Archives for posts with tag: sixth grade

img_8807Well, we are into 2019 and we haven’t yet written our summary of 2018. December flew by in a blur of Graham’s birthday, taekwondo, work, cub scouts, church, holidays and school. Our Christmas tree is still up for a few more days so I figure I’m good to write this.

2018 was the year:

  • We took a spring break vacation to St. Louis. The arch visitor center was under construction and I very much feared we might never find the entrance! And then when we did Graham decided there was no way he was going to go up that high. Luckily we were able to talk him into it.
  • Graham completed kindergarten and declared that he would have his very first summer vacation (because up until now he’d always had to be at daycare year round).
  • Grace completed fifth grade leaving behind a group of women in her special needs classroom who’d been there for her since kindergarten. She seems to have acclimated to middle school relatively easily thanks to spending some time there over the summer and her new special education teacher spending the time to get to know her and make sure everything was ready.
  • Kevin headed to Minnesota for an APO function and thoroughly enjoyed time with his friends and a road trip without any interruptions to stop for a bathroom or change out a movie. He listened to Bruce Springsteen all the way.
  • I invested a lot of time at work in a project that’s been happening off and on for 10ish years. I’m happy to report that the Iowa Department of Public Health is officially an accredited state health department. As the pressure on government mounts, I find myself in awe of the work that we all show up to do day after day.
  • Grace got a new wheelchair. It tilts and reclines. Functions we would never have guessed we would need. Grace picked the color “Sugarplum purple”. Of course, it sparkles and of her love of ballet seems to shine through in the name of her color choice.
  • We became the proud (but anxious) owners of a wheelchair van. The cost had always been a reason to wait…we were getting by. But Grace’s new wheelchair is much heavier than her last, and Grace hasn’t stopped growing! The wheelchair van has brought with it new challenges but also new opportunities.
  • We took the new wheelchair van and new topper (because there’s little room to pack in a wheelchair van to South Dakota). We saw the Badlands, Mount Rushmore, Crazy Horse, took a steam engine powered train ride to a small town where we panned for gold and took old time pictures, and ultimately made our way to Devil’s Tower in Wyoming because it was “so close.” It’s amazing to be able to get out in world with Grace. Not everything is handicapped accessible but we push the boundaries and I imagine as we grow more confident we’ll push them even more.
  • Kevin and I continue to serve on the Dance Without Limits Board. Our Dance Without Limits family continues to grow and the ballerinas and ballet engineer who have helped Grace over the years continue to amaze us.
  • Graham became a Tiger Cub. In his first few weeks he was in a parade and helped with a flag presentation at the Johnston High School homecoming game.   What a way to begin!
  • Grace stayed relatively healthy although there have been various concerns that have popped up through the year. Her sodium level is too low. Her urine grew some strange bacteria-twice! She had a pressure sore we couldn’t get to heal. Her seizures are changing…which is good according to the doctor (we are going with that for now).   She also outgrew the braces she wears on her legs in four months; usually braces last 9 – 12 months.
  • I have been listening to musicals on repeat…Hamilton, Waitress, and The Greatest Showman were the soundtrack of my year.
  • Kevin began collecting stickers of places we’ve been to stick on the topper as a badge of honor. His wanderlust finally getting a chance shine.

That seems like enough to get you a taste of our year. We look forward to the year ahead. Kevin has multiple summer vacations planned, we’ll have to pick one.   Graham is expressing interest not only in taekwondo but also in basketball, and he’s hinted about baseball. I’m hoping to talk him into show choir camp this summer. Grace will continue to dance and play baseball and I find myself already preparing for her 13th birthday at the end of the month. I can’t help but wonder what her version of teenager years will look like. I’m going to try and read more books and actually print out more of the pictures I take.

Thank you for looking in on our 2018. We wish you all a Happy 2019!

Joy

 

 

 

 

 

 

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Romans 12:9

On Wednesday nights I take Grace to church. She participates in the jr. high ministry program. (Seriously…jr. high ministry…hardly seems possible).

We were there last week. Grace and I were in the front row. We were with the other kids in her special needs class and all the 6th graders.   It was “Ask the Pastor” night. We’ve been talking about the Bible and the week before kids were asked to submit questions that they had for the pastors to answer. The two pastors walked out with what looked to be a pretty substantial stack of questions. In the midst of answering questions about why there are no dinosaurs in the Bible, why God made cancer, why it’s important to go to church, how long it takes God to forgive, and where God came from, the kids in Grace’s special needs class were all over the place. One girl was up out of her seat multiple times. I could hear the volunteer behind me encouraging the boy next to him to stay seated and quiet. One volunteer jumped from kid to kid helping where she was needed. The sign language interpreter just kept signing. We were disruptive.  I kept waiting for someone to walk one of the kids out of the sanctuary.  I watched for glaring looks or raised eyebrows to come from the pastors answering those 6th grader questions – but none of that happened.  Our class was exactly who we are. During communion, Grace added to the disruption in her own way.  Pulling away from me at times to walk towards the band as they played, the pull of the guitar, the lights, and the patterns behind the power point slide showing the lyrics all drawing her away from our seats.

Frankly, it felt unreal and I continued to wait for the shoe to drop. Would our class leave early? Was there an alternate route for Grace’s wheelchair if I had to get out of there quickly?   I panicked a bit when I realized there wasn’t. We were blocked in.  We would have to leave through the crowd and out the main doors. We were part of the group for better or for worse. But my worrying was for nothing.   We stayed and continued to just be us. We were there the whole time and then after a prayer made our way to our classroom for our own lesson.

I told Kevin about it when we got home. I still think about it. It was this glimpse of how all are welcome…eerily accompanied by the pastors answering questions that pointed to everyone being loved and that everyone has a place and a purpose.

The first memory verse of Grace’s junior high ministry years is from Romans 12:9. It starts like this…”Don’t just pretend to love others. Really love them.”

That really uncomfortable (for me) 35 minutes felt like real love. Real love that I can’t explain.

I have so many questions about disabilities and the church. It’s one of those areas that Grace has pushed us into just because she’s Grace. Just like learning how to give a shot or replace a g-tube it’s a competency area I gave no thought to prior to Grace’s diagnosis. But once you learn something new you can’t help but see it.

As I walked through our church on Sunday morning I saw multiple kids with disabilities. There were volunteers sitting with them in nooks and crannies. Volunteers dancing with a partner where there was no music. A volunteer in a hallway carefully holding a hand and walking slowly while chatting about nothing I could overhear. I wondered if other people saw them?  Do the people that work and go to this church know what that group of volunteers is doing for those kids and their families?  Do they know how welcoming it is that when you get to church and find the handicapped seats are all taken but the congregation is so quick about making room the ushers don’t even have to intervene? Do they know that with the few days they give me to prep I can make most any lesson adaptable for Grace and I’m happy to do it?  Do they know what it means when they can admit upfront they aren’t perfect but they are willing to work with you?  I wonder.

Someday I want to have something profound to say about disabilities and the church. In the meantime, I’ll keep watching.

Joy