Sunday, September 18, 2016

Unfinished

This week I've shared several posts from pieces I've written in the past. Mostly these posts have been to help me process what I heard at Daniel's neuropsych exam last week. I needed to reflect on Daniel's story and remember that It is His Miracle and He Will Provide. I could tell that I was starting to let the story God is writing get clouded by worry about the future, so it was good for me to remember the ways He has provided for Daniel this past year through a sweet classmate and an exceptional teacher. To help me keep trusting that He will continue to provide. To keep believing that He is still in control. And to keep holding on to hope in Him, because His plans are still good.


The two physicians who examined Daniel last Wednesday were very friendly and they kept asking me if I had any questions. But they seemed to treat Daniel as a “case” not as a person. And their evaluation seemed kind of cold and lacking in hope. I was expecting to get an assessment of how Daniel's brain is working, along with some ideas on how we could make adjustments to help him learn better. There was definitely some of that, but the assessment seemed more focused on the long-term implications of his disabilities. It surprised me that one of the examiners even used the word “retarded,” because I didn't think that word was used anymore. They told me that I could put Daniel on a waiting list now for a group home after he turns 18. It wasn't at all the kind of report I was expecting to hear.

It wasn't that the report was new news. But the unexpectedness of receiving these kind of results and the unhopefulness of the examiners led my heart to be flooded with grief. And as I asked myself, “Why is this so hard for me?” I realized that I had been holding on to hope for breakthroughs for Daniel. For him to be “fixed,” made more whole.

My hope for the neuropsych exam was to discover a certain way of helping him learn that would bring significant changes for him academically. (It didn't.)


My hope for his sleep study in July was that we would gain insight into what was going on with his brain at night, that might address his memory issues. He received a diagnosis of restless leg syndrome and a new medication to try with the potential of better sleep and significantly improved attention span. (But we haven't seen any change.) 


My hope for his gait lab study in April was for improvement in his walking and running. (But he is still dragging his left foot even with the new leg brace and has already worn a hole in his shoe.) 


So the results of his neuropsych exam actually exposed these different unrealized hopes I had been holding on to, as well as my fears: What if he doesn't make progress? What if his strange behaviors are still here in 10 years? in 20 years? What if learning will always be slow and a struggle for him? Maybe he will only reach a 4th-6th grade level academically. And never be able to live independently.

As my fears have been uncovered, God has been speaking to me about them. “I am still sovereign over Daniel's life. Why worry about the future?

If Daniel doesn't show improvement in these areas of concern, that doesn't make him less of a person. The way that he is right now, God has declared to be good. While I can still rejoice in whatever progress he makes along the way, I can let go of my hopes for significant breakthroughs that will “fix him” or change him into a different person.

I can rejoice in who he is, not just in the progress he is making.

This revolutionary idea comes from a great article I read last week by special needs mom Heather Kirnlanier who describes what radical acceptance looks like:

“It seems that our jobs as family members is to practice radical acceptance of our loved ones. Even in times of healing or recovery. Even while a person might also be working toward change, or progress, or gross motor goals, or feeding goals, or more stable mental wellness…. Even while we are helping them work toward these goals, as any parent of a kid with disabilities, or “special needs,” is doing. We are attending occupational therapy with them. We are modeling an AAC system for them. We are offering them spoonfuls of vary-textured purees. But if we do this with the anxiety of wanting them different, with the clenched jaw of nervous hope—the hope that this act, this spoon, this therapeutic hour will change them into something or someone else, someone we desire—our efforts backfire. Our desire to want our loved ones to be different will serve as a small eclipse between us and the solar source of our love.”

God has also spoken to me through the Grace-filled sermon series we've been listening to by Jonathan Cleveland. On September 4, his message was “Grace leaves room for what is unfinished.” He challenged us to ask ourselves “How are you leaving room for the people you love to be unfinished?” He said that it's Christ's job, not our job, to fix other people. We are to bring grace into our relationships. These ideas have been really helpful for me to remember as I think about Daniel's situation.


Yesterday Daniel ran his first cross country race of this season. Last year an adult ran with him at each meet to encourage him to keep running and to help him stay on course (in case he forgot what he was doing and started chasing butterflies). We weren't sure how he would do on his own or if he could even run a full mile. But he did it! I was so proud of him when he came out of the woods, running toward the finish line. I had been talking to another mom, and her son who had finished earlier walked up as I was turning to leave. I overheard him talking about Daniel, so I lingered to hear the mom's response.

“That boy has a problem with his legs so he doesn't run very fast.”

“Right. But look at him running and not giving up.”

“Yeah. He's still running.”

“And that's the whole point.”

Yes, I silently agreed with her. That is the whole point. He hasn't given up. He's still running. He's doing his best. And it doesn't matter what he looks like when he's running or how far he finishes behind everyone else. This is his race, and he's running it with courage.

And while I'm cheering him on to the finish line, I want him to not just hear "run faster" or "become better," but to hear me celebrating the gift of who he is right now.

I want him to know that I'm proud of who he is, which is different than being proud of how far he's come.

Radical acceptance of what is Unfinished.

Because it's part of God's beautiful story of Grace.





2 comments:

  1. So true, Jodie! This is a beautiful description of a mama's heart, molded by the Father's hand and melted by the love of her child.
    Thanks for sharing the insights you are learning on your journey.

    ReplyDelete
    Replies
    1. I love the way you described it Aunt Lynne. Thanks for commenting. Hope to see you soon!

      Delete

LinkWithin

Related Posts Plugin for WordPress, Blogger...