2 PANS kids fighting lyme and coinfections, our journey to healing

How Many Times…

How many times …

I had reason tonight to go back over a series of blog posts about a program we had completed in 2011. As I was reading through the Brain Balance blog roll I realized we had actually finished that program with hope in our heart and a skip in our step. Okay perhaps we were not quite that enamored but certainly, we felt like we were in a really good place. When I wrote any of those earlier blog posts, I had no idea that those brief periods of respite (that we celebrated so much) would last a few months and then cycle right back around again. In reality, by the end of 2013, we had cycled into a far worse place than we had ever been before. If you have read this blog from the beginning you will know that that was quite an achievement.

By September 2013, a truly awful milestone had been reached. So even though we had enjoyed slightly better behavior, slightly less stress, slightly calmer days and nights, and definitely more cognitive ability during those 12-18 months after the BB program, it didn’t last, because in our world recovery has never lasted.

Why even write the blog? I don’t make money doing this. I lose sleep because I only find time to do this late, late, late at night. I don’t have a million subscribers or even a YouTube channel. I often ask myself what’s the point, why do I keep writing this? Living in the chaos that stretched into years, I knew I would forget the nuances, the little things, the truly chaotic nature of what was going on and when? Although it probably would be better for us all if I had just forgotten a lot of what happened and moved on. Initially, I truly hoped someone would read what I was writing and say “I wanted to contact you and let you know, I know what this is, I know how to help you” but as desperate as we were that sadly never happened. We spent years hoping for the cavalry and by the time I started writing this blog we were really heartbroken and lost about what was going on with our beautiful, cute, adorable son. It was only many years later it eventually occurred to us WE ARE THE CAVALRY. We have spent years on this hamster wheel, praying to get off never really knowing how but we never stopped trying. I, like millions of other parents, refused to give up. When we went from one doctor to another, from one mediocre treatment to another, we never gave up.

When I first learned that we had a spectrum disorder at 18 months, I thought to myself “well, we are not doing this, he’s going to be fine” and being who I am, I got on with the business of healing my child. I really thought, for sure by the time he was 3 we would have this thing resolved. I wasn’t worried. I had it in hand and was egotistical enough to believe that by the time he was eligible for early intervention, we wouldn’t even need it. Later, when the Easter Seals combed over paperwork the Arizona Early Intervention program had sent when we moved, I assured our caseworker that we would be done before his 3rd birthday and a place in the local school district was unnecessary. Just help us get settled I had said and we will take it from there. Yet when he started developmental pre-K on his 3rd birthday, screaming relentlessly as I left him at the school, I allowed them to placate me as they reassured he would be fine and I thought, “Okay, I am a little disappointed we didn’t get to where we needed to be already but by kindergarten, we WILL be sorted.” It turned out that kindergarten actually went pretty great. We figured we were making progress, we congratulated ourselves because what we were doing was working. A little later, when we again began having challenges, I really still had great hope. As part of that hope, we switched to a private school for 2nd grade, I thought, “HA! I had missed a part of our puzzle, I believed I had figured it out. It was the school that was the problem. I naively thought, “the new school will make it better for us all” and for a while it did. Around this same time, we had completed Brain Balance and then chose to re-enroll in another round of OT about 6 months later. It was actually going well in the small Christian school he was enrolled in.  However, we all know how this story goes and by the end of 3rd grade, we found ourselves right back to square one. It was a perfect storm of both a challenging teacher and what we now know was a defunct immune system.  These autoimmune triggers can wax and wane depending on environmental situations, bacterial exposures, viral loads and even just from the etiology of the disorder, we didn’t know this at the time. Those behaviors were actually a symptom, not a side effect of what was going on. Those behaviors controlled all of us because we never truly knew what we were really dealing with. Even though many, many, many times we allowed ourselves to believe we were on the winning side of all that was going on.

Anyway, nostalgia night, that’s really all this post is about. I have been reading back through my blog and I see how many times we truly believed we had cracked the code. Even now – as well as we are doing – I know to err on the side of caution. I know from past experience this recovery could just be a fake out, this could all be smoke and mirrors. What we have going on may just have hit a down cycle and that alone might be the reason for our calmer normality. Next week, next month, even next year we might very well be right back where we started, but until then we choose to believe the cavalry finally arrived. Ever the optimist, I am choosing to believe that this time, this is THE time we finally have it figured out.

2 Responses to “How Many Times…”

  1. Susan says:

    You are a gifted writer and amazing mom who so eloquently states what so many out here feel. Please keep writing!

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