Dear My Advocate
Dear my Advocate,
You have played the part from the moment I was born. For some, even before that. It’s in every decision you make and each and everything you do. I see it in the the meetings and seminars and appointments you attend. I see it in the conversations you have with my doctors, my other caregivers, my friends, my community. I hear you and I watch you as you remind the world around me how much I matter. This means the most to me when the world begins to treat me like I don’t. But I want you to know, your advocacy is so much more than the big things. Yes, it matters when you fight for my human rights, for my health, for my belonging. But even more than the way you push our way through the world to make it a better place for me, you impact me the most in the love you show for me in the way you show up for me moment by moment.
It’s the way you set up our home to make it safe and cohesive for my mind and body. It’s the tiny, micro decisions from clothing and hairstyles to the bigger choices like medication and therapies that you continue to make with my best interest at heart. It’s in the sacrifices you’ve made in your career to protect my routines and help me grow. It’s in the way you look at me, cheer me on, speak to me with dignity and respect, apologize to me when you make a mistake, have patience with me, and the way you show up for me every single day, no matter what you’re going through. You refuse to give up on me, and it’s because I matter. I matter to you, and I matter to the world. I want you to know I feel that deeply because of you. The way you advocate for me has become the center of my identity, and your tender loving voice is the voice I hear inside. I know I can’t always express it, and my development often keeps me from really noticing the little things. But I want you to know that your advocacy is everything to me.
As I’ve been so busy growing up, I haven’t slowed down to notice you growing older. You are a little relieved by this, because you don’t want to share your worries about our future with me. I don’t think about it much, and that’s thanks to you. But you do, don’t you? You worry about how the changes time is bound to bring will impact me, and planning for that takes up a lot of your energy. As I observe you spending your life pouring into me, I seldom stop to wonder how often you pour back into yourself. But in all you do for me, I hope you never forget to do the same for yourself. After all, that’s maybe the most impactful way you can possibly advocate for me, and I need that more than I need anything else.
I may not show it, but I hope you advocate for your time. I hope you protect time to take care of your body, your mind, and your spirit. I hope you spend a little extra time on your drive home to observe the sunsets when you can, because I know they make you happy. I hope you spend more time on the phone with a friend, out for dinner with your coworkers, on vacation with your spouse, because when your own human needs are met, you’re able to help me meet mine. I hope you make time for the gym, for putting healthy and delicious food in your body, for drinking enough water, and for being outside in the sun. I hope you’ll prioritize making it to your health appointments on time, and try really hard not to put them off on my behalf. After all, your body being healthy helps you keep my body healthy, too. I hope you advocate for your time like you advocate for me.
I know this has been extremely rewarding for you, and I don’t spend much time considering just how hard it is. But you’ve been through so much to continue to fight for me, haven’t you? Your heart has carried more fear and more grief than so many of the parents and caregivers around you. Sometimes you feel the pressure of the world on your shoulders, and worry you’ll have to carry it all alone. And oh, heaven knows — sometimes you do. Sometimes it’s all on you. Sometimes every avenue is a dead end, every resource comes up dry, all the research is futile, and at the end of the day, it’s just you and me. Both vulnerable. Both struggling. Both afraid. Both exhausted, looking for answers. And I look back up at you, and you overcome every obstacle to carry us through it every single time. Don’t you? Maybe it’s true that you haven’t done it all perfectly. But when the whole world is up against us, and our backs are to the wall, you haven’t let me down yet.
And if I could ask for just one thing that I really need, it would be for you to truly heal from all that you’ve been through to protect me. Hunt down every possible resource, leave no stone of internal pain unturned, and do whatever it takes to heal. Leave no generational curse demanding you to be more, to be better, to do it all by yourself unchallenged. Uproot all of it. Do the bravest thing and heal from all the wounds that keep you tethered to pain that keeps you from enjoying me to the fullest. The painful and terrifying truth that this will never stop being challenging echos through each moment we spend together, so please don't wait until it gets easier to finally be happy. Please don’t wait until my needs stop demanding of you to be healthy. Please don’t believe the lie that neglecting yourself is a means to an end if it depends on our circumstances changing. Because we both know that they won't. Not really, anyway. We’ll overcome one battle to be met with the next. But every day I’ll be looking up at you, and you don’t know what it means to me to see you smile.
No matter what each chapter brings us, I hope you’ll hold closely that you are the sun and the moon to me, and you are all of my stars. Not because you are perfect. Not because you never fail. Not even because of the sacrifices you make or the way you advocate for me. But because I know I matter, and that’s all I’ve ever needed, and that’s all because of you.
With love,
Your Disabled Adult Child
