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.

Monday, August 3, 2015

books I read over the summer (June/July)

My entire life, well my entire reading life, which has been all of my life that I remember, I have spent many summer days reading. As a child I preferred to be with my books than outside in the heat (though I spent a fair amount of time riding bikes, playing kickball and kick-the-can in our cul-de-sac with the neighborhood kids). Becoming a mom means no longer having long summer days to leisurely read all day.  I did, however, manage to read a few good books this summer, and I am about to finish up a couple more. Here's what I read in June and July:

Still Alice by Lisa Genova - 
A professor at Harvard is diagnosed with early-onset Alzheimers.  I connected with the characters in this book, even though I don't have much in common with them. It was a beautiful and hard story, but also a quick read. After reading, I vented to The Hubs for about ten minutes about one character. Actually I am still ticked off at one character in the book. I would love to vent about him/her on here, but then I would need to post a spoiler alert. I know there is a movie based on the book, but I am not sure if I want to see it or not. Has anyone watched the movie?

Searching for Sunday: Loving, Leaving, and Finding the Church by Rachel Held Evans
Rachel and I are very different in our current theologies, but she asks many of the same questions in her book that I have asked or am asking. We just often arrive at different answers. Of the three books of hers I have read/attempted to read, this one was easier for me to stick with. I was frustrated with some of her conclusions and opinions, but I think I saw her more as a person rather than "that blogger that I no longer read," and that was refreshing. I still do not quite understand how her faith shifted so much, but I am trying. The book reminded me of the beauty and truth to be found in churches that don't look like mine, and as a multi-denominational gal, I appreciated that. 

Caught Up in a Story by Sarah Clarkson
This is a book about what books to read to your children. I have read a couple of books by Sarah's mother, Sally, but this is the first one I have read by Sarah. Caught Up in a Story was delightful and helpful. It made me sad about many of the wonderful stories (and experiences) I missed as a child, but it was encouraging and challenging to me as mother of what I want to provide for my own children's reading (and imaginative) experiences. I highly recommend this for parents wanting to know about what their children should read. It is more than a list.

The Living Page: Keeping Notebooks with Charlotte Mason by Laurie Bestvater
This has been one of the most helpful Charlotte Mason books I have read so far. It gave me many answers for some of the how-to's and how-does-it-look questions I have had. At some point, I will be purchasing this for my own library.

Anchored by Kayla Aimee
My mom sent this book to me, and a friend had offered to loan me her copy. It is about Kayla's experience as  NICU mom. Her daughter was born at twenty-six weeks, and she spent several months in the NICU. Kayla shares about her experiences and struggles, but there is also humor in this book. I found myself going from crying to laughing within the same chapter.  Though my boys were just in the NICU for seven weeks and two weeks, I related so much to her experience, not just as a NICU mom, but in my newer journey as a special needs mom.

Women of the Word by Jen Wilkin
I actually read this book in late spring, but somehow it didn't make the list in previous months.  A great, informative, but easy read on how to study the Bible.  If you don't know what to do or how to start actually digging into the Word for yourself, get this book. Much of it I knew from classes I took in college or other studies I have done, but I took a lot of notes from Jen's book. Also, it was nice to have a book for women without flowers or princess themes - instead it was content without fluff that some authors think appeal to women.  Even if you are a man, I would recommend this book to you for how to dig into the Bible. 

Favorite children's book of mine this summer:
Roxaboxen by Alice McLerran
A group of children use their imagination to build a town out of boxes, rocks, and other items.  I don't know how I haven't read this book before. It brought back happy, though different, memories of the games played in my own neighborhood growing up. I cried at the end of this story. Bubby wondered why. I couldn't explain. Read it and perhaps you will see why I cried.   Bonus: It takes place in Yuma, Arizona, where I lived for two years.


Books I started reading but had to return to the library before I finished: Living Well, Spending Less; Wearing God; and Undone: a story of making peace with an unexpected life

Sunday, August 2, 2015

living fully alive - the back to school edition

It's Sunday night, and I do not have the Sunday night blues.  Our first week of homeschooling for the new school year went well, and I am as ready as I think I can be for week number two.  I know homeschooling isn't for everybody, but I am loving what I am doing this year. I love the curriculum I have/am piecing together for both boys. I love using living books. Bubby is excited about learning history and geography this year. I am pleased with how well his first attempts at narrating (summarizing) have gone. Bugaboo is joining in for many parts of our day in addition to the part of the day set aside for his own learning and therapy homework. I am tired, but I am content.

The only hard part for Bubby and me is handwriting. I hate teaching it. He doesn't like doing it. Handwriting is over-rated. (There, I said it.) Also, there is glitter all over my house from Bugaboo's preschool art. He already has done more hands-on activities in five days at home than he did in two and a half months in his special education preschool last year. (Yep, I said that, too.) Even with the glitter that is still appearing in random places around the house, I say that last week was a wonderful week.

St. Irenaeus said, "The glory of God is man fully alive." I feel fully alive in my current roles.

I have friends who make beautiful cakes and cards and quilts. I have friends who run marathons and balance budgets for large companies.  I have friends who preach and teach and advise and heal.  I am amazed by all of their gifts, most of them which I do not possess.   Thankfully, August reminds me what my gifts are. It always has, and it hopefully always will.



I miss the regular classroom a little bit. Mostly I miss the interaction with other adults and the feeling of making a difference in the lives of students.  The other parts that I miss - the planning and organizing and teaching - I still get to do, and I get to be the one in charge of it, rather than an administrator, publishing company or government bureaucracy.  In the 21st century sometimes it is not admirable to say that one loves being a mom, especially that one loves being a homeschooling mom. But I love it. This isn't about mommy-wars. This is about what my calling is, and I firmly believe that this is my calling for this season in our family's life. It comes with sacrifice, just like any callings do. Yet, it doesn't feel like a hard sacrifice when I'm doing what I love.

Find what you love to do, what you are called to do in this season, and pursue it. Don't worry so much about what others think. Make the most of your gifts and live fully alive.




Happy Back to School season!!