A couple months ago I was going through old blog posts for the sole purpose of ohhing and ahhing at pictures of my girls when they were younger. I read an old post that left me very unsettled, and by the end of the night I was ready to delete it and a few others. I realized that all these years I’d not given enough thought to how Rhema might feel about some of the stories I’ve shared. I realized that I’d never acted as if she might really be able to read one day.
As much as it is said – presume competence, they are taking everything in – and as much as you know it’s true – in the day-to-day caring of a non-speaking autistic child, sometimes you forget. Or at least I forgot. And as David Mitchell writes in The Reason I Jump, “as the months turn into years “forgetting” can become “disbelieving””. There are moments when I believe big and moments when I underestimate her and limit her with my assumptions – sometimes all in the same day.
The idea that she could be hurt or embarrassed by something I’ve written about her just crushed me. But my Rhema has been patient and gracious to her mama. Truly. I’d like to think that she would find in these years of words her parents seeking ways to live out the lessons God is teaching us through her. That she would find a long love letter from my heart to hers.
I am not able to have a conversation with her about what to share or not share here. In recent months I’ve really wrestled with this and how I will blog in the future.
This past week was a hard one for the autism community. Autism Speaks’ co-founder Suzanne Wright’s call to action left many people angry, sad or both; I think it illuminated the hurt on all sides. Wright paints a picture of 3 million children in America gone missing – our children with autism. Many parents cried, “My child is not lost!” And many autistic people responded, “I am not lost!”
And so the lost concept has been on my mind all week. Truthfully, there was a time we considered Rhema “lost”. And I most certainly was lost. I wrote about it four years ago, and I think Rhema – when she reads it some day – will like this one:
(Originally published November 2009)
I don’t know exactly what happened. Or how it happened or why it happened.
But at one point we had this:
And then suddenly, one day, we had this:
For whatever reason she retreated to a place we couldn’t reach, and every day since then we’ve been working to draw her back. You could say we’ve been trying to “find” her behind the walls of autism. There have been moments when we’ve discovered parts of her we never knew existed. And each discovery is thrilling and addicting – we want more and more. She is pursued in earnest; this seeking to know more of her a daily aim.
I was “lost”, too. Gone was the self-confident, capable, make-it-happen version of myself. I had no ability to make my daughter speak or eat or even sleep. Angry. Bitter. Helpless. Unable to concentrate. My faith shaken. Going through the motions. For a year. As we searched for ways to help Rhema, I wondered where I was… and where the heck God was.
Where are You in all of this?
Turns out it’s a good question. Even Job said, “O that I knew where I might find Him!” (Job 23:3)
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the LORD… Jer. 29:11-14
I still have my questions, some of which I may never get answers to in this life. But what I know, what I’ve found so far, is this:
There is a God who loves you with an everlasting love. It’s a love ‘that goes beyond the highest star and reaches to the lowest hell.’ This God takes you, lost, broken and flawed and finds you worth it. He delights in you greatly, rejoices over you with singing. He is called Faithful and True for he takes the guilt, shame and sorrow and overcomes it on the Cross, and pronounces you free.
In all your looking, He says, look for me with all your heart. I will be found by you.
A most important search.
It is love that asks, that seeks, that knocks, that finds,
And that is faithful to what it finds