Monthly Archives: July 2017

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

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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