Sometimes I’m scanning Facebook, and I see an awesome post that would make a great PANDAS Sucks Guest Blog. If I’m lucky, the person that wrote the awesome post agrees to run it on the blog. That scenario just happened over the weekend when I saw my friend Gina Jurek’s post pop up in my News Feed. I read what she wrote and knew it would really resonate with a lot of folks. I asked Gina about guest blogging, and she said yes. The post was shared inside Facebook several times already, but the beauty of it being on this blog is that it can help folks today and tomorrow and next week and even next year. They might be reading through the PANDAS Sucks web site and find Gina’s message on the very day they need them. That stuff happens a lot, eh? <3
Saying that it is difficult to care for a chronically sick, immune-compromised child is an understatement. PANDAS/PANS doesn’t come with an instruction manual. Most days we are all just doing the best we can for the little people we love. Add into the mix opinions and criticisms from people that have no idea what it takes to care for a PANDAS/PANS child. Here are Gina’s Words directed at those folks who may not understand:
Dear Everyone NOT Caring For A Chronically Sick, Immune-Compromised Child On A Full-Time Basis:
Us Mom’s mostly (sorry, but true Dad’s) find ZERO pleasure in being tired, bitchy, cranky, defensive, sleep-deprived, plan-avoiding, plan cancelling, paranoid, anxious, depressed, traumatized, and every other description that might run across your mind when you think of us. We aren’t “looking for attention,” or “coddling our children,” or “being passive,” or “lacking disciplinary skills.” We don’t find pleasure in finding exactly which battles we’re going to choose today in order to not have the entire day, week, month, or year be a FULL-TIME BATTLE. We don’t spend hours on the Internet, seeking research articles, medical information, and the best prices on the latest supplement that may or may not make one bit of difference for our kids because we enjoy it. We don’t lose our ever-loving minds when we just can’t.take.another.minute.of.this.hell because we’re weak.
I can tell you what we DO make happen each and every hour of each and every day… we do everything in our power and strength to ensure our kids get enough rest, because without it, a meltdown is a certainty. We ensure our kids are hydrated and fed what they can and/or will eat because it’s not about them just being picky about foods, it’s about simply eating “something” that doesn’t make them worse. We count pills and liquids and whatever other “trial regimen of the week” we are trying for them and not only place each of these in a daily pill-box of some sort, but we count & check over & over because we can’t stand the thought of giving them more than what they need, or less than what keeps them at least partially well. We write journals of everything that matters, keep a current list of meds & supplements (which changes often), & are constantly keeping up with refills, new items, and what’s covered by insurance, and what’s not. We consider every single plan outside our home in detail & what may or may not work for this kid for this day. Is there too many people there? Is the noise too loud? Are the lights too bright or flashy? Is he/she going to be able to handle him/herself in this change of scenery without a full meltdown? We call and basically become “regulars” at our doctor’s offices because they see us so often they know us by first name. We look over lab work results, we hang our heads in defeat once again, because although they may be somewhat stable for the moment, their bodies aren’t healing and any day could be a huge setback. We spend hours explaining and mostly defending what we have to do in order to have a semblance of normalcy in our lives, all while realizing that most of you just roll your eyes and think, “well that doesn’t make sense to me.”
Pleasure…. What’s pleasure or happiness? Right now, it’s simply a day without a crisis, or a few hours of time to ourselves, or an actual smile or laugh from our children.
Why did I write this? Because before I knew this life, I was like you. I inadvertently judged what I didn’t understand. I was sure certain kids needed a good old-fashioned spanking. Some still might, but I personally am FAR MORE LIKELY to consider the bigger picture of what I may no have a clue about. I know now that many parents are just basically trying to get through one day at a time with the best skills and patience they can muster. For every one of these families, my heart goes out to you & if I know your story, I AM praying every single day. Warrior on!
You might recognize Gina’s name from the PANS/PANS Documentary – My Kid Is Not Crazy. As a full-time Caregiver to her grandson, Logan, Gina knows what PANDAS is really like. And with her willingness to advocate for her grandson and all of our kids by participating in the movie, it’s not surprising that her words here would ring out as more advocacy and awareness. She truly is a Great Warrior and is Warrioring On! (NOTE: You can buy a My Kid Is Not Crazy DVD or pay to watch it online by clicking here. Also, that’s Gina’s grandson Logan on the DVD cover and on the home page for the documentary. )
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings” and a volunteer and technical adviser for the PANDAS/PANS documentary “My Kid Is Not Crazy.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.