Tuesday, August 25, 2015

when I just sit down and write

I have so many half-posts written in my head these days, and a few quarter-posts in the drafts section of this blog. I want to write something different, something new, something that might make a difference, but at the end of each day I come back to my life and the stories it is giving me. I worry that by writing about autism or cerebral palsy or faith or even homeschooling  so much that people might be like, "Meh. This again." 

But this blog isn't about them. And in a way it isn't even about me. It is about the stories I have to tell, so I will keep telling them.

Both of the boys were NICU babies, and from day 1 we heard "The NICU is a roller coaster experience." And it was. And it is. For some the NICU was an even longer and more intense journey than what we had.  My roller coaster ride there lasted seven weeks and then two weeks, and then it was more or less over.

Living as a mom who is caring for a child with disabilities is very much that cliched roller coaster experience.

I'm struggling to understand why Bug was able to stand on stage and sing (well, dance around to) songs at the VBS performance night, but when it was music class performance night on the same stage with the same kids just a month later, he couldn't do it.  He melted down because his Wednesday night routine changed, and nothing I tried could fix it so he would go on stage - or even in the sanctuary.  We sat in the cry room (where he stopped crying and I started crying) and watched through the window as his friends and Bubby sang and did motions.

Two Sunday mornings ago Bugaboo finally made it through an entire church service. We celebrated, rewarded, and made a big deal about it. Last week he got loud before our pastor even really started in on the sermon.  It was a little disheartening, but I did not cry. Two steps forward, one step back, or so the saying goes.

This same child who struggles with church and messed-up routines, is sitting in on much of the schooling I do with his older brother this year.  Bug's favorite time to participate is what I call "binder time" in the morning. In a binder we have our motto (which he already knows most of - and it's lengthy), a hymn of the month, a patriotic song of the month (or in our case two because Bug requests both songs we have learned so far each day), catechism for Bubby (which Bug calls "questions), Bible reading, prayer (which every morning Bug prays, "Dear Jesus, Help us to watch VeggieTales today. In Jesus' name. Amen."), and poetry.  We have been reading one new Robert Louis Stevenson poem every day so far this school year, and now Bug requests his favorites by name, "Singing. Foreign Lands. A Good Play" He also can fill in the rhymes and some entire lines. I am amazed and baffled and humbled by this.

The highs of each day is when Bug does something beautifully different than what anyone would expect.  The hard parts are when he reacts to something differently than he should and I cannot discover a way to fix it or calm him.  There is so much in his little head and heart that we only get glimpses of right now, and so much of what we have to do feels so useless - the waiting and trying and waiting and guessing and waiting - all the time wondering if I am doing enough both for him and for Bubby. I replay my day in my head most nights thinking of time I wasted or mistakes I made, wishing I could let go of my fear of screwing up this parenting thing.

A couple of weeks ago a friend asked me if I struggle with God's love - with knowing God loves me. I answered her rather quickly, "No," because I don't really struggle with that. I know God loves me not because of anything I do or don't do but because He is God and I am His, and that is why He loves me.  He loved me before the foundation of the world, so I know that I cannot lose it.  I realize this confidence is a rare gift even for the Christian, and I am thankful for it.

But I also answered that while I don't struggle with God's love or with the idea of losing God's love, I do struggle with the why's. "Since God loves me, then why ________?" I struggle with that a lot more than I think I realized. Right now it's with the idea of healing. Time after time Jesus healed all sorts of people in the New Testament, and I believe He still heals today. Yet, my son still struggles to use his hands, he can't use stairs independently, he can't hold a conversation with people, and he doesn't engage the way a typical four and a half year old would.  Where is his healing? is the question I come back to.

I don't have a great answer for that one, and I certainly don't want a cookie-cutter response to the question. I know the theology of why God might not heal Bug the way I would like Him to. But I also know the theology of why God might heal Bug the way I would like Him to. So I'm trying to be realistic while at the same time having hope while at the same time clinging to the faith that will get me through no matter what God decides to do in our lives.

God is good and God loves me. God is good and God loves my kids. I come back to those truths to find my rest.


  1. Mama, I relate to so much of this. I think something I have learned is that issues in the brain are always going to be that roller coaster. We see this with our son, that some days he talks really well and he rolls with the changes, and other days he gets stopped up and can't keep moving. I've started to think of them as Strong Autism days. And that's when we just have to help him manage the best he can. Church for us has gotten much better lately because he gets a one on one adult for the service to help him do worksheets and listen to Bible stories. Keep doing what you're doing, even when it feels useless, you are helping your Bug and someday you will see the fruit!

    1. "Strong Autism Days" - good term. Thanks for the encouragement. May I ask how you were able to get a one-on-one adult for him during church?

  2. I always appreciate your transparency, Amanda, and ache with you. I may have shared this scripture before, and I hope you don't think of it as a "bandaid", but it's one I had to take as a challenge during my times with Norm's illness: Romans 12:12 - Be joyful in hope (this is the phrase I struggled with the most...), patient in affliction (yep, got that!), faithful in prayer (always a work in progress!). Blessings to you...

    1. Great verse! Thanks for sharing it. Not bandaid at all. :)

  3. I'm glad you're writing. Thanks for your insight. The Binder Time sounds great!

    1. Thanks!! I do enjoy binder time. Calendar time, not so much. ;)


Thanks for stopping by and sharing your thoughts with me.