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.
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