The many ways he ruined my life by having a disability

We are full grown adults now, totally grown up, yet he still ruins my life in unexpected ways by having a disability. In fact, recently, he and our parents were going to come to town to have lunch with me and do some shopping. I took my time that morning waking up and getting out of bed but was about to get ready to face the world, when I got a text from my mom. She said plans changed. He's not in a good mood so lunch and shopping are off.

Is it weird that I wasn't surprised or even upset? I'd seen him on Saturday and this was Monday. Even though it had been two days and I was 45 minutes away, I had a feeling he was in a bad mood. I don't know if I was born with strong intuition or if he made me that way but in any case, the situation caused me to think of the many ways he has ruined my life, or maybe better put, changed me, by having a disability.

1. Took up so much of the emotional space that I was forced to consider others feelings before my own.

2. Needed someone nearby at all times which meant I always had someone to play with and boss around

3. Had to be my mom's priority on my first day of kindergarten so I ended up walking to school with strangers who became my lifelong friends

4. Didn't understand religion and couldn't follow religious rules so I saw the difference between law and grace

5. Always wanted to talk to people but his speech was difficult to understand so I learned how to be an interpreter

6. Loved repetition of songs, stories, and questions so I learned creative listening and answering

7. Was angry without knowing how to express why so I became an investigator of cause and effect

8. Gave vague and deflective answers so I discovered body language and tone

9. Never stayed on a subject for more than two sentences so my mind became nimble

10. His mood would change the course of the entire experience for better or for worse so I had to learn that the world does not revolve around me

11. Didn't understand complicated, multi-step concepts or directions so I learned to quickly translate them into small concise steps

12. Has always been bigger and stronger than me so I had to learn the art of persuasion

13. Desperately wants an item but can NOT handle having an empty wallet so I learned to think through purchases before I made them

14. Has a hair-trigger temper that launches us all into crisis mode so I learned to be calm, composed, and diplomatic under pressure 

15. Does embarrassing things all the time but managed to teach me that I embarrass him too 

16. Incessantly asks for what he wants until he gets an answer he can understand and accept and showed me how to be persistent when searching for clarity

17. His needs could trump mine at any moment so I learned that God is the only One I can count on 100% of the time and God is faithful to show me that He is more than enough.

I'm convinced this list is not complete because he has more ways to frustrate me and to teach me. God has always gotten my attention through Nathan and I'm sure that will continue so stay tuned. :)

Never forget

I imagine I will always be able to tell you where I was on 9/11/01 and I will also be able to tell you where I was on 9/12/03. Here an my account of that day.

It was a Sunday, at about 2pm, I was at my parents house and I got the call I’d been praying the last three weeks for. After hanging up, I called my cousin Amy. I am forever grateful that Amy came with me and that by 2:30 we were on our way to Long Beach. I think God must have given us some sort of tail wind because at 6pm we were at the church where she’d called me from.

When she walked out of the building I gasped inside. She was so thin and her eyes were hallow. She didn’t think the abuse showed on the outside but it did. I could see it from her pale face to her dejected shoulders to the hesitation in her steps. She touched her purse and tried to smile and greet us with her chin up but even eye contact seemed painful. She was walking out of a war zone and it was okay to show it.

I vaguely remember thanking the people at the church who had given her shelter that day and then we got in the car to start our journey home. It felt like a movie scene where the prisoner gets broken out of prison and the getaway car is a Saturn SC with four cylinders that goes from zero to sixty in two days. As we approached the freeway exit to his house, she felt the gravitational pull to go back “just to spy on him”. I wanted to give her anything she asked for but she was well practiced in forgetting the bad and the ugly. That’s how she survived. But now began the time to slowly learn how remember again. So after a two second hesitation, I said no to her half hearted request and sped up to keep widening the gap between hope and fear. The healing had just begun.

Flawless

In keeping with my habit, I've been reflecting on my time at this year's Joni and Friends Family Retreat. So many things happened over the course of the week that made me feel all the paradoxes: able/disabled, confident/uncertain, delighted/annoyed, equipped/lacking, joy/fear. I had all of the answers and none of the answers. 

The lesson God kept faithfully teaching me through hundreds of different little experiences is that He is all the first things when I am all the second things. He is able, confident, delighted, equipped, joy, and The Answer. I don't need to become those things or produce those traits in myself. And it's a good thing because I can't make myself be those things. I can pretend to be able to but the reality is that I can't. God is those things and in His great mercy and grace offers to be those things for me and for all of us. 

One of the ways God taught me this lesson was through the following scene between a man in a wheelchair named Michael and a man next to him named Alan. 

Michael’s singing is in the form of happy humming sounds and Alan’s singing is in the form of off-key notes and clear words. One man has spent his life being cared for and the other has spent his life caring for his loved ones. Both have learned to communicate without words. Both have experienced lifetimes of frustration and pain and both have seen the hand of God in all of it.

They met on a Monday afternoon and bonded immediately. By Wednesday they seemed to understand each other on a deep level. Alan would make a move, Michael would make a noise, Alan would adjust, and Michael would silently approve. Michael was teaching Alan his language and Alan was soaking it in.

I had the privilege of watching this exchange happen many times throughout the week of camp. My favorite time was when they pulled up to the lake in front of the patio I was working at. Alan situated Michael’s chair near some steps and sat down on the step. Michael made a sound and Alan got up. He moved Michael’s wheelchair forward several feet closer to the edge of the lake and Michael approved. Alan no longer had anywhere to sit but that didn’t bother him.

The next thing I heard was a familiar Mercy Me song coming from Alan’s phone. The two men started singing and the words of that song have near been more profoundly beautiful to my ears.

“No matter the bumps
No matter the bruises
No matter the scars
Still the truth is
The cross has made
The cross has made you flawless

No matter the hurt
Or how deep the wound is
No matter the pain
Still the truth is
The cross has made
The cross has made you flawless”

I was wrecked. Tears flowed as my heart swelled with the Truth of the gospel on display before my eyes. 

We are all flawed but the cross has made us flawless.

Moments later, Alan and Michael passed by me and Alan remarked, "Michael is the first person to ever sit through me singing an entire song! Hahaha!" 

God was even faithful to provide me with comic relief when I was overwhelmed by the wonder of it all!

Best Picture

I don't know how he does it but he makes every experience memorable. For better or worse, they are all memorable.

The story of my first speeding ticket is one I've told countless times and quotes from that story have wiggled their way into my vernacular. Read it here and I'm sure you'll start saying "I only listen to gospel!"

The story of my second speeding ticket is boring, not even worth talking about, except to shake your head at me for getting two tickets. You know why it was boring? He wasn't there.

Recently, my parents and I went with him to Tahoe Joe's for his birthday. He did all kinds of his usual embarrassing moves like avoiding eye contact and responding to questions like Scooby-doo but the server thought he was great! When she came to deliver his birthday cheesecake, he wasn't in his seat. She looked so disappointed and then relieved to hear that he was just in the restroom and would be right back. She stood there and waited for him, holding the cheesecake with the candle in it, armed with a lighter to start the celebration as soon as he returned. He had made a connection with her and as she said good-bye to us, she looked at him and said, "You come back and see me again soon, okay?" I'm sure she wouldn't mind if the rest of us showed up but she was really only talking to him.

I've been to that restaurant countless times and nothing that memorable has happened. You know why? He wasn't there.

Last night my whole family went to see Brant Hansen's Misfits Tour with Producer Sherri and special guest Jason Gray. It was "an incredible night of awesomeness" just like Brant had been repeatedly promising on the radio for weeks. They were all so funny that by the end my face and my throat hurt from laughing so much! It was all memorable but the moment I will remember the longest was at the end of the night during the meet and greet.

I went through the line the first time with my brother Edward and his family. I was nervous because I always get that way when I am about to meet people that I admire. Everything went well. I got a big hug from Sherri and a solid handshake from Brant. They both signed my copy of Blessed are the Misfits and it was wonderful to meet them. Really wonderful. But it wasn't an experience to write about and expect other people to think was interesting. You know why? He wasn't there.

About 5 seconds after that, he walked up to me and said, "I want to meet him!" I looked behind me and saw that my turn was over and the next people were well into their picture taking, hugging, and handshaking so we couldn't just jump back into the space and expect positive attention. Then I looked at the line that stretched across the room, into the hallway, and around the corner and said, "Okay, but we're gonna have to get in the back of the line." I thought he might be dissuaded but he headed for the hallway and soon we were standing near the bathrooms hoping our rides wouldn't leave without us.

On their radio show and podcast, Brant and Sherri often talk about being introverted and extroverted, reading social cues, high fives, hugs, eye contact, and what they've learned from each other about social interactions. Brant talks about having difficulty both reading and using social cues. He has autism so he learns to follow rules rather than instinct when he's interacting with people who don't have autism. So as the line is moving forward, I'm wondering how this interaction is going to go between Brant and him. He has an intellectual disability and Brant has autism. He doesn't follow social rules and Brant memorizes them. This interaction is bound to be interesting.

It's almost our turn so I review the plan. We will say hi, take a picture, and move on. (Sure we will.) "Do you want to wear your hat in the picture?" He takes it off. "Do you want to be in the picture by yourself or do you want us in it with you?" "Ya, you guys too," he says to me and our sister-in-law.

Before I even notice that the people ahead of us are done, I hear "HEYYYYY BUDDY!!!" He's rocking and rolling. High fives, side hugs, clearing his throat, putting his hand on his neck and singing low notes (off key), laughing really loudly, smiling, not making eye contact, striking lots of poses for the picture while showing off his singing "skills". Then he starts dancing. Oh my.

As we are taking the picture, I hear Brant say,"This is my favorite picture of the night!" I looked at Brant and his face is glowing with joy. Seriously? This is the guy who says that people usually see his facial expressions and think he's angry even though he's not. But, of course, not in this moment. He's all smiles as Nathan gives Brant his hat and Brant understands that Nathan wants him to sign it. He steps over to meet Sherri and I'm just trying to stay out of the way as he starts what looks like a touchdown celebration dance. She doesn't miss a beat and starts dancing too! He hands her his hat and she signs it too. He loves people and loves autographs. Sherri is still dancing as Nathan walks away. I'm still just trying to stay out of the way.

I will remember it as the night I got to meet Brant and Sherri and the night that Brant and Sherri got to meet Nathan. Suddenly, he turned into the celebrity they were excited to meet! I don't know how he manages to, in the same moment, be completely embarrassing to me and an incredible blessing to everyone else. He's got a gift. Best picture of the night? I guess. Most memorable? Absolutely!

Singing during the picture =
embarrassing Memorable

My moment was wonderful. I will remember it but I don't expect they will.
It went just like all of the other pictures went. There was no singing OR dancing.

This picture is my favorite because these two had already bonded and I'm just trying to catch up.