PANDAS Hell – Through A Father’s Eyes

I’m really sorry. I haven’t felt like writing for some time now. Sometimes I am just so utterly exhausted and overwhelmed from living our story that I just can’t bring myself to write about it. Over the past few months I’ve started post after post – unable to finish them. Unable to find the words. I think I’ve even been a little without hope. I actually told my husband that I was going to buy a Yurt and live in it by myself on the beach, because I feel like I have nothing left to give. I was only partly kidding. My bucket is so empty. It’s so hard to keep going with an empty bucket, while knowing that you can’t give up, can’t give in. This puzzle feels impossible to navigate. My friend said today “that it’s not even like we’re dealing with a straightforward puzzle…it’s like we have a million pieces and we need to find out which 100 pieces are the right ones and fit them together.”

So although I’ve been at a loss for words to describe this hell, this pain, this tormented life, I’m grateful to Josh Ducharme, a step-father to two boys with PANDAS/PANS, for writing the following poem, for speaking the words in my heart. PANDAS hell affects everyone in the family.

Credit: Jenny D Photography

I met Josh and his lovely wife, Jenny, at our screening of the PANDAS documentary: My Kid Is Not Crazy, but have known them from our support group for some time. We are instantly connected and united together in our fight for our kids and awareness.

Josh wrote this poem as a kind of “letter never sent” to their boys. It makes my heart ache and I can’t get through it without tears.

Credit: Jenny D Photography

PANDAS Hell by Josh Ducharme

Rest now child
Let your wet cheeks dry
Mommy is here
Eyelids can fall without struggle
Dream of sugar and chips
Princesses and mermaids
Dirt bikes and hockey players
Not darkness and fear
Conflict and remorse
Stolen cupcakes and lost childhoods

Awaken anew
Let dreams continue
Of trips to the beach
Make the winning basket
You’re a policeman on your bike
The best mommy to your doll
Those dreams should not have to include
Socks that feel right
Skin that is clean
Invisibility at the park
A throat that clears
Fists that don’t clench
And aren’t drawn to suffocating yourself

If this was like life or a shit sandwich
And more bread meant less shit
I’d sell my tortured soul
Pawn this distraught heart
Market a pound of flesh and
Buy back your innocence
Reacquire the lost time
Hire the electrician who could rewire this tangle
Security against this Thief
Plow through the pain my Baby
Ache for only this short time, though
No one knows your pain
Deep inside your soul
Arcs your true self
Set it free
Help me make it better for you Baby
End your suffering, for I am helpless
Languishing in pain for you
Loving you beyond measure

Credit: Jenny D Photography

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Keeping The Love Alive

Let’s face it, it’s hard to feel the love when you’re house is in constant turmoil and chaos, and when you’re in survival mode just trying to cope with your Panda. But since Februray is coming up soon and it is Smoochie month (as Gigi’s preschool newsletter describes it,) we could all do with a reminder that we are special and loved. We’re all so consumed by stress, flares, Doctor appointments, meds, restricted diets, researching, herxing, detoxing, our daily crappy life… that we could do with something so simple – but so good for our souls. Last year I came across this article from Skip to my Lou, about posting hearts with loving messages and positive affirmations on your children’s door for the month of February. I fell in love with this idea because it really helped us focus on all the nice qualities our Panda has, and it made him feel so good too. It’s just a great way to fill up everyone’s “bucket.” (And, to be honest, mine is often running on empty.) Each day the kids were so excited to read the new heart on their door, and actually our hearts have stayed on our bedroom doors since last year. They’re a little faded now and the edges are curling, but Panda doesn’t want me to take them down.

We really got into it and my husband and I started posting hearts to each other on our door. Panda also started to write hearts for us too. Doing this activity as a family really helped us to appreciate the positive things, the kind things, the little details of our lives that are so often overlooked when you’re treading water and fighting for your child’s health. And doing this activity with your spouse really helps remind you why you fell in love in the first place, and why you still show up every day to fight this fight together.

My sweet, thoughtful, generous-hearted husband has noticed how much I’ve been struggling lately. He’s even been trying to find a way for me to get away from it all for a few days. Researching spa getaways for my girlfriends and I, even though we don’t have any extra money to spare and we actually both need a break together. Lately he’s been doing his own version of hearts-on-the-door and leaving me little notes to find throughout my day. It’s an unexpected surprise when I go to make a coffee and there is a romantic note in the cutlery drawer: “I love the way your eyes say “I love you” when you smile at me.” And in the drawer where we keep our coffee I found: “Your beauty amazes me everyday!” Yeah, this man seriously knows how to warm my heart.

So what do you think? This is an easy way to tell your family how much you love them. I understand that it may be difficult to think of positive things to say to your Panda, but even the smallest accomplishment can be noted. Even posting hopeful messages like: Your life is worthwhile! You are stronger than you realize! You brighten our lives! You will feel better soon! We will never stop fighting for you! I love to watch you do/play…. These will surely brighten your Panda’s day and remind them how very special they are.

I would love if you’d share your messages of love, or pictures of your hearts on a door, on a fridge, wherever you choose to post them… use your imagination.

Sending you lots of extra love to carry you through February! xoxoxo

 

All I Want For Christmas…

Credit: LTC Photography
Credit: LTC Photography

So even though I am definitely a summer girl at heart, Christmas is absolutely one of my favourite times of year. It’s the lead up to Christmas I love best (although, and retail industry take note, I do not want the lead up to start in September, I hate walking into a store and seeing Halloween decorations on one side and gorgeous Christmas trees on the other and Thanksgiving thrown somewhere in the middle – let’s focus on one holiday at a time please.)

I know that Christmas isn’t all warm fuzzies for everyone. Many people find it the saddest, most stressful and depressing time of year. I do understand. After the Christmas season I always fall a little flat. So much build up and then it’s over. Then it’s just WINTER, blech. What is there to look forward to? Winter is so unbearably long and spring seems so very far away. Everyone just hunkers down for winter and hibernates because it’s so bloody cold out. It can be a very lonely time of year.

Credit: LTC Photography
Credit: LTC Photography

There’s something so magical about Christmas and seeing children’s excitement, that makes me wish I still believed in Santa. Like, really believe. And I love all the scents of cinnamon, pine tree, Christmas baking, the festive music, and decorating the house. Even that little bastard, Elf on the shelf is back but the kids are so excited about searching for him that I can’t hate him. Gigi is only three and I can’t believe she remembered his name: “Catcher Bean”, don’t ask, I have no idea. We don’t go in for all the “ooh, the elf is watching you and reporting back to Santa all the naughty things you do. Heck, there’s so much “naughtiness” in this house, Santa would probably just bypass it and not even bother leaving us coal. The most magnificent thing of all is of course, The Tree. I love hanging up the special ornaments that have so much meaning. Many moons ago, my husband proposed to me on New Years Eve, by sneaking an ornament on the tree at my parents house, and then asked me to show him which ornaments were mine. I noticed one I’d never seen before and when I spun it around I saw that it said “Will you marry me?” Yes!, Yes, a thousand times yes.

I love the things that are quintessentially Christmas, the traditions that have been done year after year. At first it was a little hard to let go of all the treats laden with gluten, sugar and dairy that we can no longer have. They give me such good memories of Christmas with family. But it’s amazing how easy it is to make new traditions – to find safe, and even more delicious, alternatives for those old favourites… I am so thankful for all those who have travelled this road before us and come up with fabulous recipes.

Credit: Beverly Ruso Photgraphy
Credit: Beverly Ruso Photgraphy

We finished decorating our trees around American Thanksgiving (one big, one little, one with white lights and one with the coloured ones the kids adore… the “fancy” tree and the kids tree.) I’m a little afraid of Panda destroying the Christmas tree in one of his rages. And of course, neither one of the kids can stop touching the ornaments. Hopefully the novelty wears off soon. My favourite thing to do at this time of year is sit quietly at night with all the lights off and just admire the beautiful tree. How magical and serene the room looks with only the glow of twinkling Christmas lights. It’s a good time to reflect on your Christmas wishes. Of course, I wish for health and happiness, and for love to prevail over all the evil and ugliness that is in our world. But the most important one of all is the same every year – I want my happy, exuberant, healthy little boy back. I want a world where PANDAS/PANS and Lyme disease don’t exist. It’s really not too much to ask, right? But I am under no illusions, this is one Christmas wish that won’t come true, no matter how good (or mostly good) I’ve been. And PANDAS doesn’t care if it’s Christmas. It will rear it’s ugly head any time. And last year it was a full moon on Christmas Day (possibly even a Supermoon, I can’t remember for sure) – well, that’s just mean.

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While we try to hold it all together, we will do whatever we can to make this time special and magical – dance to Christmas music, read stories, watch holiday movies, drink hot chocolate (for the kids) and Spanish coffee (for mum and dad – which you have to make – check out the recipe section of my blog,) find things to laugh about, even get out of bed when we realize we’ve forgotten to move the darned Elf, or make up crap when the kids ask us why Catcher Bean didn’t move. We will create memories and traditions that hopefully will be imprinted on our children’s hearts and minds. Stupid PANDAS, I hate you, but it’s Christmas and I try to forget all about you! The other day our son said to me that the best thing about Christmas is being together. It is, my darling. How right you are! I hate PANDAS. But I love you.

Merry Christmas! Wishing you peaceful holidays!

Lots of love xo

Credit: How Wee Learn www.howweelearn.com
Credit: How Wee Learn
www.howweelearn.com

 

Is Magic Real?

Is Santa real? my friend’s 6 year old daughter asked her. Does a man really come to our house and leave presents? My friend wasn’t prepared for this question so soon. Torn between not wanting to lie to her daughter and wanting to preserve her childhood a little longer… she took a deep breath and tried to find the right words to say. Then her daughter asked, Is magic real? My friend was able to answer this with certainty – Yes, sweetheart, magic is real! There are so many amazing things that happen that are most certainly magical. And this time of year is all about believing in magic and things you cannot see. (I still think it’s magical when the house is quiet and children are sleeping.)

Credit: Beverly Ruso Photography
Credit: Beverly Ruso Photography

We so badly need some magic here. Our panda bear has been in a flare since he got some kind of infection at the end of October. He was given antibiotics for only 5 days. He took the first dose in the evening and by morning it was a complete transformation. When he woke up he was the happy, delightful child we miss so much. (When I look at these baby pictures of him and remember how he was before PANDAS, it makes my heart shatter.) Sadly, this transformation didn’t last long and his OCD, rage, emotional outbursts and other PANDAS symptoms got progressively worse. We are all really struggling. We contacted his PANDAS Doctor and she started him on a different antibiotic. So far we haven’t seen any improvement with this one, but she will switch to a different antibiotic if there isn’t any change soon.

Our son has always done so well holding it together at school, almost frustratingly so. I am really grateful that he does so well at school, but it’s hard because for the most part teachers have always said how wonderful he is. They don’t see his symptoms, except for a bit of OCD. So yesterday I asked his teacher how he has been for the past few weeks and it surprised me that she has actually noticed a change in his behaviour: he’s been incredibly slow to do anything, annoying kids he likes, and even swearing one day. Which he doesn’t even really do at home. When I asked him about the swearing he said it was because another kid had scratched a chunk of skin out of his hand and then he started to cry. Yep, we need some Big magic here.

Credit: Beverly Ruso Photography
Credit: Beverly Ruso Photography

Today, after my friend had told me her story about believing in magic, we were standing in our favourite bookstore trying to buy Christmas gifts discreetly while our youngest daughters played with the toys and trinkets. I love seeing my 3 year old mother my friend’s one year old – they obviously truly care about, and adore, each other. We watched my friend’s daughter totter over to another little girl and give her the toy she was playing with. The other girl reached out and hugged her. And then it was like they were speaking their own language using their hands and it reminded me of when we taught our babies sign language. Witnessing this beautiful human connection between two tiny little strangers was amazing. I nudged my friend and whispered “This is magic!” Magic can be BIG or it can be small but it’s pretty miraculous to watch if you are open to it and magic often happens when you’re not even looking for it.

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I realize that we so badly need Big magic, but I don’t want to miss out on the small magical things that are happening each day. Like the time our friend’s 9 year old daughter reached for my hand and held it when our two families were out for a walk. At first I thought maybe it was because she thought I was her mom since we have been mistaken for each other sometimes, but then she turned and spoke to her mother. When children show affection that isn’t prompted by adults it is truly magical. It makes my heart swell that this same little girl thinks I’m so calm under pressure and I can fix any problem. How sweet. I only wish it transferred to my own problems. But it’s so much easier to be calm when you’re helping other people with their problems, when you’re on the outside. She has such a beautiful and sensitive soul. I’m pretty sure she and I are kindred spirits.

When we are on the sinking ship called “A PANDAS/PANS Flare” just trying not to drown, and we’re so very tired from treading water, it’s very easy to miss the small ways magic makes itself known in our lives because we’re so busy just surviving and hoping and waiting for Big magic.

For the past few days I have been feeling so terribly sad, alone, and hopeless, wondering how long can this nightmare go on? But today, when I needed it most, I was reminded that I do believe in magic. Do you?

Lots of love xo

 

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

The value of meeting other PANDAS/PANS Parents

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.

Today you are six – my letter to you, Panda Bear

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Today you turn six years old, little one. And like every other parent I wonder how that’s possible. I feel like I only took a breath since you’ve been born, so how can six whole years have gone by?

You made me a mother. You! Without you, I would not know what this impossibly huge love feels like. It’s a love that fills up every empty space, it could move mountains. It’s a totally unconditional, practically indescribable love. How can you put into words this big love? It is a gift, a blessing beyond anything else. You gave me that. I am happy you are in my life, and I also feel sad because it seems that our time together is always fleeting. Already I miss your chubby hand in mine. I miss the way you smelled as a baby. Not that new baby smell, but the one that was just yours (and your sister had it too.) No one else could smell it like I could, not even Daddy. It’s like how mama animals know their babies by their smell. I always wished I could put it in a bottle and keep it forever. Your blanket that you used to tangle yourself up in smelled like you too and when you were sleeping at night I would inhale deeply as I kissed your sweet head, and my heart would melt. I hope one day you will know this kind of love.

I’m sad because so much of your short life has been filled with pain and challenges. I hope it doesn’t make you feel broken as an adult. Instead I hope you see it as a testament to your strength. I wish you’d had more of a childhood. You were so little. So full of joy and happiness. And, I weep because we never get to have it back. Unfortunately, that’s the way life is. We can’t hit pause and then rewind. We can only ever move forward. I hope you will always know how much I love you. My deepest wish is that someday you will be well again. You will be free of this disease that has taken over our lives.

Today you are six and I realize that we still have so much to teach you about life… like how to love and be loved, how to make good choices, and so much more but it feels like there’s not enough time, especially if so much of our time is spent managing this disease.

There will come a time when you’ll learn things all on your own – as the main character, the leading man, in your own life and I will step back – as best supporting actress. That’s the way it’s supposed to be. But for now I’m the leading lady in your life and I will hold onto that as long as I can.

Before I was a mother, I had a vision of the kind of mum I’d be. I imagined living in a big house on the beach. It was always summer and apparently there were no bugs because the doors stayed open and children were free to run in and out of the house playing happily. I pictured standing barefoot in the kitchen in a long summer dress making food and drinks for friends. Everything was so relaxed and lovely. Sand was tracked through the house but I was so happy I didn’t care. Okay, hold on a second. As my mum said, when I told her this vision of heaven – “That’s not real life. That’s a movie! And you would hate sand tracked through the house.” It’s true, I would. In real life we live an hour away from the beach, and we live in Canada so we get to enjoy four seasons. I’m far from the serene mum I imagined. About the only thing that’s true is the barefoot thing. What I’ve learned is that being a mum is so much more and requires so much more than I could have imagined.

Today you are six and I believe you will get better – maybe not today, or even tomorrow. I know we are in this for the long haul – but you will get better.

You are a smart, sensitive, gentle soul. And you care – never stop caring. Don’t let the world change you or crush your spirit. Because, darling, it will try. People will try to change you, but you are strong. Be authentic and true to yourself always. Life is incredibly precious and fragile. I often wonder where life will take you. But wherever it takes you, remember that I will be here whenever you need me.

Every birthday I silently cry over what feels like another lost year. When you blow out the candles I wish for a year of health and happiness, of peace and serenity, instead of turmoil and chaos. But I will appreciate the moments of goodness. I recognize the limitations on our lives at this time and will focus on what we can do instead of dreaming of things that aren’t possible right now. But don’t think for even a second that I’ll stop dreaming of good things for you, because someday you will be well and those dreams will come true. I hope you will remember the good moments. Every night, when we ask you at the end of the day what your favourite part of the day was you always have lots of good things to say, even small things like: having tacos for dinner (your favourite,) going on a bike ride…. Then we ask what was the worst part of the day and it’s never what we would have guessed. It’s things like: you didn’t get to play at the park longer or you wanted two chocolate popsicles, not one. I hope the good times are what stick in your memory.

Every night I tell you, and will keep telling you: “I love you darling, to the moon and back. I love you forever, I’ll like you for always. As long as I’m living, my baby you’ll be.”

Love always,

Mum xoxo

P.S. My loves, if you ever read all of this someday, please don’t feel bad. I write our story because there are many more children, just like you, and families, going through the same thing. They need to know they are not alone. We need to raise more awareness so hopefully more Doctors and Health care professionals will educate themselves about PANDAS and Lyme Disease so that people don’t have to suffer as long as you did. Hopefully children will get help and treatment sooner. Your lives are important. You have purpose. And that’s why I share our story. xoxo

So what exactly is a PANDAS flare?

Flare means “to burn with sudden intensity.” Well, that’s one way to describe it. So what exactly does a PANDAS/PANS flare look like? All kids are a little bit different but this is a brief glimpse of what a day in a flare can look like for our little guy.

First of all, our son is pretty much always in a flare. If we have a good day, once in a blue moon, we are just grateful. But we’re always on guard. Because good days don’t last. Something will inevitably make him flare and almost anything can set him off: being near someone who is sick or getting sick, swimming in a chlorinated pool, chemicals, certain foods and smells, seasonal allergies, a herxheimer reaction to medication, the full moon, new moon, supermoon, no moon, man in the moon (just kidding about the last one, but anyone with Lyme Disease, and PANDAS/PANS will tell you the cycles of the moon definitely have an effect on them.) When we wake up in the morning we never know what kind of day it is going to be. More often than not, it’s a crap day. Even if our panda wakes up in pretty good spirits that can change in a moment and you feel like you’ve been hit with a sledge hammer. His eyes are wild – pupils dilated. He’s screaming because his Dad walked out of his bedroom before him or opened the blind the wrong way. Now the OCD starts and he’s yelling that we’ve ruined everything, and he has to start all over again. Or he wants us to repeat what we just said and dammit, I can’t even remember what I just said. This is too much. I haven’t even had my blast of caffeine yet or even made it to the bathroom to pee. Trying to calm him down takes ages. There are some things he needs that will help him feel better but trying to do any of them can set him off again. He needs to pee. He needs an Ibuprofen (to reduce the inflammation in his brain,) he needs to eat and drink. But just getting him downstairs is a struggle. We’ve even tried giving him food right away before he even leaves his room. But the thing you need to understand about a PANDAS flare is that it doesn’t really matter what you do – nothing really makes much difference. We’re tiptoeing on egg shells trying not to do the wrong thing. Throw into the mix a 2 year old sister and a husband desperately trying to help, but also get ready for work, and it’s a recipe for disaster.

Whew, we made it downstairs. It took some coaxing, a lot of coaxing. Trying to get the Ibuprofen into him before he freaks out again. Hubby puts out Panda’s breakfast: homemade granola and coconut yogurt and makes sure it covers the bottom of the bowl just right, drizzles honey on top, and starts getting all of our son’s supplements and medications ready. Some he needs on an empty stomach and some after he’s eaten. But now Panda is sobbing because he can’t find the right spoon. He needs 4 spoons. One of the spoons snapped in half and we have to fix it NOW! The yogurt isn’t in the right place. He needs it on the bottom but it’s on the top. Yogurt tastes yucky today. Oh no! He just got yogurt on his finger and now he has to go wash his hands again. Everything is ruined. He has to start over. And by over, he has to go back upstairs and start everything over again. But he’s stuck and he needs us to help him. The clock is ticking and we’re all feeling the pressure and frustration. He is completely emotional and falls apart if we leave the room. Once we have him calmed down again we help him to the table to start eating and he’s furious because we gave him a banana just like he asked for only he’s changed his mind or forgotten that he wanted it and now he’s so angry. He’s running around screaming, banging the chair on the floor and against the table, throwing all the papers that inevitably collect on our counter all over the floor, trying to sweep his bowl off the table but phew, we caught it – this time – before it was a broken mess on the floor. He’s in distress, I can tell. My poor little boy. He’s holding his hands over his ears and yelling now.

I swoop up my baby boy (only he’s not really a baby anymore) and he’s fighting against me, kicking and flailing around. And usually this doesn’t help. Nothing helps. But we have to do something, this could go on for hours. He hates being constrained but we can’t let him destroy anything else. I start to rock him gently. And, very softly, I start singing “You are my sunshine” (his favourite song at the moment.) He’s telling me to stop singing and usually I would, but this time I don’t. I keep singing very quietly. It’s hard for me now because tears are streaming down my face. I feel his body start to relax and the fight goes out of him. At the same time I feel my own anger and frustration melt away too and all I feel is love (and sadness.) He’s not doing this on purpose. This is not his fault. His brain is under attack. When he’s flaring, sometimes he doesn’t even remember how he was. It’s getting late now. I help him eat breakfast while he counts on his fingers. Daddy gives him his meds. We help get him dressed and teeth brushed. There are more struggles throughout. We’re going to be late for the bus again. His shoes are bothering him. He takes them off, I try to help. I’ve made it worse. He puts them on again, then off again. Trying to get them just right. My nerves are shot to hell. We get outside and run to the bus. We made it in time (sometimes we don’t.) We have time for hugs and a million butterfly kisses: left cheek, right cheek, left cheek. Eskimo kisses on my nose. “I love you mummy” he says. “Have a good day!” “You too my love,” I say. He’s okay now. The ibuprofen has kicked in. His tummy is full. He will have a good day at school and he will hold it together all day while he’s there. But he’ll let it out later when he gets home. Home is his safe place where he doesn’t have to hold everything in. I know what to expect.

I breathe out. I smile and chat with our friends and neighbours. Nobody knows what our morning was like. I hold my daughter’s hand and we walk home. It’s 9am and I’m exhausted, emotionally wiped out. Is it time for bed yet? I finally make my cup of tea. Eat some breakfast. Have a shower. We have a few hours of reprive (on days when there is no school, there is no reprive.)

Later, when it’s time to pick him up from the bus, I will brace myself for what’s to come. He’ll get off the bus and run home happily with his friend. His pants will likely be wet. When he’s flaring he holds his pee in for so long he ends up having an accident. And he doesn’t like to pee at school. Sometimes he’s already starting to fall apart when he gets off the bus, but usually he’ll keep it together until we walk in the house and he explodes. All families are familiar with the dreaded “witching hour” – that lovely time of day around dinner time when children fall apart and chaos ensues. For PANDAS/PANS families it’s elevated to a whole other level. Especially with those children who hold it together while they are at school. How difficult it must be for them and no wonder they erupt like volcanoes the minute they get home. It feels like we won’t make it through the evening. The stress level in the house is off the charts. We try to keep things as calm and relaxed as possible and to carve out moments of time in the day that are positive. But it’s tough! Really tough. After 4 years of this life, day in and day out it’s hard to remain positive or patient all the time.

The evening is pretty much the same as this morning. I get dinner ready, break up fights, clean up accidents. Try to get Panda to the table but it’s hard to get him to eat dinner. He won’t sit still. We have to sneak bites of food into his mouth otherwise he won’t eat. He has been pretty good taking yucky medicine until recently and now he refuses it. It’s a battle to get him to take it. And there’s so much to remember: take this on an empty stomach, that with food, this 2 hours after food, repeat and then pull out your hair because you forgot to give him something that has to be taken 2 hours before a meal. We have lists and pill pots to organize everything and I still feel like a chicken with my head cut off. I always breathe a sigh of relief once dinner is done and all his medication is taken. It’s a lengthy ordeal.

So after the bedtime battle and a melatonin (thank God for Melatonin, without it he used to be up late pacing the floors, coming in an out of his bedroom, unable to settle,) we read books together and he gets very sleepy and mellow. We have found that a side effect of melatonin is he can wake up with bad dreams and early morning wakings. Now he only has a tiny bit of melatonin, enough to help him get to sleep but without the bad dreams, and we have days off from taking it. It’s so lovely when all is quiet and the kids are sleeping peacefully. And I wish I was sleeping peacefully too, but there’s more work to be done.

I finish the dishes that I had to abandon to help Panda through a crisis, and laundry that was started hours ago, and inevitably some sort of cooking – like I suddenly need a safe treat to send with him to school and we just ran out of my stash in the freezer – and now more dishes, but I don’t care anymore, I’ll do them tomorrow. I collapse on the couch and watch Corrie St. or catch up with our support groups, do some more research on this terrible disease. It’s very late now. I check on the kids and kiss them goodnight. I lie awake in bed. As usual, I can’t sleep. I’m so tired and the night is so short. Tomorrow we’ll wake up and face it all again.

It feels like our life is a never-ending roller coaster ride: sometimes we’re up; mostly we’re down; it’s scary – maybe even exhilarating sometimes, you don’t always know what’s coming and there’s nothing you can do about it; you can’t get off so you just hang on for the ride. I think I’d prefer a lazy ride in a gondola down the Grand Canal but since I don’t actually have a choice, roller-coaster it is.

Much love to all the parents looking after sick children. You can do it! You will survive another day.

xo

Please follow and share our journey on our Facebook Page     The PANDAS Puzzle.

There is a heaven… and a hell

I’m writing this with my second glass of wine in hand so we’ll see how this goes. And…I have at least 3 other blog posts on the go – so stay tuned, but I felt this was what I was supposed to write about today.

We have very few actual good (ok, I mean, great) days with our Panda. The last time we had a “great” day was February 26th and that was the first day in months. Yes you heard me months! ONE. GREAT. DAY in MONTHS! Pretty much unbelievable for most people. But I’m sure it’s something that other PANDAS parents are all too familiar with. It is April 6th as I’m writing this and the last “great” day we had was February 26th!!! When this happens, and you can see it is a rare occurence for us, we just soak in the deliciousness of the day as much as possible. It’s like someone has taken our son with PANDAS and left us with the lovely, pleasant, easy-going child we remember who does not have OCD, anxiety, tics, or rage. We actually feel like we’ve been transported to heaven. It’s like we have been given our beautiful happy son back, for now. Today, he was even writing his Christmas list to Santa.

When this happens, we feel lighter, freer. We can breathe again. Life is enjoyable and happy. This must be what it’s like to be a “normal” family. But, and there is always a BUT… we know that tomorrow could be hell on earth. And it was, last time, on February 27th. On February 26th, he was exposed to a friend who was getting sick and the next day was pure hell. PANDAS kids are like radars for illness. And the angel who was gifted to us on February 26th was taken and replaced by what seemed like the devil on February 27th. That sounds harsh and a terrible thing to call your own child, but deeply, sadly, it’s what it felt like.

When we have this day-in-heaven, I can completely understand why other families have loads more children. Completely understand. If it wasn’t for the fact that I have progressively worse pregnancies where I vomit so much I can’t even keep water down, and even worse deliveries, I would want more, many more, of these lovely creatures who make my heart swell with impossible love. It’s a miracle we have two children. We often joke that our son tricked us into having a second child. He was having a few good days back then and we had always wanted two children, and the experience of raising a boy and a girl – so predictable – yes. And, fortunately, 9 months later, we were blessed with our baby girl and got exactly the family we wanted. Kind of.

So today, on what was actually a pretty dreary weather day, I soaked up my happy-go-lucky sweet boy. I fully enjoyed his company, how his intelligence, insight, and sensitivity continue to amaze me. I put him to bed and whispered gratitude and prayers knowing full well that tomorrow he might be taken from us again. That tomorrow could be hell, but hoping with all of my heart that it isn’t.

xo

 

 

 

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