but then got sick and the second IVIG did not help although I cleared the Strep from him beforehand. We're now on number three and hoping for the best.
Max used to love mass. He is the one who decided he wanted to be Catholic. My husband and I had converted when Max was nine years old. We started him in Catholic school the following Fall and left it up to him. He asked if he could be baptized. And he was. He asked to take Communion and asked to be an altar server and asked to be a cantor. He sang proudly at mass and liked going. Then... PANDAS.
I have had to remove him from the altar server and cantor schedule. He was supposed to cantor last weekend and absolutely refused to go. He wouldn't even go to mass. He tells me how much he hates church. The Bear, I should say, tells me how much he hates church. Or is it Max?
I think Max has lost faith in God and in me as well. I have been promising him since April I will get him well but I haven't. He's worse. He feels abandoned.
Help us Mary, poor banished children of Eve.
This is the essence of PTSD: to feel you've been abandoned by everyone in your life and by God himself. Our children with PANDAS develop PTSD over time. We need to recognize that and treat it.
They live in terror of something horrible happening to us. They sleep with baseball bats under their beds and create elaborate rituals to protect them. They sleep in our beds.
They are very aware that something has happened to them but they're powerless to change it. We say. "it's like someone else is in my child's body." How must that feel to them, to have someone else in their body? To have so little control and so little ability to really make sense of it.
Max once played deck hockey and took ice skating lessons. Played trombone in the band, sang and was altar server. Was in musicals at the local theatre school. Went to science camp and loved it. Got all A's and loved school. His world was so big.
Now it's so damn small.
Afraid to go outside. In the basement playing piano. "It calms me," he says. He plays the same son incessantly, compulsively. Over and over. His weekly piano lesson and the two hours he gets each night on his computer are the only thing he looks forward to.
I do not tell you these things to be negative (I'm amazed at how often, when talking to fellow PANDAS moms each one of us takes turns updating each other and then inevitably adds, 'Sorry I'm being so negative!' As though our very perseverance wasn't proof we are so much less negative than any other moms I know) I am writing to figure this thing we call PANDAS out.
I am giving up on my analogy of being at war with The Bear. I've always been a pacifist. You can't defeat violence with violence. This Bear will not be overcome with brute force, but with love.
Martin Luther King once said:
When I speak of love I am not speaking of some sentimental and weak response. I am speaking of that force which all of the great religions have seen as the supreme unifying principle of life. Love is somehow the key that unlocks the door which leads to ultimate reality. This Hindu-Moslem-Christian-Jewish-Buddhist belief about ultimate reality is beautifully summed up in the first epistle of Saint John:
Let us love one another; for love is God and everyone that loveth is born of God and knoweth God. He that loveth not knoweth not God; for God is love. If we love one another God dwelleth in us, and his love is perfected in us.
Appropriately enough, this was part of a speech titled "Beyond Vietnam". We are moving beyond our war with the Bear in our house now. Onto nonviolent strategies to shut the war down. Save our son and move on to a Peace and Reconciliation commission with the Bear.
I cannot tell you concretely exactly what this will look like. It is not so much the methods that will change but rather the spirit with which they are carried out and the expectations we hold.
A very good friend of mine said to me this week, "when mom falls apart the whole house falls apart. It's not fair but it's true." And I do believe it is. But what follows is that if mom can hold it together, maybe the whole house can too.
I am focused