Oh, PANDA, My PANDA

See this beautiful rose?  Henry bought it for me last week.  He calls it a "Sunset Rose".  Isn't it gorgeous?!  It's now my most favorite type of rose.  The "Sunset Rose" reminds me of how Henry sees things a bit different than others.  He names things differently, feels things differently, senses things differently.  And that's just it . . . though he may do all of these things differently than you or me, what he does see, feel, sense is BEAUTIFUL - not only that, but it's all breathtakingly beautiful!  Each of us has the opportunity to see that beauty in Henry, and in others, if we will slow down and watch, learn and open your heart and mind.


Sitting here with Sweet Henry by my side. No, he isn't at school, although he did his best and stayed there for a little while this morning.  Getting to school each morning is a huge goal for us during this particular flare, which seems to present more with physical pain and separation anxiety than with anything else we've seen in the past.  He is calling out my name every 10-15 seconds, even though I am right next to him, in the same room.  He needs to hear my voice because it brings him comfort.

Henry is moaning and telling me about his stomach hurting, his body hurting, his head hurting.  I believe him, and why shouldn't I?  He's already home from school, so he isn't saying these things to get a free ticket from that today.  It's hard for him to find the words to fully express his pain too.
I am choosing to be grateful and my heart truly is at peace - I AM grateful we are used to dealing with this in our Sweet Girls, where they hurt and they cannot tell us what's wrong.  That isn't foreign to us, so it doesn't bring me the anxiety that it could bring others.  I hope that makes sense.  It's amazing how God prepares you for things in your life, isn't it?  Take a moment to look back; how has God prepared YOU for the challenge you are facing today?

Another thing I am grateful for - the anger-outbursts and violence brought on by PANDAS seem to have melted-away into our own world of PANDAS history, and we fervently pray it stays there - in the past, as in we never have to deal with those symptoms again and Henry never again has to feel so out of control physically, that he can only express himself in hurting things around him.

(Click on this link to learn more about PANDAS and PANS)

This is such a tricky journey, this PANDAS Adventure.  It's obviously a turn I never thought we would be taking; one we never saw coming and one that has proved to push and stretch us in every way possible as a parent.

Recently, I received a little book in the mail from my friend Kate C.  Kate's daughter is around Henry's age and she too has PANDAS.  God brought Kate and I together through many mutual friends and her friendship and encouragement has been a breath of fresh air!  I was SO excited to get this little book, "In a Pickle Over PANDAS", as it fully explains this disease in ways a child and an adult can understand.  It's such a great book of explanations, that I felt moved to share some of it with you here today.

I encourage therapists, teachers and 
caregivers to order this book! 

Little Claire wrote a special note to Henry on the inside of the book.  He stared in awe at it at first - it's the first message he has received from a fellow PANDA.  

  Would you take the time to read the vital points this book so creatively and courageously brings up?

• I want YOU to know more about PANDAS so you will know more about our Dearest Henry.  
• I want YOU to know more about PANDAS so you can understand that there is sometimes more to that "bratty kid" at the mall who is running from him mom or hitting her when he seems old enough to know better.  
• There are serious physical and mental diseases and disorders that affect so many children, and
• It is incredibly important for Believers to ESPECIALLY be open-armed, open-hearted and open-minded when it comes to these little ones and their families.  

This is a story of a little boy who comes down with PANDAS.  It tells the story of how it affects him, how it makes him feel.  It's heartbreaking to read as a parent because it's like Henry's thoughts are jumping off the page for us to understand.  

I can physically watch as Henry's thoughts sometimes creep in - how he wants to fight it, and fights it for so long that his "brain hurts".  Sometimes he has fought so hard that he just has to rest from the typical, outside world (like with school). 

True example of children with this disorder.  Their brains literally swell, as do their joints.  It is painful and we can't just tell them to "buck up" because the struggle isn't on the outside or because it isn't visible to us.  Would we do that for an adult?  

This is such a picture of Henry and is issues with school.  It's hard for me to put it all into words, and yet this little book explains it so clearly.  

The book goes on to talk about anger, burning inside you, wanting to come out (what we call 'anger-outbursts)..  It also covers the fact that the little boy starts taking medications to help his body and brain feel better, how he visits doctors in other states and how ultimately, his parents figure things out and his life settles down.  

Yes!  His little life settles down!  We've seen that with Henry, in between flares, but we do long for more of them.  I will take these type of flares over the physical ones any day.  But I don't want Henry to feel ruled by his body or his physical pain.  I don't want him to be trapped by his thoughts and fears.  I don't want that to stop him as a child, as a teen or as an adult.  

While it's easy to shut these little ones and their families out and easy to judge the parent (especially in the middle of the grocery store when the 7yo in front of you is having a meltdown over a piece of candy in the check-out line), it's important to remember there is always MORE TO THE STORY.  Most of the time, it isn't "just" a tantrum.  Maybe there ARE medical issues going on.  Maybe the family has gone through stress or loss.  Maybe the child has been traumatized.

As Believers and Followers of Christ, here is the bottom line:  

It does NOT matter why the child is acting out - 

it only matters what our response will be to the child and to the caregiver who is with them.  .

GRACE.  MERCY.  LOVE - reckless and undeserved

I challenge you to look out for the families like these (like ours), out in the day-to-day.  Seek them out and love them!  Ask how you can help in the store or in the mall.  Pick up an item that a child has thrown on the ground.  Here's a big one:  MAKE EYE CONTACT.  Little things like this show great love and compassion, and those are the things that lead others to Jesus.  

Love Is the Greatest - I Cor.13:13-4;11-13

13 If I could speak all the languages of earth and of angels, but didn’t love others, I would only be a noisy gong or a clanging cymbal. 2 If I had the gift of prophecy, and if I understood all of God’s secret plans and possessed all knowledge, and if I had such faith that I could move mountains, but didn’t love others, I would be nothing. 3 If I gave everything I have to the poor and even sacrificed my body, I could boast about it;[a] but if I didn’t love others, I would have gained nothing.

4 Love is patient and kind. Love is not jealous or boastful or proud 5 or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. 6 It does not rejoice about injustice but rejoices whenever the truth wins out. 7 Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

11 When I was a child, I spoke and thought and reasoned as a child. But when I grew up, I put away childish things. 12 Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity.[c] All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

13 Three things will last forever—faith, hope, and love—and the greatest of these is love.