Have you ever been lost in a dark tunnel without a flashlight? You can't see behind you or in front of you. You feel with your hands stretched out, each step a risk, as you have no idea what lies ahead. It's too dark to turn back, you know you have to keep moving forward but you don't know where you are going or where this darkness leads. It is so dark you can feel it, like a blanket you are clocked in it, so thick you can't remember what life was like before the lights went out. This is the darkness of PANDAS, when the lights go out and the child you loved disappeared. It is especially dark in the beginning when the diagnosis is unclear or help is scarce or unavailable. You yell into the tunnel, you scream and your voice echo's against the walls; a chilling reminder that you are here alone, navigating through this darkness untapped and without a guide. There were times that I navigated this tunnel on my knees, dragging myself through the muck, clinging to the hope that maybe I would find my way out. I was to afraid to even stand, lest I fall and never get up again, I was hanging on by a thread.
Yet, what if I told you that on the other side there was light and laughter and joy. That beyond the tunnel is the REST OF YOUR LIFE, for you and your child. I know you can't see it, but it's still there waiting for you. What if I told you that the darkness was just a curtain and that you were literally just a few feet away from the exit. I wish I could just reach through and pull you out onto this side of hope; however, the only way to the other side of the tunnel is to walk through the darkness. I hope that even as a whisper my voice will reach into the darkness and that when you hear the proclamation of hope you will keep walking towards the sound of my voice.
When I was in the tunnel, I couldn't picture anything more than what was in front of me, I couldn't even see my own hand. There were moments that I imagined giving up, just laying down and just dying right there on the floor. Some days it was just hard to even breath, the grief was so heavy. I couldn't write about it then, because it was so painful, and to be honest, I didn't have the strength to believe that things could ever change.
On the other side of the tunnel my son actually still has struggles and things are not 100 percent, however I am the one who has truly changed. I have walked through something that has transformed me and I will never be the same. Had you talked to me a few years ago, I would not have predicted this outcome. At the time, I would not have imagined that this experience would improve me, in fact, I felt it brought out the very worst in me. I want to share this with you, because I know you think you are the only one who is feeling these things, but that simply isn't true. When my son was at his sickest, he was not redirectable or even reachable. He would literally scream for hours and hours, he would throw things, break things, punch me, curse. I was afraid for my other children so I sent them to my parents house. I know now that his brain was on fire and this wasn't his fault but at the time, I didn't know what was going on. I became reactive to him, I developed PTSD, but I didn't realize that was what I was experiencing. When he would start screaming, I would instantly go into fight or flight: it became an automatic response. I would scream back at him and I did not respond in a very productive way for either of us. This of course only lead to more and more grief on my part. I knew he was struggling but I was struggling too. I was so scared, for him and for our entire family. The guilt I had was as thick as the darkness, and like a brick I added it to my backpack, which I drug through the tunnel of darkness, making it even more difficult to get to the other side. I carried these burdens alone for the most part; it's hard enough to have a child who is struggling immensely, but how do you talk about your failings as a parent? How do you even face such doubt as your own ability to cope? How do you navigate feelings of inadequacy? It was beyond unbearable. Could I tell people, there are days that I feel like I hate my own child? Could I tell people that I was full of anger, guilt and despair and that I was struggling every day to get through? I felt like I was dying on the inside, but I couldn't tell anyone because I was so ashamed of myself. I was so ashamed of the way that I felt about my son. I was ashamed of the things that I said to him in anger and in reaction to the illness that stole him from me. So I hid these bricks in my backpack--the bricks of guilt, the bricks of failure, the bricks of shame and I told myself I was a failure as a mother, and I cried in the darkness alone.
What if I told you, that there is a way to actually turn on the light in this tunnel. It may not actually bring you out of it, you may still have to walk through it, because healing for us has not been linear, it has been up and down and everything in between, as it often is with PANDAS. Here is how you turn on the light. Whether your child has PANDAS or some other chronic illness or is just a challenging kid; We have to normalize shame. We have to stop acting like it is unusual to be struggling as parents dealing with children who are chronically ill, with an illness that is debilitating at times. We have to be honest about our humanness, and we have to be kind to ourselves. For the past four years I lied to myself, adding brick upon brick of shame into my backpack. It wasn't until I opened the pack and pulled out the bricks and started to name them, that I was finally free of them. Where do you tell yourself "I am not enough?" When you bring the bricks out that are weighing you down, and you identify the lies you are telling yourself, then you will be free of them and you will be able to walk through this tunnel a little lighter. I almost lost myself in that tunnel, I gave everything I had and more, to try to heal my son, mean while dragging my backpack and dragging my unnourished, emaciated self through the muck. What I mean is, when we are feeding ourselves these lies of "shame" and more so, the lie that "I am the only Mom that feels this way", the lie that "I am not a good enough Mom, or patient enough Mom" or whatever you say to yourself. When we feed ourselves these lies we are depriving ourselves of the nourishment we need to face the darkness and get through the tunnel. Whatever we set our mind on, will grow and expand. The more I berated myself, tore myself down, envisioned a future that was hopeless for both myself and my child--the more the darkness grew, until it threatened to consume me. This is such a slippery slope, and you fall into it without realizing it.
Believe me I know where you are walking, I have been there and barely lived to tell about it. I can't empty your back pack, you have to do it for yourself. So tell me, what are the bricks you are caring around? Will you bring them out into the light? The more we Mom's bring out the shame we are feeling, the less power it has over us. The second thing I would challenge you to do, is to attempt to write a different ending to your story. I'm going to just be honest, the story I was telling myself was, "my son is probably going to grow up to be a criminal." This isn't a joke people, this is where I was in my mind, because yes, it really was that bad in our home every day for a long time and I was drowning in sorrow. I have to bring this out into the light, least any mother out there think she is alone. I just wont have it, I wont let this world loose a beautiful mother to this darkness or to the lies that threaten to beat us down and tell us we are worthless. It simply isn't true. So, I ask you, what is a story that you could write for yourself that is better than the one you are living now? I know you can't feel it right now, but what if it could be true? Could you write your story of hope the way you want it to turn out, and then keep it by your bed and read it to yourself every night? It will speak into your darkness and give you hope, and each day you will believe a little more of it to be true.
This is my story:
There once was a beautiful boy, he struggled with many things and then he got very sick. He was still the same beautiful boy but he was hidden from his family and transformed into something that was not the likeness of himself. He appeared so different on the outside that after a time it was hard for even his parents to remember the beautiful boy that he was. There was a shell around it him, it seemed as though it was him but there was only a trace of who he used to be in the dim light of his eyes. His mother loved this boy more than her own life, she fought for him every day. She made many mistakes as all mothers do, she fell hard on her face but like a warrior she got up and she fought for him. With blood a sweat and tears she fought for him, on her knees and with heartfelt tears she begged the God that she loved to save her son and save her family. As God often does, He didn't answer immediately, He was surely at work but He was doing more than just working on the boy, He was working in the heart of the mother, whom He truly loved and knew that she was more than she realized. He had hopes and dreams and plans for the boy and his mother that were beyond either of their understanding. Yet sometimes hopes and dreams are grown in the soils of hardships and pain. God had a plan to use this mother and the boy to bring hope and light to others who would walk a similar path. The mother clung to her faith if only by a thread and others prayed for her when she didn't have the strength to pray for herself. The mother woke up one day as if from a daze and realized that she could not properly take care of the boy if she didn't take care of herself. She realized she was weak and thirsty and tired and worn from the years of trial. It was so hard to change, as she had always put the boy first, but she realized that if she continued this way, she wouldn't be strong enough to care for the boy so she set off to take care of herself first. She first admitted she couldn't do everything for him, she needed help so she asked for it. She enlisted others to help her. She started to talk about her struggles and bring her pain into the light. The more the light shown on her the more she grew and strength entered her body and feed her soul. She started to make herself a priority, she feed herself with nourishing food and exercise to strengthen her mind and body. She took care to sleep and she fed her mind with words of truth and empowerment. She threw off the sack of heavy bricks and lies that kept her from standing up tall. Something strange happened. She started to see the boy under the mask that kept him hidden, she remember the child he was and she spoke truth into his life. She prayed over him when he was asleep and even though he was still hidden from her she believed and started to hope that he would get better. She refused to entertain the thoughts that added weight to her backpack, she threw them off along with the lies of her inadequacy and she started to walk with her head held high. Even when he wasn't well, she became well, because she knew that his healing depended on her caring first for herself. She set her heart towards the belief that he would be fully healed and she told herself this even when it wasn't true yet.
This mother grew and she thrived and she lived to tell her story to any who would hear it. She didn't have the perfect boy, and she wasn't the perfect mother. But she was the best mother she could be. Her beautiful boy came back to her, and even when he struggles now, she doesn't react or fall back into fear that he will be taken again, for she knows he is always her beautiful boy, and she knows she is the best mother for him. She has come to be this mother as she grew out of the soil of adversity, nothing can steal this from her, she has lived to tell the story and so will you.
This is an amazing video by Brene Brown, it really encouraged me and inspired this post: https://www.youtube.com/watch?v=iCvmsMzlF7o