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There were two especially dark times when Megan was ill. The first, unsurprisingly, was when she was sickest. You can tell when doctors aren’t sure your child is going to make it from their pained facial expressions and the careful words they choose when they answer your desperate questions seeking reassurance. The other bad time was after she came home the first time, when the worst of the crisis had passed for the moment.

For the first time in the two months since our wee hour race to Little Rock with only the clothes on our backs, we could all eat dinner at home together and sleep in our own beds. It was almost bliss, marred only by the knowledge that it could end at any moment. The next few weeks were a much needed relief, if not exactly normal. There were the grueling, twice a week Little Rock trips for chemo, including one sudden trip by ambulance:  a fever is dangerous in someone whose immune system has been wiped out. But otherwise, we were together and home, beginning to recover, physically and emotionally…until the call. I knew by then what a bone marrow transplant meant. It meant splitting our family in two again, only this time for up to a year. A year of significant uncertainty and risk. A year of juggling holidays and birthdays and school and work. A year of trying to keep things normal for our other daughter. A year of trying to keep myself together, shaky as I was after what we’d already been through. It was a blow that nearly knocked me down. But you do what you have to do, especially when it’s your child. I picked myself up and sadly packed for a year. We drove the 600 miles to Cincinnati and did our best to settle in.

A month later, with Megan improving, her doctor shocked us during a routine check – she could go home! This time the packing and long drive were joyous. We were home, together again. We ate dinner together. We spent the holidays at home. And I told myself that I would never take these simple privileges for granted again, though I sometimes have since then. On this second anniversary of our long drive into the frightening unknown, I am thankful. Thankful for my daughter’s remission. Thankful for the meals we eat together. Thankful for laughter and sharing the small talk of the day. Thankful to sleep in my own bed. My teenage girls already know, from having had their lives suddenly blown up, that boring is good. I am so very thankful for this boring day together.

“If the only prayer that you ever say in your entire life is thank you, it will be enough.”  –Meister Eckhart


Children’s Hospital

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September is Histiocytosis and Children’s Cancer Awareness month

“Children’s hospital” is an oxymoron–not just two words that don’t belong together, but a thing that shouldn’t have to exist at all. Kids are supposed to be the healthiest among us. There’s something not right with whole buildings dedicated to things that go wrong with them.

Children’s hospitals are a bizarre proposition:  a place where the parents are as dependent as their children, depending on doctors for their schedules, their information, their hope. We’re easy to recognize in the halls, even without our special tags associating us with our VIP’s. You can tell us by our not-at-our-best appearance and by one of our standard expressions of fear, worry, or fatigue. We observe an assumed code of avoidance as we pass each other in the hallway:  because we don’t wish to be seen in the clothes we slept in, we grant each other the silent dignity of ignoring each other’s unwashed hair and tear-streaked face. Our zombie appearance barely conceals the grief and guilt and sheer terror on the inside. I often wept uncontrollably as I stepped outside of the hospital during our long stay, temporarily shedding the armor that I wore inside to protect and fight for my child.

Our children’s rooms are places of tenderness, but also of terror, where every day, every visit by a doctor has the ability to change our lives forever. The hallways are no refuge. Here other parents’ children are being moved to their next test or procedure:  bald, staring vacantly, heavily bandaged, hooked up to machines. We passed too many children’s rooms where, day after day, the only visitor was a nurse. A child without an advocate, without love, is the saddest of all.

There are also wonderful stories in these places, stories of healing and miracles and love. These stories must be what makes it possible for the dedicated staff to get up and face each day. Yet I am dismayed that these institutions are needed at all. I look forward to a place and time–somewhere, someday–when no child will ever hurt again.

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” –Revelation 21:4


Rest


Why does it feel so good to lay your head on your pillow at the end of a long day? I understand the biological need to recharge, but why would God have made us so that we need rest in the first place? The Bible says on the seventh day, after He completed His creation, that even God Himself rested. Clearly, rest is good.

I’m fascinated with the concept of rest, probably because I’ve never been good at it. I’ve always been restless, feeling like I have to be doing something. Even when I was just sitting, I was reading. Or paying the bills. Or organizing something. That is until recently. Since Megan’s illness, I’ve slowed down. It was understandable when we were in full stress mode, but it’s lasted. It would be easy to assume that it’s the result of a fundamental change in perspective, which did happen. But that’s not it. Somehow, I’m more tired. I still want to get up and organize the pantry and weed the garden and clean out the garage. But for the first time in my life, I don’t feel like it. I’ve lost something permanent, some reservoir of resilience.

I’m learning that life doesn’t get any easier…it’s been a mild surprise. I somehow had the illusion that one day it would. That once I got through school or established in my career or some money saved that I could relax. But the challenges just mature as we do. And if you’re a parent, then you suffer others’ challenges on top of your own. Yet I’m surprisingly not discouraged by this revelation. In a strangely comforting way, it’s almost a relief. I’d hate to get too comfortable with this hard life. I’m pretty sure that by the time it’s done with me, I’ll be ready to let it go.

“Any fool can face a crisis–it’s the day to day living that wears you out.” –Anton Chekov


Perspective 

I met a remarkable young person recently. A friend of my daughter’s, we visited her in the hospital where she remains months after a horrific car accident which killed one parent and injured the other. In addition to this gaping loss, at 17 she now knows that she will not walk again. It’s more than anyone at any age should have to bear.

As someone who suddenly learned that there is an invisible subculture, hidden and present every day in every hospital in the country, I know what it feels like to have your life turned instantly upside down. I know what it does to your sense of safety and normalcy to spend every day in fear of the doctor’s next pronouncement. To live your entire existence in a 12×20 room which beeps incessantly, with constant interruptions which simultaneously wake you and allow you to sleep. Still, I was a little apprehensive at what we would find on our visit. What do you say to a young person who’s already lost more in her short life than I have in my much longer one?

What we found left me in awe. We visited a girl who has retained a wicked sense of humor, which she unleashes regularly. I met a girl whose smile lights up a room. I met a girl facing her altered future with strength and resilience. I have a new hero.

There is much to worry about in our world today, and I regularly weary of the headlines. But our future lies in the hands of our children. Our fate rests with the generation which includes this brave young woman and my own bright and caring daughters. I believe in them. In them, there is much room for hope.

Dear young people:  Do not bury your talents, the gifts that God has given you!  Do not be afraid to dream of great things!”  –Pope Francis


Ronald McDonald House


I used to think that Ronald McDonald Houses, which provide temporary housing to family members of children in hospitals, are a good idea. I was wrong–they’re actually life savers for those who suddenly find they need them, something that’s hard to appreciate until you’ve experienced it.

When we packed our car a year ago with enough stuff to last us the expected six month hospital stay 700 miles from home, we were literally driving into the unknown. Topping our list of stressful uncertainties was, of course, concern for our daughter. The vast majority of HLH patients require a bone marrow transplant to save their lives. But BMT itself carries significant risks, and as an Asian adoptee, the chances of even finding a good match for our daughter were low. Then there is the unimaginable disruption of indefinitely splitting your family in two, especially heading into the holidays. How do you keep life and school as normal as possible for your other child? How do you juggle work so the paycheck keeps coming in? What do you do with the family pets in the shuffle? The list is long and overwhelming:  even with the tremendous support we received from family and friends, we were always in full-on coping mode.

Enter RMH. After a couple of weeks of living in the hospital with our daughter, a cherished room opened up across the street. Basic but functional and clean, it featured a real bed and, best of all, a private bathroom. Plus a very pleasant surprise:  volunteers providing a wide variety of services. There was entertainment, ranging from music to puppet shows to story time. I even got a chair massage one day. But the best volunteer service was the meals. When you’re away from home for an extended period, home-cooked food is quickly missed, especially when the next best option is the hospital cafeteria. These wonderful people, from a different business or organization every night, gave up an evening to make us tacos or chili or spaghetti. Normally a picky eater, I was beyond grateful for every single meal. As a Walmart associate, I was touched by the local Target store team which brought plush Spot-the-dog toys for the children.  I love that dog, now sitting on my daughter’s dresser.


So if any of you live near a RMH and are looking for a community service opportunity for your work or church group, please consider RMH. The meal or toys or music or quilts you provide will, trust me, make a difference to families going through the roughest time of their lives. Your gift will be in showing them that they are not alone.

“There is nothing like staying at home for real comfort.”  –Jane Austen


Diagnosis

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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 into 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 dates 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


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