I have a confession to make… sometimes I really suck out loud at practicing what I preach.
When I started this blog, we’d had many months of struggle, but I was actually in a pretty good place at that moment in time – I can see that now because I have found myself smack dab in the middle of a place that feels far less comfortable!
As I shared in my last post, Peach got a diagnosis of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, aka PANDAS, in January. And as any parent of a PANDAS (or PANS – same illness, different triggering infection) child will tell you, when you’re living it, it’s all PANDAS, all the time. At least in the early stages of illness, treatment and recovery.
And while Peach is making progress in the right direction since we started treating her condition, it continues to be a day-by-day (and some days, hour-by-hour) thing that consumes what feels like EVERY WAKING MOMENT. It is challenging, exhausting, HARD work caring for these sweet kids when they are struggling. So desperate are we as PANDAS parents that we spend our days and nights searching the Internet for answers, scouring medical articles that make little sense to us, posting questions on Facebook pages, reading books on brain disorders, and brushing up on the benefits of anti-inflammatory diets, essential oils or countless other holistic treatments… This is because PANDAS is so misunderstood and misdiagnosed by the worldwide medical community that, in most cases (including ours) the parents are actually more knowledgeable than their child’s pediatrician or even the “experts” (pardon my obvious, obnoxious cough here) at the local children’s hospital.
In other words, we spend an inordinate amount of time focusing on PANDAS/PANS. How can we not, when our kids’ brains are on fire, when they are so sick they cannot eat or attend school, are attacking their siblings and leaping from moving cars, and yet no one is doing anything to help us???
I recently watched an interview on youtube with Dr. Beth Latimer, one of the top (and frightfully few) doctors in the U.S. that treats PANDAS/PANS. She was talking about school, and about how many of these kids are not able to attend… and she mentioned how it struck her that PANDAS parents DON’T CARE that their kids are missing school, so desperate are they to just freaking SURVIVE the day. She said, “Even the parents of kids with leukemia are worried about school,” concerned about how their kids are missing and how can they help them keep up during treatment, but PANDAS parents JUST DON’T CARE. Our lives are turned so upside-down that fifth grade is, frankly, at the bottom of the priority list. Getting our kids to simply eat or take their necessary meds or stop banging their heads against the wall in frustration MUST take precedence over the missed history of the Incas, the Aztecs and the Mayans. Because none of that matters one stinking iota if the other stuff isn’t happening…
Which brings me back to the title of my post.
This morning was one of those mornings where I felt compelled to get on top of things early. Guitar Man and Dragon were out the door, Peach was still asleep, and I decided to clear off the counter and load the dishwasher, rather than leap headfirst into my daily PANDAS pursuit. And it felt good! I’ve always enjoyed accomplishing little things like that, because it’s an easy way to boost my spirits and steer me in a more positive direction.
I focused on appreciating the kitchen window I’d recently cleaned and on Fluff (yes, we name our houseplants here,) my little Christmas cactus that sits on the sill, and while the dishwasher kicked into action and the sink filled with bubbles, I grabbed my iPhone and found an Abraham-Hicks talk on youtube, one entitled, “Act As If You Already Have It…” You may not be familiar with Abraham-Hicks, but boy, do they take me to a better place, or as they say in their book Ask and It Is Given, make me “reach for a higher-feeling thought.” This talk was exactly what I needed to hear today. A-H regularly discusses “getting on the right frequency,” and focusing on what you DO want, rather than on what you DON’T want, as most of us tend to do. And as you cannot hear Hip-Hop by tuning into a Country station on the radio, you need to move the dial, change the station so you’re receiving the stuff that feels right to you (and if it feels right, that’s a good sign it IS.)
So this spiritual kick in the pants was the Universal reminder I’ve been needing, to step back from the PANDAS channel and tune into the contrasting one we live for, a frequency of health, happiness and prosperity, rather than one of gloom, doom, and woe-is-me. I’ve been riding that “low-flying disk” for months now, dragging myself through the mire of illness, frustration and often, despair. I’ve attended countless school meetings to talk about how we might get Peach back into the classroom, I’ve visited pediatricians, counselors, and chiropractors, I’ve watched endless videos online of people discussing this treatment or that one… and in the end, it’s all helped some, but there’s no magic wand at play here (though I sure wish I had one.)
Starting today I’m going to follow my own advice, and launch my personal little Law of Attraction experiment – I’m going to do my best to avoid reading or talking about anything PANDAS-related for a few days and see where it gets us.
Come to think of it, maybe there is a magic wand… I’ll let you know.