It Wasn't Supposed To Be This Way

I wrote this over a year ago. Sitting at my parent's house reeling from having just placed Ryan in his first group home after a series of very difficult episodes. Ryan passed away yesterday morning. In his sleep - at his group home. We are indebted to the people that took care of him - namely Brandon and Fonda. They served their Lord faithfully in serving my brother. 

I don't know why I never posted this. I suppose it went from a blog post to more of a journal entry that I felt I should keep private. But now that Ryan's gone, I look back and see that what I wrote here gives me comfort. We always longed that Ryan would be whole. And even last Spring I knew that would only come in Heaven. Now I just need to remind myself that every minute of the day.

It wasn't supposed to be this way. That's what a friend told me on the phone this week when I couldn't explain why I was so upset about winning a court case we'd be fighting for over 2 years. It's because it wasn't supposed to be this way. Life wasn't designed to be lived like this. The garden of Eden wasn't supposed to end. We weren't supposed to be broken. We weren't supposed to eat the apple.

 It wasn't supposed to be this way.

Someone asked me recently how my brother Ryan was doing. But how do you sum up a life in a sentence? How do you puts words to things you don't understand? Things that haven't yet been revealed to you. How do I take everything that's culminated in the last 32 years and speak an answer?

How is Ryan?

He's okay. But, he's not the way he's supposed to be. He's broken. He's hurting. He's lucky. He's so unlucky. He's happy. He's crushed. He's lonely. He has new friends. He has community now. But, he's lonely. He's proud. He's scared. He's excited. He's angry. He's at peace. He's going to be okay. But he's not the way he's supposed to be.

This wasn't supposed to be this way.

My mom gave birth 32 years ago to a 'perfectly healthy' baby boy with perfectly abnormal chromosomes. And yet he has never been perfectly healthy. A slew of problems have followed him his whole life.

It was never a matter of finding the courage to do what was best for Ryan even though it was hard. It was never a matter of knowing what he needed and not being selfless enough to do it for him. It has always been a matter of not knowing what's best. Not knowing what's needed. All the king's horses and all the king's men couldn't put humpty dumpty back together again. No one could fix Ryan. No one has ever known what to do.

He's lived on a farm. He's lived with a family. His family. Not his family. Someone else's family. Another someone else's family. Again another family. Back to his family. He's gone to school. He's stayed home from school. He's gone to an adult day care. He's gone with my mom in the front seat of her car wherever she goes. He's stayed home and slept. He's gone to meetings with my dad. He's come to live with John and me. Nothing has worked. No one can put him back together again.

It hit me last night that Ryan is simply who we all try to hide within ourselves. He doesn't have an uglier heart than we do. He just doesn't know how to disguise his ugliness like we do. He doesn't have more anger than we do. He just doesn't know how to manage it. He doesn't have more insecurities than we do. He just doesn't know how to hide them. He doesn't have sillier longings than we do. He just doesn't know how to put a guard up like we do. He doesn't have more sin than we do. He just doesn't know how to conceal it like we do. And he doesn't deserve less love than we do. He just doesn't know how to ask for it. And sometimes receive it. He doesn't steal more than I do. I just covet with my eyes while he slips things in his pockets. He's slow to get off the couch and I'm slow to forgive. We're both slow. His just looks lazier. But my slowness is a bigger problem. A bigger offense. It's just that my IQ is high enough that I've found ways to hide it. And so have you. But Ryan hasn't.

Sometimes I let myself believe that I'm better than Ryan because I lead a more productive life than he does. Damn me. It's not about that. It's about us all being so imperfect that only Jesus can save us.

You fool me, too. You all fool me. With your perfect hair and your photoshopped pictures. With the car you drive, the husband you married, the kids you have. You fool me with your bright smile and your loud laugh. You fool me with your humor. You are not the problem! It's my problem for being fooled. I'm fooled into thinking you have it made.

Ryan fools no one. No one thinks he has it made. And thank God for that. Thank God that there is someone in my life who exposes my brokenness lest I think I have it made. Lest I think my life is about my house or my husband or my bank account.

Ryan is who I try to hide within myself. I have all the same problems he has - but they're hidden.

And yet there he is. There Ryan is. He's an easy target if you're trying to find someone to look at to make yourself feel better. It's simple to do.

Damn me for thinking Jesus died more for me on the cross than he did for Ryan. It's just not the truth. It's so clearly not the truth.

Anyway, it wasn't supposed to be this way. Ryan wasn't supposed to have extra chromosomes and I wasn't supposed to be so self-righteous. The world wasn't supposed to be so broken. But it is. And so our best-case scenario is still dreadful. There will be no complete satisfaction or complete joy this side of heaven. Just foretastes until Jesus comes back. Or we go to Him.

So maybe that's why after more than a dozen appeals, an attorney, two case managers, a handful of hearings and navigating an enormously defective government system in so far as it relates to mental health and disability, we won our case and still don't feel fully satisfied.

Ryan didn't fit within the mold of the "normal" kid but he didn't fit within the state's mold of a disabled kid either. And so we fought and fought and fought for services despite the State's best efforts to deny Ryan. Sometimes the fighting was so wrapped in red tape that we forgot to feel any emotion relating to Ryan while we were dealing with it. We became so focused on the paperwork and the technicalities, I could have been applying for a credit card instead of applying for a new life for my brother. But then the last documents were typed and scanned and compiled and packaged to be sent to the State. And the doing was done. And all that was left was to feel. For me anyway. To feel what all the words on all those documents meant.

They meant that Ryan wasn't the way he was supposed to be. And more specifically they meant that Ryan couldn't live with my parents anymore. It was too much. The same root sins we all have in common with Ryan were too unbridled in him to be left unchecked. He was too aggressive. Too dependent. Too exhausting. Too demanding. It wasn't working.

The hearing on Monday was a crisis hearing. It was an effort to bypass the 7 year waiting list we were on for Ryan to get residential and day services.

I asked our case manager that morning before we walked in if being emotional before the judges would affect our credibility. He said you're appealing for immediate services based on your desperation so of course you'll be emotional. But no need to cut an onion to make yourself cry, he said. You don't get it, I thought. I'm not worried about feigning sadness. Or how I'll pretend to be upset. I'm worried about holding it together. I'm worried about losing it. I'm worried about staying calm.

The judge had to go and get me a box of kleenex within the first five minutes. But why? This is what we wanted. This is what we worked for. This is what we needed.

I needed those kleenex because I knew that this - this, our best case scenario for Ryan - wasn't going to be enough for him. Or us. All the king's horses and all the king's men couldn't do it. This isn't the way it was supposed to be. We're living in a broken, broken world. And nothing here can fix it. Only Jesus.

I've been thinking a lot about that lately. Longing. I talked about it a few days ago. Wrote out an excerpt from C.S. Lewis. He talked about the beauty we find within things here on Earth. And yet how that beauty is not the thing itself. It's longing. Longing for something beyond what we'll ever find here. He says, For they are not the thing itself; they are only the scent of a flower we have not found, the echo of a tune we have not heard, news from a country we have never yet visited.

I just keep thinking about that with Ryan. About how we've not yet heard the tune, just the echo. Not yet found the flower, just the scent. I happened to be listening to a U2 song on the radio yesterday. I still haven't found what I'm looking for, they sing. And then they say something profoundly important. Bono sings that he believes in Kingdom Come. 

And that's it. That's the key.

This isn't the way things were supposed to be. But there's a kingdom coming where everything is redeemed. And if I don't believe in kingdom come, I have nothing. I can't hang my hopes on this new group home, though I welcome it as a blessing from God. I have to just keep believing that when the new kingdom comes the flower will be found. The song will be heard. I'll visit the country I've only as of now heard stories of. And Ryan will be as he was meant to be. He will be whole. Wholly whole. Wholly redeemed. Wholly in communion with his maker. And so will I. Praise God, so will I. Broken me. Self-righteous me. Confused me. 

I can't believe that only a short year after writing this, Ryan is indeed with his maker. His body is whole. The veil separating him from understanding has been lifted. I have to believe that. Pound that into my head and heart. It's the only thing to stop the bleeding in our home. The only way to dry the tears. Lord, Jesus, make me know it. Make me know your grace and mercy. Give me abounding trust in You. Give me unwavering faith. Give us surpassing peace that he is in your arms. 

Ryan's memorial will be at Christ Community in Brookside at 67th and Wornall. Monday, September 1st at 4pm. A reception will follow at the church. Ryan would have loved you to be there. Actually, HE would have loved to be there! He was a party lover. Please come if you can. And dress casually. Just like Ryan would have.


Defining Your Design Parameters

***This post is part of a series of home-related blog posts that I will be writing for Scovell Wolfe and Associates, Inc. 
- a residential remodeling and custom home builder in Kansas City. Given my personal blog often dealt 
with interior design and remodeling, I'll be sharing the beginnings of the posts here at We Are the Brewers. 
If you'd like to continue reading, hop over to Scovell Wolfe's ballin' new website.***

I heard an interview once with designer Jonathan Adler about what advice he would give to someone decorating or remodeling their home. He mentioned this concept of choosing three words that you would like to define your space. And then, whenever you’re at a crossroads deciding what rug to buy, what shade of paint to choose, etc. you can evaluate your decision based on whether it falls under the umbrella of your defining words.
What kind of words? Things like rustic, traditional, relaxed, bright

A few weeks later I read another interview - this time with the actress Julianne Moore in a piece she did with Architectural Digest. She, in another way, mentioned this same idea of intentionally defining and limiting yourself within your decorating. Instead of three words, she has five colors. If something isn’t either black, white, grey, purple or green, she won’t buy it. Yes, sounds like a horrible mix of colors. But look how it plays out.

Pretty stunning, really.

So all of this has stayed nestled quietly in the back of my mind. My husband and I briefly flirted with the idea of naming our three words for the home we were creating, but we never settled on anything definitively. I think my words would have landed somewhere in the vicinity of naturalcomfortable, and clean. With a little punch. And maybe some weird mixed in there. Oh, and I can't forget layered. That's perhaps the most important. Okay, so I have six words. My husband would probably prefer it if I added the word AFFORDABLE to my list. But what a buzz kill that would be.

Anyway, several years back, Scovell Wolfe partnered with a client to build this incredible home near Meyer Circle in Kansas City. 

We finally snagged some finished pictures of the interior and we’ve spent all week gawking out how cool it turned out...to see these pics and read the rest of this post, click here!

***This post has been sponsored by Scovell Wolfe and Associates, Inc. 

However, all opinions and bad jokes are my own.***


Sweet Boy

So my cousin threw a party to rival all parties last Saturday afternoon. Complete with any and every detail a detail oriented person could ever hope for. The cake matched the cake plate which matched the high chair which matched the party hats. The balloons matched. The napkins matched. It all matched. In a non-matchy match kind of way. Even up to the art on the walls. And this kid was only turning one.

Basically either my cousin needs to become a party planner or I need to become a better mom. Because I'm pretty sure I have yet to get even so much as a Christmas present for either of my children. Oh and plus, she had everyone bring diapers to donate to their favorite charity instead of presents for the rugrat. So she's mom of the year, party planner of the year and philanthropist of the day. How very underachieving of her :)

But it's a gift, really. I have a gift of not being a good gifter. It frees others - like my husband - of the obligation to return a gift that I have given with an equally sufficient gift back to me. Because I don't give the gift that requires the gift back. I give nothing. Nothing but hugs, of course. You're welcome. And a merry Christmas to you, too.

So watching my cousin's little boy waddle around in a diaper at a party which exceeded my own wedding was pretty humbling. My aunt chided me later and said she warned her daughter not to set the bar so damn high. She's got a long road ahead of her if this is what birthday number one looks like. Then she smarted, 'yeah, all those blog pictures you took of Annie every week of her life? How's that workin' out for ya now that you got Quig??' Touché. Correctly observed. I have taken approximately zero weekly mug shots of Quig. Approximately. And he is in approximately zero framed pictures in our house. Thank you. Thank you very much. Please don't remind me of how awesome a mother I am. I am very much aware :)

Of course, it's due time though. Time for a little kid schmoozing. Annie and Quig whom I so affectionately refer to as Bo-Dan and Pork Butt respectively (again, you're welcome) are pretty dang amazing and deserve some devoted blog praise from time to time. This is for the mama in ten years so I don't forget them as little people.

So, Quig. He's our quigaroni and cheese. Our squigs. Squigy, Q-man. Punk. Creepo. Quig is our sweet little Pork Butt. For real. I could eat him. He's all sorts of tasty cute.

(You see in ten years nobody will remember that this was his cousin's birthday party pictured below. Everyone'll be all 'oh Kylie! what darling handmade party hats and wall decor! You sure threw a lovely party!' And I'll give a humble little giggle and say thank you :))

Quig is basically the most joyful little squirt you'll ever meet. Except when I try to drop him off in the nursery at church. Then, he's basically the most obnoxious, uncooperative, inconsolable little squirt you'll ever meet. However, for most of the hours out of the day, he's gold. Can't get enough of playing with balls. And water. Splasher through and through. Thinks banging the piano is the coolest thing since sliced bread. Has yet to give up trying to rip the mole off of my chest. Which is awesome except for the part where it's painful. 

Quig laughs a lot. Smiles more. 

Has the most beautiful blue eyes. Is a total joy to wake up to. Or so I hear from John who is less lazy than me and is the one who greets the dawn with Quig most days. And by greets the dawn, I mean greets the dawn. Early bird. Sometimes we pretend he's just that - a bird chirping from his crib, and we leave him there until it's a decent hour and we can muster the courage to get out of bed ourselves. JK, we'd never do that. Only sometimes. 5 times a week tops. No, really. Of course we get up immediately no matter the hour...duh.

As punishment for his early waking, he pays penance by being subjected to the antics and whimsies of toddlers. He's totally into it, I promise. That is not the look of fear. It's the look of pure adrenaline. His eyes are on the prize. And by prize, I mean the wall that North and Annie are running head long into.

I ought to mention that he's not quite as undeserving of a little thrill ride from time to time as you may think. Don't let the blue eyes fool you. The kid is a mean biter. Annie has a black and blue bruise that broke skin the size of a quarter from a Quig bite a month ago. I'm afraid it might scar. I think she wants it to though. Draws out the leverage she'll have later on life in sibling scuffles.

Here's Quig in action at a mere five months. It's cannibalistic, really. He sees smooth flesh and can't help himself. Photo-op be damned. He was hungry for mama's face. And went in for the kill.

He's just so darn precious though. Something about this next photo really speaks to me about his future. Can't quite put my finger on it. But I'm pretty sure he'll either work at Steak and Shake or a diner at some point in his life. He looks to be made for it. Can I take your order??

Anyway, Quig seems to have finally forgiven us for naming him Quig and has well repaid us for the first few months of colic. He went from the toughest of tough to deal with to, all joking aside, just about the sweetest boy ever. I love, love, love him.

I pray he'll be a strong man of God who doesn't break many girls' hearts. That he'd know the Lord from an early, but authentic age. That he'd lead his family. That he'd dote on his wife. That he'd be a man of compassion and abounding joy.

Thank you sweet Jesus for our sweet boy.

And then there's Annie. But I'll save her for the next post. She's got a big personality and needs a big post :)


Powder Room UPDATE!

***This post is part of a series of home-related blog posts that I will be writing for Scovell Wolfe and Associates, Inc. 
- a residential remodeling and custom home builder in Kansas City. Given my personal blog often dealt 
with interior design and remodeling, I'll be sharing the beginnings of the posts here at We Are the Brewers. 
If you'd like to continue reading, hop over to Scovell Wolfe's ballin' new website.***

I’m about five months into a powder bath remodel. Clearly that’s a lot of what consumes my thoughts, so let’s talk about it.  Are you thinking way to push your personal agenda on this company’s website? Or are you thinking, sheesh, five months? Either reaction is perfectly fair! There’s no doubt that five months is an excessively long time. And it’s still not done. That’s what happens when you have two kids and you try to do things yourself. You end up in the gut stage for half a year. It’s also what happens when your dad owns the remodeling company and your projects keep getting chucked to the back of the line in favor of actual clients. Lame.
Anyway, my husband and I bought a Diebel tudor in Brookside, Kansas City last summer. In fact, I think we got possession right about this time last year. And the house was as full of potential as it was full of dated shag carpet and rippled wallpaper. I like to think of myself as having been around the block a few times when it comes to making house decisions. This is after all our 6th place in the last four years. So it ain’t exactly our first rodeo. Nonetheless, I naively believed that the bigger the house we bought, the more the rooms we had, and thus the more there’d be to decorate. And, uh hello, I’m all about more rooms to decorate. Unfortunately it turns out that buying a bigger house actually means having more rooms in the house that I can’t afford to decorate. Lame.
The powder bath fell into the category of a room that was super dated, but completely liveable, whereas the kitchen fell into the must. remodel. now. category. Initially, I told John if he’d just paint the yellow and black tile white and strip the wallpaper in the bathroom, we’d make it work indefinitely.

Well, I was wrong. I loathed this room. We all did. We found ourselves not even using it. So, back in February while I took the kids to go visit my aunt in Arizona, John gutted the bathroom...to continue reading this post click here.

***This post has been sponsored by Scovell Wolfe and Associates, Inc. 
However, all opinions and bad jokes are my own.***


Under Foot: Flooring For Every Taste

***This post is part of a series of home-related blog posts that I will be writing for Scovell Wolfe and Associates, Inc. 
- a residential remodeling and custom home builder in Kansas City. Given my personal blog often dealt 
with interior design and remodeling, I'll be sharing the beginnings of the posts here at We Are the Brewers. 
If you'd like to continue reading, hop over to Scovell Wolfe's ballin' new website.***

For better or for worse, there are so, so many decisions to be made during a remodel. Not the least of which is what to put beneath your feet. And there are no less than a million bajillion choices to choose from. (Just in case you thought you'd be overwhelmed.) But in this sea of options, sometimes you need to just stick to your guns and go with a classic. Because whoever said classic had to be boring? 

Let's take a little 'walk' over some go-to flooring. 

1. HARDWOODS. Duh. But there's so much more here than meets the eye. Just as there isn't but one way to skin a cat, believe me, there isn't just one way to have hardwoods. I, for instance, stained our old Brookside tudor's hardwoods darker than dark chocolate. Just how dark? Let me paint a visual - when the kids jack the floor with their toys, I use a black Sharpie to hide the scratches...to read the rest of this post click here. 

***This post has been sponsored by Scovell Wolfe and Associates, Inc. 
However, all opinions and bad jokes are my own.***
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