Don’t tell me I’m mourning my child

“Parents are still in the fase of mourning and accepting” it says. It’s the official report from the council. Our son’s plan. The woman who wrote this for us is on our side. Luckily! It’s the plan we aimed for, I’m happy.

It’s that one line that bothers me. It’s irritating me. Mourning? I’m not in mourning, I’m not mourning my child. My child is here, just as perfect and complete as he was before this rollercoaster began. “Are you mourning him?” I ask my husband. No, he doesn’t feel like this either.

The line was written by a woman who was at our house for about an hour. And after that hour, in which she told us she was there for us, she apparently felt like she knew all about our situation. Odd, she doesn’t feel right we thought after she left. My intuition told me she wasn’t right for us. Despite her friendliness I would rather erase her from our file. I want to do it myself.

My intuition was right. She didn’t help us, quite the opposite actually. She even said “you should be careful not to deny your child the proper care because you can’t accept him for who he is”. The more I think about it the angrier I get. “What do you know about it?” I want to scream at her. Do you really think you can define him in the short time you had available for him? Quickly, between two other appointments? Did you even look at him? Did you listen to us? Did you SEE him?

Yes, she saw my tears. They show up a lot lately. And at inconvenient moments, that’s hard sometimes. But I’m not ashamed of my tears. Because I think they are normal. You’re talking about my child here. My heart. My everything.

But they’re no tears of mourning! She doesn’t understand. They’re tears of sadness but even more so of fear. Not the fear of everything my child won’t be able to do, or what he’s going to miss out on. It’s the fear we won’t be able to protect him from the world. This world that expects him to function in a certain way at a certain time. That will reject him if he doesn’t fit the box. It’s fear. Something I would never have predicted would have such an important role in this process.

It’s so weird to feel as if there’s a counterparty. Everyone we talk to seems just as nice. More than once they’ve claimed to be our spokesperson. The one we should turn to when we need help. But after a conversation like that I often feel empty, sad and scared.

And nothing comes after it. No advice, no encouraging words, no “it will be alright” or “let’s just start helping him”. Nothing. And we’ve waited a long time.

My child is no problem. Not to us at least. He the most beautiful, he’s the best. We’re not scared of our future. We will make it, I know it. We’re not mourning something we’ve lost, something that was never there. He has always been himself. His own unique, funny, quirky, wordless self. We fear the world for our sweet child. And apparently that starts today.