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. 

Thursday, June 4, 2015

To Bubby, age six

Dear Bubby,

You turned six a few days ago, and though you were sick and running a fever we managed to celebrate at home a bit with your requested Chick-fil-a breakfast biscuit, Mexican food take-out, and fancy cupcakes that had a mini-Oreo on top. Every present was your favorite this year - a year filled with Legos and Ninja Turtles and light sabers, which you still call "light savers." Your list of words that you pronounce incorrectly grew shorter this year, so I only correct the light saber error because I don't want anyone to make fun of you. But honestly, I think it is adorable. That and the fact that you still say "aminals" from time to time instead of animals and "Pichotle" instead of "Chipotle." It seems there "baby words" are all that are left, and there's a part of me that regrets not recording every other word you have mispronounced over the years.

The fact that you are six now, Bubby, is a little bit hard for your mama. For one thing, you call me Mom now almost all of the time. And I came to realize about a month ago that your time with us, your mom and dad, is 33% over. You are 1/3 of your way to eighteen, to adulthood. It is going much faster than I ever thought it would. This saddens me, but it is also a joy to watch you grow.

You are reading so well now. Even in the last month you pick up (an age appropriate) book and read it cold with little to no assistance. I love listening to you read real books. I love how you laugh at classics like Frog and Toad, as well as the newer Piggie and Elephant books. We survived our first year of homeschooling together, and though there were tears (from both of us at times), it helped me to learn more about your strengths and weaknesses as well as mine.

You started piano this year, and it has been fun to hear you practice the last couple of weeks - now that lessons are over for the summer - and you are practicing because you want to. You tried basketball for the first time this year, and it was hard for you as one of the youngest and littlest on the team, but you stuck with it. You continued playing soccer, and it was fun to see you on the older end of your spring team, knowing what to do and making some goals.  You memorized all your verses for Awana this year, but more important than that, I see God working on your heart by the questions you ask about Him and the tenderheartedness I see displayed in your life.

You continue to be an excellent big brother. I know it is hard, but you handle our family's unique dynamics with grace and strength. You are patient and kind, and when I see you reading to Bug or wrestling with him or even working on his speech therapy homework with him, I am humbled and amazed by your kindness.

You are testing the boundaries. You remind me so much of myself with the words and attitudes that come out of your heart and mouth at times, and I pray you will learn how to use these things as assets rather than hindrances. You still have an innocence about you that most kids even your age lack these days, and I am thankful for that. I am thankful that you create rocketships out of cardboard boxes and pirate ship cannons out of papertowel rolls. You are kind to babies and toddlers. Your questions and observations are non-stop.

I pray that your year of being six would be blessed with fun and excitement, with new learning and new chances to show compassion. I pray that your heart would be open to Jesus and that your eyes would be open to those around you.  Happy birthday!


Wednesday, May 20, 2015

what most people don't tell you about the church

Tonight was the end of our Awana year at church.  I feel much of the same gratitude for my church now as I did last year. (You can read about that here.) This week has been hard, today has been hard, but I have peace and joy as I reflect upon tonight's event.

Bug moved up to Cubbies this year, and I worked in his classroom as secretary and to assist him. It was a significant transition for him. He was asked to memorize verses, listen with the big kids during opening ceremony, and participate in game time in addition to the story, snack and song component similar to last year.  From my mom/teacher perspective, I see the gap getting bigger for my son, but I also see people standing in the gap to help.

I see his other teachers cheering him along as we run the circle during games. I notice one student who is always patient with him as she waits for him during snack or coloring clean-up. I hear another child always say hello to him every week. I witness several Cubbies letting Bug get the closer beanbag during a game and the game directors finding ways to give my son success. I observe as teachers listen closely to decipher his words during Bible verse time. I see the excitement in Bugaboo's eyes when the Cubbie Bear puppet comes out each week. The teachers and students in the room are gracious to us when I have to take him out of class due to a meltdown.

It has been a hard year in some ways on Wednesday nights. Every week I see his strengths and weaknesses right alongside the strengths and weaknesses of his peers. Each week I am learning what works well for Bugaboo and what his limitations are. Even on difficult nights,  I still can't imagine walking through this process elsewhere. I said it last year, and I will say it again, For every disillusionment I have had with "the Church," there are beautiful moments and faithful and kind people that keep pointing me to Jesus.  

(photo from September)

My church models the servanthood of Jesus. I hate asking for help, but I am so thankful for the people who help us week after week. These people take pictures of the awards ceremony for me, sit with Bubby when I have to take Bug into the hallway. They offer to sit with Bugaboo so I can go back in to service. They help Bug on and off of the stage during a children's program/awards night. They pray with me if they find me crying in the bathroom,  and they always, always, always say hello to us when they see us. This is the picture of the Church. This is the picture of family.

Monday, May 18, 2015

some thoughts on kindness (because my heart broke last week)

"Stop talking like that. Why do you talk like THAT? I can't understand him. Ugh."

"I don't want to sit next to HIM. He'll get DROOL all over me!"

"Haha. You are slow. You are last. You are the slowest!"

These are things I have heard other children - ages four to six - say to Bugaboo in the last month.  Seeing them in print is just as hard now as it was hearing them the first time. Children are mean.

I expected to encounter meanness in the years ahead, but I honestly thought we had a little more time. We don't. With Bug's disabilities we can't be sure if he understands what is being said about him or to him, but does that really matter? The words and the attitudes behind the words are heartbreaking.

Parents, please teach your children to be kind. Niceness isn't enough. "If you can't say something nice don't say anything at all" is a starting place, but it doesn't cut it. Anyone can keep quiet. The world needs kindness, it needs compassion. My child needs a true friend, even if he doesn't realize it yet, even if your child already has plenty of friends.

Parents, you can't just tell your children to be kind, you must model it. Stop making jokes about the short bus. Stop using the r-word or any other word that puts someone down. Be a friend to someone who might not be the most popular woman at church, the prettiest one at the gym, or the funniest one in the office. Don't gossip. Think outside of your usual crew for playdates and zoo trips. Don't assume that a child who is different from yours won't like some of the same things.

Parents, have difficult conversations with your children about differences and disabilities.  Read age appropriate books about autism, cerebral palsy, Down Syndrome, food allergies,  visual impairments, or any other "label" you can think of.  Talk about why some children drool, why some children use a wheelchair, why some children say the same phrase over and over again. Help your child to not be afraid of those who are different. Help your child to realize he/she isn't any better than any other child. Kindly ask questions about my child.

Parents, expect your children to be kind. Don't tolerate your child being a "mean girl" (or boy). Think of how you might feel if you were a parent of a special needs child because some day you might be. Nothing in life is a guarantee.  Don't parent from the couch. Actually listen to what your children are saying on the playground, at a birthday party, at church. Some of it may shock you.

No one, child or adult, likes to be mocked. No one likes to be intentionally left out. My child may or may not understand that someone is mocking him or leaving him out, but I understand. And it is heartbreaking.

*(I hesitated to blog about this for a lot of reasons. First of all, my children are not perfect. There have been things they have done that have shocked or embarrassed me. They are children. Secondly, I am not perfect at this. I look back over my life at things I have said, at situations I ignored instead of confronting, and at people I didn't befriend because it wasn't convenient, and I feel great sorrow over this. But I think if my parents had known, my attitude would have been dealt with, and hopefully I would have made better choices. Do not read this and think "That isn't my child," because there is a good chance it is or it will be someday. Instead, please think, "I will teach and model kindness to and for and toward my child. I will have the hard conversations ... often.")