Gift


This week I found myself again passing along a piece of wisdom and advice to a new friend from a wise old friend. Years ago after major surgery, my friends and colleagues were showering me with food and gifts and loans of books and videos to help me pass the time in recovery. While my friend was making a drop off, I protested how unnecessary all of this was. She stopped me dead in my tracks, asking me what I’d have wanted to do if it was one of them? “Help”, I had to sheepishly admit. Well, she said, then this was my gift to them…letting them help me. I had no good rebuttal.

Exactly a decade later, I again had the chance to practice being on the receiving end when Megan became ill. This time I got my friend’s advice right. So many people, even strangers, stepped forward to help us get through that time that it was almost overwhelming. But I let them. Showers of cards and gifts arrived at the hospital, from as far away as Europe. Peoples of literally every faith prayed for her. A dear friend’s sister-in-law, who I’d never met, became my first and only friend in Little Rock. She offered me clean clothes and a shower, to bake in her kitchen if I wanted, and the healing love of her golden retriever. Though I couldn’t bring myself to tear away from the hospital to take her up on it, it was deeply comforting to not feel alone in that strange city. That generosity repeated itself when another stranger had a care package and helpful advice waiting for us when we transferred to Cincinnati. Another friend texted me nearly every day for the four months in the hospital, just to check in; I’ll never forget that she was always there if I needed someone to talk to. An old friend from my hometown asked if there wasn’t some familiar treat she could send me. My instinct was to say no thank you, I’m fine. But I knew she just wanted to do something, anything. For the next several weeks, I was warmed by her kindness every time I broke into a box of the world’s best cashews. I’d learned my lesson. The year Megan was sick was by far the hardest of my life, and I’d undo all she’s had to endure in a heartbeat if I could. And yet I look back on that traumatic time with some measure of reminiscence for the love that so many showered on us. It’s an incredible reminder in this often ugly world that good and love will always win.

It’s now my turn to pray for and do what I can to support my new friend as she goes through her significant trial. And I’ll continue to pass along to others in need the wise words given to me all those years ago. It’s now my turn to receive the special gift of giving.

“Remember that the happiest people are not those getting more, but those giving more.”  –H. Jackson Brown Jr.

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Changed


Everything changed again yesterday. We’re now two down, one to go, as we moved our middle child into the dorm. We knew she was ready. I thought I was ready.

And it’s ok.

We’ve done this before. We know the change is permanent and that nothing is ever the same again. They’re still your child, and they always come home, but it’s still forever different.

And it’s ok.

Except this is the child who was robbed of part of her childhood. This is the one we came within hours of losing. When you come that close, you forever worry about losing them again. It’s tempting to want to wrap them in a blanket bubble on your couch and never let them go. But that would only rob her again. She deserves to stumble and live and crash and soar. She deserves to be free. I’m the one who’ll struggle. I’ll find a new path, with a new hole inside after the change. I’ll celebrate her victories and try to catch her when she falls. I’ll keep loving her.

And it’s ok. Go take the world by storm sweetie.

“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?”  –Dr. Seuss


Taken for Granted

I once spent some time with a middle-aged Russian woman. We never conversed, and I don’t recall her name. I’d been assigned to work on a project for two weeks in a remote village in Russia, five hours from Moscow. The village of 20,000 in the middle of Russian farmland didn’t have a hotel or restaurant, though we did eat at the local disco one evening (a whole other story). We stayed at the company’s “guest house” (do NOT think plush Swedish villa), and the Russian woman was our cook, laundress, and house cleaner.

I have three memories of her. She was always there with breakfast ready when we awoke in the morning, and again with dinner underway when we arrived back at the house, after we finished our work for the day. Every day but one, dinner was some version of “mystery pork.” Most were fairly tasty if basic, but the other picky eater in the group and I became the “canaries”, carefully testing a small bite before signaling the all clear. Breakfast was generally safer, but I was still really grateful to have 2-3 choices (though also basic) in the plant cafeteria at lunch. I’ve wondered if she always served pork because that was the cheapest choice on an allowance she was given, or if that was simply her only choice at all. By the end of the two weeks, several of my teammates came to believe that she only pretended to speak just Russian, that she really understood some English after all, as she hovered in the kitchen while we ate. We’ll never know for sure.

Though we never spoke, midway through the trip, one event made me decide I liked her. Given the utter lack of entertainment in the village, we hired a driver to take us to Moscow for the weekend. Ahh, to eat something other than pork, and to sleep in a real hotel bed that didn’t resemble a cot, with a heater adequate to keep out the March cold! Before we left for the city, we were told to leave any laundry we needed done on our bed, along with money to pay her to do it. How much money, we asked? Our teammate gave us a rough idea, but it was all pretty ambiguous. I took my best guess, rounded up, and hoped I’d been fair. When we returned Sunday night, my clothes were clean and neatly folded on my cot. Most of the team’s were. But two of our colleagues’ beds were empty. As we compared notes over the next couple of days, we discovered the pattern:  those us us who’d received our clothes immediately had paid her the most, either relative to the amount of our laundry or in total. One of our delayed colleagues, who’d left a respectable sum but also a mountain of clothes, got his back Monday night. She made the last guy sweat it out until Tuesday night, when he was down to his last clean clothes. I like my colleagues, but it was amusing to watch her school us all with a very clear and simple lesson.

But my starkest memory occurred in my last 15 minutes with her. I’d cleared my stuff out of my room, hauling it into the foyer to wait for the driver to take us the long drive back to Sheremetyevo Airport. When I unexpectedly went back into my room, I realized she’d already been there. While the room hadn’t yet been cleaned, I noticed she’d already taken the trash out. Well, some of the trash. What was missing were two unopened foil packages of crumbly Pop Tarts and half of a large chocolate bar I’d purchased in Moscow, still in the wrapper, displaced by my Moscow souvenirs. 

She took my used food. 

From the trash.

Items of literally zero value to me were worth taking from the trash to her. It was a jolt reminder of how much I take for granted in my very comfortable life. We’d struggled sometimes when I was a kid, but I never went hungry. I’ve never taken food out of someone else’s trash. In that instant, she gifted me with an even bigger lesson, one I’ve not forgotten in the years since. I’m so very blessed. I pray that she and her family are as well.

“Abundance is not something we acquire. It is something we tune into.”  –Wayne Dyer


Tribute


It’s happened again. Though Megan’s been in remission for going on three years now, I’ve stayed connected to the HLH and histiocytosis Facebook communities. I do it to pay forward the life-saving support I received when I was suddenly thrust into the “most wonderful group nobody ever wants to be in” (as some have called it). The group saved my sanity at a time that was in great jeopardy, and so if I can help some of the terrified and bewildered newcomers with a two minute message, it’s the least I can do. But as has happened far too often over the last three years, tonight I opened Facebook and learned that another precious little soul had lost his battle against that vicious killer.

“Baby” Leo was no longer a baby. A 5-year-old who loved Spider Man and nacho cheese Doritos, Leo had two bone marrow transplants in his young life, and spent more of that life in hospitals than at home. No one except those who’ve faced a BMT knows what horrific stress the process is. In addition to the very serious medical risks, you’re basically told to pack for the hospital for 6-12 months. How in the h%## do you pack up your life for 6-12 months? But BMT’s are only done as a last resort. When that’s your family member’s last resort, you simply go home and pack. That’s been baby Leo’s and his mother’s life for most of at least the last three years.

If it sounds like I know Leo and his mother, in a way I do, and in a way I don’t. I’ve never met either of them; they live in California, and I live in Arkansas. But for the last three years, I’ve followed their journey with both fear and hope. I saw pictures of a little boy’s signature thumbs up. I regularly “liked” his mother’s updates and commented encouragement from time to time. I followed his ups and downs, noticing that if the news was good, the posts were more frequent. When there’d been no news for awhile, I learned to dread the next update. I prayed to God for Leo’s complete recovery many times. Today, at 5:06 a.m., little Leo’s journey ended, and I find myself again sobbing for an innocent child I never met.

As grossly inadequate as it is, this is my tribute to Leo and his brave mother. I need her to know that her son, in his too-brief life, made an impact on a stranger. As I hoped and prayed for Leo, little Leo gave me hope right back. His thumbs up, smiling pictures were the pictures of a fighter. He survived challenges that those of us who knew how bad the bad news was didn’t think possible. And his mother…she was my hero. Always finding the positive, even in the tough times. Always fighting for her child, always working to give him a good life, in spite of the monstrous crap histio puts your body through. You are both my heroes. I am so very sorry for the loss of your Leo. It’s the world’s loss. What’s left now are the memories of an unforgettable little boy, and a faith that God has healed him completely at last.

“And tonight I will fall asleep with you in my heart.”  –unknown


Comfort Zone


I learned a long time ago that my comfort zone is like a box with movable sides. If I stay comfortably inside my box, over time it slowly closes in around me, becoming steadily smaller. I find it critical to routinely push myself outside my box, pushing the walls out with me. By now, it’s a predictable, inevitable pattern.

It’s been awhile since I’ve pushed my box out in a big way. Three years ago, the sides of my box were abruptly yanked away altogether when Megan fell ill. Every day brought frightening new experiences, and for the first time in my life, all of my energy was needed just to keep everything from flying apart. Then just as things began to calm on that front, I changed jobs; that was plenty for awhile. I’m starting to feel rested and stable…not yet too stable, but I know it’s coming. 

I always need a next frontier, but I no longer have any idea what the next one might be. I’ve got a few loose ideas, but nothing that’s grabbed me yet. Guess I’ll have to take the small opportunities for awhile and wait. Patience has never been my strong suit…I may have to make something happen. I hear you can now take tours of Chernobyl…that should do it.

“The risk of a wrong decision is preferable to the terror of indecision.”  –Malmonides


Worry


A dear friend at the opposite end of the political spectrum and I had a restrained political discussion this week, and she left me thinking. At one point I told her my greatest fear was that the America we all love may be gone forever. Ever since, I’ve been trying to articulate an answer to the question she asked me in response: Is it fair to say that we may love different things? That’s a good question. I don’t know what others love about our country, but here’s what I’m worried that we may be losing.

• 98% of the world’s climate scientists agree that our actions are permanently warming the planet. I worry that stepping back from leadership toward solutions, at this critical moment in history, could take us past a point of no return, leaving our children and grandchildren dramatically worse off in a more dangerous, unstable, and unhealthy world.

• I worry about returning to the not-so-distant past, to a time when healthcare was inaccessible for tens of millions, and even a modest health issue meant an inability to retire, bankruptcy, or even premature death.

• I worry that the current onslaught against a free press so rightfully protected in the First Amendment will permanently damage its ability to act as a check on power and corruption in our government.

• I worry that the flood of unlimited dark money in politics since Citizens United increasingly shows our elected officials more beholden to the rich elite than to those who elected them to represent our interests. I worry this stranglehold is becoming so entrenched that We The People may never get our government back, becoming just another in a long line of corrupt governments from history that our Founding Fathers tried to guard against.

• I worry that the more the checks and balances established by those same Founding Fathers are tested, the more we, to our horror, will discover how fragile they always were, further emboldening those same corrupt leaders. See above.

• I worry that a narcissistic, thin-skinned President who appears to have no interest in studying and learning the lessons of history, let alone avoiding repeat of them, will impulsively commit us to a dangerous war over some perceived slight to his fragile ego or his insatiable desire for “ratings”.

• But most of all, I worry that we are losing any aspirations of One America, that we are stoking the rhetoric of “us and them” to the point of turning our back on our legacy as a country of immigrants; that we’ve lost the ability to compromise for the greater good, so foundational to our form of government; that we’re no longer striving to be Reagan’s “shining city on a hill” and will look the other way from hate and violence against anyone “other”, be they Jew, Muslim, LGBTQ, black, Hispanic, libtard, or Repuglican.

Though not a complete list of concerns for our country on this 4th of July, these are my big ones. So, do we love the same things about our country? What’s on your list?

“When the people fear the government, there is tyranny. When the government fears the people, there is liberty.”  –Thomas Jefferson


Walking In My Shoes


I have a $5.87 pair of Walmart tennis shoes full of memories. I can’t seem to part with them, though I’ve gladly purged everything else associated with that dark time. I instead occasionally choose them from the closet, strap them on, and begin my trip down memory lane.

Three years ago this month, I took my baby to the ER after dinner. After ten trips to the doctor and countless tests and scans in the last six weeks, we still had no answers, only agreement with a mother’s diagnosis that she was very sick. We’d watched her mysteriously but steadily deteriorate until that night, when we made yet another desperate attempt to get her help. After a couple of hours at the ER, we got our first distant hope of an answer, from a doctor who said she needed to be at Children’s in Little Rock. He saved her life, the first of several times to follow. After another hour waiting for an ambulance, I learned there were none. How does an entire region of half a million people run out of ambulances? At one in the morning, I signed her out of the ER against their wishes, gassed up the car, and started off on the three hour drive. We arrived at Children’s at 4:30 a.m. with the clothes on our back…we were finally going to get her answers and relief. It ultimately took another two and a half weeks for those answers, as she careened to critical. Complete treatment was still months away. I knew none of that yet when I found myself at Walmart, 36 hours after driving to the ER, needing everything from a toothbrush and toothpaste, to a jacket in July and warmer shoes than my little slip ons, since they keep an Arctic temperature in hospitals. The cheap tennies fit the bill, and I’ve had them ever since.

As the months went by and remission kicked in, our worry began to fade that we’d need another sudden run to the hospital. We finally unpacked the overnight bags we’d kept at the ready for so long; the shoes now sit next to their colleagues in the closet. When I now occasionally pull them out, they take me back, to a time of crushing fear and stress. But somehow they haven’t stored up any residual bad feelings. Instead, they remind me of how far we’ve come, of what we survived. The memories aren’t good, but the ending was. I learned how strong I can be when I need to, which is useful, because I know the day will come when I will need to be that strong again. When I do, the shoes will be there to remind me that I can.

“Life is tough, my darling, but so are you.”  –Stephanie Bennett Henry