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 on creating peace in my house. We continue on with antibiotics and IVIG and everything else. But I have come to realize it's not enough to heal his body. His spirit is lost right now and will need healing as well.
I once had chronic PTSD for seven years after an extended trauma. PTSD is a place where you're not dead but not quite alive. It is uncommon for someone with PTSD that many years to recover. I did so through medicine, therapy and the grace of God. Without a rather miraculous experience I had during that time, I would not have been healed. Medicine and therapy cannot convince you God has not abandoned you. And to be apart from God is the definition of hell.
PANDAS hell. The term so many of us come to use.
I'm done locking my eyes on the Bear. I'm done telling Max "we're going to get you well." Even though we are. I am going to sit with him in this place of darkness and hold his hand. All the while doing all I can to heal him.
Because we will.
You cannot go around trauma or over it or avoid it altogether. The only way to heal from it is to go through it. To process it in all its pain and shame and anger. So it is with my child. I cannot lead him through and out if I do not first ask him to tell me where he is and listen and believe him and be with him there.
If they must be in the darkness, we must join them there. Until we get them well. We will not be in the belly of the whale forever. Only for a time.
The home health nurse couldn't get Max's I
V started. He's a tough stick. He wound up with so many pokes on his arms, I said "Well you can tell your friends it's stigmata. That you're holy... Because you are. Look at all those holes."
And he laughed. Our humor is dark right now. Sometimes vulgar. It's what gets Max laughing so we go with it. He needs to laugh. He deserves to laugh.
But I meant it too. His wounds really are a stigmata of sorts. I hope one day, when he is well, he finds some meaning in the suffering he want through. It's not okay that he's going through this, but it is. It is what it is. And finding some kind of meaning in it is the key to getting through it.
Viktor Frankl, a survivor of Nazi concentration camps, went on to study human suffering and how people respond to it (see Man' s Search for Meaning). He wrote,
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.”
Frankl chose love and it helped him survive the camps and to go on to bring amazing wisdom to the world. I would give anything to have spared my children this PANDAS hell, but I also know they are very special human beings who will one day bring good from it.
As Frankl writes, “For the first time in my life I saw the truth as it is set into song by so many poets, proclaimed as the final wisdom by so many thinkers. The truth - that Love is the ultimate and highest goal to which man can aspire. Then I grasped the meaning of the greatest secret that human poetry and human thought and belief have to impart: The salvation of man is through love and in love.”
One day God will deliver us from the belly of this whale. Until then, we make a fire and huddle together. And have faith. And love. Lots of love.