Happy Thanksgiving

Well, friends, it's been eleven days since I posted and so much has been going on with Julie that I'm not sure where to start.  Some of it is encouraging while other parts of it are just so darn frustrating not only to Beth and I but Julie too.

Each day we are faced with the reality that God has placed this child in our care and, above all else, He reminds us that there is absolutely no other parent that He would have rather had take care of His child than us.  In the heat of the battle we sometimes forget to give thanks to our Lord and Savior for the many blessings we have, including a child with PANDAS/PITANDS/PANS.

The challenges are still there, such as:

• Still on 750mg Keflex/day after attempting for 3 days to drop 250mg.  Her response to the lower dose was almost immediate once it leveled out at 500mg; pure PANDAS symptoms exacerbated.
• Still on 3-5 crystals of Stramonium each day as her ND Homeopathic physician prescribed.
• Sitting on the toilet for anywhere from 5 to 30 minutes at a time (especially at bed time).
• Avoiding strong smells so she "doesn't rage" (her words). 
• Still will not wash her hands with soap other than the liquid soap we've used all her life.
• Ever since Beth roasted a chicken in the oven last week and it smoked up the house, Julie is obsessed and fraught with anxiety around cooking food in the kitchen.  Last night when I came home from work, she was weeping at the steps of the garage because the house "smelled horrible," because Beth used the oven which still had some splatters in it from the chicken that hasn't burned off yet so that caused her some grief.  I actually told her to go out on the driveway, sit there and stay until she can control her emotions over this.  It took her about 20 minutes, but it worked.  When she came back into the house I told her that I was very angry that we have to continue to have the same conversation about smells; they are not permanent, they will not hurt you, and they go away, yet she argued back that the smell of the horses she's around are not the same as the smells in the house.  I argued that they are the exact same thing.  The only difference is that she is not in control of the smells that she has not allowed herself to relax around.  She has a choice to make about smells; either let them control your emotions, or you control them yourself.
• I thought that was the end of it for the day.  That is, until I made popcorn.  The good news is that she actually stood over the popcorn as it was popping (yes, we actually use the old fashioned skillet, oil, butter and electricity) and said she's controlling herself because she likes popcorn.  However, after the popcorn was ready I noticed her tucking her pony tail in under her shirt so that it would not smell like the popcorn.
• For the past two weeks since the chicken roaster incident, she has kept both her bathroom and bedroom door closed so they will not smell like the kitchen.
• Tonight when Beth made stuffing for Thanksgiving dinner at my sister's house, she fell apart because the house smelled like stuffing.
• When we got in the car tonight to go home from my sister's house, Julie started complaining that her hair smelled weird.  By the time she got home she was crying and weepy about it, but I refused to smell the hair that she pushed into my nostrils demanding I agree with her.  We managed to get her to brush her teeth and go to the bathroom for her bedtime routine when out of nowhere I heard, "Oh my gosh, NO!!"  She came running to me in my bedroom to show me one of her beautifully long fingernails on her thumb had ripped pretty low into the nail bed.  She fell apart saying she was a stupid idiot and always making things worse.  Well, after waiting for her to calm down and listen I sat her on the bed to talk her through her emotions.  The key was to help her keep it in perspective.  Here's the mantra I went through:
• Julie, remember what you were going through two months ago?
• "Yes."
• How did your fingernails look then?
• "They were gone."
• Why were they gone?
• "Because I pulled them off."
• And how did your toenails, eyelashes and eyebrows look?
• "They were gone, because I ripped them out."
• So, fast forward to today and tell me, Julie, how are your toenails, fingernails, eyelashes and eyebrows now?
• "They are there now."
• Why?
• "Because I left them alone."
• Julie, you are a beautiful young lady not because of anything on the outside.  It's because of your beauty from inside your heart, your spirit and your mind.  These outward things that are growing and you're leaving alone tell me that you are actually starting to feel differently about yourself; you feel beautiful and more confident.  This broken thumbnail is not important, it's your emotional reaction that is.  How important is this broken nail compared to the challenges going on around the world and in our own city?
• "Not that important."
• That's right.  Keep it in perspective, Julie.  Look at where you are today as compared to two months ago.  You are improving each and every day because you want to improve and we have the right remedy helping you along the way.  This nail will grow out if you give it a chance.  Just keep your perspective in all things and don't blow them out of proportion.  Yes, I get it; at 13 years old you want to look pretty and not have people judge you for looking different or acting different.  I've been there too.  But look beyond yourself and see the world around you and the troubles that God has not put us into.  Keep it in perspective.
• Well, that worked until we started filing that nail down to keep it from snagging more.  She immediately sniffed the thumbnail and said she didn't like the smell.  So, we had to go through the mantra again about using her tools, such as when she feels compelled to smell something that she knows will just make her mad, do the opposite and don't smell it.
• We finally got her to bed at 10:00pm tonight after a 20 minute toilet routine.

Beth and I are going to relax on the sofa for a short while before retiring tonight.  I pray that we, as parents, keep it in perspective too.  Yes, it's aggravating, frustrating, irritating, and sometimes feels futile to keep fighting this moving target.  However, each day there's signs of hope that she is winning the war even when some of the battles are lost.

My prayer for each of you reading this blog can understand that you're not alone in your struggle and God would not have put us in this situation if we could not handle it and still glorify His name through it all.  Yes, it's not fair.  Yes, it's heart-wrenching to see your child go through this.  Yes, it can sometimes make you and your spouse feel miles apart when you need so desperately to be together in this struggle.  But know this; Yes, He loves you.  Yes, He listens to your prayers.  And yes, your family will be blessed through it all.

Happy Thanksgiving to you all,

Mark