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Tuesday
Jul312018

PANDAS Mom on PANDAS Island

I am a PANDAS mom. I am 1 in 200, maybe less. Yet I feel like we, my kids and I, are on our remote little secluded island, surrounded by water, with telescopes that can view the mainland in all its burst of colors and activities. There are many of these secluded islands. You may even know a few moms that are living out there, and they may be PANDAS moms or other type of moms. You may even have a map of some of these remote islands.

 

But this is my story. See, I started out on the mainland yet I didn't know I was there, really. I had my own struggles. The ones that I now know as Before PANDAS. Before PANDAS, I only knew of raising my children, being a wife and a mom, then a single mom (that's a different story). I knew about the struggles of normal childhood development, and chatted with other mainland moms about the challenges of motherhood while working- breastfeeding (& pumping), toilet training, the "terrible" twos, and then "threes", vacations and illness, sibling rivalry, preschool and school, homework, and having little to no time for the things I used to enjoy. But these were Before PANDAS (let's say "BP" for short) struggles. In the BP timeline, my kids and I were seen and accepted in mainland society. The struggles we faced were acknowledged and encouragement was offered in bundles. I didn't know the benefits of that membership, until we were no longer there. See, even with the BP struggles, a mainland membership included get togethers and activities with other mainland families and groups- playdates and afterschool fun, potlucks and "moms only" dinners, kids’ camps and chatting with moms in the outskirts of school programs, birthdays and parties, lunches at the local eatery, and weekly outings as a family.

 

You may be thinking, "what's the problem? you can still do all of that", but you are living on the mainland with that wonderful all-inclusive membership. Before I could blink, my kids and I were no longer on the mainland. I woke up on the island, my little PANDAS island. I should have noticed the shift. It happened gradually at first. As our BP struggles morphed into, well, MORE, our mainland all-inclusive membership started getting more and more restrictive. Maybe it shifted, unnoticed to a trial membership- almost like a "well, you can stay on this trial membership for little while, but we need to see that you are back to the "regular" BP struggles or we will have to kick you out" membership. Yes, my trial membership was short lived. At first, they took away the afterschool fun, the chatting with other moms and the playdates. I didn't notice because I was dealing with the MORE struggles. See, I still considered myself a mainland mom. Then they reduced the potlucks, lunches and dinners, birthdays and parties. "How didn't you notice?" you may wonder. Well, when you are placed unknowingly on the mainland trial membership and are dealing with MORE, its impossible to notice the time away from these past all-inclusive activities until they literally vanish.

 

When I woke up on my PANDAS island one morning, I definitely noticed. It was heartbreaking. There was another level of grief that I don't think I can explain to a mainlander. There are moments from that time that I can only whisper to the wind. I also didn't know I was on a PANDAS island. To me, it was just an island and I didn't know how or why I had suddenly arrived. I kept trying to move back to the mainland but it was impossible. I tried different things. I reached out to my mainland "fixers"- you know, the ones that are supposed to help with any MORE issues. The ones listed on my membership card. My expired membership card. But I didn't know that "fixers" only help mainlanders. They looked at my card, and they kept trying to send me to other mainland fixers. One pointed to another, then that one to another. How does a mainland fixer help you on a PANDAS island unless they physically come over to your island? They don't. I still kept trying. I can tell you about all the time lost spent trying to stay on the mainland, and get help from mainland fixers, but it will make you shake your head and think me an idiot. I definitely feel like one sometimes. That's one effect that the island has on me. It's one I still struggle with.

 

But enough of my Before PANDAS timeline. Let me tell you a bit about my little PANDAS island, where I still reside. After a while of being on my island, realizing I couldn't move back to the mainland and wanting to know my island's name, I reached out to other island moms. I could see them through my little telescope scattered across the vast ocean. Even though they didn't know the name of my little island, they immediately knew of my journey there. They had been kicked off the mainland too, and remembered the heartache, grief, and isolation of waking up on their little island. They had island resources painstakingly gathered over time and offered encouragement. They could easily travel between islands and also had a list of mainlanders who were willing to travel to islands. I found myself suddenly embraced into these Islanders, a secret exclusive membership of island moms that became my lifeline. One of them was on her own little PANS island, a sister island to PANDAS. She noticed the similarities and gave me the name of a traveling mainlander who knew all about my PANDAS island. In fact, she used to live on one. Armed with the name of my island, I could now figure out how to start living there. Living instead of drowning. I needed to stop trying to swim to the mainland and instead focus on building a safe space on my little PANDAS island.

 

We have now been on my PANDAS island for a while. I can't say that I don't miss the mainland, but I'm more realistic as to the fact we may never get another membership there. I'm able to visit the mainland during good weather, meet up with mainlanders and commiserate on regular old mainland struggles- all the while keeping our little PANDAS island private. There are some mainlanders that I've opened up to about my PANDAS island, but I know they can never truly grasp the sharpness of our journey, the bitter taste left in my mouth and the overflow of grief over lost future mainland adventures. The tickets I've had to throw away. The dreams lost. The daily island struggles that are oh so much MORE. Now that I know my island's name, I've found other similarly named islands and those moms really understand the full spectrum of being an Islander. And living on my PANDAS island. They are also PANDAS moms. What is a PANDAS mom, you ask? It doesn't really matter what got us to that island. I wish for you to never understand that spectrum. May you always enjoy living on the mainland. The only thing I would like is for you to become more aware of the other islands, so that if you or a friend wakes up on an island, maybe even one called PANDAS, that maybe you/they wouldn't have to struggle quite as long before finding its' name and joining the Islanders. And maybe, just maybe, with this understanding will come more acceptance. Perhaps we can even visit each other more often. With enough visits perhaps the memberships can be disbanded altogether, and we can all be just moms.

 

~One PANDAS mom

 

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