I see you, crying in your shower because that’s the most time you have somewhere private and I see you wipe your face and turn to face another day. I see you exhausted from another night of little sleep, either from worry or getting up to take care of your child. I see you staring at your calendar full of appointments, unsure how you’re going to catch your breath, eat, or pee. I see you fighting every day, on the phone with insurance companies, providers, and systems, trying to claw your way through red tape to get the help your child needs. I see you answering the same questions, over and over, trying to keep a polite smile. I see you filling out endless forms, again and again.
I see you when you’re frustrated and feel like giving up. I see you lie awake at night, trying not to follow all the paths of “what if,” all the dark possibilities that could like ahead for your child and I see you choosing instead to focus on any tiny bit of positive. I see you when there seems to be nothing positive to be found and you fall back on dark humor or chocolate. Then I see you jump into your diets and workouts and self care, struggling to keep it up in the chaos. I see you doubt yourself, questioning every decision. I see you throw away the things broken or ruined, reminding yourself that things are less important than the child you love. I also see that it still hurts.
I see you as you hide the bite marks or wipe off the spit from your child or hide bruises he or she gave you. I see you gather your dignity and protect your child even from themselves. I see you hold them tightly even as they rage and I see you avoid the stares of strangers who judge you. I see you leaving the store, trying to keep your head high and hold back the tears and I see you break down in the car. I see you try not to lose your temper with the teacher who won’t follow a plan or the adult who suggests you discipline the disabilities out of your child. I see your web searches, always looking for a new service, a new treatment, a new hope. I see you try different schools, different therapists, different doctors, a different diagnosis…all just searching for anything that will help your family.
I see you hold back when someone asks you the simple question, “How are you doing?” I see all the answers you could give when instead you smile and say, “Good!” I see you feeling alone even among friends or staying home because you just can’t get a sitter who can manage your child. I see your isolation and loneliness as you watch years tick by. I see the mask you put on to feel strong enough to face the world, the one you wear because you fear you’ll break down if you let even a little of your reality slip through. I see your shreds of pride you tightly hold onto because without them you feel naked and vulnerable.
I see you let go of dreams for your child, adjusting your expectations over and over and celebrating every small shred of success, victory, or forward growth. I see your happiness wane as you watch your child’s peers attain milestones or achievements you know your child can’t reach. I see your frustration as you keep having to do things that other parents have been able to move on from years ago, as if your life and your child’s are stuck on hold while the story moves on for others.
I see your guilt and how hard you are on yourself for being human, for the times you lost your temper or the times you were so exhausted you fell asleep when you should have been watching closer. I see your shame at not being able to do more when you’ve been given a task too big for anyone. I see you medicate your pain with food, scrolling on social media, movies, or just zoning out.
I see the good days where you wonder if things are getting better and I see the bad ones where you wonder if they ever will.
I see you trying to make an impossible balance and I see your guilt that it never quite adds up. I see your anguish at having to stay at work when you think you’re needed at home, school, or one of the many appointments. I see your fear of being fired when you ask for yet another day or hour off, hoping this isn’t the one that puts your boss over the edge. I see your worry for providing for your child even as you wear yourself so thin.
I see the stress of all this on your relationships. The friendships you just couldn’t keep up with or the friends you lost from always having to break plans. I see the family that drifted away from you because they couldn’t handle your child or disagreed with your parenting. I see the spouse you barely have time to hug and who you struggle to keep in the loop.
I see you crumble, falling apart to pieces, and I see you rebuilding yourself, again and again. I see you every time you think you have nothing left, that you can’t give any more, that you have reached your limit, finding some hidden reserve of strength to go just a little further. I see the days when that reserve is exhausted and you just focus on survival.
I see the fierce love you have for your child swirling in a mix of disappointment, frustration, and rage at a system that offers so little help and support for families like yours. I see you fight the world for your child and I see you fight against your child when they can’t see what is good for them and you have to keep them from harm.
Yes, I see all of this, but I hope, in all of this that you see that you’re never alone and that as you cry in your shower, countless parents cry in their own. As you fight your battles for your child, other parents are pulling on their suits of armor and super capes, too, and fighting similar fights. As you run on empty and fall apart, so many others are also. As you feel so alone, so misunderstood, and so forgotten in all of this…you are not alone and you are understood and remembered by every other parent who is also raising a child with special needs.
Please…reach out to others. You don’t have to do this all alone and even just having coffee with someone who doesn’t judge you for your child’s differences or what you must do to accommodate them, who can just sit in that place with you can make all the difference between finding enough energy to keep on going and falling to the ground. Someone who you can talk to without having to tell you how “strong” or “amazing” you are. It’s not that you aren’t all those things and more…it’s just that sometimes you’d rather not be those things and instead have a more “normal” life with everything that would mean for you and your child. Sometimes you just need someone who understands how hard all this is and doesn’t try to convince you its not or suggest everything you’ve already tried, but who will just be there, in it with you.
I see you…and the rest of us do, too.