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

 

 

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