It’s 12:30 am and I can’t stop thinking about it. I am awake and sitting on your feet. The pressure seems to give you comfort and keep the cramps at bay. Every time I get up, you wake. So I’m sitting here, wondering if you’ll ever get relief, and wondering what choices you’ll make if you don’t.
Life is complicated and confusing. It sends mixed messages and tries to trick us. It can make us feel both blessed and cursed at the same time. You don’t fully understand what Dystonia means. But I do and I know it will do all of these things in your life. I am scared that I already see the impact of life’s harsh realities making you grasp for control of things you can’t have control over. It scares me and puts me on high alert as a mom. Right now you are in possibly one of the hardest periods you have ever been through. Your symptoms are making your life hard and the meds to help you are only making it worse. They give you convulsions, anaphylaxis or hives. My job as your mommy is to get you a diagnosis, seek the best doctors, and get you access to all available treatment. But right now, I’m really really scared. You see, my powers to do theses things are running out. This terrifies me. All I can do is love you, hold your hand, and sit on your feet in the middle of the night.
I’m sorry to tell you that you live in the real world in a way other kids your age do not. The world that you know can be harsh and daunting. It can honestly be flat out scary, even for grown ups. It’s unfair, unjust and relentless. You will have pain and frustration that others will never be able to understand. You will have no control over so much in life that it will be frustrating. But, you will still have choices over your situation, even when I do not. No matter how hard life gets, you will always have choices.
It is important you know that none of us have control over life’s circumstances. People get cancer and have car accidents. Children everyday are told they have autism and dyslexia. People have infertility and surprise unwanted pregnancies. People can loose everything in a fire or win everything in the lottery. Sometimes it feels like the cosmic forces are just spinning the wheel of destiny to make things happen. Please remember this when you wonder why this is happening to you. It isn’t. It’s happening to all of us. Every single person will feel singled out by life’s circumstance at some point. It’s part of the human experience.
What I hope you learn and what I hope I can teach you is that you have so much more control than you think you do. You can always control choice. Control over your life is a mindset, not a reality. No one has the kind of control you seek. All we can do is assess the situation we’ve been handed and make choices. So make choices…good choices. Choose to see the good. Choose compassion and hard work. Choose open mindedness and acceptance. Choose positivity and when things get tough choose to look around for perspective. Choose kindness and persistence. Choose happiness. Keep your chin up and learn how to dominate adversity by extracting the lessons from it. These are the choices that will make you a man, a father and a husband. These are the choices that determine how your life will be judged. When your life has passed its final day no one will care that you had Dystonia. They will care that you were a good person and that you made their life better for having been in it. I hope you choose to make a positive impact on the world.
Please know that I don’t care how old you get, I am mommy and I will be here beside you. I will help in anyway imaginable. But the day is coming when all I will be able to do is help. It is your life, not mine. I can’t make you happy and I can’t control the thoughts in your head. I can’t require you to have inner strength. I can’t control how you feel and how you treat people. These things are all on you. These are the choices that you can control. Never ever forget that. Life will throw some unexpected things at you. But you, and only you, will get to decide how to react.
Whatever happens, whatever choices you make, know this: I will always choose you and your brother. I will love you and I will support you, even beyond my last breath. So while the cosmic forces are busy making whatever plans they have for you, know that I’ll still be here. And know that I will still choose you.