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.


  1. Kylie...You should be a writer. Maybe you are. That was a beautiful tribute and I believe too,that Ryan is free now. How amazing he must feel. See you Monday. Love...Anne McGovern

    1. Thanks Anne. It was great to see you on Monday :)

  2. Kylie, you are an amazing young woman-definitely mature beyond your years. Thanks for being so open about yourself and for sharing Ryan's story here. You really 'get it.' This world is broken and we won't be whole until we know and eventually are living with Jesus.

  3. Kylie, I do not actually know you, but I do know your parents. You are a very deep thinker and I love the way that you shed light on all of our imperfections. You will be a world of strength for your parents. Our hearts are broken about your family loss, but as mentioned, Heaven gained a new Angel. Our prayers are with you and you are an excellent writer.
    Chris and DeDe sielfleisch

    1. thank you for your prayers. my dad said it was great to hear from you all.

  4. i just finished this. i am sitting at work. bawling.
    kylie....thank you for sharing your pain with us. in sharing a burden it can be lessened - even if only for a moment.
    there is freedom in telling your story - in telling ryan's story.
    praise God he is healed now - whole!
    finding comfort in loss is so hard - but God will give it to you, in small moments you might not recognize. in those good memories of Ryan, in the smiles from others, in a small moment of lightness with your spirit.
    i do not know you or your family, but we are in the same family of Jesus and my sister, my friend, we will help share your burden any way that we can. God will bring you and your family comfort today, just look for it and be ready to receive it.

  5. Kylie, I'm so sorry for the loss of your brother...your love for him, and the brokenness that comes with it just ooze out of your post. There are so many mysteries in this story that God knows, and will hopefully share one day with you. My heart aches for you and your parents and the rest of your family. Praying for you all, that God will give you much peace in knowing Ryan is safe and so well with Him. Take care.

  6. I'm pretty sure I read this the first time you posted it..... I'm crying and I am thankful for your story and for Ryan's life. Geez... I am not whole I am also selfish and self righteous and I say stupid stuff all the time!!!! and won't be whole until I get to be with Jesus!! Lord Come quickly!!!! Thank you Kylie!!!


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