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


Leaving

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I’m going to have to get good at leaving. As I split my time between one daughter at home and the other in a hospital four states away, it’s something I’m going to do a lot of, including passing my husband en route each way. So far, it’s been hard to do.

The harder goodbye is leaving my ill daughter behind in the hospital. Even though I always leave her in the care of her loving father and capable medical staff, it goes against every fiber of a mother’s being to voluntarily walk away from your sick child. It takes a willpower beyond almost anything I’ve ever done, even though living in a hospital is draining. Hospital living is all of the “glamor” of business travel, without any of the luxuries like a private bathroom, a real bed, or restaurant meals. I can’t wait to leave, even as I simultaneously can’t bear to leave. The guilt I feel when I’m at home–healthy, sleeping in my own bed, eating familiar food–is almost as bad. It all seems so unfair.

I constantly have to remind myself of the end goal in this ordeal: our precious daughter returned to full health. From the beginning, there’s been no question that we’d do whatever that took. We now know of too many other parents who never got the privilege of this long term, long distance round robin on behalf of their children. So I’ll get good at goodbyes until the glorious day I get to leave one last time to bring our daughter home. While this may all seem unfair, we have much hope that day will come.

“It’s time to say goodbye, but I think goodbyes are sad and I’d rather say hello. Hello to a new a adventure.” –Ernie Harwell


Anniversaries

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Russ and I celebrated our 30th anniversary on August 4th. It was memorable, if not romantic: we spent it in the hospital with our critically ill daughter.

After 30 years, I can honestly say I don’t remember a single anniversary until this one. We never made a big deal out of them. We married young and poor, and a few days before our first anniversary rolled around, my husband looked at me and asked what are we supposed to do? If I’d known my answer would set the stage for the rest of our married life, I might have answered more carefully. I knew he was really asking if I expected a gift with our extremely limited funds, so I made the practical suggestion that we buy each other’s car tags which were due. That became our tradition for the next 20 years. No wonder I don’t remember any of them.

This year, however, I remember every detail. I remember how on the 2nd, two days before our anniversary, Megan began rapidly deteriorating after two weeks in the hospital with no clear diagnosis. How a day later on the 3rd, we watched her body crash as she fought a dangerous bloodstream infection. How on the morning of the 4th–our anniversary–one doctor admitted to me that he hadn’t expected her to make it through the night. How later that day the doctors performed the biopsy which would confirm their fears. How on the 5th, she started chemotherapy after confirmation of the diagnosis which would change our lives forever. How, while waiting for those results, the nurses gave us an anniversary card, having taken up a collection for a gift card to the hospital coffee shop. They had sweetly taken pity on us, “celebrating” this momentous occasion as we watched our daughter flirt with death.

There are other memorable dates these last couple of months. The date Megan first fell ill: June 5th. The date of the first of ten doctor’s visits trying to determine what was wrong: June 7th. The date of the first indication this was something way more than the virus they’d been saying it was: June 27th. The date of that tenth doctor’s visit, not knowing we wouldn’t be coming home from the ER: July 17th. The date we ate our first dinner together as a family in two months: September 11th.

I thought about these dates recently when a fellow HLH mom wished her daughter a happy “re-birthday” for her bone marrow transplant anniversary. After all of the bad dates we’ve had, this was a reminder that there will be good ones ahead of us to celebrate. So instead of remembering the bad, I’m going to start looking forward to these happy dates:
• The date we receive word there is a donor match.
• The date we see the first signs that Megan’s new marrow is taking hold.
• The all-critical 100th day post-transplant.
• The date we can all be home together again.
• The date her immune system is strong enough for all of us to go together to a restaurant.
• The first day of school.
• The first re-birthday of the transplant which will put this monstrous disease into permanent remission.

For the first time this year as our 30th approached, I had asked to celebrate our anniversary, to be taken to a favorite local Italian restaurant which we don’t eat at often because it’s somewhat expensive. We never made it. My goal is to celebrate there next year, with our family healthy and whole again. From now on, I plan to celebrate our happy anniversaries; we will have much to celebrate.

“The more you praise and celebrate your life, the more there is in life to celebrate.” –Oprah Winfrey


Tragic

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I’m sitting on the bathroom floor with a box of Kleenex and the door closed so that Claire can’t hear me cry. I just read a Facebook post from someone I’ve never met about someone I’ve never met, and yet we’re all family. We share the tragic bond of loving someone with a rare histiocytosis disease. In this case, it cost an innocent two-year old boy his life.

Since joining this online community when our daughter was diagnosed, this group has been a lifeline for me of information and support. Though I have yet to meet any of them in person, I know more about some of them and their families than some I count as friends. We share in each others’ successes and struggles, sharing information and empathy. Occasionally, that also means sharing condolences when someone loses their battle to one of the horrific monsters that can steal our children and loved ones out from under our noses, even as we maintain vigilant watch.

Though in only two months I’ve already seen too many of these tragic endings, the one tonight hit me particularly hard for some reason. Maybe because he was so young and innocent. Maybe because I’ve relaxed a little lately as my daughter’s condition has stabilized somewhat, or maybe because she’s far away in a hospital four states from home. All I know is I went from doing the dishes to sobbing on the bathroom floor for a little boy and a family I’ve never met. My heart breaks for them. I have nothing to offer except my deepest sympathy and a sincere belief that, somehow, their little boy did not live nor die in vain.

“The life of the dead is placed in the memory of the living.” –Marcus Tullius Cicero


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