America


I’m especially proud to be an American this week. I’ve always been proud to be part of Reagan’s “shining city on a hill”, even when we haven’t always lived up to our ideals. This week we did.

Our Founding Fathers constructed our Constitution explicitly to protect the rights of the minority from the will of the majority. The unelected nature of our Supreme Court justices, now receiving much attention in the blogosphere, is one of the most tangible signs of this intent. The Founders wanted the justices beholden only to their conscience, not to an election cycle, popular sentiment, or special interests. Our two chambers of Congress, one responsive to the majority, through a need to run for re-election every two years, with the other able to act in longer-term interests, is another part of this design. This protection of minority rights is a crucial component of our national DNA, and, I would argue, is the single most distinguishing characteristic of our city on the hill.

The Founding Fathers understood well the power of the majority to oppress the rights of the minority, so clearly and repeatedly demonstrated in history. They wanted America to be different, to be special. It has been, and it is. Yesterday we demonstrated that yet again to the world, standing up for equality and for the dignity of every human being created in the image of God. Jesus stood for the rights of all, whether or not society agreed with Him; He also modelled overwhelming love. Yesterday, the Supreme Court handed down a decision which supports both love and human rights. Love…and America…won.

“I’ve spoken of the shining city all my political life…And how stands the city on this winter night?…After 200 years, two centuries, she still stands strong, and true to the granite ridge, and her glow has held no matter what storm. And she’s still a beacon, a magnet for all who must have freedom, for all the pilgrims from all the lost places who are hurtling through the darkness, toward home.”  –Ronald Reagan, January 11, 1989 farewell address


MMA


I visited Argentina once. I liked it. The countryside was pretty, the architecture in BA was cool, and the food was great. But the most memorable part of the trip happened before I stepped foot in the country.

As a frequent flier, I boarded the plane early to find room for my bag. I had an aisle seat on the inside section, which had four seats. My traveling companion was a dear friend, and she happened to have the other inside aisle seat in the same row. We sat chatting over the two empty seats between us as the plane filled. As people stopped boarding and our departure time drew near, the two seats between us were still empty, as was the entire group of four directly in front of us. We began to hope that we could stretch out and chat during the long flight. We were wrong.

Just before the plane’s doors closed, the last six passengers boarded as a group. They were memorable. These were six big guys, with shaved heads, muscle tees, and more than a few tattoos. My heart sank as they took their seats between and in front of us.

They weren’t as loud and rowdy as I feared, though it was clear that flying was a novelty to them. I kept to my personal space in my aisle seat as much as one can when the guy next to you (and next to him) is a seat-and-a-half wide. We both tried to sleep, me as much to shut it all out as being truly tired. Finally, about an hour from landing, it got interesting. As breakfast was served, rousing the cabin, my seat mate woke and…changed his shirt! Right there in his seat. As I sat there horrified, fully aware of what was happening, he pulled a shirt out of I’m not sure where, took off the one he was wearing, and put the new one on. I’ve never so desperately tried not to look somewhere as right then and there. But it only got better. He then pulled out a bag of peanuts, again from I’m not sure where, ate half of them, and then offered me the rest. “No, thank you”, I mumbled. I’m good. Really.

At the same time I was earnestly trying to be as distant and alone as I could possibly be in a modern airline cattle car, my friend was chatting up her seat mate. They were headed on to Uruguay. No, he’d never been there. Boy was this a long flight. When she and I finally reconnected in the airport and watched as the burly group went on toward customs, my friend couldn’t wait to have a good laugh at my expense. It is funny now. But who were they, and what in the world were they going to do in Uruguay? For all of her friendliness, my friend didn’t have the guts to ask. I’ve never forgiven her, nor myself, for not asking. Her theory is that they were MMA fighters. I wondered if they were construction workers for some specialized industry. We’ll never know. Which means we can each write our own ending to the story, which, I admit, I like best.

“The best things in life are unexpected – because there were no expectations.”  –Eli Khamarov


Diagnosis

stethoscope

Most people remember where they were when they heard about JFK’s assassination or the Challenger explosion or 9/11. But for us parents whose children were diagnosed with HLH, we’ll never forget the date of diagnosis for our children. The diagnosis was so life-altering that it’s seared in our consciousness, forming the beginning of our shared experience.

A parent on the HLH Facebook support page confirmed this recently when she asked if anyone else remembered their diagnosis date; post after post of date provided her answer. I’ve written about our diagnosis day before, along with all of the important dates leading up to and following it. We’ve already begun anniversarying them, causing me repeated pause as I think about what our lives were like one year ago. At this point last year, we knew Megan was sick, but still didn’t know the upheaval that was coming. That same Facebook page also reminds me how profoundly blessed we are for her remission, as other parents celebrate anniversaries of very different outcomes. I offer them my sincere condolences and then feel terribly guilty, knowing that there is no way we can ever understand why our stories ended so differently.

These sobering reminders leave me feeling both blessed and sad…blessed for our happy ending, sad for others not as fortunate. Guilt won’t accomplish anything, I tell myself. These are the kinds of inequities which pose the big fundamental ‘why’ questions. All I can do is say a prayer for those who have lost and a prayer of thanks for our family. And keep going, determined to never forget how grateful and blessed we are.

“In three words I can sum up everything that I’ve learned about life:  it goes on.”  –Robert Frost


Helicopter


There’s an old joke about a man on his roof in a flood, who prays for God to save him. Soon, some people come by in a boat and offer him a seat, but he refuses, saying God will save him. A little later, rescue workers in a hydroplane attempt to pick him up. Again he refuses, firm in his belief that God will save him, even as the waters rise. Finally a rescue helicopter arrives, again turned away, though the water is now nearly over his roof. A short time later, the man drowns. When he gets to heaven, he exasperatedly says to God, “I prayed to You, and I had faith that You would save me.  Why didn’t You?” God simply responded, “Well, I sent you a boat, a hydroplane, and a helicopter…”

I got a visit this week from a helicopter.

A friend sent me a note which…somehow, from hundreds of miles away…hit the bullseye on a struggle I’m having. Her aim was so dead on that it took my breath away. How did she know, from such a distance, what I was going through and just what I needed to hear? Wondrously, that note was followed the very next day by a note from another distant friend on the same subject. The first note was uncanny; two must be a sign.

It remains to be seen if I can muster the courage to allow these caring nudges to be enough to take the step forward that I’ve known that I need to for awhile. We spend much of our lives wishing for signs to tell us what we should be doing. On the rare occasions that I’m blessed enough to get them, I’d be crazy not to listen. Yet the status quo is a powerful thing. I once read that we only make a change when we’re uncomfortable, whether that’s shifting in our seat or changing our lives. But I got a visit from a helicopter…I’d better hop aboard.

“Chance is perhaps the pseudonym of God when He did not want to sign.”  –Anatole France


Dream


I’ve only ever had three recurring dreams in my life.  Twenty-five years after graduating college, I’ve finally shaken the classic “end of the semester, and I just remembered I haven’t ever gone to one of my classes” dream. Growing up in Kansas, I also had tornado dreams for years, though I’ve never seen one, and I’m not particularly afraid of them. But there’s one dream that I’ve never stopped having–that of rushing to catch a plane.

I don’t understand why this one keeps coming back. I’ve only ever missed a couple of connections, and they were pretty routine. It can’t be a tangible fear, certainly not in the same way a tornado is. I think it must be a metaphor, a symbol for something deeper.

I hate these dreams, even more than the tornado ones, because in them, I’m stressed. I usually don’t know where I’m going, and there’s often a line slowing me down. I know I have barely enough time to make it, if everything goes right. It usually doesn’t. Normally, I get just stressed enough to wake before I see if I’m going to make it. It’s unpleasant.

As I’ve reflected on these vivid experiences, I realize that they describe my work life almost perfectly. I’m generally slogging my way through an unclear path, with plenty of obstacles and not enough time, at risk of not getting where I’m going. It’s difficult to believe that this similarity is a coincidence. I’ve always been high energy, in a hurry to prove I don’t know what, to I don’t know who. I’ve struggled all my life for peace and rest with the status quo. I’ve made progress, but I have as far to go as I’ve come. It’s dawning on me that I may not get there before my journey ends. I don’t know the implications of that fact, but it’s a sobering one that I better figure out…before it’s too late.

“Success is not final, failure is not fatal:  it is the courage to continue that counts.”  –Winston Churchill


Ministry


I’ve always believed that God can use anything for His purpose, no matter how ugly or tragic it is on its own. He is definitely using the Facebook community for those who love someone with HLH. He’s even using me in that venture, something I’d have never expected to be part of in a million years.

I’ve written about this group before – they were a godsend of information and support when Megan was diagnosed with this rare disease. I’ve stayed a part of this online community, even as she has gone into remission. I’ve thought about leaving it behind as we try to move on, but I can’t do it. Being part of this group includes the occasional gut punch that makes me want to throw up, when I read of a new diagnosis or worse. But these people are now a part of my life. I know more about some of them than I do about some I call friends. But there’s more than that to why I can’t walk away:  I feel like I’m serving a purpose there.

I welcome every new member and offer them a prayer, even while I tell them that we wish they had no reason to be part of our group. I comment on the photos that parents share of the children that they’ve lost, telling them their children are beautiful. I use present tense on purpose:  that’s what parents want to hear…for them, their child isn’t gone. And I try to be reassuring when someone just needs to vent. Heaven knows I needed someone to listen to me, back when I was struggling to process everything.

The group has turned into a five minute a day ministry. I don’t know if I’m doing anyone any good with it. Actually, that’s not true:  it’s doing me good. We had tremendous support from family and friends as we went through our ordeal, for which we will always be beyond grateful. Even so, there were countless moments when I felt completely helpless and alone. No one can really be there for you at 2:00 in the morning, when you can’t sleep from sheer terror because the doctors have no idea what is wrong with your child, and you know that she is dying as you watch. No one can remove the stress of managing the details of every day life or holidays with your family split right down the middle, hundreds of miles away. Though we were well supported, I know what it is to feel utterly alone. That’s why I can’t abandon this small group. In ministering to them, I am somehow being healed myself.

“The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing…not healing, not curing…that is a friend who cares.”  –Henri Nouwen


Your Fly Is Open


I once presented to a group with a broken fly zipper. Many people are afraid of speaking to groups–it’s been part of my job for so long that I’m pretty comfortable with it now. Except when my zipper breaks an hour before I’m scheduled to speak.

It worked out OK…I’m pretty sure the audience never knew. You see, I’ve been carrying safety pins for decades. I no longer remember the incident which first prompted that habit, but I was sure grateful that I hadn’t ever given it up, through years of swapping countless purses. “They don’t take up much room, and you never know”, I told myself. No, you don’t.

I was unusually nervous, but I got through that presentation with my broken zipper. I’ve realized that much of life is like that. We stumble through the stress and chaos, sometimes feeling strong and brave, and sometimes facing others with hurt feelings or insecurities, or any of the countless temporary burdens or permanent scars we carry. Sometimes those around us can see our burden; sometimes we can safety pin over it and fool them. As I’ve aged and become more aware of, and even comfortable with, my own flaws, I’ve tried to remind myself to have patience with others. I don’t always succeed, sometimes getting frustrated with them. But heaven knows I have my share of broken zippers…the least that I can do is overlook my neighbor’s.

“Be kind, for everyone you meet is fighting a great battle.”  –Philo


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