Thursday, December 6, 2012

Peace with PANDAS

The day finally came.  I knew it would eventually.  Now, it's here.  The day B is aware that his tics make him stand out and he feels the need to hide them.

We've had a very good month.  It was one of those, 'so this is what it feels like to not worry about PANDAS' months.  Almost all the symptoms had disappeared.  It was a refreshing break for us, but especially for B.

I knew it wouldn't last forever.  It is cold and flu season, after all.  On Tuesday, his handwriting tanked.  That was our first sign.  It took him f-o-r-e-v-e-r to finish his phonics worksheet and he cried over spelling.  We shut the books and I decided it was a good day to read science and history books together and to have him practice reading aloud to me.  He enjoyed the gorgeous sunshine for the rest of the day.

I'd noticed some very frequent tics, so I asked him this morning, "Bry, I've noticed your PANDAS acting up again.  Are you okay?"  He replied that he was.  Then I asked, "What does it feel like when it acts up?  Does it make you tired?"  He replied that it didn't, but that it's been making him stick his tongue out a lot.  Then he said, "Mommy, when I need to stick my tongue out at Sparks, I go like this."  He stuck his little fact inside the collar of his shirt.  I told him that it was okay if he felt like he needed to do that, but that he shouldn't feel ashamed of his tics.  I asked him if anyone ever points them out or asks him about them.  He said they do not.  I am so thankful for the kind children at our church and in Sparks...and for the leaders who are so encouraging and accommodating!  I told him that if a friend asks him about the tics, he could tell them about PANDAS.  He said he didn't want to.  I told him that's okay.

Usually, when B gets a flair, I am on anxiety overdrive.  I worry endlessly and become emotional at the drop of the hat.  I become fearful as the what ifs repeat themselves like a broken record.  I feel angry at the world.   This time, it is different.  This time, I have peace.  I believe putting this in God's hands, knowing that He is in control, has brought me immeasurable peace.  I do catch my chest tightening a little with the all familiar stress, but it is easily brought back down with reassurance.  God has a plan for B.  Whatever that plan is, PANDAS will not stand in his way...or His way.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Lately, I've been thinking about this blog and why it was started and maybe how it's veered off course.  I started it, not for attention, but for understanding.  I have seen too many  children unfairly judged, too many parents unfairly judged, by friends and family who do not understand.  I didn't want B or our family to endure that kind of judgement.  I wanted B's tender heart to shine through this blog.  I didn't realize I would turn inward so much and reflect my own heart...even when it's not pretty.  But that is the process, and if it has helped other parents to know those thoughts and feelings are normal, then I am glad.  I really do hope to write more on the amazing-ness (It's my blog, I can create words...right?) of B.  We were truly blessed when God entrusted us with this sweet little boy.


  1. <3

    Blessings to you and B. I have benefited from your writings and journey. I'm thankful for you, friend.

  2. I am going to see if your blog will now let me comment on your blog. I hate when our kids start realizing what they do isn't what others do or have to do. Our 7 year old is just starting to get a tiny glimmer about this. Sigh. BUT, what a blessing your post is about B. Hugs to you, and him.