So, just to catch you up, Henry has been doing really well. We've felt that his PANDAS has been under control. Last week though, we started seeing a few signs that something wasn't right. Henry had a seizure a week ago Monday, then he had a few little outbursts of being defiant and super angry. Trust me, this isn't your typical childhood tantrum.
This kiddo hit two home-runs last night!
Running those bases
Last night, the Father woke me up. I did NOT want to get up, ya'll but I knew the Lord wanted me to check on my children. I thought He wanted me to check on Lucy for a particular reason, but when I walked out our bedroom door, I saw Henry jumping on the couch. It was 3am and he was watching the Disney Channel, bouncing around the room. It was like a manic-type episode of glee and extreme energy. It took a long time to get him to settle down and get to bed.
Late this morning, it became apparent that Henry is experiencing a flare. This means that his brain is inflamed, causing him to act-out. He was angry and aggressive, throwing things around. Henry truly cannot control his behavior, so we really cannot discipline him. What I CAN do is try to re-direct him. I understand that many of you won't understand that I cannot "make" my son do something, or you might think that I'm just not disciplining him correctly. I assure you, that is not the case. PANDAS is a true disease, a syndrome that attacks the brain and makes it misfire.
There are some differences with this flare. Henry is in an extreme amount of pain. It actually comes and goes in waves, which I am grateful for, but even slightly touching him at times, causes him to scream out and cry crocodile tears. His head pounds. His neck hurts. His joints hurts, which means he pretty much hurts all over.
I've read many articles concerning PANDAS and the behavior that comes along with it. There are several cases where the child feels like they are dying, or even tells their family that they are dying. Without giving all details, Henry was stating many of these same things today. He had never read those articles, obviously. He has never heard me talk of them, because I haven't. He said these things on his own because that is how he was feeling. Your brain gets so inflamed, you hurt so bad, you get to such a bad place, that you think you are going to die. Can you imagine? I am SO grateful that these feelings quickly pass, and I am grateful to have received encouragement from other PANDAS mommas whose children have been through this exact thing.
I'll be honest . . . I cried today. I cried because of the hurting Henry is so obviously in. I cried because Conner has to see this, hear this, be around this and it just isn't fair. I cried because I don't know what to do to help either of my boys. I cried because everything was going so well and then all of a sudden . . . BOOM . . . it's not. For a moment, I looked around and started feeling sorry for myself, seeing the broken freezer, the messed up TV, the banged-up van, the fact that we won't be able to move this summer. Oh, and the fact that my husband has an amazing job and yet we are still bogged down with medical bills of all sorts with no end in sight . . . THEN, the Holy Spirit sweetly whispered to my heart and reminded me who my hope lies in. His hand gently lifted my chin and I looked into his trustworthy eyes. HOW GRATEFUL I AM THAT MY HOPE DOES NOT LIE IN THE PHYSICAL!!
Really and truly, Friends - if we look around ourselves, EVERYTHING is falling apart. Even our bodies are falling apart (holla' to my fellow middle-aged mommas!). We can't change it, we don't know how to make it all better, so we must run to the only one who knows the answers.
I looked up the definition of "Hope" this morning for my original post. I didn't know how much I truly needed to be reminded of my true hope in Christ! How faithful is our God, who speaks to us at the most perfect of times!
According to Merriam Webster, Hope:
1. "to desire with expectation of obtainment"
2. "to expect with confidence : trust "
Ya'll, I have a true expectation that MY GOD knows it all. He knows the ins and outs of PANDAS and the ins and outs of Henry. I KNOW that this world is not my home and it isn't the home of my children either. I've got one little girl already experiencing the perfectly complete, everlasting life that Jesus offers, and she is no longer suffering from ANY ailment of ANY kind. That will be Henry someday, and Conner, Lucy, Mike and myself! My confidence isn't in this world. It isn't in the advice I get from others. It isn't in the wisdom from doctors. It isn't in oils or medication or any passing fad. My HOPE is in Jesus Christ, and He will never change when everything else will.
Sweet One, do you have a hope in Jesus Christ? Do you have confidence in His Word? Do you have confidence in His promises to you? Do you have confidence in eternal life? Can you expect the Ultimate Healing, life after death? You can. You can, and it is so easy. All you need to do is surrender your all, your everything, to Jesus. Ask Him to take over. Recognize that you are broken - that you can't do it on your own. Choose Jesus. HE is BETTER. You won't regret your decision to hope in Him.
Hoping in My God to take care of it all (the fridge, the van, and MOST of all, the health of my children!) . . .
Ryan
Your blog about your sweet children has helped me become more tolerant of children crying or acting out. We don't always know what that family has going on or what is wrong. Thank you for sharing. Will continue to pray for your family.
ReplyDelete