We are riding the PANDAS rollercoaster

Raw Footage Photography
Raw Footage Photography

So the first week of Grade 1 went pretty well and this PANDAS mama was crying tears of joy. He loves it! LOVES it! He loves that they have 3 recesses and get to play on the climbers, loves that he has his best friend in his class, loves that he gets to use the big boy washrooms. Last year he refused to use the washroom at school. He held it in all day and often had an accident on the way home or just as we got home. How uncomfortable – to hold your pee in for 7 hours. He would hardly drink any water so he was also dehydrated. I know it seems silly to be so happy that he is using the washroom – it’s such a normal thing – and thank God for “normal” things. He is so excited to use the urinal and has actually asked me if we can have one in our house. Um, NO! But I’m glad you are excited to use one, babe!

The first day of school, I spent most of the day sobbing. I don’t really know why. I couldn’t explain it if I was asked. Maybe it’s a mom thing… I don’t know if Dad’s are sobbing because their baby went to school. It takes me time to adjust to our new routine. To letting go. Despite PANS and Lyme, he is still growing up, still taking steps away from me. Which is just as it should be, but makes it no easier for mamas everywhere. I thought for sure my hubby must have thought I was crazy when he came home from work and I climbed into his lap on the bathroom floor and sobbed my heart out. But, I am blessed because he just let me cry and cry without expectation that I would tell him what was wrong (which is a little unusual for me because I am a non-stop talker. Ask anyone. I talk so much that if I’m not talking, it’s a sign that I’m really thinking about something.) I know I’m also melancholy that summer is coming to an end. Why does it go so fast and yet winter drags on forever and ever and ever?

Anyway, I digress, back to school: Panda’s teacher is an angel. I know he is exactly where he is meant to be. I feel so comfortable sending him to school knowing he has a warm, caring teacher who asked me to send her resources so she can try to understand what is going on with him. I think a good teacher makes all the difference. Sometimes I think about homeschooling but I know in my heart that I don’t have it in me. It would be easier in some ways, at least then we wouldn’t have to worry about the sickness factor so much. But I can’t keep Panda in a bubble and I don’t want to live in a bubble either. I so admire those who are homeschooling. But I recognize my limits. (And I’m at mine.)

We have had some meltdowns at home after school, but completely expected and sort of prepared for… as much as I can prepare for. But so far, and my fingers are crossed so tightly as I write this that the circulation is being cut off, they have been minor compared to what they have been.

Fast forward a few days and…

Of course the inevitable has happened. His teacher emailed to tell me she is sick with Bronchitis and on antibiotics. I’m so grateful for the open communication. At least then we can prepare. Then when we were walking to the bus one morning and discovered that his friend isn’t going to school because he is sick too. Oh god, whenever I hear anyone is sick that we’ve been within a ten mile radius of my heart sinks, actually it plummets. So now it’s time to up the Vitamin D, give him Elderberry Syrup, diffuse Essential Oils and rub them on his feet (On Guard, Oregano, Melaleuca, Frankincense) put my head in the oven…. this is the reality of the PANDAS roller coaster.

We are struggling. I am struggling. Whenever we try something new with Panda and it helps him, I have learned not to let myself feel too joyful, too happy because so far anything that has worked, doesn’t work for long. He had a pretty good month in July and we thought we turned a corner…turns out it was just a slight bend in the road. We are back to full blown flaring. His voice is grating on my nerves. Our house is under destruction. (How can someone so small cause so much destruction? It’s like we live with a tornado.) One day when I picked him up from the school bus, he seemed fine all the way home. Then the second we got in the house and I closed the front door. All hell broke loose and he started screaming about something. Even as I sit outside writing this (trying to have a few minutes break) I can hear him screaming at his father and bashing the dining chairs into the table. So I run around closing all the windows so the neighbours don’t wonder what the fuck is going on. I’m sorry but I just want to swear. I never used to swear much, besides saying “bloody hell,” which frankly, doesn’t count. (And if I could still say it in a posh British accent it would be even more acceptable.) Then I had the wind knocked out of me by PANDAS/PANS and in the middle of dealing with that we decided to embark on a major renovation of our house. If you’re thinking about a renovation – don’t! I beg you. It was an absolute nightmare. Everything that could go wrong did. Everything. We had to hire lawyers in the end and they didn’t even really help accomplish anything, except cost us boat loads more money. Our stress level was at an all time high. That was when I started swearing.

Now I find myself swearing quite a lot. In my head, under my breath. In the car, by myself. I wish I had a soundproof bubble I could go in and just scream – FUCK!!!!!! I wish I could go in the back yard and scream, but I don’t want to scare our neighbours. Yep, sorry, this lady has lost her mind.

Lately I’ve been thinking: Is this all there is? Is this what my life looks like now? There must be more. I want more from life. Maybe I’m having a midlife crisis…a little early. I know, I’m the mom – I’m dependable, practical, well-behaved (for the most part.) I’m the mom – I’m not meant to feel like giving up. But I do. There are times when I want to give up so badly it hurts. There are times when I don’t want to live here anymore. My insides ache from being torn in two. I’m the mom and I’m really starting to feel like I’m “just” a mom, “just” a wife! I feel like I need someone to take care of me for a change. What if I don’t want to do this anymore? Oh come on girl, be realistic – It’s not an option. It just isn’t. I guess I should go back and read my own advice in my post: How Do We Survive? Because I’ve got to keep surviving – there’s no one else lining up to do my job. I am actually indispensable.

Someone asked me if it’s possible to love and hate your Panda at the same time. Yes. Sadly. Guiltily. I remember my mum telling me there is a fine line between love and hate and sometimes you will hate your children, even though you love them more than you thought possible. What mother wants to admit she hates her child sometimes? You? Don’t feel so bad. I think most parents have been there. I’m not even going to pretend I know what I’m doing. Sometimes I suck at this whole parenting thing. But then I remember that PANDAS sucks! Sometimes I can’t believe that I’m responsible for parenting these two little ones. There must be some mistake. Who decided we could do this? Who decided we’re strong enough to handle this? They must be completely bonkers. Why are we being tested like this? And, why do I feel like I’m failing miserably? But then I see how much our children love us, even though we feel like we’re screwing up – big time. I see it in their eyes. Feel it in their hugs and all those butterfly kisses. Time is slipping away and I don’t know how to slow it down so I can savour those delicious hugs, kisses, and snuggles in the midst of total madness. Please God, just give me a few minutes to pick up the pieces of my broken heart, mind and soul.

I hope this is because it’s a full moon and a lunar eclipse. I hope so, because then it will be over soon. I feel like our life revolves around the damn moon and it’s cycles.

I’m sorry, I wish I had answers. I wish I knew how to fix this. I wish I knew the secret… then I could whisper it in your ear….

with love,

xoxo

They just don’t get it…

LTC Photography

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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