Tired.

Facebook wanted to know what's on my mind.

At the moment I'm just sitting here being verbally abused by a 25 yo son who has no genetic ability to reason and refuses to do the things he needs to do to be safe and well (you know, like not go outside in a thunderstorm during a severe heat warning).

Lately, though, I'm feeling an exhaustion like no other exhaustion I've ever felt, and not the good kind.

I'm not sharing this for sympathy. It's nothing new. Tired's been piling up for years. It's the daily life we have.

        But here's the thing.

If you think you "know" what other people's experiences are, like white folks knowing black folks' experiences, or single folks knowing parent-with-children folks' experiences, or urban folks knowing rural folks' experiences, or neurotypical parents knowing what it's like to be a special needs parent, or doctors and nurses caring for Covid patients when you're not even a medical professional, or ..... then you aren't really paying attention.

If your m.o. is to evaluate and judge people whose experiences are vastly different than your own based primarily on your own experiences, then you have a lot of growing up to do. If you think that you "know" something about someone's situation but you've never walked a mile in their shoes, let alone taken a stride nearby, then your privilege is definitely showing.

You may dismiss or mock me and my white male privilege for being tired, and I get it. Really I do. Plenty of people have told me to "get some rest," "take care of yourself," or just "suck it up." But before you do, maybe you could come lace on my shoes.

If your experience or ideas require you to invalidate another's, your understanding is wrong. And if your primary way of moving around in the world is with disdain and dismissiveness toward people and movements and principles that you don't even understand, your memes aren't worth the bytes they're lighting up.

 As for me, I am tired.

Tired.

    ... of Covid-19. Tired of people dying.

        ... of threats. Tired of self-righteous saviors.

            ... of incompetent leaders. Tired of politics.

                ... of self-interest. Tired of broken systems that refuse to go.

        

                    ... of being angry. Tired of being scared.

                           ... of my Christian faith being used as a weapon.

                                ... of patronizing do-gooders.

Tired of being tired.

And yet, my exhaustion pales next to how tired those whose very lives are always at risk must be. I can only imagine, and learn, and show compassion, because I will never know. I can contribute to what changes I can, and refuse to leave those who are weary to just make it on their own.

I may be exhausted, but there's still work to do. It will be easier if we do it together, especially in these days with physical distancing and unclear futures.

What's REALLY on my mind, Facebook? All these things, and more.

But right now I'm too tired to write another word.

You don't understand, and I don't either

Today is day 2 of week 6 of me and our son Benjamin practicing physical distancing. My wife's not far behind, checking in at the start of week 5. Our two other young adult children have had to adjust, too, one moving home for web-based college courses and weekends as an "essential" worker, and our other a full-time "essential" worker. Both are retailers that happen to sell groceries.

This whole Covid-19 thing is hard for everyone. Many of you still have to risk your health and the health of those you love in the workplace. You do this in service to your fellow humanity, and we're grateful. Many of you have suddenly become work-from-home employees. Within your personal family space you're now expected to carve out protected turf and hours for your employer. Many of you are unemployed and are spending your days navigating systems that were not designed for the stress of this time: unemployment, health insurance, debt load, etc.

Many of you have become instant home-school parents. Coupled with the above realities, it's really too much to expect any reasonable human to manage. Some of you are suddenly alone, distanced because you are single, or sequestered because you live as part of a particularly vulnerable community. Too many of you are facing long days with partners who are uncaring at best, hurtful at worst.

Some of you have lost loved ones. We've all lost admired ones. Some have been ill and have recovered. Some are ill now and fighting, struggling. We all have reason to wonder.

We're in these strange and anxious times together. Whether you believe that Covid is "real" (and I still can't conceive of why anyone wouldn't) or are convicted that it's some great political scam being pulled on the globe (check your sources, please), we all share in the frustration, awkwardness, and tension of the time.

Most of us have some mental frameworks to apply to this crisis. Those frameworks may be inadequate. They may be unsatisfactory. They may not be the "right" ones. But as neurotypical folks, we have ways of making uncomfortable sense of what's going on. 

My son with Williams Syndrome does not have those mental frameworks. The foundation for those frameworks is literally missing from his gene array. His gapped-out seventh chromosome mind has nothing to hold these days together with, and the things that typically provide a substitute for that logical shape are essentially taken from him. Physical distancing has eliminated the few "tricks" we have to keep the peace and provide at least a limited amount of focus for each day.

What's that look like? Well, for the last three mornings it looks like 4:30 a.m. attempts to head outside in order to watch the workers renovating a nearby building, followed by repeated battles to keep him safe and redirected throughout the day. The battles are epic: he has a colorful vocabulary and somewhere along the line has learned effective insulting. He's threatening, and there's enough history to know that he's not just bluffing. His head-strong willpower is fueled by a very real inability to understand any logical argument. His frustration leads to anger leads to..... well, lots of things.

Three days ago the police met him on the street. Through a story told by Ben and an interpretation rendered by the officers, he ended up in the back of an ambulance and bay 14 in the local ER. None of it was remotely necessary, and with Covid 19 on the loose, fairly troubling. But this was the result of an anxious and confused adult who doesn't understand what's going on. You decide whether I'm referring to Ben or the officers.

The truth is, I don't understand what's going on either. I'd love to write like so many encouraging blogger-parents of kids with special needs that the joys far outweigh the trauma, that I have learned the intended lessons of grace, and that somehow I have discovered powers that I never would have known I had if it weren't for parenting Ben.

Sure, some days I feel that way. But not today.

Today I see that my mental and spiritual frameworks don't satisfy my need to make sense of our family in the midst of this crisis. I realize that pandemic distancing mostly reflects a daily reality for Ben and me and reflects many points in our family's social history. Uncovered within me is a level of frustration that has the potential for violence. Today my compassion and patience have very real limits.

I am angry. I am sad. I am overwhelmed. I am exhausted. And largely I am, like a lot of parents with developmentally disabled kids, lonely.

I'm not writing for sympathy or for "help." I'm writing so that you who have no idea what it's like to parent a developmentally inhibited adult child can hear the raw and painful truth. I'm writing so that those of you who are facing your own new challenges (and maybe even demons) during these days will have the courage to recognize your (ugly, confused) self and trust the truth of your situation. I'm writing so that we might consider how our own privilege and perspective is never definitive for someone else, but is imperviously representative of the truth we carry in our own lives.

For my fellow sisters and brothers in the Judeo-Christian faith story, this is a Psalm 22 moment. Please don't try to religious jargon it away. Yes, I have faith and a relationship with God through Jesus. It's a real one, and a lifelong one. But it's messy, and today that's the best I got.

Sometimes the hardest thing to admit is that we don't understand, that all the books we've read, lectures we've attended, sermons we've internalized, podcasts we've listened to, classes we've taken, and experiences we've had haven't actually prepared us for the physically distant space we're in. 

Right at this moment, that's exactly where we are.

Ben doesn't understand, and I don't either.  

And that is hard. 

And that's OK. It's all we've got today.

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.

Oh, Say. Can you see?!?

Yesterday I was standing in a gym surrounded by amazing, brave, and loving athletes and their families, ready for a day of basketball.

As we focused our attention on our nation's flag and anthem, I could not ignore the painful irony that this week we will inaugurate a president who shows willful disdain for the very folks who are the best of what these symbols represent.

Also recited in that gym,

the Special Olympics pledge is 

"let me win, 

but if I cannot win let me be brave in the attempt." 

I would love for our son to look at the flag and hear the anthem which calls forth this courageous and honorable endeavor and know that we actually mean it, but instead, what I see and hear is a depraved PEOTUS making fun of the people I love the most, and a cadre of defendants rising in heartbreaking defense.

In spite of all this, we will not surrender hope. 

The love and bravery that filled that gym yesterday will remain undaunted. 

It is love and courage like Jesus - 

big love, 

unconditional acceptance, 

courageous inclusion, 

self-sacrifice, 

quiet power, 

all accompanied by enormous smiles.

There is no coercion. 

There are no threats. 

Bullying is wholly absent. 

Self-aggrandizement is nowhere to be seen. 

Indignant self-righteousness is mute. 

Personal preservation yields to the whole.

Teachers, coaches, volunteers, parents, friends and athletes: 

these are what is good about our world today. 

It is this good which will prevail. 

We are not going away. 

We will not be dismissed. 

We will persevere, with or in spite of or in the face of those who hold structural power.

We will win, and if we cannot win, 

we will be brave. 

Which means in the end we cannot lose the things that really matter.

Oh, say. Can you see? You will.

(originally published as a facebook post on January 15, 2017)

The myth of "self care"

For decades, well-meaning people have told me to take care of myself. Often it's the common, innocuous parting wish, simply stated "take care." When I am not well, it's offered as a more immediate concern, "take care of yourself," meaning "do what you can to become well again." Other times it has been offered as a philosophical admonition to participate in ongoing activities which signify self care: eat right, exercise, rest, love, participate in life-giving activities, pray, etc.

This latter instruction has actually become a nauseating mantra, popularized I think by the baby boomers, but readily adopted by most generations. Not surprisingly, it has also been adopted by the church.

Perhaps the most frequent refrain that is repeated to pastors is "take care of yourself." The line of thinking goes something like this: you have to be responsible for your own well-being, ALL aspects of your well-being. If you are responsible and take care of yourself, you will be a good pastor; if you don't, most likely you'll end up a burnt out, failed, or fallen pastor.

Same mantra goes for parents. "Take care of yourself" so that you can support your spouse better and be fully present in your children's lives. And it goes for us as employees as well. "Take care of yourself" so that you can be at your best when the pressure is on in the workplace.

I believe this sentiment. We need to have self-responsibility. We need to take action in our own lives to support our own well-being.

But I also don't agree with a word of it. Nothing I do is ever isolated enough to consist solely of self-care. If self care were to be true, I wouldn't be married, wouldn't have kids, couldn't be part of a church, couldn't pursue gainful employment, and couldn't enjoy avocations. Unless of course I'm an entirely narcissistic person, which no-one who ever tells me to practice self care would endorse.

The truth is that I get to make very few choices based exclusively on the need for self care. When I make food choices, because I share meals with my family on a daily basis, they are actually family decisions. When I choose to go for a run, I do so with a keen understanding that this choice will affect the daily rhythm of my family's life. When I say I need rest, someone, somewhere is not getting time or attention that they need equally significantly. If I go on retreat, I am shifting the burden of daily responsibility to others.

As the father of a special needs child, now young adult, the idea of self-care is almost laughable. When I run out of energy to deal with Ben, I can't just "turn him off" and go on a retreat. At best my wife and I can secure a respite caregiver to spend a few hours or even a few days without him, but during that time we'll receive at least 50 phone calls from him and live with the lingering fear that something will go dramatically awry. When it does go awry, there is no choice but to deal with it, irrespective of my need to "take care."

As I said earlier, the church repeats this mantra to its leaders all the time. It's one of the cardinal rules of pastoral ministry and church leadership. "Take care of yourself." What I've seen most often, however, is that the church's needs almost always supercede any effort a leader makes at "self care."

What do I mean? Let me count the ways. Financially. Take care of yourself, but we will pay you only what we can, not what you need. Time. Take the time you need for yourself, but only after you have met our needs, and only until we need something else from you (pastors "on call" during vacation). Family. Make sure your spousal relationship is strong, but don't forget you're married to the church. Don't neglect your children, but don't forget they're in the spotlight right alongside you. Spiritual life. Pray, read scripture, retreat, but mostly when it's convenient for us and in the end for our benefit. Behave. Always maintain composure and professionalism, even though the church will protect people who behave atrociously toward you. Play nicely. You must "take care" so that you can function transformatively in an organization that refuses to deal with its own shortcomings, pathologies, and sin.

I'm sure there are more.

I recently wrote a blog post about care. You can read it here if you haven't already. But it's not self care. It's community care. It's friend care. It's the grace-filled care of God.

We DO need to find better ways to take care, to take care of each other. Instead of a congregation telling it's pastor to use his/her vacation, how about building a strategy with the pastor so that the vacation is actually refreshing. Give them extra money to spend. Make sure there are alternative pastoral coverage people in place. Ask them to turn off their cell phone, and covenant not to leave urgent messages. Plan to complete work that needs to be done while they're away, not just put if off to double the load when they return. Mow their lawn and feed their pets. Stock their refrigerator for when they return.



What ways does your church care for its pastor/s? What other ways can you think of? I know some churches are working hard at shared care already. What can we learn from you?

Like I said, my beef with self care is not intended to get us off the hook for making better choices and following through. But I do think we need to examine how our ideas of self care are embedded in our culture's selfish and self-serving defaults, and how self care is at odds with a Christian perspective on relationships. Rather than a call to abandon self care, there's an opportunity for us to pick up shared care. There are lots of words for these alternatives to self care: compassion, friendship, covenant, mutuality, community, love.


It's a very rare day or hour that I feel capable and privileged enough to practice self care. The rest of the time, the vast majority of the time, I absolutely cannot do it alone. I wish we could stop pretending that we can take care of ourselves. I pray that we will stop putting the pressure on one another to take care of ourselves. Instead, let's take care of one another, extending grace and caring support so that together we might be well.

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.

Another NPR story on Williams Syndrome

Gotta love NPR these days. They're giving lots of attention to Williams Syndrome. Check out the latest; brief but informative.

NPR story on Williams Syndrome

Check out this spotlight story from morning edition on NPR that talks about the trusting nature of people with Williams Syndrome, kids like our Ben!

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!

Ben and The Ginge

Here are some photos of Ben's birthday celebration at Children's Memorial Hospital, with entertainment by The Ginge!

OK, so it wasn't just for Ben's birthday, but how was he to know?!

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!!

Ben's party

Ben was serenaded with Happy Birthday by nurses and volunteers. They also gifted him with a rhythm and jam keyboard, a soulful cd, and an electronic math quiz game. I do believe he is becoming spoiled.

Sent from my Verizon Wireless BlackBerry

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.

Laugh or cry?

Are we players in an absurd drama? Ben's back in the hospital for the third time.

Rewind. Saturday was a good day for Ben. Short walks, an outing in the car with gma & gpa, some good naps, a shower, and eating, eating, eating.

This morning was great, too. Ben went with us to church because we all needed to be there, and he seemed up to it. My cousin Joel's choir from El Monte High School in CA were guests in our worship service. They were great! Ben did what Ben does best, mingled with church-goers and received all their well wishes and delight for his healing.

And indeed Ben has been healing, gaining strength. Except....

Except for some swelling in his left leg and complaints of pain when he walked. For a while we thought that it was simply a product of needing to regain strength and tight tendons and ligaments. But today there was noticeable swelling, still pain, and knowledge that our families have histories of clots. Add to all that the fact that because of his bleeding ulcer he wasn't on any post-op blood thinners, we thought it best to contact the doctors.

Jon took Ben back down to Children's where the short ending is that they discovered a blood clot in the iliac vein in the groin. Likely it was encouraged by an i.v. that was located there during/after the ulcer surgery. He has been re-admitted to the hospital where he will receive treatments of heparin for a few days. There is risk in this treatment due to his recent surgeries, but the surgeons feel like he has healed enough to lower the risk of the heparin, and they also don't see another choice.

Kim's back to the hospital for a Sunday night stay. Jon's home with Noah and Lydia and preparing for meetings early this week. It looks like flexibility and prioritization will continue to be the guiding principles this week.

So at this point it's difficult to know whether to laugh or cry. Your continuing prayers are appreciated.

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.