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.")

Thursday, May 14, 2015

Our life in (smartphone) pictures weeks 23-26

I have decided to stop calling these posts "our week in (smartphone) pictures" since posting this way once a week just doesn't happen.  Instead it is now titled "our life in (smartphone) pictures," which is basically me photo-dumping the pictures that highlight the little and big moments whenever I get around to it. Here is a look at the last month or so at our house:

A fun Friday afternoon at the park. This is one of my favorite pictures ever. I only wish I had brought my real camera. But the joy on Bug's face... love it!


 A couple of times a month we get to do a gymnastics class with our co-op. It is geared towards children with a variety of special needs. This is Bugaboo's determined face last month. We went again today, and he had so much fun. He even let the coach roll him, which is one of our OT and PT goals. Today's class kicked MY butt as I was running and lifting and assisting Bug. Bubby got put in the big kid group today and was assisted trying out the rings for the first time. I wish I would have been able to get a shot of that.

Bug has graduated to a big boy carseat in one of our vehicles. We were seeing if it would work before we moved him up in both cars. It is working, so we will completely transition him soon.

Bubby's newest thing to do is to "create" multiple paper projects out of notebook paper, glue or tape, scissors, and sometimes a pen or marker. He has made pirate ship projects taped up all around his bed (sail, mast, crow's nest, cannon) and some other projects I cannot remember but find all over the house.  So far no hair has been cut. 


A local church does a spring soccer league. This is our second year participating, and we love it. Great coaches. Bubby learned a lot and really improved this season. He wasn't quite as timid going after the ball, and his coordination is improving. This is the first season he has scored some goals, and I think he started really understanding the sport - as much as a five year old will!

Recently while playing in the backyard, Bug became interested in Bubby's old whiffle ball set. He even let me hold his hands to assist him hitting the ball over and over again. Since he HATES to have his hands touched like that, this was a huge gain. 

Bubby had a procedure on his ear to fix damage left by a tube. He was quite nervous about it as he is now old enough to understand some things. The coloring book the doctor's office gave him which was meant to be a comfort actually freaked him out because this boy asks a lot of questions. But he survived, and he now tells everyone how brave he was.

Kindergarten ended the same way it began. With a fancy muffin from a local coffee place. I still can't believe he is done with kindergarten. His reading really took off this year, and we had fun once I figured out what was actually important for kindergarten. (Love learning, read good books together, play outside, have lots of art supplies to create things.)

Bug gets to have three months of pool therapy for OT. We love our OT, so we were thrilled when a spot opened up.  Bug loved week one but he wasn't as into it for week two, so please pray that the next several sessions go well.

I took Bubby on a mommy-son date to go see a local production of middle schoolers and high schoolers performing Fiddler. I am still singing the songs, of course.

Happy Spring!

Tuesday, May 12, 2015

what parenting keeps teaching me about grace

On Mother's Day night I did not want to read the next chapter at bedtime. And so I didn't. This may not seem like a big deal, but we have a routine. Bible story, prayer, chapter from a book. But it was Mother's Day, and I just wanted the night off from that last step of the evening. The strange thing is, Bug, who loves his routine, handled it better than Bubby. That "your the best mommy" compliment i had heard all day...vanished at eight o'clock.

I felt a little guilty, and then I didn't feel a little guilty because it was my day. Then I felt guilty that I didn't feel guilty until The Hubs told me to stop feeling guilty.

The next morning, Bubby was up and all was forgiven. Not a word was said about the missed story. The day's events went on as usual, until at one point my oldest realized we didn't go to an extra activity that was on our calendar. It wasn't possible for a few reasons, and honestly, I didn't think Bubby even really knew about the event. But a few hours after the time of the event, he asked me when it was, and I had to tell him we missed it. He handled the disappointment well, probably better than I would have if the situation was reversed.

But then last night I heard tossing and turning in his bed at about nine. I thought he was having a bad dream, but he was still awake. Bubby was tossing about in anger and sadness about missing our activity. We sat on the couch, and I acknowledged his sadness. I apologized. He easily accepted my apology and went back to bed. Once again, I felt like I had failed him.

Each day there are moments when I wonder how much I am screwing up. There are things I know that I do well in mothering, but it's these little things, often the things that are difficult to avoid, that fill me with fear. I don't worry about not being my kids' friend, but I do worry about disappointing them. At the end of the day I don't spend time remembering the pictures we painted together, the bubbles I blew, the bike riding I supervised, or the books I read. I remember instead the fact that I was cranky when someone didn't hold my hand in the parking lot. Or that I put them to bed twenty minutes early because I just craved a little bit of quiet. I focus on the one thing (or two or three things) that I didn't get right that day and beat myself up over it instead of looking at the whole picture. I am a perfectionist in many areas of my life.  However, perfectionism has no place in parenting.

I need that tattooed on my arm. Perfectionism has no place in parenting. It will only lead to frustration, disappointment, or worse. I am called to do the best I can with what I have been given, acknowledge and apologize for my mistakes, and leave the rest in God's hands. That last part is where I struggle. I want to get it right. I don't want to need grace as much as I do. I don't want my parenting to need grace as much as it does. 

But when I stop acknowledging my need for grace in all that I do, I inadvertently stop acknowledging my need for God in all that I do. My children don't need a perfect parent, but they do need a Savior, and I am not Him. When I let go of my pride and ask for grace, it will point them to Him.


My children are the best at extending grace. They really are. I sincerely ask for forgiveness, and they extend it. Each morning this week Bubby hasn't remembered the sadness from the night before. He doesn't hold it over my head that he didn't get to do what he wanted. Each morning he is just ready to continue being my son, not even contemplating that something had the potential to change between us. He gives and receives love so freely.

Grace baffles me. I am thankful for it, but I don't always understand how it is possible. But then each morning I see two little boys in Ninja Turtle and puppy-dog pajamas, and I get a glimpse of what grace is and how it works.


Tuesday, May 5, 2015

we need each other

In almost every season of life, I have been blessed with caring and quality friends. This season I am seeing yet again what a gift good friends are.

Bug had an episode during Bubby's spring performance last night. I was there as a solo-parent because The Hubs had to work. At church if there is an issue, I can take him out to the foyer or the cry room. But I couldn't get up in the middle of Bubby singing, "I've Got The Joy, Joy, Joy, Joy Down In My Heart" because then he wouldn't have an family member in the audience watching him.  And so I tried every thing I could to get Bugaboo to quiet down, but he wouldn't. Finally Bubby's brief portion of the show ended and he came back to sit with me.

My kind friend in the row ahead of me assured me the noise wasn't a big deal. Her compassion made me cry more. (Did I mention at one point I couldn't stop the tears from coming out of my eyes in a room full of people? Agh. I'm crying all of the time this year.) We ducked out of the show early, which I hate to do because I think it is rude to just stay for my child's section, but I didn't have another option. Bug, of course settled down as soon as we got outside near the car. I softly cried most of the way home for a myriad of reasons. There are parts of life right now that are incredibly lonely. There are things that happen that feel like we took two steps forward only to take one (HUGE) step back.

When I got home I texted a far-away friend who I knew would get it. I didn't need to explain nor need her to fix anything. I just said what happened and she understood and that was enough. That was a blessing.  Later that night another (newer) friend who was there texted me to check on me, and the first friend sent me a message. I get emotional just thinking about it because I hate being seen as weak or needy or different. Yet I am also crying becauseI am also so glad that they saw me and had compassion (which is different than pity) and reached out to a very embarrassed me.

Almost everything that is going on in my little world lately reminds me how we need each other.  We need encouragement and we need to encourage. We need prayers and we need to pray. We need a break and we need to help give others a break.We need to celebrate our loved ones' milestones and the victories and we need to celebrate others' victories. We shouldn't be ashamed of those needs, even if our situations are different.

My friends didn't have to reach out, but they did.And at the very end of the night last night I didn't feel quite as alone.

Saturday, May 2, 2015

What I Read in April

I did not read as much as I wanted to in April. And the three books I read I don't know that I even recommend that much, although they were decent reads, just not anything that is going to stick with me for months and years to come. I did spend a few evenings watching mindless programs on Netflix because we were recently gifted Netflix. This may be bad for my love of reading. The three books I completely finished were:

  • Faith Unraveled by Rachel Held Evans - A long time ago I read Rachel's blog. I don't any more for a few reasons (unless someone shares a link and I find that it sounds interesting), but I read this book which was actually her first (it used to be called Evolving in Monkeytown). She asks a lot of the same questions as I have (and still do) about theology and faith and doctrine, but on several issues we differ - or at least I think we do. I like her questions, but I wish I could understand more on how she ended up on the more liberal end of theology than I have. I found myself frustrated during part of this book, but encouraged or understood by other parts, but overall I found it just a so-so read. (Sorry to all of my RHE fan friends.)
  • Before I Go by Colleen Oakley - I don't remember who recommended this novel to me, and I found it to also be a so-so read. I didn't like the beginning or the last ten-twenty percent of the book. I liked most of the storyline, but I only sort of liked the characters. I did get emotional during parts of the story, like the mother-daughter aspects and the tension of being married during stressful medical conditions, and this was a quick read for me. There are better novels out there to read, in my humble opinion, but I don't regret reading this. (Obviously.. I finished it.)
  • I am a Church Member by Thom Rainer - Extremely short book and to the point of what it really means to be a church member. Someone at our church bought one copy for every member's household. The focus was on the different attitudes and commitments one should make to a local church if he/she is a believer in Jesus. There were some good things of which to be reminded of, but the writing wasn't profound or beautiful. However, this would be a good book to launch some meaningful discussion with a group of friends/small group.



I have two additional library books I am currently reading that I hope to recommend next month as well as a few more on the "to be read" list.

Wednesday, April 29, 2015

an April update of sorts -

April has been a quiet month for me and a somewhat emotional one.

I am pretty sure I spent some time grieving Bugaboo's diagnosis.  I hear this is normal. I don't know that I have gone through the four stages, but I have had some sad days.

The Hubs got into the nurse practitioner program, so starting in June he is a full time student again for just 5 more semesters. I am overwhelmed by all of this. (He knows. We have had many discussions on the topic.) The decisions we are making on funding this schooling are at a waiting point right now - waiting on hearing back about scholarships and grants and loans - and figuring out what I can do to still stay home with the boys yet earn some income.

Long term the NP direction has been what we knew we were wanting to do, and it is what makes the most sense long term financially (and career satisfaction wise) for us. Short-term every option causes me to have anxiety, including the unreasonable option of not doing the NP program. All of that to say, pray for wisdom and discernment for us. Pray for open doors and shut doors and insight to know the difference and peace. I really need some peace about all of this.

On top of those two life stressors, right before Easter I got a letter from my dad. And when I contacted him as he asked and gave him a chance to do the right thing, it was business as usual with him. Nothing has changed in the last year in a half, in the last three years. Nothing has changed in the last twenty-plus years. The conversations with him took an emotional toll on me for a few weeks. I don't write this out of anger or hatred, but just sadness. How someone can walk away from their daughter time and time again is beyond my comprehension.

The Hubs told me, before I contacted my dad, that letter isn't worth toilet paper. But I still reached out with my speck of hope. And when I reached out, my dad said he still needed a few more days. But he still hasn't had the conversations he has needed to have.

So I have shut that door. At first I worried that it was not a very Christian thing to do, to shut that door, but I realize I am not slamming the door, I am not locking the door. I am shutting it and walking away because he knows what needs to be done to open the door.  I keep coming back to the verse that says "Don't cast your pearls before swine." My heart can't be trampled on again. It has to be guarded. That in itself is a heartbreaking thought - to have to guard your heart from a parent.

Of all the words to have for the year... my word for the year is hope. I haven't really written about it yet. A lot of things in my life feel hopeless. Many situations feel hopeless, too. But in these situations I am slowly coming to realize my hope isn't in a thing or situation or a relationship or for someone to do the right thing. 1 Timothy 1:1 calls Jesus "Christ Jesus our hope..." and I'm realizing that is what my hope is. That is who my hope is in. Not just for when I die, but of the day to day, for the difficult and the mundane.  Pray for me as I learn to rest in the hope that He is.

It has been a good week though. The weather has been wonderful. Bug has made some huge gross motor skill gains lately as well as slow and steady progress in speech (please pray for his fine motor skills to progress - we seem to be at a standstill). Bubby's reading is fun to listen to these days, and almost daily he asks really good questions. I get to be with my kids every day, and while it can be exhausting at times, I love what we do. I'm sitting here on a Wednesday night after all of our activities thinking, "This was a really good day. This has been a really good week." The simplicity of routine and sunshine and reading books and singing songs is just what my heart needed.