Recently we had the opportunity to meet up with some members of our online support group. There’s something so immensely comforting and rewarding about being in a room with other PANDAS/PANS parents – to finally connect with the people who’ve “saved” you time and time again. These are the people who’ve talked you back from the edge – brought you back from the brink of insanity. Day or night – they are there. To be able to hop online to your support group anytime and vent, cry, or even celebrate successes (no matter how small) and know that someone will answer and understand perfectly. They know you in a way that others can’t truly understand because essentially you are all living the same life. They know the most raw, challenging parts of your life that you may not share with others. They get it. Because they live and breathe it too. I am more thankful for these people than I can even describe.
Some people talk to each other nearly every day. One mum and I have joked that we wished we lived down the street from each other so we could help each other in a crisis, and drink wine and cry on each others shoulders. When I met these mums it’s like an instant familiarity. It’s like looking in a mirror at myself. The common thread that ties us together – our children! There are tears, hugs, laughter, brainstorming, and lots of conversation. It was wonderful to see some Dad’s make it out too. I know that, like my own husband, many are apprehensive, but it’s a good chance to connect with other men who are going through exactly the same thing. And, after a drink or two they are just fine.
Of course, when we came home, Grandma said that Panda had been as good as gold. But since being home he has been wild. We have been trying to leave the house since 2:30pm and it’s now 4:20pm and we are still at home. In that time he has been hungry, but the pancakes were too hot or too cold, the pancakes soaked up the syrup during one of his meltdowns so now there isn’t enough syrup. Here it comes: the domino effect. He needs to pee but won’t. His sandals were left out in the rain so he can’t wear them, but none of the other shoes feel right…they’re too tight, too loose. He wants socks. But they don’t feel comfortable. He can feel bumps on his feet and it’s bothering him. His glass of water is too full, now it’s not full enough. He’s running wildly, screaming, thrashing around, pupils dilated. We didn’t make it out of the house today, but that’s okay. He’s possibly herxing from a medication he had 2 days ago. It’s dosed every ten days and when he has it we hold our breath because we know what’s to come. But also, he’s been so good – holding it all in while we were away for the night and he just can’t hold it together anymore.
It was still worth it to go away. To be away from the usual routine, however briefly. I was so thankful to not be in charge of giving out medication at specific times of day. Panda’s list of meds and spacing them out at the appropriate times almost makes my head spin.
So if you are able to organize a meet-up in your area – go for it! Choose a central location and it’s a good idea to arrange a discounted group rate for a block of rooms at a hotel (for people travelling from out of town) and book a private room for dinner so people feel they can talk freely. There’s something so powerful about a group of “strangers,” who feel like family, united by their children’s health issues, having the chance to sit down face to face and talk about it all – how we fight for our children daily – fight for this disease to be recognized – fight for appropriate treatment – fight to raise awareness – fight for Doctors, and health care professionals, and teachers to be educated. Change will come. And it starts with groups of parents who connect, support, research (often late into the night) and share information. It starts with us.