I have a daughter and she is nonverbal. It is one of the most difficult portions of my life. When the tears fall it becomes a guessing game. When we miss the mark of the needs the tears become screams. The frustration that mounts for everyone is intense. That screaming can last for what feels like an eternity. What ends it? Her resignation. She has no choice but to quit. Nobody is answering her need. Because we don't even know what it is.
Imagine all of your needs every single day and now imagine that you can never, not even once, tell one single person what you need. What a horrifying thing. Those dreams where you are being chased and you are scared and you try to scream for help but nothing comes out of your throat? That is her world. And we, as her parents, watch on in sheer pain and frustration. Just sign it!!! Just try to say something. Anything.
And she does. Every single day this brave soul yells out, makes sounds, tries. Not a single day goes by when she doesn't try. And her trying? It shatters me. I am her Mama after all and mamas makes things better. Don't we? Is there anything else that better describes what we do? We kiss bruises and skinned knees. We are the makers of magic and all wounds are healed by our touch.
But Me? I.can't.fix.this.
I can't wipe away this pain for her. And the sheer terror I face every day at the thought that she can't tell me what is wrong, who hurt her, what makes her happy and that I will get it wrong is something that breaks away pieces of me every single day.
Am I failing? No. I am not.
Is she failing? No. Never.
It is what it is.
But you need to know how this hurts. There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace.
Imagine sending your child to school or church and hoping and praying that nothing goes wrong. Imagine the stress of knowing that if something is wrong you, as the mom, will never know it. Wrongs could be committed at any moment and you won't know. The immense stress of wondering if you have chosen the right people to trust is never ending. If you are not with your child every waking minute, then that stress is with you.
We parents of children who are nonverbal? We have every single one of us had this happen. Someone was cruel to our child. Someone was unfeeling. Someone committed a serious wrong to our child. And we caught it. Not because our child told us, but because we are these hovering parents because we must be. And knowing that we caught it strikes terror in our souls just at the moment we begin to relax. There is no relaxing. Not for us. Not now, not ever.
And then you return home and snuggle your child and pull them close and tell them you love them. And you know you will never hear those words. And while they will snuggle you back you also know that time is precious and even in the middle of that loving moment the groaning may begin. Maybe you hugged too hard? Maybe they are uncomfortable? And it begins yet again.
You start guessing and you start getting it wrong. And at the end of the day everyone is hoping that tomorrow will be the day. Please let tomorrow be the day a grunt becomes a vowel. Let the groan become a word. Let the slapping become a sign.
And it doesn't. Because this is permanent. It isn't going to go away. This is permanent.
It is a cycle. But it is permanent.
And she never quits. This brave one? She owns me heart and soul.
So we try again. We get up and face the day. We encourage the yelling. Speak to us! Try again!! We smile with the laughter. We cringe with the grimace and hold out for that elusive hope. We learn that communication is more than words. And we learn to grant ourselves and those around us grace. And we learn how to fight better and smarter. We learn to change the laws, change the world. We learn to stand against discrimination. And above all we know that love takes many forms. Love requires no words. It is an intangible, nonverbal force.
And intangible, nonverbal?
That's our playground, ya'll. We own this.
We've got this.