I would be weeping

Today, for the second day of a three day party marathon, we celebrated our son Ben's 22nd birthday. As an adult with Williams Syndrome, a genetic deletion that makes many aspects of daily living a challenge, Ben can at times stretch his father's patience and stamina.

But Ben is a beautiful human being. He is the friendliest guy you'll ever meet. His smile is amazing. His empathy is deep. His ability to remember you is nearly unmatched. He sees you as a friend, instantly and forever. He is a lover of people. 

I am so proud of Ben: all he has accomplished in his 22 years, the hearts he has softened, what he has learned, how he has grown, the dreams he has for his life.


As I've scrolled through headlines today, I have been struck by a pretty simple question: How do the parents of our current political leaders see their children, these white men in power, making decisions to further disenfranchise the poor, to obscure the rights of so many people, to dictate life choices for women and LGBTQ friends, to recklessly destroy our environment, to pursue wealth at the expense of others, to threaten our world through state-sanctioned bullying, and to disregard the health needs of millions of Americans.

If these were my sons, I would be weeping.

As a father I am humbled to have an eldest son (and two other kids as well) that understands the most important aspects of life: to love, to share, to look out for one another, to smile, to remember, to befriend, to care.

I would be weeping; but when I see my child, all I can do is smile.

I AM AFRAID

You know, I really have almost no fear about terrorists from foreign countries. I know the stats on the likelihood of being a victim, and my odds are very slim. For those whose lives have been affected, I know there is a different perspective. When any of us has our life changed by an event, it heightens our awareness of those types of things. And when they hurt we want to protect ourselves and others from them happening again. So I get why some people feel that way about terrorists, but I frankly don't share that fear.

What I fear far more are the hundreds of ways we are terrorizing each other here in the U.S. As the parent of a young adult with special needs, I am far more concerned with the hatred that our POTUS and cronies are fertilizing in my neighbor's heart and home, and when I'm honest and stop being self-vigilant for too long, the hatred being tempted in my own heart, hatred directed at the vulnerable of this world, and toward the powerful, too.

The tone of voice, the combative posture, the self-righteousness disregard of history, law, and reality, and the impulsively repulsive carnage being imposed into real people's lives is unconscionable. The lack of regard for basic human decency and contempt for those things which are beyond their own experience or far-too-limited capacity to comprehend is vile.

I don't actually hold very high expectations for government in general. I have never believed that our politicians are responsible for granting us the kind of life that, as a Jesus follower, I long for and work for. But there are certain standards of decency, postures of humility, perspectives of compassion, and a respect for humanity that I do believe serve as the hallmark for "successful" government.

Here in the U.S. I have always thought that what gave us our place of privilege in the world should be, and to a large extent has been, these things: decency, humility, compassion, humanity. Clearly we've not been perfect, for the conundrums of politics and nations frequently mean our officials are working in muddy waters. Republican administrations and democratic administration alike, I've felt for the most part that we've at least given it the 'ole college try.

I don't feel that way right now. I feel that our most powerful leaders, and many of us ordinary Americans, are instead more interested in proving self-righteousness, exercising unfettered power, satisfying greed, and perpetuating division.

Like many of you, I AM AFRAID, but what I am most afraid of is what we, of what I, am in danger of becoming. As I see it, the danger is not out there; it's in here - in my heart, and my hands, and my voice, and my actions.

Like each of you who've read this far, I love my family: my wife, our three kids, my parents, sister, cousins, you know, the whole deal. A special needs child has a unique place in the heart of a parent, and our son Ben in ours. But I am afraid for him, not because some terrorist hell-bent on destruction will come for us, but because YOU, yes YOU, my friend and neighbor and sister and brother, may fall prey to a heart of hatred.

It was Peter, one of his closest disciples, that denied Jesus three times. So before you say, "Not me," I implore you to stop, take a deep breath, and examine what is being birthed within you. Resistance is one thing; hatred is quite another.

The policies of our government will come and go. From my p.o.v. it's not primarily the policies that are the problem; it's the hardened hearts that are fashioning them, and the hearts, like yours and mine that are being shaped by them. We cannot give in. We. Cannot. Give. In. - to the hateful and dehumanizing forces that are wrestling for control.

I will start by examining what is within me. I will work, so that love will win. And, with God's help, I will not be afraid.

What an old Honda Civic taught me about how I think about people

I am the proud owner of this 1992 Honda Civic hatchback. It's the simplest modern car a person can own, with a tiny engine and a simple interior. Our one non-negotiable when we purchased it new was air conditioning to combat the midwest humidity. We were especially glad we made that choice when we took it to southern California. It's a five speed manual, and the clutch is original (more on that later).

It's been used gently over its 24 years. There are just over 170,000 miles on it, and for a Honda of this vintage, there is only negligible rust on it. The interior has some tears in the driver's seat, the door locks, having frozen and then broken during harsh Chicago winters, only operate with the key, and the rear window hatch needs to be propped open with a stick,

For its age and life experience it still gets over 30 miles/gallon around town and would probably do better if I felt the need to take it on the tollway. I don't.

At least twice a year somebody comes up to me in a parking lot, stops at my driveway, or rolls down their window next to me at a stoplight and says, "Hey, man! Interested in selling that?" My answer used to be "no." Now I usually give them a ridiculous number (like $6000.00) and then explain to them that it isn't possible to put a value on this little workhorse that, with regular maintenance and necessary repairs, just keeps doing its job.

This week was one of those "necessary repairs" weeks. The starter went out and left my wife sitting at work. I'm not patient enough to make the repair myself, and don't really know too much how to do it, although I'm sure I could figure it out. Instead, I put my AAA membership to work and had it towed down to my trusted guys at Kellenberger Auto. They expertly took care of the starter and it's back on the road. It will need a clutch soon, too, a more expensive proposition, and that got me to thinking.....

When and how do we decide to keep something or to replace it instead?

Jack and Larry at Kellenberger like to say that, with cars these days, the choice is between a monthly payment or the expenses of fixing an older car on a regular basis. Either way there's cost involved in ownership. Cars have to be one of the most resource-exhausting tools in our lives. Often it comes down to fix or replace.

Sometimes we treat people the same way.

Our culture is becoming a disposable one. Lots of things we purchase these days aren't able to be fixed, or the out-of-pocket cost of fixing them outpaces the cost to replace them. I just threw away my toaster oven and got a new one. When something can't be fixed, or is cheaper to replace than repair, we simply throw it away. I tend to think that manufacturers understand this phenomena, and strategically design items in a way that requires consumers to buy more of their products more often. Cynical, I know, but still....

I see this happening to people, too. When they can't be fixed, or their value seems to be outweighed by the challenges they pose, then we get rid of them. This disposition happens in businesses. It happens in families. It happens in churches.

Another spin on the throw-away approach relates to my Honda Civic. Because sometimes it requires a significant amount of effort to repair (a head gasket, for instance), it would be easy to decide to get rid of it rather than repair it. The time and money required to solve the problem overwhelms us and our reaction is to give up and start over with something new(er). There are days, like when it needs a new head gasket or the original clutch is finally giving out, that I feel exactly this way about my Honda Civic. But I also know that with the proper attention that little engine will run for many more years. I know precisely what I'm dealing with. Oh, and I love that little car.

I see this happening to people, too. When it seems easier to replace than repair the person or the relationship we have with them, we get rid of them. This disposition happens in businesses. It happens in families. It happens in churches.

I recently helped my 18 year old son buy his first car. It's a 2014 version of the Ford Fiesta, a stylish and spunky little car. It, like my Honda Civic, gets great gas mileage and comes with strong ratings. With any luck he'll own it for 24 years. But it did get me thinking. Well, maybe not thinking. More like coveting, desiring the hands-free bluetooth connections, the 1.6L ecoboost engine with 197 horsepower, the racing interior, and sports suspension.

We're often enticed by our desire for something new. Marketers understand this, and prey on it. Our consumer economy counts on it. In order for us to have a growing economy, our desire for the new, even when the old still works, must prevail. While the old may still be good and solid, it does not have the appeal of the new, and so out with the old and in with the new.

I see this happening with people, too. When someone new and more exciting comes along, we are enticed and "phase out" the ones who are already here. This phasing out happens in businesses. It happens in families. It happens in churches.

Our relationship between the old and the new is complex. It's one thing to think of inanimate products, consumer goods if you will, and how we covet, care for, and dispose of them (and these things are important to consider!). It should be something quite different, though, when we think about people and the relationships we invest in.

Unfortunately, it seems that there is "consumer creep" in our approach to people. People become a commodity. They become disposable. We treat them as replaceable. They're not.

I understand that it's complicated. I have cut people out of my life for "good" reasons. I have contemplated throwing away lifelong commitments in favor of "newer and better" opportunities. I have fired people from jobs that I knew they needed.

I'm glad I got my Honda Civic fixed again. Today it will get my wife to work and then to the doctor. This evening it will get me to the grocery story and a meeting. Tonight it will sit familiarly in the driveway next to an under-used 2006 Starcraft pop-up camper and a shiny orange Ford Fiesta ST. The family vehicle, a 2006 Honda Pilot, will rest in the garage.

In the morning I'll get up and settle myself into the slightly ripped driver's seat of my old Honda Civic and be glad that I haven't thrown away a quality piece of my life.

I'll be glad that you're still here, too.

On Kindness

Today an envelope with no return address arrived in our mailbox. This is not unusual since many marketing firms use this tactic to draw you into their message. Typically we toss those envelopes aside and maybe, but only maybe, open them days or weeks later.

But for some reason this one seemed a bit more legit. Maybe it was the full salutation to me, my wife and family that seemed a little more personalized. I opened it.

Wow! Inside was this brief note and some cash. As I read the note out loud to Kim, both of our eyes teared up. An unexpected act of anonymous kindness. What a blessing! Our spirits indeed were lifted.

So now I'm thinking about kindness.

There really is a lot of kindness in the world. This article about Rosa's Pizza Shop, where the hungry and homeless can get a pre-paid pizza slice, is an inspiring example of how one person's kindness gave a store owner an opportunity to serve and generous patrons an opportunity to share. All it took was a post-it note or two or a thousand!

This morning while exiting a local coffee shop, someone held the door open for me and my family. There was a second door; we returned the favor. Kindness.

It seems to me that there are different types of kindness. If we pay attention to those around us we can both recognize those acts and offer them ourselves.

One form of kindness is the incidental form of respect we offer to one another as we interact around daily routines. Holding the door, saying "please" and "thank-you," offering our umbrella, speaking gently to one another, and so on, are the moment-by-moment things of kindness.

A second type of kindness seeks to inject some surprise and goodness into a stranger's life. Perhaps this form of kindness is best exhibited in the drive-through phenomena whereby I pay for the order of the person behind me in line. I likely don't know them, will never meet them, and can only imagine the smile it brings to their face (unless of course I'm lingering to watch in my rearview mirror). The drive-through employee actually gets to witness the confusion-followed-by-smile when the customer realizes that they don't need to pay for their order. Often they choose to pass it on to the next customer.

Another form of kindness is also extended to a stranger, but as an act of charity. This type of kindness is the story of Rosa's Pizza Shop. A gift is given with the expectation that someone in need, someone we do not know but who is coming up short in some aspect of life, will benefit from it.

The kindness we received through the mail today is different still. It is intentional anonymous kindness. This kindness is offered when there is specific knowledge of a need of someone we know and we reach out to help meet that need without letting the recipient know who we are. Today's gift came from someone who is aware that both Kim and I have been unemployed. We are so grateful they blessed us in this way. They chose to do so anonymously, but they did so knowingly and as friends.

Some kindnesses are offered in ways that cultivate deeper friendship. These kindnesses are those which we share openly and directly. When a friend delivers a meal post-surgery, that is a kindness which further strengthens the bonds of friendship. When someone offers to keep your kids so you can get out for a mommy/daddy date, or just get some grocery shopping done in peace, that is kindness that further builds a friendship. When your buddy spends a week on your roof helping you re-shingle, that is kindness that cements a relationship.

What other forms of kindness can you think of?

The rhetoric of today's world is often fear, separation, and hatred. But the rhetoric is not the reality. I suppose it is possible to allow the hard rhetoric of division to suck us in, but I prefer to believe that there is more power through simple acts of kindness.

Where have you witnessed kindness today? What kindness have you received today? How have you been kind today?

Thank you to our intentional, anonymous friends! Indeed our spirits have been lifted. And your simple act of kindness has encouraged me to think about how I, too, can be more kind.

Imagine how beautiful our world will be when everyone is infected by kindness and celebrating acts of generosity!

Our Counseling Culture: Saving us or ruining us?

I had been seeing a really awesome counselor for over a year. He helped me work through a bunch of pretty intense and painful things. But then I left my job, and my insurance changed, thus ending my bi-weekly visits. A few months out and I've been reflecting on the role of a counselor in my life, and the role of counselors in our society. Here I'll wonder out loud:

Is our counseling culture saving us or ruining us?

Saving us: why we need these companions on the way

1.  Counselors help us work through some really tough stuff. They may not have seen and heard it all before, but they've seen and heard enough to sit there and take anything we can dish out. Deep grief? There beside you. Burning anger? Got it. Huge questions? Go ahead. Weighty depression? Understood. These trained professionals won't shy away when our going gets rough. In fact, they'll lean in and help us find a way through it, as much as they can.

2.  Counselors are safe. We know that when we share something with a counselor it won't come back to haunt us. It won't be shown sympathy today and then used as ammunition tomorrow. They won't collect our stories and then broadcast them to others. They're not a part of the gossip network. We can say what we need to say, and they will protect it.

3.  Counselors are, as stated in point #1, professionals. At least the ones that I'm talking about are. They are trained and continually monitored to ensure that they are doing good and not causing harm. There is not a lot of room with a professional for "good intentions." They have particular knowledge about how to listen and support their clients, and then know when they're in over their head and need to suggest different help for us.

4.  Counselors keep the focus on us. They make sure that we're doing work on the things that we can work on. Ourselves. There's no dodging our own crap, or ignoring our own goodness. We're constantly redirected to the next level of self-understanding, whether it's encouraging or hard.

5.  Counselors want us to get "better." They really do. I believe they have our best interests in mind. The counselors that I have known have an inherent belief that humans are good, and that even when broken, damaged, or failed, our human calling is to health and well-being. That health looks different for each of us, but our counselor never gives up on us.

Ruining us: why we should think more critically about our companions

1.  By saying that counselors are our "only" safe space, we are failing to cultivate the types of vulnerability required for intimate relationships. Why can't, and shouldn't, we have friendships that are equally safe? What does it take to have friends and communities of people that allow for such vulnerability? Why we are satisfied with and/or resigned to professionalizing our spaces of vulnerability?

2.  If we depend too much on our counselor, then we become lazy. We can get away with not asking ourselves the questions because we expect the counselor to ask the questions. We can stop thinking on our own because our professional will think for us. Yes, it can happen.

3. Counselors keep the focus on us. Here the downside is that we are reinforced in our already-present narcissism. The problems are about me. The struggle is about me. The solutions are about me. But very few if any things are ever so exclusively about me. Of course good counselors help us understand our systems, but they're always our systems.

4.  Counselors rely on our sickness to maintain their financial wellness. This reality is not meant to imply that counselors would keep a client on in ways that are not necessary, or that counselors are money-grubbers. At this point professionalism (and insurance companies!) step up for some checks and balances. But admit it: there is a whole, huge, economic system built on people's pain and fragility. Should our suffering and struggles be an industry?


5.  Counselors provide an excuse to divest from others. When confronted with the anguish and struggle of those around us, we can get away from it by asking, "have you seen a counselor? Maybe you should." Too often I hear this statement as code for "I don't want to deal with you and your stuff" or "I just don't have the time." Come back after you've worked it out with your counselor, and I'll see if I can work you back into my life.


I don't really believe that counseling and counselors are saving us or ruining us. I do know that mine has been a tremendous help to me, and I know lots of people who swear by their counselor. I also know a few people that I think should go see a counselor. In the end I support that counselors can and do play an important role in mental health.

But I also earnestly wonder what the impact is for our culture when it relies so heavily on professionals to help us address our emotional condition.

Maybe I'll ask my counselor. I just got approval from my insurance provider to go see him again.

Maybe, just maybe....

Last evening my lovely wife had her gall bladder removed. After four days of pain and an equal number of sleepless nights, it became clear that her discomfort wasn't simply a recurrence of acid reflux. An early Thursday morning trip to urgent care proved inconclusive and unhelpful, as the diagnosis was noncommittal and there was confusion about insurance coverage (a whole other post!).

After suffering through another pain-filled morning, an afternoon visit to her outstanding primary care physician ended with a drive over to the E.R. to further explore the cause of her symptoms. Twelve hours after beginning her journey of seeking relief, she entered the O.R. with an excellent surgeon, one who had helped her two previous times. The result was the successful removal of a greatly enlarged and infected gall bladder and very large stone.

This morning, the first of her recovery, she is already feeling the improvement. From her previous seven surgical experiences, we know that Kim is a quick healer with a high tolerance for the pain that comes with that re-growth process.

It is pretty easy for me to support the pain of healing; it was brutal to see her in the pain of illness, especially when the cause was yet to be pinpointed.

We all are faced with accompanying someone on their journey of pain. Pain is a part of life. Physical, emotional, spiritual, relational pain sometimes seem to seek us out and taunt us. Sometimes we can move around pain, acting blissfully unaware of it, or pretending that we are unaffected by it. Bearing one another's pain is hard. Just hard. So we only do it as much as we absolutely have to.

There is a lot of pain in the world today. I won't run down any lists, but you've already started making your own in your head. This pain soaks deep into our soul and psyche, and it also sits like an oily skin on the surface of our lives. The pain is private and public, personal and communal. It is a real and unavoidable element of life.

Some of you will know more acutely how hard pain is to deal with. Those of you with chronic health conditions suffer in ways that those of us who are healthier cannot understand. Those of you who struggle financially experience pain in ways that those of us with more resources don't. Those of you with broken relationships and deep loneliness know pain in a way that those of us with strong friendships and intimate companionship don't. Those of you who are discounted and ostracized just because of who you are (skin tone, sexuality, age, gender, education, economics, etc......) know a pain that guys like me who sit comfortably in all the privileged categories will never know.

But just because we don't know firsthand the pain doesn't mean we can ignore it. Our privilege does not give us the luxury of brushing aside the pain and suffering of those around us. Kim's agony made me uncomfortable, but I was not going to walk away. I could not take it from her. I could not feel it with her. I could not understand what pain of 10 on the 10 scale meant for her.

But I also could not avoid it, and I would not avoid her. All I could do was stay at her side, hold her hand, advocate for her care, tuck in her sheet, pray for her, and assure her that I would remain right there at her side.


This posture toward pain is not obligation, duty, or a strategy. It is compassion.

Our world is in pain. We know it in our families. We live it in our church. We fear it in our politics. It is right beside us each and every day, seemingly ready to overtake us. Often we can't fix it. Mostly we don't understand it. Usually we try to avoid it.

But maybe, just maybe, we could start by meeting the pain with more compassion. And then maybe, just maybe, we'd wake up on a Friday morning with a different kind of pain, the pain that tells us we're finally starting to heal.

Where love is

Our son Ben is 21. He is a joy-filled, loving, social young man. His heart is as big as an ocean. He wants to help people. He wants to serve.

For the last two years he has been looking forward to a week-long volunteer workcamp. In 2015 he registered to attend, but the camp was cancelled due to low enrollment. This year he and I and my dad spent a week at Camp Mardela in Maryland, working alongside other participants in this intergenerational activity to get the camp ready for its summer ministry to kids.

Three generations working together

Ben was in his glory. He helped us split wood.

Ben and his grandpa!

He raked leaves.

Ben loves to rake leaves!

He helped clear trails, paint buildings, and deep clean the kitchen. He participated in food preparation and cleanup. He prayed for a meal and read scripture for devotions one evening.

And Ben did what he does best: he made new friends. Ben is more than just outgoing. He is socially uninhibited, a trait consistent with his genetic makeup known as Williams Syndrome.

Ben also got tired and somewhat ornery. By Friday afternoon, the fifth full day of the camp, his self-control was out the window, and my relatively small attempt at setting healthy limits and redirecting Ben quickly devolved into an angry tirade by our usually joy-filled Ben.

Ben's outbursts are not unprecedented. Because the area affected by his genetic deletion typically provides self-regulation, he doesn't have all the tools he needs to use good judgement, make logical decisions, and connect behavior to consequences, especially future outcomes. When he encounters such a situation, sometimes his frustration boils over, and it's not pretty. While not frequent, such violent scenes repeat with periodic regularity.

When his anger peaks, Ben reveals a very colorful and hurtful vocabulary, no doubt picked up in high school hallways. He becomes physically aggressive, kicking, punching, scratching, and throwing anything he can get his hands on. He is strong and persistent. These are scary moments.

As Ben's parent, these tirades can be extremely disconcerting and threatening. The amount of energy required to stick with Ben through one of these instances is immense. On the last day of a physically strenuous workcamp, my energy was already depleted. Since we were at a camp, my strategy to deal with Ben's rising anger was to get him outside and move safely away from him until he could escalate to his breaking point and ultimately return to what typically follows - a contrite, compassionate young man.

There were six other youth ages 13-17 attending the workcamp, five from one youth group and the youngest from another church. At the beginning of the week I had briefly introduced them to Ben's tendencies and spoke about Williams Syndrome. They were friendly and welcoming to Ben, and Ben has never met a human being he didn't want to be friends with!

I was unprepared, however, for the level of maturity and caring from these young people. I know good kids; my wife and I have a teenage son and daughter in addition to Ben. But I also know that kids can be unpredictable. These kids were both those things: good and unpredictable.

As Ben sat alone at a picnic table working through his anger, first one, then another, and then finally the whole group of youth gathered around him and "loved on" him.

I was overcome by tears. These amazing youth surrounded Ben with patient support and caring. In those ten or so beautiful minutes, they demonstrated everything anyone ever needs to know about Christ-like love and compassion. Their simple act of friendship lifted Ben, and broke me.

This is what welcome looks like. This is inclusion. These are simple acts of kindness done toward the least of these. This moment is a human triumph. Here there are no "special needs," only a friend in need.

Thanks, kids, for relieving a weary dad, and for being a friend to Ben! Thanks for sharing the love.

Maybe the rest of us can go and do likewise.

Is THIS Normal?

Well, today Ben went back to school and Jon is back to work. There is much to do: projects to complete, contacts to catch up with, staff colleagues to reconnect with, travel to prepare for and so on.

But here we are, back to "normal."

May our awareness of God be as keen in this normal as it has been throughout the exceptional!

easter

Two of our beautiful children celebrating Easter

Sent from my Verizon Wireless BlackBerry

Easter

What a beautiful Easter day! Ben is home! Christ is risen! The sun shone brightly, and now comes soaking rain. What more is there to say? He is risen indeed.

Friday & Saturday, waiting

Friday was a waiting day. Kim, Noah and Lydia came to the hospital since it was a school holiday. Jon, Noah and Lydia went for a great walk on a beautiful Spring day. We got over to the shoreline, walked in the sand, dipped our toes in cold Lake Michigan, collected a few small shells and stones, soaked up some sun, and breathed fresh air.

Noah went to the Family Life Center after we got back and was tutored in chess by a visiting volunteer. Lydia and Kim went to check out the thrift shop that's across from the hospital, and whose proceeds benefit the hospital.

Kim then settled in for the night while Jon, Noah and Lydia headed back to Elgin, just in time for some Easter egg decorating at church and then Noah slept over at his friend Jason's house.

Saturday has also come and gone, and we're still waiting on the coumadin levels to get high enough for Ben to come home. Kim's still at the hospital. Jon and Lydia slept in for once and did some chores around the house, and Noah played at Jason's. Lydia and dad had an afternoon out to the movies, where we saw "Last Song" starring Miley Cyrus. I thought we were in for a silly children's flick, but instead I ended up with tears through pretty much the whole thing. I guess it hit a little close to home with all the family dynamics and especially the storyline of father and kids.

So now it's time for rest. Tomorrow we get up early to celebrate Easter. We give thanks to God for life and for victory over death. This year the reality of new life is close to home.

May it be real to you as well.

Busy with not much of anything

Hospital stays really feel like they are amazingly busy, and yet here we are not doing much of anything except for waiting. The anticoagulation levels are improving, but not yet where they need to be to go home.

Ben's day was fairly active. He spent most of the morning in the family life center. Hmm. What did he do there? Watched a little of Stuart Little, watched dad draw a picture, hob-nobbed with the other kids and volunteers, did some drumming during "Jammin' with Jim," and played in the teen center.

After the center is was lunch and shower time, followed by tutoring, listening to music, a visit from Pastor Joel and then dinner. He was exhausted and fell asleep at 6:00 p.m.! Let's hope he stays asleep for the night, although I'm sure there will be interruptions: for blood draws, vitals, and an early morning weigh in. Additionally, the baby sharing the room is scheduled for surgery first thing in the morning, so that means no post-midnight feedings, which likely means a cranky baby!

Weather in Chicago was beautiful although quite windy today (surprise!) so Jon got out for a couple walks and a chance to take in the city from the eighth floor of the parking garage. Tremendous view of the city from that vantage point.

Sorry that I didn't get to lovefeast with our church family at Highland Avenue Church of the Brethren, but Kim had a solo with the choir so she took Noah and Lydia and I stayed in town with Ben.

We are getting pretty close to discharge. The blood thinners are closer and closer to their target rates, but my hunch is we're looking at a few more days. Go ahead; prove me wrong!

Blessings to you our family and friends for the dark journey of Good Friday and the bright dawning of Easter this weekend.

Steady

Steady would be the word for today. Not any notable changes.

Ben spent a lot of the day alone, probably the longest time he's been in that position throughout his hospital stays. Wednesday's a work day for Kim and Jon had the last of three days of meetings with the standing committee vision team. But Ben wasn't really alone, since his favorite 5th floor nurse Jamie was in today, and he had a visit with a volunteer who got him onto the computer, and his mentor Scott from church visited in the afternoon.

He was reluctant to get a shower (we know he's feeling better!), so dad bribed him with pizza.

Beyond that there's not much to report. We're thankful for the meals that the church family has been providing at home, and for Pastor Audrey making some time to hang out with Lydia and Noah today.

Healing continues.

Birthday Boy

Today Ben celebrated his 15 years of life! It was like one day-long party. He woke up to a card from the night nurses, then was serenaded by the day crew and volunteers (see picture and post below), then had a visit that included a BIG balloon and cake with our friend Chris, a shower, and then a concert with the Chicago area band The Ginge (that included photo ops and autographs!). Insert a bunch of phone calls from family and friends, and it was one gloriously full day.

The only down side to Ben's day would have been that dad had to leave a while for a meeting in Elgin, mom had to work and has a cold that kept her away, and Noah and Lydia had school so didn't get to come in either. But we'll all celebrate when Ben finally gets home again.

So, getting home.... On the medical front they are still trying to get his heparin level up to where they want it, and at the same time are starting to switch him over to coumadin. It mostly means a slow, careful process of i.v. fluids, blood checks, and pills. Word on the street (or at least on five west) is that we're here through the weekend.

We'll stay as long as they insist; just don't make us come back again!

As I've said before, we are just really thankful that Ben is even around for his 15th birthday. God's given us a precious gift that takes some tending, but the smiles and joy are worth the effort! We lift a prayer of gratitude in harmony with our continued prayers for healing.

Happy Birthday, Ben!!

Happy Birthday Ben!

He woke up to this greeting from the 5 west nurses and staff! Nice!

Sent from my Verizon Wireless BlackBerry

Feeling good

Ben wants you to know that he's feeling good. He's talking constantly, ordering his next twelve meals, and plotting his future activities like work camps and drum accessorization.

From the parental perspective things are stable. He's still on his heparin drip, although they had stopped it temporarily last night because they got a low reading on his hemoglobin. Apparently it was a tainted sample because the levels are back up. They're also transitioning him to coumadin, which he'll go home on and remain on for several months.

Visually it looks like the swelling in his calf has gone down a little, although the thigh still seems to be swollen. He says it doesn't hurt any more, which is a good sign.

Kim spent last night and today at the hospital. Noah and Lydia headed back to school after their Spring break. Lydia's still carrying the burden for her brother, most noticeably in her belly. But she had a good day at school, especially in her art class where she got to color a chameleon. Jon spent the day working and in a meeting at the office, and is going to spend the night with Ben.

Tomorrow Ben turns 15. We're just thankful that he's completed the fifteenth year! We look forward to a strong, healing start to the 16th.

Semblance of routine

We brought Ben home on Wednesday. He is doing well. Eating, eating, sleeping, eating, eating, walking, talking, eating, playing drums, eating, sleeping. Well, you get the picture. I think he's trying to re-gain his 20 pounds in one week! Today Kim said he wanted to help work in the yard, but grandpa convinced him to take a walk instead, after which he was so tired he slept the rest of the afternoon!

On Wednesday evening Lydia complained of not feeling well. On Thursday morning she still didn't feel well, complaining of pain in her stomach. She was so pathetic, crying and moaning, "Daddy, it hurts" over and over. So, instead of my first day back to the office in quite a while, off to the doctor we went. Our regular doc wasn't in, but Dr. DiMarco was wonderful with Lydia. The short story is that Lydia seems to be carrying the stress of her brother's health crisis around with her in her stomach. Official diagnosis gastritis.

The longer story is that I hope Lydia doesn't need serious medical attention any time soon. First was the trauma of the throat swab to check for strep. Then followed the suggestion of taking blood, which simply provoked a series of shrieks and cries. Since there was some concern about possible appendicitis, a CT scan was in order. Since her belly hurt she wouldn't drink the contrast, so they had to use an i.v. More shrieks and cries, but eventual concession. I know this is scary stuff for a nine-year-old; it's just so different from Ben who would simply hold out his arm.

At the conclusion of the CT I suggested that the i.v. line remain in so that the doc could get her blood from it. They agreed, which then led to a great adventure since none of the medical equipment was compatible. The tech in radiology finally came through with a strategy, and they were able to draw blood without having to stick Lydia again. Again, the good news was that there were no major issues found.

From a dad's standpoint, I must say that it took all I could muster to remain compassionate and patient with the prospect of yet more medical tests and issues with our kids. I think I did OK, but it took a lot of conscious effort, simply because I'm so tired of hospitals, doctors, and my kids hurting.

The other thing that Lydia not feeling well reminds me is that even though Ben's out of the hospital, he still has a long way to go, as do the rest of us. Lydia and Noah have experienced this trauma just like the rest of us, and will continue to recover along with Ben. Thankfully grandparents have been around to help them through it. Same with Kim and me; it'll take some time to recover from all this stress.

"Normal" still feels like it's a long way off. Once again I'm on the road for some work-related meetings, which is a taste of normal, but it's still engulfed by this last month and a half of focus on Ben. We continue to rely on the strength of God through Jesus, and the beautiful family and community of faith that has sustained us thus far.