They just don’t get it…

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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?

mad hatter

 

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.

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14 thoughts on “They just don’t get it…

  1. I just want to thank you for sharing your experiences. I am a mother to 3 boys, almost 7, 5 and 2 years old. For probably half of my 5yo’s life we have been dealing with this child who acts like he is possessed. For 2 years now I have been searching for answers and nothing that my son was “diagnosed ” with seemed to fit well enough to actually help or make things different or easier or dare I say make him better. We were officially diagnosed with PANDAS and PANS ! I am excited like it’s a good thing to have your child diagnosed with a disease, but it is something, it is hope, it is a step in the right direction. Maybe it will get easier as they get older but for now we keep moving forward even if we don’t feel like we can some days.

    1. You are absolutely right – it is a good thing to finally know what is going on, to have a name for the madness you’ve lived with for so long. It gives you focus. You will feel like giving up, but somehow you won’t. One day at a time – you can do this!

  2. I LOVE this!! It feels like you wrote this from my head. Although I know there are others out there going through the same hell as us, I can’t help but feel completely on my own. I vent to co-workers & they try to understand, but how can they when even I don’t understand? Is it possible to love & hate your panda at the same time? That just adds more guilt to the load I already carry. Thank you for putting words to my feelings. Thank you.

    1. Thank you Carrie. Yes, it is possible to love and hate your panda at the same time. And it’s normal to feel so guilty and terribly sad about that, but the guilt is so heavy it’s just weighing us down. I know it’s easier said than done, but we need to try to let go of the guilt – it serves no purpose. Be gentle with yourself mama. Always remember that there is a big PANDAS family who totally get it.

  3. Hi. I have had Fibromyalgia for 21yrs. This is an invisible illness but in no way compares to PANDAS. But I can sympathise a little with peoples lack of understanding about what you’re going through. I have been researching LDN Low Dose Naltrexone for Autoimmune diseases & see that PANDAS is listed as one of the illnesses that it treats. I’m very interested to know if anyone has tried it for PANDAS as I have s friend whose Son is suffering terribly & she is exhausted with the effort of trying to get help for him.

    1. Hi! LDN is on my list of things to research. Do you think you will try it for your Fibromyalgia? (And have you thought about investigating Lyme Disease for yourself? So many people are misdiagnosed.) I keep hearing more about LDN in my facebook groups, my mum mentioned it to me recently too because people with Lyme are using it, and now you have written to me about it – maybe this is the universe’s way of telling me I need to look into this 🙂 I will see what I can find out from others who have used it. I’m sorry about your friend. I know she is exhausted – caring for a child with PANDAS/PANS is so emotionally and physically draining that it feels like you have nothing left for anyone or anything else.

  4. Beautifully written!!! Days can be SO difficult and unpredictable. Like you, my son presents as such a kind smart soul (which he is …at times), people do not see his rages. Amazing how they can suppress their emotions and behaviour when they need to isint it?
    We have been using homeopathy for almost 4 months and are seeing some wonderful results. Our homeopath is based out of California, however is available at all hours to deal w any onsets etc.
    As you have said in other articles, I’m still waiting for the other shoe to drop ALL the time but for now it’s giving us some hope.
    Thank you for your articles,

    1. Thank you Gina! I’m glad to hear you are seeing good results from Homeopathy. I haven’t written about this part of our story yet, but we have been seeing a herbalist/homeopath for the past couple of months, after seeing no improvement from different antibiotics. We did see improvement right away but then things like: being around anyone who is sick, the full moon, and swimming in a chlorinated pool this summer started him flaring again. I’m losing my mind, but writing helps keep me sane.

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