Lost and found

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:

rhema_before

And then suddenly, one day, we had this:

rhema_lost

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
-St. Augustine

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11 thoughts on “Lost and found

  1. You inspire me. You and your family. You are so compassionate. I love reading what you have to write, because even though we have different struggles, I relate with you. You and your family are truly beautiful people. God bless you.

  2. Hopefully our children will know that we love them. That we’ve always had the best intentions, even when we’ve failed. That we would never trade them. That we would end their suffering if we could. Absolutely, we would. That, like everyone, we are flawed and imperfect and scared and that we have not always known what to do, and have not always done the right thing, but we have always loved them. Beyond measure.

    What a beautiful little baby, that Rhema!

    • Michelle… your love for your children is unquestionable through your words and writing. They will know and they will feel it, too.

  3. As always you say it so beautifully…..”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 too have look back at what I have shared…..What do I share now or in the future? I often think….What if they had blogs when I was growing up?….What if either of my parents had written publicly about raising four children?….What if they had shared with the world the joys and the challenges of having a son with a learning disability and epilepsy?…. and what if they shared their grief of losing their son to suicide in an open forum like facbook, twitter or a blog? I don’t know if they would have chosen that route…..but if they had shared their journey I feel that I would cherish each word they had written….I know every word and syllable would be a lesson-a gift. I am confident that some stories would be hard to read….I am sure some of them painful……but to be able to look back and get a glimpse of their story…..a journey that I was on with them…..from their perspective…..well, I would cherish it forever.
    I think your Rhema and your sharing your story about your sweet family….helps us all to know we are not lost….that we are all found….and I thank your sweet girl and you for that gift..

  4. Miss Jeneil, as someone with autism who has read, I think, every post on your blog over these years… if my mother had written as you would, I would hear nothing but deep, deep love for her children grown from her devotion to the Lord in the words she writes. It is not wrong to hurt and wonder and question. The wrong is in the fear-inducing, inflammatory language, which is very different from anything you’ve said.

  5. I am always amazed about how you always bring everything back to the proper focus – God. And the Word. If I were in your shoes (and even in my own), it would be about me, me, me, and so many questions and so much angst. And I know you must have some of those thoughts but you always bring it back to that place of comfort, that place of solace – resting in the Truth of the Word. That is one of the many lessons that I take away from this blog and your very generous sharing of your family’s lives. Thank you, Jeneil – may God bless you always.

  6. We all love our kids passionately no matter where we are in the process of coming to terms with our own personal situation. It is so important to be respectful when we share our stories, however, we also need to be real. Autism is not all rosy and light, it is actually hard work for our kids and us, especially for those who are on the more severe end of the spectrum. Respect to you, Jeneil. You write beautifully and the love for your girls shines through each post. xx

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