I get tired of people telling me that things will get better when…. When Panda is older and Gigi is Panda’s age now…. life will be much easier. (Oh, I hope so.) It’s easy for parents of healthy children to say this. But this isn’t an age thing. He isn’t suddenly going to grow out of it just as suddenly as it happened. We actually have to get to the root of the problem. We have to attack the Lyme and co-infections, the way they’re attacking our son. If we don’t, life isn’t going to be easier. He isn’t going to be better. Perhaps when he’s older he will have developed more effective coping strategies. (And maybe we will have too.) But maybe he’ll actually be more challenging to cope with because he’ll be older, stronger, bigger. And I am a tiny person, it’s getting harder even now to hold him when he’s in a uncontrollable rage and destroying the house. I don’t have a crystal ball. I have no idea what the future holds. But it is exhausting just to have those conversations with friends, family, and neighbours who just don’t understand. Because they don’t see it. They think Panda is a sweet, highly intelligent boy. And he is – no doubt about it. But most people don’t see what we go through when he’s flaring. A few really close friends get glimpses. Snapshots. Sometimes I want to show people the videos we’ve taken and say “See! THIS! This is our life! You can’t make this shit up!”
It’s not really their fault. I don’t know if I’d believe it if I didn’t see it, live it, breathe it. But I guess I wish that people had a little more faith in me. Trust me! I know what I’m talking about. The reality is though, that no one gets it until they live it. How could they possibly? It’s okay to hope that people will listen and be compassionate and empathetic of the road we are walking, but we can’t expect them to truly get this “invisible” disease. Impossible.
Of course there are those completely ignorant, people who tell you all kinds of unsolicited, unhelpful, judgemental crap – ahem, “advice” – but you have no place for them. Try not to waste any of your precious energy on people like that. No, I’m talking about people you adore – lovely, honest, kind-hearted people who just can’t get their heads round what you tell them, and what they actually see. If they only ever see your child holding it together, or the start of what could seem like a tantrum (just like every young child) they’ll think he’s normal. Maybe it’s different with an older PANDAS/PANS child, then you wouldn’t expect them to be raging and having tantrums. (And maybe they even think it’s me who has gone a little crazy – Abso-bloody-lutely! I am a little, maybe even a lot, crazy. But only because of what I’ve lived through for years. And it is me who lives through this the most with Panda. Papa bear is on the battlefield with me but he “gets” to go to work (and it is like an escape – he even tells me this.) It’s me who is here day in and day out. It’s me who is losing my mind. So I can only imagine what it is like for Panda. I escape sometimes, but when does he get to?
Actually, one of my dearest friends said to me “You live a crazy life, but you are completely mentally stable.” It’s a miracle that I am still sane, but thank you for seeing it – I love you for seeing it! I love you for noticing that I am coping, surviving, laughing, living, breathing.
It’s okay to have moments where you are broken, not holding it all together all of the time. Moments when you let the PANDAS warrior mask slip. For years I have worn this mask, which somehow feels like I’ve been lying but, I think it’s more like self-preservation. This sucks – most of the time! We need to share the truth for the sake of these kids. Be the voice. It starts with a whisper. Please save our kids! There are so many of us, sadly, that one day our voices will be so loud someone will hear us.
I think indulging in a little fantasy is helpful, perhaps even the key to survival. Seriously! Sometimes I have daydreams of leaving my life and moving away to a house on a beach, or a deserted island, and starting a new life. But I wouldn’t last long by myself. I get lonely very quickly. I miss my children if I’m gone for a day. When I get alone time, I don’t really know what to do with myself because I’m used to being busy all the time. And, besides, I can’t live on my own, I need someone around to kill spiders for me! When Panda isn’t flaring (rarely,) it takes me a while to notice that I’m actually just enjoying life. I wish that could be our life every day and then I wouldn’t have to move to a deserted island. Sometimes I worry that this will be a never ending struggle. That we won’t find something to help him on a more permanent basis. That every good moment, every good day, is only temporary. That we’ll always have to be on the look out for things that could make him flare. That we are fighting against something much bigger than us and it’s possible we won’t win.
But I’m going to keep living, breathing, hoping. I’m going to seek out people and experiences that make me grateful I’m alive. I’m going to keep laughing because despite PANDAS, there’s still a lot to laugh about in this life. I know that the only people who truly get it are the people who live it. (It’s amazing how you can feel like a family even with people you’ve never met – simply because you are living parallel lives. Simply because they get it!) And, I’m going to use every opportunity to educate people about this disease, even if I’m so very tired.