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

2 thoughts on “We are riding the PANDAS rollercoaster

  1. I just found your blog! We were fighting Pandas for years through diet until it all went out of control in June. He was just diagnosed with Pandas. Now my son has been on antibiotics and motrin
    for a couple months and I think I stopped being so diligent (neurotic) about diet. The tics are out of control! Do you still do Failsafe? Or Feingold? Your story could be my story. My child is 9 and in 4th grade.

    1. Hi Zoe, I’m glad you found my blog, however I’m so sorry that you are going through all of this too. We don’t do Failsafe anymore. We stopped when we couldn’t get back to baseline after many months of trying. Doing the diet was killing me. We have mostly been doing a Paleo diet for a few years now. I tried to do Autoimmune Paleo for a while but couldn’t keep up with such a demanding diet. And there wasn’t enough improvement to continue with it. We absolutely stick to a diet free of: gluten, dairy, colours, preservatives,and mostly free of refined sugar. I used to have a mini-break down usually once a week over preparing food. I would literally cry my eyes out on the kitchen floor. I was overwhelmed and exhausted. Sometimes I wish we could just order a pizza 🙂 I’m getting better at planning ahead, batch cooking, and freezing lots of things. I hope you find the answers for your son. Thank you for reaching out and please stop back to keep reading our story.

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