Monday, September 17, 2012

my heart on my a rambly way.

I've been reminded tonight.

God has arrested my thoughts of saving my family, granting better health through my efforts at nutrition, cleansing, detoxing, etc, etc.

"For whoever wants to save his life will lose it, but whoever loses his life for me will find it." Matthew 16:25


I've not written much about him here. But my oldest boy is a constant struggle for me between the light and dark inside me. The struggle between the trust I know and have learned of God and the doubt I sometimes believe more than my trust at times.

He has autism.

I've never even written it out here, hoping that it would go away in time. I didn't know, still don't know at times how to view it or talk about it. How to share who he really is instead of "what he has." This diagnosis in our world shades most everything.

And I believe with all my heart that he is more than this diagnosis.

But sometimes, even I have to remind myself that autism is not the end of him.

This term, autism, is simply a way for the medical community to define a set of medical problems a person struggles with, just as any name for any disease or illness. It is a broad term, covering many aspects of delay in children. And there is no conclusive acknowledgement of what causes it, which is perhaps the most frustrating thing of all.

When he was first diagnosed, the doctors and specialists assured me that it was nothing I had done that "made him this way," that he was "born with it." Part of me is not ok with that statement, if only because how could they know if they don't know what causes it? My husband asked me at one point why I would torture myself with ways that I could've caused this in him...but I don't think I am. I just want answers. Mostly, I want answers so I can fix him.

That has been the dark side of my struggle. I want to "fix" him.

I wonder if other parents of children with delays think this. I feel awful about even admitting it, but there it is.

Then, I always feel as if God is prodding me to think deeper about it - this disease - and about His plan. I do not believe God gave my son autism, but I do believe that He will use it for good, somehow.

What I don't know is how my role fits in. I have been researching diet changes, naturopaths, therapists, school programs, etc. Diet has been a big thing for me lately, feeling like I am seeing changes in my boy from his diet modifications. Hopeful changes. So, if I stick to this plan of gluten-free or grain-free or everything-it-seems-to-be-at-times-free then my son will be healed and walk and talk and play like the "normal" kids and I won't feel so terribly fearful about his future and everything will be all right with our world.

And maybe that's exactly what is wrong with my thinking about this. I want everything to be all right with our world.

"For whoever wants to save his life will lose it, but whoever loses his life for me will find it." Matthew 16:25

But...isn't God in control of our world? Do I think He doesn't have a divine plan to either save us from this pain and disease or help us to walk through it? Am I willing to sacrifice my ideal of our lives day-to-day and trust?

No. Sometimes, if I'm honest, I don't think He does and I don't feel I can. But I am struggling to believe.

Why is it so hard with your kids to trust? I never knew how naive I was in my ability to trust God until I had to put someone else in His hands beside myself. Go ahead, God, I would say. Do whatever you want to me, and I will stick by you. But now I find myself saying, just, please, don't let bad things happen to my kids. They don't understand, they are so vulnerable, they are going to get hardened...

And maybe one of the gut-wrenching things for me to realize is that I still end up making it all about me. I am afraid to be seen as a failure with my kids. I am afraid they will blame me when they are messed up by the world.

I am trying to save my ideal of my life. My ideal of their/his life. How do I trust God enough to lay it down?

What a heavy post. I'm sorry to bring you down. This has been weighing on me, literally, for about 3 years now. How do I trust that God will "work all things together for good"? And yet, there is a part of me that honestly, truly believes that. And I am clinging hard to that hope.

What's hard is that my definition of good might not be God's definition. But I trust that He will open my eyes to see His goodness.

If you feel so led, I am asking for help. Please pray for my children, specifically my oldest son as he navigated kindergarten with his impairment. Pray that he will grow in social understanding and find joy in friendships. Pray also for Jon and I as we help him understand, parent his heart, and struggle with response to this disease even now. I believe God listens and hears our prayers. Pray that His good will will be done in our lives. I would really appreciate it.

1 comment:

Ab said...


My parent-heart hurts for you in the sad things... but I rejoice that you are trusting God.

May His peace be with you...