Seeing Her Face

I opened the email and tears came to my eyes. I certainly wasn't expecting to cry but my reaction reminded me of the thing I love most about my job. I get to serve people of all ages who have developmental disabilities and ensure that they are provided the services and supports they need at any given time in their lives. I get to be the one who meets with them, and their circle of support, to not just ask how they are doing but to see, smell, feel, and even get a taste for how they are. I walk into their homes, schools, day programs, work sites, and sometimes they come to my work site. I get to walk with them as they give me a tour of the places they spend their time and use their talents. They often show me their treasures and I get to learn from them what's important in their lives. I get to see them interact with the people who support them and see the bonds that are established between them. I get to make silly jokes and hear them laugh or see them roll their eyes at me. I get to be teased by them. 

Right now, during this Covid 19 shelter in place time, I only get to call them. I don't like being limited to just one sense and didn't realize how deeply it was affecting me until I got that email. Along with a quarterly report, I asked a care provider for a picture of the person we serve. I didn't know how much I needed to see her face. It was just supposed to be a substitute (albeit a lesser one) for not being able to see her in person and a solution to not being able to communicate with her on the phone because she is nonverbal. It served those professional purposes but was so much more important than those things. It was just what I didn't know, I needed. In that moment as I looked at her healthy, beautiful face, the world got blurry but I could clearly see why I work at CVRC.

Poinsettias

I thought I’d left grief at home and only packed distraction. 

For most of my trip, I was distracted. The 10 hour flight took me to a part of the world I hadn’t seen before. The crisp cold air required my favorite clothes and accessories including a big warm coat, a scarf, a hat, and gloves. Exploring the city required lots of walking, navigating The Tube, taking cabs, and riding a double decker bus. Figuring out what to eat and how much required constantly calculating the risk vs reward because new variables were added throughout each day. How will eating a bite of caramel cheesecake affect my ability to focus and participate in the rest of the days activities? How will having afternoon tea with all its delicious treats allow me to walk several miles and then enjoy a musical?  It was all a distracting game. 

Knowing what to expect and what was happening next required communication with the friends I was traveling with. Communication requires seeking to understand and be understood throughout each and every day. It requires working together to make decisions and compromises that bring joy to the individual and the group. Communicating can be frustrating but also so much fun! We spent at least half of the trip laughing with and at each other. It was a marvelous and healthy distraction.  

Capturing each moment required deciding between taking a picture with my phone or with my eyes. Some things are best captured in a well framed photo and others are better remembered by just gazing at it in its surroundings as it soaks into my heart. 

I thought I’d only packed distraction and then we walked by a shop and I saw it. We were walking fairly quickly so at first it was a blur but then it registered. A simple window display of poinsettias brought a flood of memories and emotion. My mom got one for her every year at the beginning of December. I always wanted to go along to deliver it because her reaction was an incredible mixture of joy, anticipation, and gratitude. Every year she seemed genuinely surprised. She didn’t have an expectation that my mom would bring it but was exceptionally delighted when she did.

To be content with what we have and grateful for anything we’re given. To know that God has good things for us on earth but that He also made it clear there would be suffering. To have the faith that is defined in the Bible as “the substance of things hoped for, the evidence of things not seen" (Hebrews 11: 1) She’s in heaven seeing all the promises fulfilled. Even as I walk past a window display in another country, I’m still learning lessons from her and I hope I always will. Grief may have followed me to London but God went before me and graciously provided the distractions along with the reminders. 

70 things for her 70th birthday

My mom turned 70 today. It sounds like an April Fools joke to me. It's hard to believe she's reached that number but I'm so grateful she has! To commemorate the day, I decided to compile a list of 70 things that I love about her. Spoiler: I only got to 47. Ha! (47 happens to be her favorite number so there's that.) My shortcoming leaves space for you to join me in completing the list. I'll tell you how at the end. Without further explanation, here's what I have so far.

1. Carried me 5 extra weeks when she was pregnant 
2. Sewed my "dress up" dresses
3. Bought me those red high heel shoes
4. Encouraged me to love all of my grandparents 
5. Introduced me to the Schwagers 
6. Signed me up for piano lessons
7. Let me quit piano (6 years later) 
8. Took me to dad’s volleyball games 
9. Taught me to cheer for everyone 
10. Made all of my lunches for 9 years of school 
11. Gave me weekly lunch allowance so I could practice budgeting 
12. Talked about money in everyday situations to teach me how to use it and not be controlled by it
13. Endured my piano recitals 
14. Sat through all of my choir concerts 
15. Showed up to every game
16. Cheered for me everyday 
17. Taught me to cook over the phone when I was desperate at work
18. Let me fly away to college
19. Came to see me at college
20. Took us to the flamingo exhibit 
21. Sang at least one silly song a day
22. Did my laundry for 22 years 
23. Cleaned up after me for 22 years 
24. Made sure I had three meals a day for 22 years 
25. Co-signed for my first car loan
26. Encouraged me to buy a house
27. Fed my dog sausage when I was gone
28. Came to support me the day Lucy died
29. Painted the entire interior of my house 
30. Made us and Gma matching Easter outfits, at my request 
31. Played in the handbell choir with me
32. Made me curtains for every place I’ve lived
33. Let me tell you that something you made me was ugly or beautiful 
34. Sewed me the greatest twirling dresses a girl could ever dream of 
35. Studied The Bible 
36. Went to Turkey and Greece with me
37. Point me to Jesus always, in triumph and trial
38. Prayed for me every Friday with Bonnie
39. Showed me what a good friend looks, acts, sounds, and loves like
40. Hugged me tight and prayed for me every time I left for a trip
41. Listened intently to all my stories when I returned 
42. Said, “thank you Jesus!” all the time 
43. Made up her own words: glish 
44. Can swing everything around to something positive 
45. Has been to all of my softball games, even the ones at 8:30pm, armed with quilts to keep warm
46. Loves to look at the ocean
47. Takes extremely good care of Gma

So this is where you can come in to complete the list with 23 more things that you love about my mom. Write them right there in the comments and I'll add them in. 

This hike is what she wanted to do for her 70th birthday

We made it all the way to Avila Beach

Born in Holland

Being the younger sister of a brother with a developmental disability is like being born in Holland and having all of your first experiences with the backdrop of windmills, Rembrandts, and tulips. These things were not special, they were commonplace. A Rembrandt was just a painting. Sure they looked different from other paintings and yes, I could spot one from a mile away. But that didn't make them special, it made them familiar. Sitting among the tulips wasn't memorable, it was comfortable. Playing around the windmills wasn't a choice, it was a reality. A beautiful reality to be sure but everyone knows that flowers wilt, windmills break, and paintings get scribbled on with markers and knocked off the wall.

It turns out that the thing everyone knew, that I didn't know, was that I'm actually supposed to have grown up in Italy. My parents grew up in Italy and my first born brother was born there. It wasn't until my second born brother was born that my family had to move to Holland. They didn't have a choice. They all lived in Holland for almost 4 years before I was born. I like to pretend that part of me always knew but I really didn't. I don't know exactly when I figured it out. There is no specific moment when I discovered the truth. There was nothing hidden to dig up. The truth was always in front of me and I just gradually comprehended and absorbed it. I was the only member of the family who didn't have to adjust to a new country and it's culture but I found myself struggling to relate to Italians. 

So which culture am I from? I'm not Dutch but I'm not Italian either. I'm in some sort of third category. Dutchian? Italiutch? I know I relate well to Dutch people but I am supposed to relate best to Italians. Dutch people accept me but I'm not one of them. Italians praise me for my "special skills" in relating to Dutch people but, partially because of those skills, I'm not one of them either.

All I want is for both cultures to understand each other and include each other in shared communities. I will translate, interpret, build a human bridge to help people get over their differences, and ignore my own need for acceptance to get the job done. The fact is that I'm neither Dutch or Italian. I'm a sibling and that I shall always be.

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!