The Face of PANDAS

WEARY, and yet I flinch at the thought of boring you with more painful details of our harried life. Even asking for prayer feels intrusive today, for some reason.  To be truthful, my heart often is burdened with the thought that we ask too much of our friends, family, blog-followers, and prayer warriors. Even though I do not like it one bit, we are STILL in a season of survival and illness, and that means we often have to receive.  What we REALLY want to do is GIVE.  Give, and give, and give, and give.  That's what our hearts long to do, and while the Lord does give us many chances to give, we yearn for the day when our family no longer has to be on the receiving end so often . . . 

See the precious little boy in these pictures?  

He is a picture of PANDAS.  The face of it, if you will, and this . . . THIS is what a raw picture of PANDAS looks like:

Imagine your clothes actually hurting your body or bothering you so much that you have a panic attack because of how they feel on your skin?  Sensory issues cause Henry to choose things like this - a silky pirate shirt and a pair of his sister's pants.  He doesn't care what anyone thinks.  This is the only thing that feels good to him during this flare, so this is what he wore all day - even to our appointments.

PANDAS looks like the deep scratches I have on my arm from a little boy who's brain is on such high-alert;  under so much stress, that he lashes out uncontrollably (and most of the time his anger is directed right at me because I am the one who is with him the most). He doesn't know how strong he is.  The experts say that he sincerely does not know what he is doing.

This ugly disease looks like the raw fear that was in Henry's eyes today as the nurses held him down in order to get blood drawn (it had to be done for DNA testing conducted for his benefit).  That fear was so disturbing to me as his momma.  It broke my heart to know that Henry felt out-of-control, and that he didn't know what was going on because he couldn't stop screaming long enough to listen.  His eyes were full of PANIC.

PANDAS looks like OCD which gets worse during a flare, and in Henry's case, causes him to pick at his scabs and "bumps" until they bleed.  It looks like a little boy jumping over the lines and dark tiles on the hospital floor, because he is terrified of stepping on those lines and dark tiles.  Henry's focus has been on minecraft, a building game that he plays on my phone.  He can't stop thinking about minecraft.  He can't stop asking Conner to play it with him.  He can't stop asking me if he can use my phone.  He goes to sleep talking about it and wakes up (sometimes in the middle of the night), and immediately comes and gets my phone to play the game.  PANDAS causes obsessions that cannot be controlled.  

Hitting, kicking, biting - a "fight or flight" response to every new situation . . . that is what PANDAS is for Henry.  He feels threatened by new people, new places, loud noises, and other sights and sounds.  And the fight-or-flight response intensifies dramatically during a PANDAS flare.  We don't know what will set off this response, and as a mother, it's terrifying not to know what is causing your child so much distress.  It's like an incredibly hard seizure, but I don't know what caused it and I don't know when it will happen again; I have no idea how to put an end to it.

Wet pants and puddles on the ground during the day; sheets soaked with urine during the night.  Henry's brain isn't able to give his body the right signals, and when the signals do come, they are often too late.  It happens at school, at the mall, at church, at a friends house - anywhere.  I've started packing an extra pair of clothes for him in a little bag of his choosing.  A diaper bag, so to speak. It doesn't bother him now, but how will he feel about it in the future?  

PANDAS looks like a six-year-old, hulk-of-a-boy who isn't afraid of anything.  FEARLESS.  Senselessly fearless to where he will talk to anyone, play out in the street, attempt to jump off the roof of a car or the top of the swing set.  He does not understand consequences.  A child who is senselessly fearless and who doesn't care what the outcome is, even if he gets hurt (truly, he does NOT care) . . . how do we love and protect him through this?

PANDAS.  I hate it. I hate is just as much as I hate NKH, the disease which took Ellie Kate's life.  I hate it because it's taking Henry's life - his freedom, his personality, his friendships, his schooling, every relationship he has (even with our pets).  The girls were born "sick", but how can a perfectly healthy little boy change so much so quickly?  How, Lord?!  WHY, Father?! Spare Henry! Spare Lucy!  Spare Conner from the chaos of it all! 

So, this is where I will leave you tonight, without asking for prayer or for anything, because I'm tired of asking and I'm tired of putting our burdens on others.  It's been nine years since I've been posting and blogging, and that's a LONG TIME! Tonight, I'm only sharing and you only do what the Lord lays on your heart to do. You know, that's really how we should approach everything in life anyway, right?  

So, let it be.