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.

on looking up to GOD

Heavy hearts. That's what we seem to have around here. Ryan, for whatever reason has been spiraling downward in recent days. Weeks. Months. It's hard to say. I get another devastating piece of news and I laugh. That's when you know it's bad. 

I've been learning about the fear of God. FEAR. That word. What does it mean anymore? It's putting God in His due place. Acknowledging His majesty. The fear of the Lord is the beginning of knowledge. Well now, wasn't Solomon smart when he said that. Its truth is holding me up.

Fiery embers spark. Voices sound different outside in the early morning. Campfire voices. But it's just Wednesday. The coffee is hot but our sandals are on, not our hiking boots. Because we're home. On the porch. Early morning. And we're all hopeless. How we spend our days is how we spend our lives. Here we are. Spending our lives hopeless. There aren't answers for Ryan. Any light seems futile. Our ideas, arbitrary. No sorting of the puzzle pieces for the hundredth time comes up with any links. 

I struggle all week. Where does Ryan fit? What do things look like next Christmas? At Easter? At my fortieth birthday?

And so I'm reading this verse tonight. The fear of the Lord is the beginning of knowledge. (Proverbs 1:7) But what is the fear of the Lord? It's seeing God as He is. High and Holy. Creator. Father. Provider. And when you know what God is, you know what you are not. When you believe that God is provider, you don't worry about being provided for. Because God is so good. He is not safe. He is good. He's the King, I tell you. (The Lion, the Witch and the Wardrobe - Lewis) 

Seeing the bigger picture. I don't know if that's the right phrase to capture the idea. What I know is that when my gaze is upon the fire before me and we sit and talk in morning voices about all of the dead ends and all of the bitterness and all of the unknowns, I sink into depression. But when my focus shifts and I fix my eyes on Jesus, our author and perfecter, things change. Where? In my situation? I don't know. Maybe. Maybe not. But things change in my heart. When I focus on the promises God gives me, I can't find a way to be desperate. When I remember the justice of God, I can't be afraid of falling through the cracks. When I receive the new mercies of God every morning, I can't be bitter. 

The beginning of knowledge is the fear of the Lord. How can it be otherwise? It's when we recognize who God is - who He really is - that we are wrapped in a peace that surpasses all understanding. 

Burning questions that I have for my life and for Ryan don't burn when I have the fear of the Lord. It all just becomes bigger. It goes beyond me and my problems. It brings me to the foot of the cross. His absolute sovereignty is our greatest security.

Peace that surpasses all understanding. (Philippians 4:6) You know, Paul didn't describe peace as surpassing all understanding for no reason. It's because it's important to note that it's a kind of peace that doesn't always come through logical resolution. It's not the, ah, I see how things will work out and thus have peace about it kind of peace. No, it's the I'm anxious about something and I bring it before the Lord and He gives me peace despite the circumstances kind of peace. Am I bringing that home? 

Yesterday was an ugly day. Police. Ambulance. Hospital. Devastation. Pain. Desperation. 

And then I heard a joke and laughed. Because I had a peace that surpassed all understanding. Still no answers. When I dwell on the specifics, I'm deflated. When I lock eyes with God, He guards my heart and mind. He tells us to make our requests known to Him through prayer and petition, with thanksgiving. That's what He tells me to do. So by golly, prayers and petitions there will be because this is one absurdly dark season in our lives. 

***I wrote this late Monday night and never published it. Some head way has since been made. Less the kind you feel now, more the kind you wait for. Groundwork is getting laid for Ryan to go to a day service five days a week. But that start date is three weeks out. That's the opportunity for 21 more meltdowns. And your guess is as good as mine as to whether the meltdowns will be had by Ryan or by us, his family. And the jury is still out as to whether or not he'll even thrive (survive) in this new environment. Prayers and petitions, people. That's what I'm lifting up.

********Also, don't hate Annie just because she can rock the polka dot top with the polka dot bottoms and you can't. Just saying.

i can't handle your normal.

When my parents went to Colorado in June, John and I were in charge of Ryan. It. was. terrible. No, Terrible, with a capital T. 

I don't know how it works in families with special needs kids. Are you allotted one major, disproportionately sized meltdown per lifetime, per decade or per day? Not sure. But I had mine. 

I vividly remember Ryan had just woken up and was still in his downstairs bedroom, I was sitting at the table organizing pictures and BOOM. Ryan came up the stairs and started knocking on the wall to scare me. And it did. But what it really did was send my dog into a frenzy. Which was no surprise. Ryan knew he would bark incessantly and did it anyway. And there it was. The first tiny misstep which led to my demise. Then came breakfast. He pulled out a mixing bowl. A MIXING BOWL, people! And poured half of a box of cereal in it. Then, there wasn't enough milk so he added coffee creamer. Say what? Chunky globs of artificial powder floating in your milk doesn't sound tasty? I took a deep breath. Then he sat down at the table and demanded I take him to buy a caramel latte from Latte Land. And I snapped. 

Not reach across the table and choke him, snapped. Just crumble on the inside, feel a tinging in your skin, push out a deep, voiceless moan, snapped. It was like a mirage of feelings I knew I would experience over the course of the entire day came all at once. The hopelessness. The exhaustion. The frustration. The impatience. The boredom - what to do for the next hour WITHOUT spending money (I'm cheap to a fault). And I felt overwhelmed and not in the mood. I told him he can't demand things of me. He pushed the dining chair back invoking a screech against the hardwoods that would make you shudder. His milk and creamer cereal splashed as he went from sitting to standing. And a few choice words came from his mouth in a relatively calm manner as he walked back to the kitchen for more cereal. Namely, Fine, you little brat. Damn you. When is mom coming home? I'm calling mom right now. You don't do anything with me. I hate you. I'll do whatever I want. Where's John? 

Good question. Where is John? At work. Lovely. 

Both my dad and John had encouraged me to just leave if I ever felt like Ryan was getting out of control. But he wasn't. I was getting out of control. 

I got up anyway, told him that I couldn't handle him and I went to the car. That's the disproportionate part. We put up with stuff like that all the time. We never leave when the worst word out of his mouth is damn. I think he was shocked. And enraged. He ran out to the car and told me I better not leave and raised his fist. 

*****This isn't the time to be playing out scenes in your mind from a movie about an abusive man. This wasn't me driving to a battered women's shelter. This was me raising the stakes by reacting the way I did. Ryan feeds off of your reactions to him. You're happy, he's usually happy. You yell at him. He'll yell back. I knew I was overreacting. And he hadn't even been in a bad mood that morning. He was far from any sort of aggression. He was just playing the part I invited him to play with my attitude. And he never would have gone through with it. A lousy push would have been the best he'd had.*****

He went inside to get a shirt on and said that I better take him if I was leaving. I got out of the car and went straight to the shower. I needed alone time. A place where if he called for me, I'd have an excuse not to answer back. And I just started crying. Weeping really. For the first time in longer than I can remember. I'm not a big crier. And I started praying. The prayers were more like groans and moans, and I don't know. Maybe you'd call it a pity party. But have mercy on me. I'm a selfish kid. 

I had this crazy idea that if Ryan saw me cry he'd feel remorse (remorse for what, I'm not sure...eating too much cereal? knocking on a wall?). I thought I should let him see the stress his selfishness puts people in. But that's the pinnacle of selfishness. Can you imagine if God did that to us? Let us feel the weight of our sin? Consequences, sure. But guilt is not from God. The Spirit convicts; it doesn't guilt. God offers full forgiveness, not deserved punishment. And I was hoping Ryan would be so overcome by guilt for making me feel so hopeless that he would be nicer. 

It didn't work. He started insisting that he take a chill pill to calm himself down. It's a pill reserved for the very worst days and his very worst meltdowns, when we need him to majorly calm down and fall asleep for a long, long night. And that's when I shouted, "Ryan! Don't you get it? You're not having a meltdown! I AM! You're not out of control. I just can't handle your normal! Your everyday, normal behavior is what's too much for me!" 

I just can't handle your normal. 

Can you imagine a better way to make someone feel like a piece of shit? He looked so confused. I'm sure my emotions came out of left field for him. Like I said, he really wasn't being any different than he usually was. It was as though he had to make himself madder than he was to match my anger because he didn't know what else to do. And he had no idea why. 

I didn't know where to go from there. How to get through the day. I took him to Latte Land for that damn caramel latte he wanted. Then my mom's friend Karen came over to be a buffer. Ryan took that damn chill pill even though I didn't want him to. And he slept from maybe 3 in the afternoon through to the next morning - whereupon I put my best smile across my face and took him to Oceans of Fun. Life continued as normal. 

I used up my mental breakdown of the decade. No timeouts left. You have to get back on the field and play the rest of the game. 

This week my mom is in Michigan with some friends. Bless her. She needed a break. And my dad is working, although he's tried his darndest to come home every four or five hours and make sure I'm not in the bathroom weeping :) Or maybe it's to come home and check on Ryan and play with Annie. Because this time, unlike last, I have my baby here with me. And I planned ahead to have relief from friends of my parents every day. A dinner with one family, a movie with another, even a Bass Pro outing. I won't name names but one of these gracious people even bought Ryan a pair of shoes in exchange for his commitment to vote for 'Ronny.' You know, Kylie, the one who's president of all the taxes and stuff. 

And this week, unlike the last, I've surrendered a lot to God. I've tried to embody grace towards Ryan. I've tried to be kind to him. To be authentic with him. To enjoy him. To give him credit where credit is due. It's still the morning. He's not even awake yet and we have another 11 hours before my mom gets home, so who knows. But, as of this moment, it's the best four days I've ever had with him. 

eggs in a basket

I think we ought to consider the 'new year' for Ryan to begin the day after the XXYY Symposium each year. Because it's with the same zip and zeal that many of us face January 1st, that Ryan lunges into August. I don't know if it has more to do with the added attention bestowed upon him for that weekend in Colorado or if it's being around other boys with XXYY that lights a fire under his rear. Either way, he returned to Kansas City with grand plans and a new hop in his step. He's decided he's going to lose his 'bowl full of jelly' that I so fondly mentionned here. He's on a new medication that curbs your appetite. I swear it's got to be more placebo effect than anything, but whateves. We'll take it. He's proudly skipping meals these days. Not that we even want him to! But we'll ride this train as long as it lasts and gladly congratulate him every time he throws off a few pounds.

I went over there yesterday and he asked me if I'd heard what happened. He always has and always will expect everyone to be privy to any event in his life. Even profoundly mundane events. Like what he ate for breakfast. But, I said no, I hadn't heard. He told me that our aunt had a gallon of sugar free ice cream (Ryan is diabetic) that she no longer wanted and sent home with him. After dinner he snuck the carton to the basement and ate. The. Whole. Thing. He said he was really feeling bad. Like, sick bad, not guilty bad. You know, he said, because that was a lot of ice cream. Yep, Ryan, that is. Anyway, he said, you know what the worst part was? I got on the scales in the morning and I'd gained five pounds from it. 

I'm no scientist but I don't know that that is entirely possible. Oh, Ryan. Always a flare for drama.

Another resolution Ryan has made in addition to losing weight is to give a more noble attempt at cleaning his room. He's decided that he'll make my parents take away his new pair of shoes if he hasn't cleaned his room. He explained the whole thing to me yesterday afternoon:

<<You see, if I want to wear, like say, the John Brewer shoes, mom and dad are just going to say, Nope. You know the deal, Ryan. Not until your room is cleaned. And Dad will put them in his closet and I'll go down and clean it up. You know, because I'll want to wear them. And then I'll go back up and tell them it's done and they'll let me wear them out to dinner and other stuff. Don't you think that's a good idea?>>

I can already see his temper flying the minute my parents ever try to implement this new plan of his. Oh, boy. And the 'John Brewer shoes' are referring to a pair of John's loafers that Ryan has been obsessing over for months and finally persuaded my dad to buy him last week. This isn't the first time that Ryan has been adamant about acquiring a pair of John's shoes. Accordingly, my dad told John that he has to pre-approve all shoe purchases in the future, considering it won't be long before he'll be buying them for his own kid. 

Anyway, on my way out of the house, I passed by this a stack of papers sitting on a little dry erase board. 

Let me explain just how great these lines are. First of all, he rarely ever writes anymore, so I always enjoy seeing his handwriting and his spelling. Secondly, I've never seen him pick up after the dog in the backyard. Ever. And finally, he has on there to ((water kiska loo)) who is the dog. I love it. Didn't you know? You don't give water to a dog. You water the dog. Get with it, kids. 

((Fix Fruit for my Fav, P.o.P.s)) What does that even mean? And ((Take griffin out for pee, walk, poop)) In that order, sir. Also, never seen him walk our dog before. Ever. And then my favorite: ((Clean up after Baby's mess when she here.))

Oh, Ryan. You got to love this kid and his londary and landrey spelling ways. 

Matthew 26:41 says that our Spirit is willing, but our flesh is so weak. That about sums up Ryan's whole agenda. But, who knows. Maybe he'll go against all odds and astound us by knocking the socks off of these chores lists. 

All I know for sure, though, is that despite ALL THE ABSOLUTE CHAOS, STRESS AND DEVASTATION that are sometimes a part of life with Ryan, he will ALWAYS make you laugh by the end of the day. And when you're pulling a year old stick of butter, banana skins and slabs of uneaten raw cookie dough from the basement crawl space with barbecue tongs because that was Ryan's long unknown hiding spot, you really do need to just laugh. You can't make this stuff up, people. 

One day, I believe, we will see Ryan in his true glory. It won't be in this broken world. It will be standing before his Heavenly Father, who in spite of our not understanding, knit Ryan together exactly as He did. And Ryan will be showing God his red leather jacket signed with Dale Earnhardt's name on it. I'm just sure of it. And there won't be anymore lists of chores to make Ryan any better of a kid. He won't need to keep striving for what he can't reach. I've given up hoping for redemption here on Earth. No magic tools or classes or gadgets that will make Ryan perfect or typical. 

And maybe if there were those things, instead of being blessed by them, I would be distracted and begin thinking that things were pretty good here on Earth and I'd stop looking toward my Heavenly Father in HEAVEN. The reality is, with this lot in life, our family has absolutely nothing here on Earth - no baskets - to put our eggs in. No government program. No special needs job. No group home. And the more we keep juggling our eggs in our own hands, the more apt we are to drop one. We, as a family, have to keep reminding ourselves to put those eggs in God's hands. I know, this egg metaphor (and this post) has gone on too long. But I'm serious. I keep looking to this world and its systems to solve Ryan. I'm looking to psychologists and Adderall to keep our family sane when this is what I need to hear:

Come to Me, all who are weary and heavy-laden, and I will give you rest. Take my yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light." Matthew 11:28-30

We need to keep begging for entry into Johnson County's special needs services so Ryan can make friends. But we can't think that that's our savior. We need to keep disciplining Ryan. But we can't think that that will fix everything. We need to help Ryan lose weight. But we can't believe that our problems will fall off with the pounds. We need to keep searching for better medicine. But we can't believe that medicine heals hearts. 

And taking my trust and my beliefs out of these things (medicine, government programming, health, behavior) will actually be satisfying. Because when they fail (and they will all fail) I won't be disappointed. Because my only hope will have only ever been in Him. 

Solomon writes in Proverbs 30:

Give me neither poverty nor riches...that I not be full and deny You and say, "Who is the Lord?" Or that I not be in want and steal; And profane the name of my God.

I'm not asking for a hard lot in life. And as much as my flesh wants to ask for an easy lot, I know that if I had it, I would forget to rely on God. So instead, Feed me with the food that is my portion. Proverbs 30:8

Brokenness is now and will continue to remain painful until Jesus comes back. But brokenness is also our catalyst for surrender to Jesus. And that is why it's good that these medicines don't heal everything. It leaves room for God in my heart. It gives me no choice but to trust Him.

XXYY Sneak Peak

John took a plane home. Ryan's in a car with my parents on a straight shot back to Kansas City as we speak. And I'm about to take a nap. It was a LONG weekend at the XXYY symposium. Annie and I have stuck here in Denver another day to bum around. And that's just what I'm doing. Bumming. Because this weekend really took it out of me. It was exhausting. It was frustrating. It was encouraging and discouraging in the same breath. Heart breaking, angering, saddening and hopeful. I want to write about it - what I learned, how I felt, what it meant to me and our family. But it's almost just too much today. I feel like I need a good minute to process. 

In the meantime here are the only few pictures I took on my iPhone. More to come eventually with my camera. 

Here's Ryan with my husband John. 

About five minutes before I snapped this picture, John told me he was having a rough time. Everyone in our family seems to have had their breakdown with Ryan's diagnosis and what it means for his and our lives. It's an intensely devastating moment of hopelessness and helplessness. A moment where you want to give up. Finally and forever. I'm sure my parents had theirs years ago. I had mine a few months ago. And John was on the verge of his that afternoon. We'd escaped the symposium for lunch in an attempt to redirect a meltdown Ryan had had that morning. He and Ryan were in a hat shop in Estes Park laughing, joking around with fedoras. And when Ryan stepped away, John looked at me and seemingly out of the blue said he felt beyond frustrated; he was ready to fold his hand. I asked if he wanted to go back to Denver early and he shook his head. 

And then the Holy Spirit swept in as it has a way of doing in those low lows when you really need it. And within minutes, John had made it to the other side. He still had love to give to Ryan when he had just seconds ago believed he was empty. 

Anyone can slap on a smile for a picture. That's not what this was. This was a renewal.

"Then they cried to the Lord in their trouble, and he saved them from their distress. He brought them out of darkness and the deepest gloom..." Psalm 107:13


It's in our deepest brokenness that we have the opportunity to most rely on God. And it's in our deepest brokenness that He has the opportunity to most redeem us, renew us and revive us. 


"The Lord is gracious and righteous; 
our God is full of compassion.
When I was in great need, he saved me.
Be at rest once more, O my soul,
for the Lord has been good to you." Psalm 116:6-7


So that picture of John and Ryan may look simple - a quick photograph of two guys smiling. But it's more than a little complex. It's an image of God's grace.


In the same way, this next picture is more profound than anyone reading will understand. And in a few days maybe I'll try to explain more about why. But for now just know that Ryan is standing next to two 8 year old twins plagued also with XXYY, being raised by a mother who is the definition of strength, patience and courage.

These boys have a long road ahead of them. And I can already see the bumps. They're tire flattening bumps. But their mom is a saint. I'm going to be praying for their family like I really have never prayed for any other. 

"The Lord's right has hand has done mighty things!" (Ps. 118:16) Let me dwell on that tonight.

the powerless against the mighty

I watched 60 Minutes on CBS a few days ago. The story centered around the breakthrough use of the iPad for people with autism - the opportunity it gives them to use their fingers to swipe and point. And that it speaks aloud the pictures that the child touches. So these kids (and adults) who have never been able to talk or communicate can now order a soda at a diner and tell their moms if they're happy or sad. Tired or hungry. It's a small thing. But it's a door whose lock has been turned and that is slowly beginning to open. And to know as parents that you have Apple on your side constantly innovating a device that's profoundly and positively impacting your autistic child's life? Well, it's got to feel good to have that sort hope and support. 

I'm selfish. And I'm wondering when that door is going to open for my brother. I imagine that just about anyone would watch a segment like this one on autism and iPads and be moved, feel compassion and have joy for the parents and children who are being so greatly helped by this technology. But for anyone that's touched on a daily basis by a child with special needs, it strikes a tender chord. I think you are more deeply joyful for those people seeing hope, because you long for it so much yourself.

I have to be honest. I constantly look at other types of 'special needs' and conclude that they are in every way better and easier than those of my brothers. I have a whole slew of reasons as to why I believe it. Either there are more resources for that diagnosis. Ryan's symposium for XXYY has 15 attendees this year - from as far as Germany, only 15 boys. Or there are more people interested and passionate about research. There is only 1, read it: 1, doctor in the United States (and world?) that specializes in XXYY. And oh yeah, she's on maternity leave. Or maybe it's that at least the child doesn't know that they have special needs and so they get to live in blissful ignorance. Ryan knows he doesn't have friends. Or maybe they know full well but have the capability and desire to be independent. You need to stand over Ryan to make sure he brushes his teeth. They know their limitations. But they work with them. I don't even know his limitations sometimes. They get to live in group homes. His genetic disorder is so rare that group homes don't know how to handle him. Other types of special needs adults hold down menial jobs. You don't even want to know what happened the one time he got a job at the YMCA. It involved a trainer's cellphone, a toilet and a surveillance camera. You fill in the blanks. Needless to say he was quickly unemployed.

It's not fair to do this though. It's not fair to compare the struggles and the plights of various special needs families. They're all broken. They all need a miracle. The problems that afflict Ryan's life just look different. But, I have to be careful not to scream sometimes. Not to scream so loud I wake the baby. But that's how I feel. Where's Ryan's iPad? Forget about opening the door that would lead to a better life for him. Let's just please find the door. But I think I'm wrong to believe that autistic families are the only lucky ones because they now have have the iPad and its promising future on their side. Because we all have God on our side.


Lord, there is no one like you to help the powerless against the mighty. Help us, O Lord our God, for we rely on you and in your name we have come against this vast army. O Lord, you are our God; do not let man prevail against You. 2 Chronicles 14:11

Ryan is the powerless. I am the powerless. My family is the powerless. Mighty is what afflicts Ryan. Mighty is the world. Mighty is hopelessness. Mighty is depression and desperation. There is no one like God to help the powerless against the mighty. Let me believe that, God. And help my unbelief. I see no future for Ryan. I see the day by day. But I want to see the future. I keep looking for his iPad. His fancy pill. His perfect doctor. His new best friend. What is in the works for Ryan?


No eye has seen, 
no ear has heard,
no mind has conceived
what God has prepared for those who love him. 1 Cor. 2:9 AND Isaiah 64:4


It says that twice in the Bible. Thank goodness that the only options aren't those that I can conceive of! That's the best news I've heard all weekend. 

So I wish to focus on that tonight. And every night. That no eye has seen the books that God has written that only Ryan with his wandering eye will ever read. And no ear has heard the language that God has created that will be a beautiful harmony to his ears. No mind has conceived of the community that he will one day find in Christ. God is the host of that party and He has prepared the goods. And they are good. 

there's food on my face, too

Sometimes I look at Annie with food all over her face and crumbs in her hair with stains on her clothes and dirt on her feet and I wonder what it will be like when she grows up. Seeing her on so many countless occasions looking so silly, so childlike, so naive and I wonder will I ever be able to see her as an adult without remembering the blackberry stains on her chin? And I think it must be this way with God.

We pound our fists in the air telling Him this is the way things ought to be or this is what I need or don't you know, God, that I'm all grown up now, I get it now and I have all the answers. We stand there with our faces clean, makeup on, hair done. We have expensive clothes on our backs to make us look sophisticated. We're proud of our waistline or our marathon time or the number on our paycheck. We look up to the sky to make our demands while we hold an iPhone in our hand - proof of our knowledge and of our advancements. And don't you know that no matter how much we've forgotten, He still sees the blackberry stains on our chins and mud on our ankles. The umbilical cord still drying on our belly buttons and the frizz in our hair. 


Romans 8:26 says: the Spirit helps us in our weakness. we do not know what we ought to pray for, but the Spirit himself intercedes for us with GROANS that words cannot express.

Often in dealing with my special needs brother, our family finds ourselves in moments of absolute confusion and hopelessness. It's not always a matter of knowing what's right and what's wrong and then having the strength to do the right. Sometimes, you just don't know which side is up. And often, too often, I process the situation and I dig deep into my brain for a solution. Steps to take. The right people to call. The right programs to sign my brother up for. The right method of discipline. Or discipline at all? Maybe just total grace. And usually I come up with a game plan and if God is lucky I set aside a few minutes to explain it to Him so that he can know how it's going to work and the role I'd like Him to play in it. Sounds silly, right? But isn't that how you operate, too? 

And I have to think that with my proposal all put together and my arguments stated, God must look down on me, and say, Child, you do not know what to pray for. And He is right. Because, I don't. But thankfully He tells me that He has put His Spirit inside of me to GROAN what WORDS CANNOT EXPRESS. My prayers are so often spoken from lips stained with berries and crumbs in my hair, but there is a groaning going on before my God on my behalf. And that speaks to me because I can remember times where I've been absolutely shattered by this world and by sin and confusion and I've cried so hard I've groaned. And to think that the Spirit of God is GROANING what words cannot say is like salve to my soul. And it says that the groaning happens while we wait for what we do not yet have - the redemption of our bodies, and our adoption as sons. SONS AND DAUGHTERS TO OUR ABBA, FATHER.

So anyway, what I'm really trying to say is that I'm glad that MY prayers aren't the only ones being uttered on behalf of me and my family. Because so often I either stand arrogantly before God with naive requests or fall sheepishly before Him not knowing at all where to start or what to pray for. I'm glad that Jesus Himself intercedes for us (Romans 8:34). Because who am I kidding? I may fool myself and look into the mirror sometimes and think I have it together. But I don't. Not even a little bit. I must look like such a foolish mess before Him. Thank goodness He came to clean it up.