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


Driveway

 

We all have those moments that we wish we could do over again. One of mine was a time that I couldn’t stop myself from crying. Almost any mother would have at that moment, but I still wish I hadn’t.

Bryan left home for college five years ago this summer. We didn’t know it at the time, but it was to be permanent. We packed up two cars, his full of his stuff, and ours for the rest of us, and we headed out on the 600 mile drive. It was hot and chaotic hauling all of his stuff from the car to his dorm room in the August heat of Kansas. Once everything was deposited, the mother in me wanted to stay and arrange his new home into a home. The teenage boy in him didn’t. All too soon, we ran out of excuses to linger, and he walked us to our car. I knew better than to cry, but at the last minute I couldn’t help it, which got him going, too. I had wanted his first moments of independence to be full of excitement and possibilities, not tears. I consoled myself for my weakness…at least he knew that he was loved.

A couple of weeks later when my mother asked me how I was doing with him gone, I told her pretty good, though I certainly missed him. She then said something that I’ll never forget:  that it was still hard for her every time we pull out of the driveway after a visit. That was over 25 years ago! This was an unexpected blow. I had somehow naively expected that this change was a temporary adjustment that I would work through, not unlike the sting after a shot. But my mother was telling me that this new, empty hole inside of me was permanent. I have been grieving this loss ever since.

Of course I want my children to grow up and find their way. I really don’t want them to live at home forever. But that doesn’t mean I won’t always and forever grieve the loss of no longer being in the nucleus of their world, and them in mine. It’s now the girls’ turn to race headlong toward the rest of their lives. I am so proud of the people they are becoming and super optimistic for what’s in store for them. And yet, in the back of my mind, I quietly dread the day that they, too, pull out of the driveway for good. It’s a reminder to make the most of today, while their dirty socks are on the couch and they leave a mess in the kitchen. I love the chaos and the noise of today, and I sure love them.

“Where we love is home – home that our feet may leave, but not our hearts.”  –Oliver Wendell Holmes, Sr.


Healed


I’ve started working on my book again. I haven’t touched it in exactly a year, by far the worst year of my life. It may not sound like a big deal, but it’s huge…it means I’m healing.

When you go through a crisis, you go into survival mode. I’ve never had to operate from there before. Many of you reading this will know what it’s like, having been there yourselves. Sometimes I’m almost ashamed to admit how difficult it was for me – after all, it wasn’t war, or holocaust, or natural disaster, or any of the other extreme hardships we read about in biographies. I never went hungry or lost my freedom. I was with my family and friends through it all. I had money. It couldn’t have been that bad.

All I know is that it was the hardest thing I’ve ever been through, wondering if we would be a whole family when it was over, wondering if our daughter would be coming home. Wondering when we would all be together again, leading our normal lives. Wondering if I was strong enough to get her and me and all of us through it, having more than a few moments when I wasn’t.

It has taken a long time to feel normal again, longer than…well, I want to say longer than I expected, but it’s not like I had any idea of what to expect. Regardless, it’s only this week that I’ve felt like picking the book back up again. I’m beyond grateful to my co-author and friend Christine for her patience with me at this long pause. We’ve done good work, and now it’s time to finish the job. Our goal for this book all along has been simple:  to change the world, or at least the corner of it that we touch. We want to empower people to own their careers, to not allow the failures of corporate America to suck the life out of another soul. I now feel strong enough to pick that torch back up and do what I can to help others. So many helped me to heal this past year; it is now my turn to try to return the favor.

“I think writing really helps you heal yourself. I think if you write long enough, you will be a healthy person. That is, if you write what you need to write, as opposed to what will make money or what will make fame.”  –Alice Walker


Marathon


The older I get, the more I realize just how much life is a marathon. The miles, the wear and tear, the exhaustion. I’ve never run a real marathon, but I think before it’s over, we all have.

Every year I’ve lived has been different, but patterns of sameness have emerged. The years of grief or overwork or stress become familiar. With time and repetition, we learn that we will survive this, too. Sometimes the discomfort is enough to make us change our circumstances, but mostly we just learn to endure.

Endure. That’s the key to a marathon and to life. The silver lining to it all is the love and the beauty which we encounter along the way. There is never enough of either, but their powers are so great that only small glimpses along our path – a lone daffodil, the silvered outline of a cloud, the warm smile of a familiar face – are generally enough to sustain us. Without them, it would be only a long and brutal journey.

I have learned that I need to continue to hone my ability to notice these blessings, as I find it far too easy to focus on the exhaustion and the stress. But the beauty and love are there, if we only remember to look for them and remember that we, too, have the amazing power of bringing them to others on their own, long journeys.

“Perseverance is not a long race; it is many short races one after another.”  –Walter Elliott


Visa

Connectivity issues caused a week’s delay in this posting – cheers!

 

I’m 24 hours post one of the more stressful starts to a trip I’ve had. I arrived at my local airport a full two hours ahead of my flight to Sydney, my first trip to Australia and a bucket list destination. I normally print my boarding pass at home, but this week was crazy, and I didn’t even think about it until I was on my way to the airport. I didn’t really worry since I’d left in plenty of time, and our small airport is usually pretty quiet. I didn’t worry, that is, until the desk agent asked me for my visa. I need a visa for Australia? Surely my company’s travel agency would have told us that we needed one when they booked our tickets…right? No. All three of us were hosed, I was just the first one to arrive at the airport and discover it.

Luckily it turns out that you now can get an electronic visa approved “immediately” online for Australia. But that wasn’t clear for much of the two hours that were burning toward our flight’s departure. Through nine calls on my speaker phone in a loud airport while frantically filling out the online form and praying that the “instant” approval would be instant enough, we wondered if we’d be spending our weekend on a plane or with our surprised families. The ending:  I’m writing this on the plane, we made it.

Clearly, I learned a lesson from a mistake that I wouldn’t have made back when I was regularly traveling internationally. But as I typed and dialed and frantically tried to make the trip happen, I couldn’t help but remember my most stressful start to a trip that this small visa glitch couldn’t touch. We’d been dropped at the Guangzhou airport 15 years ago by our interpreter who had to leave us at security to bring our oldest daughter home from China. We’d spent the entire morning of the previous day filling out a ream of paperwork, then walking over to the U.S. Consulate to get stamps and signatures and pictures which would allow her to enter America. The agency carefully checked every page to ensure that we’d followed their meticulous instructions to the letter. They placed everything we needed – about three inches worth – in a manila envelope, sealed it, and told us not to open it until we got to the airport. They showed us a map of the airport and walked us through every step of the process, as we’d be on our own then. I put the remaining four inches of paperwork that I’d collected at every bureaucratic stop of our journey into my checked bag so that I didn’t have to lug it on my back halfway around the world. After two weeks away, I was very ready to go home with our new daughter.

The airport process went exactly as they told us that it would, including the harassment from the “bag wrappers” who wanted to shrink-wrap our bags to justify charging us a pittance. It was hard to ignore their persistence, but thank heavens I did…other parents in our group gave in. We got to the counter, broke the seal on our envelope, and handed the agent everything. After an extended time ruffling through each paper, she became very agitated in Chinese. Of course I had no idea what was wrong, but through hand gestures, I eventually realized that something that she was looking for was missing. I watched as all of the other parents and their new children were gradually processed and moved on toward the gate. The agent fetched a man to look through the papers; he fared no better, chattering to her the whole time. As I watched the scene unfold in horror, I realized the gravity of our situation: our translator was gone. We had used all of our local currency and had no usable money. This was before the era of cell phones, but I had no phone number to call anyway. I was sweating profusely, the adrenaline rushing big time.

I suddenly remembered the four-inch stack of papers in my checked bag! I rescued it just before the bag moved away on the conveyor, and handed the lot to the two animated agents. Within two minutes, they located the missing stamp and moved us through. The other parents broke out in applause when we arrived at the gate, just in time to board. I spent the next 30 hours in those sweat soaked clothes, including nine hours of the 14 hour flight with our new toddler crying, unappreciative of being cooped up on the last row of coach in a loud plane with these strange new people. I lugged all seven inches of that stupid paperwork, at least five pounds worth, on my back for the next 30 hours, afraid to turn loose of anything that would prevent us from getting home. I was utterly exhausted.

If I reflect, I have other travel stories that were actually much scarier in terms of what could have been, but none more stressful at the time. I suppose that’s why I took this latest little hiccup in stride. Either way, it was going to work out. After all, it would have also been nice to kiss my family goodnight and sleep in my own bed. Instead, wish me luck sleeping on the plane. Sydney awaits when I awake!

“A good traveler has no fixed plans, and is not intent on arriving.”  –Lao Tzu


Easter

We love Easter. Easter is a time of hope and rebirth. Spring is in the air, the weather warms. But this Easter is especially poignant for us.

Last September, Megan had passed through the valley of the shadow of death. The chemo had done its job of arresting what only a decade ago would have been an inevitable, tragic conclusion. The worst danger had passed, yet all was not well. Her disease markers indicated remission had not happened. We packed the car with provisions for at least six months and drove to Cincinnati, the doctors telling us a bone marrow transplant was next.

In what I will always believe was a miracle, the doctors were wrong. We checked out only a month after we checked in, with Megan suddenly improving. In the best possible circumstances of transplant, we would have been coming home only now. With any complications, we’d have been there for months longer. A little girl and her mother that we met have been there for two and a half years. We are beyond blessed.

As spring and Easter have arrived, I’ve been remembering what could have been. We’d have gotten through it, as people do when they have no choice. Instead, we will dye eggs and decorate Easter cookies and plant our garden. We will laugh and eat a ham dinner together just like it’s supposed to be. But I will also remember those still fighting, still separated from home and family. And I will pray for them to receive the Miracle that we celebrate today.

 “And they found the stone rolled away from the tomb, but when they went in they did not find the body of the Lord Jesus.”  –Luke 24:2-3


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