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

 

 

They just don’t get it…

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I get tired of people telling me that things will get better when…. When Panda is older and Gigi is Panda’s age now…. life will be much easier. (Oh, I hope so.) It’s easy for parents of healthy children to say this. But this isn’t an age thing. He isn’t suddenly going to grow out of it just as suddenly as it happened. We actually have to get to the root of the problem. We have to attack the Lyme and co-infections, the way they’re attacking our son. If we don’t, life isn’t going to be easier. He isn’t going to be better. Perhaps when he’s older he will have developed more effective coping strategies. (And maybe we will have too.) But maybe he’ll actually be more challenging to cope with because he’ll be older, stronger, bigger. And I am a tiny person, it’s getting harder even now to hold him when he’s in a uncontrollable rage and destroying the house. I don’t have a crystal ball. I have no idea what the future holds. But it is exhausting just to have those conversations with friends, family, and neighbours who just don’t understand. Because they don’t see it. They think Panda is a sweet, highly intelligent boy. And he is – no doubt about it. But most people don’t see what we go through when he’s flaring. A few really close friends get glimpses. Snapshots. Sometimes I want to show people the videos we’ve taken and say “See! THIS! This is our life! You can’t make this shit up!”

It’s not really their fault. I don’t know if I’d believe it if I didn’t see it, live it, breathe it. But I guess I wish that people had a little more faith in me. Trust me! I know what I’m talking about. The reality is though, that no one gets it until they live it. How could they possibly? It’s okay to hope that people will listen and be compassionate and empathetic of the road we are walking, but we can’t expect them to truly get this “invisible” disease. Impossible.

Of course there are those completely ignorant, people who tell you all kinds of unsolicited, unhelpful, judgemental crap – ahem, “advice” – but you have no place for them. Try not to waste any of your precious energy on people like that. No, I’m talking about people you adore – lovely, honest, kind-hearted people who just can’t get their heads round what you tell them, and what they actually see. If they only ever see your child holding it together, or the start of what could seem like a tantrum (just like every young child) they’ll think he’s normal. Maybe it’s different with an older PANDAS/PANS child, then you wouldn’t expect them to be raging and having tantrums. (And maybe they even think it’s me who has gone a little crazy – Abso-bloody-lutely! I am a little, maybe even a lot, crazy. But only because of what I’ve lived through for years. And it is me who lives through this the most with Panda. Papa bear is on the battlefield with me but he “gets” to go to work (and it is like an escape – he even tells me this.) It’s me who is here day in and day out. It’s me who is losing my mind. So I can only imagine what it is like for Panda. I escape sometimes, but when does he get to?

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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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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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I’m not a good mom. But am I enough?

I sometimes wonder if I’m screwing up my kids…. When I’m lying awake at night, (I’ve struggled with insomnia for many years,) I worry that the choices I make are somehow traumatizing our children – a bit over dramatic, I know but, I come from a long line of worriers so it’s to be expected. I’ve even thought that perhaps I should never have had kids – that I’m just not cut out to be a mom. I know I’m not alone here. Why can’t we just have a “normal” life?

I may not be a good mom. But am I enough? I’m the mother my kids got. I do believe we’re not given to people by accident – these are the kids we were meant to have. Is love enough? If you love your children from the depths of your soul, with every fibre of your being, to the moon and back, is that enough? If you won’t ever give up searching for answers, for treatment to get them well, is that enough? I hope so. I’m doing my best with the life we’ve been given. Sometimes I’m all out of patience. Sometimes I want to run away – but I don’t. Being a parent to a brilliant, special needs child has made me feel so many feelings I didn’t even know I had. This crazy, invisible-to-outsiders, make-me-pull-out-my-own-hair, fall-to-my-feet-in-tears, want-to-go-outside-and-scream-obscenities life is our “normal.”

I hope that when our children are grown up and have survived this tumultuous childhood they won’t think: “Wow! Mom really screwed us up!” Is it just this generation of mothers who so often feel like failures and carry so much guilt, or did our mothers and grandmothers feel this way too?”

I think instead of lying in bed at night thinking of the things I did wrong today, I should focus on the things I did right, and be hopeful for tomorrow. My deepest wish is for them to be healthy and feel happy and loved.

There are so many times when I feel like I can’t cope with this hell anymore. Why did this happen to us? But somehow I always do cope. Somehow I’m okay. (Even though life seems like a broken mess. I am not broken.) It think it’s called survival and hopefully there will come a time when we don’t just have to survive life – we can actually enjoy living it. Until then, I’m gonna keep telling myself – “You got this, mama! You are enough!”

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