Being Different

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A globe-trotting friend of mine recently shared an unsettling experience she had in Malaysia about being different. Though being on the other side of the planet makes this feeling more likely, being far from home is not required. Here’s her story:

“Today, I felt diversity. I’m used to being one of the few or the only woman in the room, but I’m not always aware of the difference. Today I had to walk through a courtyard of men at Muslim prayers. There was no route around. With my white skin, uncovered blonde hair, and western style dress, I clearly didn’t fit in. I felt the perceived burn of all eyes on me, and for the first time in a long while, I felt uncomfortable being different. In fact, I felt unfounded fear…breathe deep, eyes down, shrink into myself, and maybe no one will notice me. As uncomfortable as I was, I treasure the experience to walk in the shoes of others who fall into the category of ‘minority’. I am deeply thankful to have the opportunity to be a citizen of the world and to grow from these experiences.”

I suspect most of us know the feeling my friend experienced; I have several similar memories myself. Even if the geography and visible differences aren’t as stark as this Malaysia experience, we all know what it feels like to be the odd one out: to be the only one of our gender or race in the room, or the most poorly dressed, or the only one who doesn’t know anyone. At a minimum, it’s an awkward, unpleasant feeling. Sometimes, however, the discomfort crosses over into fear. It’s an uncontrollable, biological reaction. I have felt it and been ashamed, knowing that it was irrational, as the only visible “threat” to me at that moment was that I was different. The real threat, however, is when these natural feelings go unrecognized and unchecked in our society.

Too many of today’s news stories have their roots in this human phenomenon. If its biological basis is part of our hard wiring, what are we to do? As with my friend in calling out her experience, awareness is a good place to start. Human beings the world over have the same hopes and fears. Of course, there always have been, and always will be, those who inexplicably go bad. But they are the exception. My choice–and upon reflection, easy decision–is to fight my fear of differences. I will not allow the destructive minority to color my perspective. I resolve to treat all humanity as I know in my heart the majority are.

“We may have all come on different ships, but we’re all in the same boat now.” –Martin Luther King Jr.


Lessons

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A dear friend lost his mother last month. She was 95 and, from all accounts, a talented woman with a fascinating life even before starting her family. Here is what my friend shared about his mother’s last week.

“Thursday morning, I visited my mother at the nursing home. She was fragile and semi-aware as I fed her a few teaspoons of scrambled egg and helped her drink a tiny sip of apple juice. She tired quickly and asked to return to her bed. Before she dozed, I kissed her on the forehead and whispered ‘I love you, Mom.’ ‘You’re a good kid,’ she replied. ‘You’re a good mom. See you next time.’

An hour later I visited an inspirational high school teacher, in a nearby nursing home. We visited spiritedly for 30 minutes before he had to leave for physical therapy. I promised to return to complete the visit the next Thursday.

On Saturday, Mom died peacefully. On Wednesday my teacher died unexpectedly.

Among the reflections I allowed myself until more tears interrupted were the two powerful lessons I’ve embraced from them: Mom taught that there is right way. This teacher taught that the wrong way has consequences.”

Though not the same as losing a parent, I unexpectedly lost three friends in the last year, all in my same decade of life. As with my friend, each loss was a cause for reflection. Each left me with some unique gift and helped me a little on my journey toward becoming a better person for having known them. I believe we honor those who go before us when we use their passing to reflect on the lessons of their lives.

Depending on your perspective, death represents either an unfortunate outcome of the natural order, or an upside down gift from God. A gift because without an unknown expiration date, what incentive would we have to create, to improve, to reflect? Would we simply be the smartest of the animals, spending our days chasing only instant gratification, with no need to look for something more? Knowing I, and those I love, will not always be here is a powerful motivator for me to become better. Those around me help me fulfill my potential simply by showing me theirs. It is a rich blessing, though the inevitable losses are painful. I have only been able to find comfort in the pain of those losses when I try to learn lessons from the best of who they were and hope that, someday, I, too, may be a small lesson to someone else.

“I truly believe that everything that we do and everyone that we meet is put in our path for a purpose. There are no accidents; we’re all teachers – if we’re willing to pay attention to the lessons we learn, trust our positive instincts, and not be afraid to take risks or wait for some miracle to come knocking at our door.” –Marla Gibbs


Silver Linings

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We have more than usual to be thankful for this Thanksgiving with the incredible gift of Megan’s apparent. beat-the-odds recovery…an answer to prayer. Our original plan for this week had included a 20 hour round trip to Cincinnati and a bet that the Ronald McDonald House would put out a turkey spread for the families staying there. Instead, we got to spend it at home with family, just as it should be. It was impossible not to spend the week blissfully happy together. Wondrously, I am finding myself thankful for much more than just our tentative miracle.

Though we can still see our ordeal up close in the rear view mirror and are still dealing with its lasting impacts, reflection on what we’ve been through has been coming in quiet moments, and I am almost grateful for the experience. Don’t get me wrong: I’d undo every bit of it if I could, especially the long-term health impacts and lost school year. But while it’s been, by far, the hardest, most frightening, most stressful experience I’ve ever been through, amazingly it hasn’t been all bad. I found a surprising number of silver linings, perhaps because I desperately needed something positive to cling to. Nevertheless, they are very real.

First were the people, including the unbelievable support we received from family and friends, which simply made the difference in getting us through this emotionally and physically intact. We owe them more than we can ever repay. There is no way to adequately thank the expert nurses and doctors who cared, too, for us, even as they saved our daughter’s life. Even strangers did much to ease our burden. Though beyond stressful, the experience also brought us closer as a family. From the one-on-one time I got with each of the girls, to learning how to lighten my husband’s load from hundreds of miles away, I am now even more confident of the rock solid foundation upon which my entire life is built.

Perhaps most impactful, however, this experience has forever changed my perspective on what’s important. A friend once advised me when I took a high stress job where she worked to always remember that “we’re not saving babies.” That advice hit home as I sat for months in the hospital, watching people who actually do. When I returned to work, things which would have gotten to me before were instead only minor irritants. Office politics means nothing next to the life of your child. I have also learned much about being flexible and not needing to be in control. I’m happier as I’ve let go of much of my stress over things that don’t really matter. There are many small things which I will never take for granted again. Best of all, we’ve also gotten closer to God through this ordeal, including Megan. While I’m sad at how fast she has had to grow up these last few months, she now has a mature appreciation for what really matters and a deeper faith, beyond her teenage years. I, too, now know that I have more faith than I ever knew. So in spite of not knowing what tomorrow brings – whether ongoing recovery or relapse – I know I have the strength, the faith, and the family to get through it whole.

“See, when you drive home today, you’ve got a big windshield in the front of your car. And you’ve got a little bitty rearview mirror. And the reason the windshield is so large, and the rearview mirror is so small is because what’s happened in your past is not near as important as what’s in your future.”  –Joel Osteen


Why?

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This month I’ve squarely faced one of life’s most difficult questions, very simply boiled down to ‘why?’. There are no answers. The specific question is why do some die from the HLH our Megan has, and why do some live? I have thought about that since we learned that her disease is a killer. It was more than a rhetorical question for too long, as she marched to the edge of the abyss, before slowly drifting back to us. As I leaned on my new online support group, I met too many parents whose children didn’t win the battle, some lost in just days. As Megan has slowly recovered, the question lingers: why were we allowed the privilege of bringing her home? I have always been aware of unfairness in the world, but it’s now up close and very real.

I’ve recently been corresponding with some who’ve lost loved ones to this monster, offering a gift of my book about the nature of heaven, in the hope that it may be of some small comfort. I wasn’t prepared for the emotional impact this small gesture would have on me. Parents have spontaneously sent me pictures of their beautiful children, prematurely cut down before they were really allowed to live. Aunts and grandparents described open wounds in their families, as yet unfilled by the passage of time. I suddenly realized that I would have to respond to each of these heartfelt messages, but what do you say to a stranger who has just opened a window onto their grief? I have no wisdom or answers. I have only a deep sympathy and an unshaken belief that there is a God with a plan that we can’t understand. That feels deeply inadequate, but it is all that I have.

I once heard someone compare our understanding of God to our dogs’ understanding of us. They know us and love us, but have no understanding of our actions, our activities, or our lives away from them. An odd analogy, perhaps, but one which works for me. I can’t ever understand why my child, or any parent’s child, must suffer from this horrible disease. I don’t know why my daughter lived when too many others did not. Someday I intend to ask God these questions. But I am rest assured that the answer will make sense and that, most importantly, it will be delivered in love.

“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.” –Robert Fulghum


Strangers

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I owe my daughter’s life to strangers I’ll never meet, and a small measure of my spiritual well-being to people I barely know. They have unexpectedly given me gifts as large and meaningful as any I’ve ever received, and in so doing, have given me glimpses of God.

The first two strangers to intervene on our behalf donated the pints of blood my daughter received on day two in the hospital. They were just the first of dozens of givers of life. I can’t adequately thank them for giving her back to us, but I have already begun donating blood myself to pay it forward to the next child who needs it.

Other kindnesses ranged from small to huge. I was four days into a new job when I suddenly disappeared for a month in the hospital. Though they barely knew me, my new team members became part of a chain of friends who kept meals flowing to my husband and daughter left behind. A dear friend’s sister-in-law offered to let me shower, bake cookies, and share in her golden retriever’s therapeutic powers while unexpectedly stranded in a strange city. The post office clerk, who noticed the address on the box of my daughter’s hair she was donating to make a wig for another chemo patient, asked her name and said she’d pray for her healing. A local pastor, a friend of our own at home, prayed with me at the hospital, and his congregation sent my daughter a care package of thoughtful gifts when she was at her sickest. My young stylist’s assistant volunteered to come to our home and give my daughter a makeover as a gift to cheer her up. A young pilot, friend of a former co-worker’s son, volunteered to fly us to the transplant hospital to reduce the load on our fragile daughter. Fellow histio moms, who live in the transplant city, offered their washing machines and even their spare rooms to us. Think about that: offering your home to a complete stranger. One of them even befriended my daughter, regularly visiting her and taking her small gifts to cheer her up. All of these people have left a profound impression on me.

We are also so deeply grateful to our family and friends for everything they have done to support us; they have truly made the difference, keeping this crisis from breaking us. But the completely unexpected kindness of strangers has been a surprising silver lining through this ordeal. So much of what makes the evening news shows humankind at our worst. But these small, unanticipated acts of compassion from complete strangers have reinforced my faith in humanity. Several have told me they are just paying it forward after events in their own lives. I will honor their gifts by spending the rest of my days finding ways to do the same.

“We all have life storms, and when we get through them and we recover from them, we should celebrate that we got through it. No matter how bad it may seem, there’s always something beautiful you can find.” –Mattie Stepanek


In Between

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I’m writing about the wrong subject today, and I’m not fully sure why. I should be writing about “celebration”, following Megan’s sudden discharge from Children’s Hospital in Cincinnati and the wondrous news that they believe her disease is heading into remission without transplant. I should be ecstatic–and I am on one level–but my joy is surprisingly muted. What’s wrong with me?

Our great news was sudden and unexpected. Her oncologist was out of the country last week. When we last saw him two weeks ago, he said he didn’t know which way things would go. That itself was more hope than we’d had, as it had appeared transplant was inevitable for Megan, just as it is for 80-90% of those diagnosed with HLH. I could tell from his body language that he was truly split: the odds of transplant versus no transplant were equal. Things didn’t go totally well the next couple of weeks. An earlier problem flared again, triggering relapse concerns and a visit with a new specialist. Our hopes weren’t high. So we were stunned when the oncologist delivered the good news immediately upon entering the exam room. I had a million questions: about why he was so positive, what did we need to watch for, what were the long-term implications. He seemed happy to linger and answer my questions…I wondered how often he gets to deliver good news. When he eventually left, I was left with the unexpectedly pleasant task of repacking everything I’d unpacked just the day before, as I swapped places with her dad on schedule.

Since we got home and have been resettling into life together as a family again, I’ve wondered why–though I’m very happy–I don’t feel unbridled joy. I know part of it is she’s still not wholly recovered. She’s well enough to be home, but she still takes many medications and will for awhile. She still has an IV line that we have to provide daily care for. A nurse still comes to the house weekly for the many blood tests to monitor whether the doctor’s hunch is right and levels will slowly return to normal, or whether the next virus will cause a relapse, and we will be right back to square one. That is the root of it for me: I’m worried. How am I supposed to feel when she is in between critically ill and healthy? Are we supposed to let her start going to the library and out to get ice cream, or are we supposed to shelter her awhile longer? If not now, when will we be comfortable letting her return to normal activities or school? We don’t want to become paranoid and keep her in a bubble, but damn it, we just about lost her, and it scared us. There is no roadmap for this part of the journey, just as there wasn’t for any of the rest of it.

I don’t want to spend our lives–or hers–in fear, but as her parents, we want to protect her. People don’t understand why I’m not as happy as they expect me to be. I feel like my feelings are in between, too, in exactly the same place as my daughter’s health. We’ll find a path through this as a family, and it will end wherever it’s destined to end. In the meantime, I will give myself permission to feel in between. And I will remember to thank God daily that she is home.

“Life is one big transition.” –Willie Stargell


Discount Dog

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Our youngest dog was the last of her litter, a leftover, and (we think) the runt. I somehow grossly misunderstood the price the breeder was charging; either she misadvertised or I simply erred, having looked at a lot of dogs online that day. It’s a good thing I did, or we’d have never gone to look at her in the first place.

I withdrew the exact amount of cash I thought she was asking, and we drove the half an hour out into the country. I assumed she was asking less than other breeders because she was a ways out of town. The dog wasn’t what we’d expected. We’ve had golden retrievers before, but this one was dark red with short hair. She was well past the standard six week weaning time with long adolescent legs–not the adorable, fluffy, golden puppy that graces so many dog food commercials. She looked odd, like a long-legged dachshund. She didn’t seem terribly bright or to have much personality. She was, in short, a disappointment.

But we’d made a tactical error: we’d brought the girls. They didn’t see what we saw, or they just had their hearts set on a new puppy. When I realized the gross difference between the asking price and the cash in my pocket, we started to walk away anyway. That is when fate intervened. It turns out the woman was desperate to get rid of this last puppy, realizing it was past its prime. I, too, was in the mood to negotiate, given the heartbroken girls I’d have had on the drive home. The owner accepted the cash I had on hand plus a modest check. It was done…the odd creature was ours.

As it turns out, our discount dog has proven invaluable. She is not beautiful, but she is very sweet. She is not smart, but she is the most loving creature I’ve ever met. She is not graceful, but she makes us laugh and brings much love into our house. We have decided that our discount dog has turned out to be one of the happiest accidents and best investments we’ve ever made. Thank heavens for misunderstandings.

“Money can buy you a fine dog, but only love can make him wag his tail.” –Kinky Friedman


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