Max at Niagra Falls a few days ago. Living life.
'Well" said the grandmother, we will shut the door, so that he cannot come in.' and Red Riding Hood went joyously home, and one ever did anything to harm her again
Sleeping Beauty opened her eyes and awoke, and looked at him quite sweetly. the king awoke, and the queen, and the whole court, and looked at each other in great astonishment. They celebrated with all splendor, and they lived contented to the end of their days.
I am at the office catching up and Max just came in and printed out Chopin’s Funeral March and told me he’ll be using it to try out for the performing arts school and then left, singing a happy tune, to go home and practice. He walked here. And walked home. Where he is alone.
Not very long ago he was too afraid to be alone. Not very long ago he couldn't bring himself to go for a walk outside. Not very long ago he was huddled in his closet, afraid of the world. His mind was chaos. He was certain he was being watched, that people were going to break in each night and kill us. He couldn't drink water because "it tastes like soap." And I'm sure it did. Eventually he healed enough to drink Fiji water (ONLY Fiji water) and now he drinks our spring water. He drinks his required 4 glasses a day. And doesn't complain (well, a little).
He chewed on his clothes and on pens and even on playground equipment. He had 120 tics a minute. He couldn't sleep alone or in the dark. He couldn't walk into another room in the house alone. We had to force him to go outside for 30 minutes each day. He'd spend it sitting on the porch as close to the door as he could, just sitting staring. He had violent meltdowns. He begged me to help him die because it hurt so much to live. He ate nothing but McDonald's cheeseburgers with just ketchup. It wasn't very long ago.
I need the families out there going through this hell to know this. To know how bad he was. And now he is not. After much treatment. After exhaustion and total financial depletion and an almost broken marriage and a lot of glasses of wine and takeout Chinese food. He is back. He is healing, And so are we.
I cannot put into words how struck I am by what a different child he is. How could anyone believe what a strange thing this PANDAS is without seeing it for themselves? One moment you have your child, the next they’re gone. And then, one day, they return. I say it again and again at every PANDAS talk I give: parents will report things like “he’s a different person” “it’s like someone took my child and left another one.” But right this minute, as a parent, it’s just blowing me away. Viscerally. Spiritually.
My son Mies who has both autism and PANS is doing better than I ever hoped he would. Better than I could have imagined. Literally. I really didn't think this was possible. Our lives have completely changed. Max, who I’m pretty sure we would have lost for life after his second fall off the cliff January 2017 without treatment, is doing amazing (not perfect, but amazing). Auggie, who we got to in the pre-PANS phase, looks like maybe he won’t even fall off the cliff (?!) He’s back to baseline. Baseline. 100% (ok, 99%). We’re still working on Miss Lena but she’s improving every day.
I look at Auggie and I see my Max at that same age. In the rapids about to go over the falls. I see the years Max lost that my Auggie won't. It's staggering, It takes my breath away. I mourn for Max but I exult for Auggie. This is not hyperbole.
I have put off writing this entry for fear of jinxing us. I know this is not the end of the story. I know it will not be a smooth road. But right now my head is spinning and my heart is swollen.
My Max is back. My Auggie is back. The Bear stole them away and we have gotten them back. We have landed our ax in his wretched belly and freed them. Our sleeping beauties have awoken. It’s as if the hundred year sleep never even happened. Sort of.
Max is starting into therapy. We are working on getting him active. And we are continuing to homeschool him so that he can continue to rest and heal and avoid germs. Our original plan was to return to school but I realized we were rushing it (thanks to a good friend). We are homeschooling Lena too instead of sending her off to kindergarten.
Mies continues biomedical autism treatment. We are addressing his low cholesterol and toxin load soon with something called the PK protocol. We are working on healing Auggie’s gut and anxiously await his stool study results (who could have known how exciting it is to find out what’s in your child’s poop? It seriously is). Lena’s diet is expanding and hopefully Max’s will too.
And Eric and I? Attempting to spend some time discussing something other than our kids’ medical conditions. Attempting to start to rebuild a relationship that we have had no time or energy for as we fight to save our kids. Trying to take better care of ourselves. I’m running a race. He’s getting back into filmmaking as much as he can.
Am I tempting the PANDAS gods writing this? Probably. But what good is healing if we don’t enjoy it? And how else can we offer hope to families at the beginning of this journey? There is hope. The Bear is not all powerful. He has a soft underbelly where he is vulnerable. And we never stop. We never rest. Until he is dead.