Last night, your dad and I watched an episode of Speechless (S-I–SILENT NIGHT). In it, one of the characters makes a video for his family in an effort to help them understand that even though he can’t speak using his voice, he has a beautiful flowing inside voice. As he watches and observes everyone around him, he has thoughts and opinions about what he sees and it all makes an impact on him. As he tries to interact with people to communicate his needs, people who mean well very often miss what he’s trying to say and they end up doing something completely different. Something he didn’t want.
I spend a lot of time talking about you and talking at you, and your dad especially spends fun time play-talking with you. But our heart to heart talks are rare. In fact, I think it would be safe to say that most of our heart to heart talks come only after a stretch of rough days when you’re not doing well.
I wish I could talk to you. Even if you can’t understand everything that I say to you, the process of talking to you I think would be healthy for me. It’s hard to have huge highs and lows with you and not be able to just talk. So now I will. Through letters to you.
Thank goodness you are over your annual fall funk. January is here and you are back to your normal self.
As hard as it is for us to keep ourselves safe from you as you spiral down, we know that there is something significant that you can’t control inside of you that causes you to want to hurt us during this time. But we got through it, we were able to give you lots of practice on replacing hurting us with doing something sensory instead and lots of practice on how to relax and cope. Do you know that this is the best you’ve ever done with that? You were so responsive and your dad and I saw that you tried so hard even though it wasn’t easy. We are so proud of you.
What do you think of the new tools I came up with? Pretty clever, huh? I think you like them. And I know for sure you like the praise you get when you use them. God whispered lots of new things to try with you last year. Just when I thought I was tapped out, the ideas kept coming.
You are doing so well now. You learn so fast. You have changed so much in the short time I’ve lived with you. If you stayed like this for the rest of your life, it would be okay. But I know you won’t stay like this. We’ll keep working on it. This is the safest you’ve ever been and I know you’re going to get better and better.
We had a clinical team meeting about you yesterday. It was hard. Mostly because it felt like 2 worlds were colliding. The good news is everyone around that table wants the best for you and you are loved. Your dad has spent most of your life in battle for you. Did you know that? But we’re tired now. We carry the weight of so many angry eyes gazed on us. Lots of dents in our armor and not a lot of room to breathe. We promise that we will always make sure you are getting the help you need. We’ve made the decision to fight our battles more on our knees instead of at the table. I think it’s the best decision we could have made for you.