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

 

Spanish Coffee – Oh my!

This is hands down one of the most delicious hot boozy drinks I’ve ever had. (And this is obviously not for the kids.)

So, if you’re making it properly it’s 1 ounce each of Triple Sec, Kahlua and Brandy in a beautiful mug, but you can do half an ounce of each depending on the size of your mug (warm in the microwave for about 15 seconds.) Pour in coffee (and I always use decaf if it’s in the evening, I have enough trouble sleeping at night without any added caffeine.) STIR – this is very important otherwise you end up with all the booze at the bottom. Add whipped cream and drizzle with Kahlua.

If you want it to be extra fancy you can dip the rim of your mug in lemon juice or a little Brandy and then dip in sugar first, before adding any booze or coffee – oh so pretty, but not necessary.

Enjoy and share with friends and family!

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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

 

Love, Marriage, A Baby Carriage…and PANDAS

There are things no one will tell you, or at least admit to, about this crazy PANDAS life. Often when I write a blog post I feel like I’m baring my soul, sharing my journal – our personal pain, with the world. I’m always a little bit nervous to hit the “publish” button, and this time is no different.

When we stood across from each other on our wedding day, clasping each others hands, saying our vows to each other, we had no idea what was to come. Our whole lives before us, full of promise, anticipation, eager excitement. Of course when we said our vows we meant them, but in no way were we prepared for the life we lead now. And when we took that great leap of faith into parenthood – that explosion of love – the nothing else like it kind of love – we did not expect to end up here.

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How does a marriage survive PANDAS/PANS?

THIS life is the stuff that makes people feel like they are going crazy. Family is work. Marriage is work. But, actually, our marriage has never felt like particularly hard work despite a long distance relationship, in-law troubles, immigration, visas, and anything else that fell in our path…. all just speed bumps. Our relationship has been tested time and time again and we remain strong. Sometimes I think there’s nothing that could break us. Nothing. Oh I hope so. But I can see how living with a child with PANDAS/PANS can tear apart marriages and relationships. Families ripped to shreds. Broken hearts. Shattered dreams. Financially crippled. Rivers, even oceans, of tears.

What people don’t talk openly about is how terribly lonely you can feel. In general, I think Stay-At-Home-Moms feel lonely, even bored, despite having loads to do, and we crave adult company. But PANDAS moms are lonely two-fold. We’re lonely just like the other mamas, but we’re also lonely because people don’t believe us or because people try to minimize the pain we live daily and we’ve lost friends and family. We are struggling beyond belief. I’m feeling a bit like a desperate housewife (a desperate PANDAS-Mama.) I know I am fortunate that I have a supportive husband. I know that some other mamas’ husbands are their biggest doubters and how incredibly heartbreaking that must be not to feel supported by your own husband….not to feel like you are in this together….not to feel like you’ve got each others backs.

I am weary. I’m exhausted. I’ve been so busy for so long that I don’t even know how to take time for myself. I feel like I don’t even know how to relax anymore. I’m constantly wired. I’m always in fighter mode. I’m “ON” all of the time. And my husband and I are on this battlefield together every single day. Of course we yell and argue. Of course tensions are high. We aren’t saints, and this kind of life has a way of wearing you down so sometimes you don’t even recognize yourselves. My husband has always been the patient one. I’m the hot-headed one. But he used to have an eternal patience that amazed me. He never yelled, but now his fuse is as short, if not shorter, than mine. That’s to be expected – after all, we live with a Panda Bear.

I must confess – the idea of a man who doesn’t live this life with me, whisking me away for an adventure, and no chaos, no crazy, no complications or obligations – just pure joy and happiness – the ultimate escape – is, of course, appealing. But it’s a fantasy. I don’t think that it even exists outside of my mind. Besides it would only be a temporary escape. Realistically speaking, it’s not as if there is a line of wonderful men outside the door lining up, willing to do this, but I haven’t put the ad in the paper yet. Ha! Joke. And eventually I would have to come home. Come right back to my hair-pulling out crazy life! Sometimes I don’t know how to breathe here. Sometimes I feel like I’m suffocating. But this beautiful mad place I call home is my world, and I built it with my husband. I don’t want to be the one who breaks it down.

I always tell my husband that there is nothing wrong with us, or our relationship, and that is the truth. That I will never leave him. But that I do want to escape our life. And I think he understands. I know I am pretty vulnerable right now. Even in my strength, I am weak. Sometimes I worry that I will make mistakes that could ultimately break us, because of the circumstances we live in. Do you wonder this too? And who could blame us for wanting a “get out of jail free” card! My husband knows me too well. He can read me like the back of his hand even if I’m not saying anything. He knows how much I struggle daily to hold everything together… to keep going even though I want to escape. He holds me up when I am down, until I’m strong enough again.

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The secret is that sometimes I just want to be free from responsibility,  Sometimes I want to be NOT a PANDAS Mama, sometimes I don’t even want to be a wife (even though I love my husband deeply…) Sssh! Sometimes I even envy other people’s seemingly “normal” families, but then I remind myself… the grass is not always greener – and there is so much we don’t see as outsiders. Everyone has their own struggles. Do not judge.

I have learned that nothing is black and white. (Except an actual Panda Bear.) That human relationships are complicated. That our hearts are big and have the capacity for many kinds of love. That we really should never say never. Because we have no idea what life will throw at us or how we will cope.

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My darling husband, please know you have nothing to worry about. You are my greatest supporter, my sanity, my best friend, love of my life, my fireworks, my one true love – you still have the power to send me to the moon and back. You are enough. This isn’t the life we would have chosen but we chose each other. And I will continue to choose you everyday. Thank you for adoring me so very much that when you look at me, magic happens. Somehow I know you will always be there. Loving me, unconditionally. I miss you all the time. I count the minutes until you come home. You are an amazing father and an even better husband. I love you for your strength that holds us all together. And a life without you is unimaginable.

So how does a marriage stay strong through this storm? For us, it’s through honest communication, patience and forgiveness. Sometimes you’ll tag team it, other times you’ll need the strength in your togetherness. Laughter and music have been our saving grace. Remember to kiss each other – really kiss each other – even in front of your kids (it’s so good for them to see a healthy, loving relationship.) And sometimes you just need time alone together to pretend, to forget, and to remember why you fell in love in the first place.

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

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?

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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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Birthday Cupcakes

Gigi recently turned 3 years old. I’m always on the lookout for new, healthy recipes for the cubs. This one from Hemsley & Hemsley totally delivers and they’re delicious too! No gluten or refined sugar. And I used coconut oil in place of butter to make them dairy free. I also used a pinch of salt in place of Tamari. Trust me – no one even knows they are eating beets. They’re just moist, chocolatey and approved by my fussy children (and that’s saying a lot.) I made a double batch and froze the extras. Then I can just pull them out for a treat, or if we are going to a party and need to take something safe for the kids to eat.

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Here is the recipe for ChocBeet Fudge Cakes. Be sure to check out the rest of the Hemsley & Hemsley website – their recipes are gorgeous, healthy and yummy! Above is a picture of how ours turned out. They are perfect on their own but we made them even more special by adding whipped cream/coconut cream and raspberries… (apparently we love the combination of chocolate, raspberries and cream at our house.) Any berries would be great.

Plates were licked clean, Gigi even ate the crumbs that had dropped on her dress, and Panda asked for more! Success! Happy Birthday sweet baby girl. xo

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How do we survive?

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I did not ask for this journey. Of course, none of us did. Do I want to be on it? Not really. Especially not during a flare, which is most of the time. If this was a train ride I think I’d ask to get off at the next stop and demand a refund. Please don’t misunderstand me – I don’t want a refund for my child. But I often really really want our pre-PANDAS, pre-Lyme life back. A life that isn’t filled with a daily struggle just to accomplish the things most families take for granted. I know that even parenting a healthy child isn’t easy. I have one of those (at least, she seems fairly healthy) and it’s not a cakewalk, but it is definitely different than parenting a Panda or a child with special needs. Daily life with a child with PANDAS has made me want to drive my car off a cliff some days, but I don’t. I don’t know why. Perhaps it’s the need to survive that kicks in. Does this make me a bad parent? Maybe. But I don’t think so. I am only human. And I have heard time and time again that if most people even had to endure one day of our lives they wouldn’t be able to do it. But to go through the unrelenting OCD rituals, the rage, the sensory, eating, and sleeping issues, the accidents, the tics, the gut wrenching agony of watching your child in such distress day in and day out takes real resilience. And you find out just how resilient you are – and how resilient your child is, how brave he is. You find strength you never thought you had. You learn to be thankful for small miracles (and large bottles of wine.) And the truth is that if this happens to you, you will get though this. PANDAS parents are ordinary parents who would do anything for their kids, who will never give up. They face adversity head-on everyday. And I know there are PANDAS families far worse off than ours: ones dealing with multiple children with PANDAS/PANS, there are single-PANDAS parents, and the strength of these people amaze and inspire me.

I did not ask for this journey, but I have learned some things about how to survive it. When you inevitably feel like giving up. Don’t! Your child is depending on you. You! I’m sure that, like me, you are burnt out. And, I burn out very quickly these days. How do we do it? How do we keep going? However you find strength – be it from your faith, from walking alone on a beach (if you’re lucky enough to have one close by – I wish) or even just around your neighbourhood, losing yourself in a book, or losing yourself in a glass of wine while talking with a friend who is good for your soul (I’m convinced this one has magical healing powers,) lose yourself in a funny movie and let yourself laugh – really laugh – so that tears come out of your eyes and you can’t breathe. If you find serenity in your bathtub – do it! Ride your bicycle, swing high on a swing and feel the wind in your hair, spend time with animals, write in a journal, create something, have someone watch your children so you and your spouse or a friend can do something different like see a play, go dancing or to a concert…. Whatever it is that makes you feel alive and inspired, and dare I say “normal” – do it. Even if it’s only for 30 minutes! These are the things that feed our soul, that give us the strength to keep going. I know… I get it… it seems practically impossible to carve out time for yourself but, it’s necessary. Yes, you need to take care of your child, but we also need to find ways to take care of ourselves so we can be there for our Pandas, our other children, our spouses… When people offer to help – take them up on it. It takes a village to raise a child and boy, do we need that village when raising a panda. Yes, there are people who don’t get it, they think you’re crazy – but you don’t need them. There are people who are more than happy to help. Let them. Your panda needs you. He needs you. She needs you. And you have to survive. (Maybe we need to lose ourselves in something we love doing more often so that we can find ourselves again and keep going each day.)

This summer, I asked two 12 year old girls who live on our street to be mother’s helpers. And they have truly been very helpful. I have them come for a couple of hours on some days when my husband is working (he works long hours) and they play with my kids while I am home doing other things like trying to have a little rest, reading a book, making dinner, writing this. My kids adore those girls. They look forward to them coming over… me too! I wish I’d done this sooner… all those summers I needed help. And, my panda is generally good for others so it really helps break up our day so we can survive.

You are not a failure for needing help, for taking a break sometimes. You are courageous.

Connect with other PANDAS parents. There are people who’ve walked this road before us and some even still walking this road. They are happy to share what they’ve learned or just be here to support you. Even just venting with someone who truly gets it can be enough to sustain you through to tomorrow.

Having a complex child like our son has shown me emotions on a completely different level, that it’s possible to feel all of these things even in the space of 1 hour: strength, weakness, rage, love, unbelievable joy, exhaustion, fear, despair. Even though sometimes I feel like dying, in a strange way I’ve never felt more alive. I don’t know how to explain it. I’m definitely not bored. I’m far too busy to be bored. We struggle daily. We are tested daily. Some days we feel like were drowning or fighting to stay above water. This is not an exaggeration. Some days we are just putting out fires all day long. Every so often there is a day that gives us hope, that shows us there is a light at the end of the tunnel, that keeps us fighting for our son’s recovery. Somehow there is sanity within this madness…. strength in the weakness…. heaven inside the hell. It’s there – glimpses of it. And it’s all tied together with hope.

I did not ask for this journey, but it seems to have asked for me. Heaven knows why it picked me. Surely there is someone stronger, braver, more capable than me that it could have chosen, but I am learning. I am mama (panda) bear, hear me roar! And mama bear always protects her cubs.

xoxo

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