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!!

Tuesday, July 28, 2015


I don't often remember my dreams, but the other night I had two vivid ones.  In the first, I was moving across campus of my alma mater to a northside dorm. I was hauling my pillow and other things down the sidewalk. While doing this I was bit by a raccoon, which refused to let go.  I was not hurt or scared by this in my dream, but rather annoyed.  Bizarre.

The other dream was not bizarre, rather, it was beautiful.

I was outside somewhere with Bug and he was jumping. He was effortlessly jumping on the sidewalk, with feet clearly above the ground in perfect preschooler jumping form. He was smiling and having a wonderful time. In my dream I remember thinking, "He is jumping!" amazed at this new skill, and then simultaneously in my dream I was thinking this was how it always had been.  I woke up in the morning vaguely remembering the jumping dream, but vividly remembering that stupid raccoon.

But then I was working with Bugaboo on the therapy ball and the stepstool, and my dream came rushing back to me.My child who cannot jump, even though he's been working on it for such a long time, had been delighted to jump in my dream.  He was beautiful and free and unhindered by cerebral palsy and autism.

I do not know what to do with that dream which on one hand brought me such joy, but now in the daylight makes me weep.  Someday Bug will run and jump and play in all the ways we were designed to because someday we will live in a land of no disease or sadness or sin. And it will be glorious.

Saturday, July 18, 2015

Our life in smartphone pictures (weeks 27 -?)

This is how the MacB family spent their summer vacation (via smartphone pictures):

We went to Silver Dollar City and learned that I cannot handle spinning rides at all any more.  Here is our last family teacup ride selfie.

At Dream Night at the zoo, the boys got to meet some StarWars characters.  They also were able to pet some creepy animals, and I managed to help Bugaboo pet things that I normally would avoid.

The boys went to Illinois for a few days, so The Hubs and I actually got a couple of date nights in.

Here's Bubby and Bugaboo enjoying the best ice cream ever - which happens to be in my hometown.

We discovered the awesomeness that is corn on the cob grilled with olive oil, salt and pepper.

Bubby and I took turns being sick for a big part of the month of July. It also rained quite a bit, so we had to find indoor activities.  Here is one of them:

Our third year going to our local 4th of July parade.

Took the boys roller skating with our co-op. It was Bubby's second time (though it has been a few years) and Bug's first time.  Bug did not enjoy it at all, but we tried! Bubby started getting the hang of it, especially on the carpeted areas.

 Bubby went to a soccer camp and a basketball camp here in town. At soccer camp he earned the "Most Christlike" award. I'm not sure if it is Christlike for me to be proud of him for that, but I hope it is.

The boys went to two VBS programs this summer. It was Bug's first time to go to one that wasn't at our church, and it was also his first time being out of the nursery VBS program at our church. He did well at both programs, and I am so thankful for the volunteers who made it possible for him to attend. I am also worn out from teaching third and fourth graders this week. Hard to believe I used to teach fourth graders all day every day.

Bubby starts first grade in a little over a week. So even though there is still a month left of summer, we are getting started with our modified year-round schedule. Looking forward to the weeks ahead of us!

Monday, July 13, 2015

Some thoughts on my word for 2015 - hope

My word for 2015 is hope. I haven't written much about this word because I haven't been sure why it is my word this year. Am I going to be given renewed hope? Am I supposed to look for hope? Keep hoping? And for what am I allowed to hope?

Hope is a scary thing for me because many things for which I have hoped have not happened. People change, diagnosis remain unchanged, situations disappoint, and I am left frustrated and confused. Yet my word for the year is hope.

It stands out these days when I read it in a verse, hear it in a song, or notice it as a theme. But I don't feel like I personally grasp it. Some days hope feels like sand, slipping between my fingers as I try to hold onto it.

A number of years ago, a Christian counselor told me to "fake it till you make it." It was some of the worst advice I've ever received. What happens when you fake it and you don't make it? What happens when you try so hard to be what people need you to be and it destroys your heart and soul in the process? Isn't honestly the best policy? Wouldn't it be less destructive to say, I cannot be what you want me to be at this time or maybe ever, and deal with the consequences of that mess rather than realize months later that you were wrong. That you can't handle the emotional and spiritual pain of a situation, so you will not be faking anything, even to keep the peace (which in itself is fake peace)? The fake it till you make it philosophy felt hopeless because I never ended up making it.

When it rains or it shines on this pillow of mine
I will lift up my head to the sky
So I have chance to see where my hope has come from
Know there's nothing that I can't abide

When nothing satisfies you
When nothing satisfies you
When nothing satisfies you
Hold my hand
(Jennifer Knapp)

Somewhere in the Bible it says hope does not disappoint. I've been pretty disappointed by hoping in my life. Hoping for it not to be a miscarriage.  Hoping for my dad not to leave. Hoping for the diagnosis to be wrong. Hoping for people to do the right thing. Hoping to not be erased and replaced. All that hoping has only disappointed me.

But tonight I realized that's not the Hope that does not disappoint. People disappoint. Bodies disappoint. Circumstances disappoint. Relationships disappoint. But Hope does not disappoint because my hope is not about the temporary (and still very painful) situations. The hope that does not disappoint is the "hope of salvation." Romans 5 goes on to say, "And this hope will not lead to disappointment. For we know how dearly God loves us, because He has given us the Holy Spirit to fill our hearts with His love. When we were utterly helpless, Christ came at just the right time and died for us sinners." (v.5-7 NLT)

Without Jesus, my dad will never change. Nothing anyone can do will turn him into the person he should be. It is hopeless, and no amount of pretending can make it better. I can't make people want me to be in their family, and that feels pretty hopeless if I dwell on that.

But my hope isn't in a relationship with my dad. My identity isn't found in his acceptance or rejection of me as his child. There is hope for a hopeless me, and it isn't in circumstances but in salvation. I can have hope this year because I have been accepted by the author of Hope.

Sunday, June 7, 2015

What I Read in May

We are a week into June, and I'm just now blogging about what I read in May. I am also using our iPad to type this, so there will probably be typos. Consider yourself warned.

Consider this : Charlotte Mason and the classical tradition by Karen Glass. -  I have beenreading about   Charlotte Mason and her methods for over a year now, perhaps close to two years. I was hoping for something more from this book. I found it a bit dry, although if you are looking to understand why the CM method is classical education, this book would be helpful. A lot of interesting points, but it won't be one I purchase. It did solidify my belief that the CM method is one of the best educational philosophies out there - when implemented correctly. 

The mingling of souls : God's design for love, marriage, sex & redemption by Matt Chandler with Jared C. Wilson.  I would recommend this book to high schoolers, college students, and those who are single, dating or engaged. Half of the book is geared toward the pre-marriage phase. Chandler refers to Tommy Nelson's The Book of Romance quite a bit.  I read that one in college and it is very good. I liked Chandler's book but found it very similar to Nelson's, if memory is serving me well. I like Chandler's preaching, so perhaps I was hoping for more. If you are married and can on,y read one marriage book this year, read Francjs Chan's instead. But if you have time for two, this one is a pretty good one. 

A day no pigs would die by Robert Newton Peck..  - I'm trying to read some children's lit that I haven't before. This book was well written, but depressing. It was on a must-read list from a source I trust, but it was just so-so in my opinion. It won't be on Bubby's required reading list in his upper elementary years. 

Scary Close - Donald Miller - I think I actually finished this in April and forgot to write about it. I read Miller's Blue Like Jazz like everyone lead about a decade ago, but if don't think I've rad anything else by him. His theology is different than mine, but some of his thoughts on boundaries and people who have hurt you made a lot of sense to me. This isn't a book that was very memorable to me overall though. 

The Gospel-Centered Woman by Wendy Alsup - A friend let me borrow this book as I am wrestling with some theological issues and questions regarding women. Honestly, I thought I didn't want to read this book (because I'm reading another one of similar topics by a different author that I want to throw across the room half of the time because she doesn't seem to wrestle with the questions I have.) But this book was so good and not what i expected. First of all it wasn't pink. (Finally a Christian woman's book without pink or princess themes!) This book is about  understanding my identity because of the gospel. I even appreciated her thoughts on the Proverbs 31 woman (and any discussion of that woman usually puts me in fight or flight mode).  Alsup is a complementarian, but even if you are not there is a lot more to this book than that issue. One of my favorite quotes from her book, "Godliness with contentment does not mean pulling yourself up from your bootstraps. If the phrase fills you euthanized guilt, you are missing the entire point. The gospel does not obligate you to contentment. It equips you for contentment. That battle with your sin, the temptation to gossip, anger with your children, church conflict, failing marriages, suffering, death- the gospel equips you to do battle with sin and suffering with the very same power that raised Christ from the dead."

I need some great fiction for the summer. I have a list of suggestions I refer to when I remember, but I'm always looking for more ideas.