It’s been nearly seven weeks since I’ve written a post. I guess it’s kind of been like a long night of the soul. I just couldn’t bring myself to write for whatever reason. Uninspired, maybe. A little stuck. A lot stuck. Yet, at the same time, going deeper in this spiritual quest I’m on. I’ve been doing some reading, some journaling, a lot of praying. In the meantime, my blog has sat collecting dust. Perhaps Facebook and its bite-sized morsels of the beautifully mundane and funny, and the endless volleying of daily autism news via bulldog autism moms has filled a little bit of a void that this blog initially provided for me.
But I’m not quitting on my blog! Far from it. I’m just realizing more of my place amongst all of the voices of parents crying out for advice, for justice, for hope, for answers in this autism quagmire. Perhaps it’s a lonely niche I’m feeling led to because it’s largely spiritual. (Although www.rhemashope.wordpress.com does it better than anyone I’ve found.)
What Do I Have to Say?
While I do a lot of research, and am up on and in the camp that rues the vaccines, I have nothing more to offer to that discussion, really. Although I cheer on those who are going before government to lobby for our kids, I really can only offer an email here and there to my congressman right now. While I am going the biomedical route for my son, nothing has helped so profoundly that I can shout “eureka” from the rooftops to enlighten other parents to what we discovered. Even though I love ABA and its offshoots, my son is still struggling. And, my son is on the GFCF diet, but quite honestly, I’m not going to be writing any cookbooks–unless heating up gluten-free Dino Nuggets in the toxic microwave counts.
So what is my purpose in all of this? I believe as it unfolds, my voice will emerge with more clarity as it gets boisterously tangled with the messy spiritual side of walking through autism. That sounds so ethereal, but really it’s more earthy than that. It’s real life. It’s here and now. It’s not in a church building. It’s not waiting for the other side of Heaven to make everything okay. It’s not about getting a little lift from reading a daily devotion with your Wheaties. This is real, in-the-trenches Christianity. The kind that’s with you at the playground when your heart starts cracking. The kind that sustains you through a tantrum–yours or your child’s. The kind that kicks your butt out of the Valley of Doubt and Weeping for the fiftieth time. The kind that encourages another heart when yours is downtrodden. The variety that actually believes that God wants our bodies well. It’s not going to be safe. It’s not going to be pretty. But, I believe it will be worth it! You want to come on the ride with me?
Here some “real stuff” that has happened in the past seven weeks around here:
- When we thought our new state insurance costs would be $5,0o0 out of pocket max, they will be $8,000.
- Our son’s primary therapist moved away–we miss her.
- Josiah has regressed it seems–even fewer words, poor attention. It feels like he was better a year ago.
- Josiah has stopped sleeping through the night–I’m up with him 2-3 hours in the middle of the night, generally.
- His therapy center called us in for a parent meeting, concerned about increased sensory-seeking and inability to focus on his tasks, and they are wanting to go to alternative measures for communication like PECS and perhaps an augmentative speech device to hopefully help his speech along.
- We’re trying some new biomed stuff, including trying to fit in chiropractic appointments twice a week. More time, more money. Where are the results?
- We’re supposed to seek out additional speech therapy outside of his center. With both of us working full-time, I’m not sure when.
It all just feels so hard, right? Unlike other things, like New Years resolutions, you can’t quit. You also can’t escape or deny or numb. Sometimes you really want to. But you cannot go backward–you know too much. Where would you go anyway? You wake up every morning with this beautiful and sweet child before you, and you realize the weight of carrying your own life is light in comparison to carrying his. But there are more lives like his, and more families like yours, and that rends your heart too.
Desperate for the Destiny and Destination
There was a time that I thought autism came to shatter our dreams, but I’m becoming more convinced that it is moving us toward our destiny. Sickness is never good–and it is never from God. After hundreds of hours of study and combing through God’s Word, of that I am assured. But my life and this journey is not a mistake. My son’s life was not a mistake. God starts with us every day right where we are–using ALL of where we’ve been. These experiences will not go unused. Will we trust Him enough to lead us through? Will we have the fortitude to go the distance?
I’m afraid that up to this point in battling autism, I have not been able to find the “answers” like some people have in those things that I can control myself. I’m a classic “achiever” and “learner,” and this road has roughed me up pretty bad. If I can MAKE something happen, I will. If I can unearth the holy grail of autism research, I will Google my fingers bloody. If I feel like I’ve failed, I can take it personally and get profoundly frustrated.
Now, I’m desperate. But in a good way. Desperate presses through the crowd to touch the hem of Jesus’ garment. Desperate believes Jesus when he says your child will live, even though people reported that she has died. Desperate craves more of the Lord than “Jesus in a Box” that only pops out when I choose to wind up the handle. When I get desperate, I have seen women come into my life and encourage me beyond belief. When I get desperate, I’ve got to pay closer attention to my marriage. When I get desperate, I stop just hemming and hawing over the latest report on vaccines or the flavor-of-the-day autism cause/cure. I have to go to the Healer for my little Josiah. He’s all I’ve got.
Oh, all of you who are beaten down, broken and battered, are you ready to dream again with me?
When we walk in the valleys, we have a decision to make. Our pain can make us wither, or it can awaken our hearts to be passionately real. Our losses can destroy us, or they can help us grow stronger. Our actions can feed the devil’s victimization of our lives, or they can point us to the Word of God.
True dreamers will take their anger to the foot of the cross where they will find a heart big enough to hold their pain. They will begin to understand who God is and what He thinks about them.–Jill Austin, Dancing With Destiny