Posts from June 2017

This is my daughter Rebecca in 2013.  She was 5¼ years old when I took this picture.  Less than three days later, she almost died on an ER bed.

She’d been completely fine when we set out for vacation that year, and just seemed to come down with a virus or something just after we arrived.  She got checked out at an urgent care center, where they diagnosed strep throat.  But antibiotics didn’t help.  She slowly got more and more sick.  We finally took her to be checked out at a nearby hospital, who were just as stumped as we were.  They were looking for a room to put her in when she seized and flatlined.

Just like that.  She’d been ill, but not severely so.  All of sudden, she was on the edge of death.  The ER staff barely stabilized her, by intubating her and administering drugs to induce a coma.

There was a large tumor in the center of her brain.  Our five-year-old girl, who so far as we knew was completely fine just days before, had aggressive brain cancer.

After a midnight life flight nobody was sure she would survive, she arrived in Philadelphia and had several cranial surgeries, spent more than a week in the pediatric intensive care unit, and then was transferred down a few levels to spend another two weeks on the recovery floor, slowly rebuilding the muscle strength she’d lost from more than a week of immobility.

Later, there were weeks on weeks of radiation and chemotherapy in Philadelphia.  After the initial treatment was done, we came home to Cleveland for more chemotherapy.

This is her, hauling her baby brother Joshua up the slide in our backyard, and hauling her mom through the crowd at the local garlic festival.  At a CureSearch walk with her siblings and dozens of friends and family.  Just barely tolerating my terrible dad jokes, doing her utmost not to encourage me by laughing.

We did everything we could, sometimes through tears and sickening horror, but the treatments didn’t work.  Rebecca died at home, surrounded by friends and family one final time, less than ten months after her cancer was discovered, in the early evening hours of June 7th, 2014, her sixth birthday.

In those ten months, the total retail cost of her procedures and treatments was $1,691,627.45.  Nearly one point seven million US dollars.

We had health insurance — really good insurance, thanks to COSE’s group plans and my wife’s and my combined incomes.  The insurance company’s negotiated rates meant they paid $991,537.29, or about 58% of the retail price.

We paid very little, comparatively speaking, until you counted the monthly premiums.  All of it together, co-pays and premiums, was still in the low five figures.  Which we were, fortunately, able to pay.

Without insurance, even if we’d been able to get the insurer’s rate, we’d have gone bankrupt.  All our investments, our house, everything gone.  If pre-existing conditions had prevented us from being covered, or if we’d been less fortunate and unable to afford premiums — bankrupted.

In which case, Rebecca’s brother and sister would have suffered her death, and the loss of their home and what precious little remained normal in their lives.

How many families live through that double hell?  How many go completely broke trying to save their child?  How many could have saved their children, with coverage that paid for life-saving treatments?  How many never had any chance of saving their child, but ran out of money before treatment was complete and now believe their lack of insurance and money was what killed their child?

How many more will have to live with those unthinkable situations, if the House and Senate bills go forward?

The point, the essential point, is this: every family should have the chance to fight as hard as possible for their loved one’s life without going bankrupt in the process.  And for those who cannot be saved, no family should be denied the knowledge that they didn’t have a chance.  Because knowing that does provide some (small) measure of comfort.

The Affordable Care Act wasn’t perfect, and it was severely and willfully undercut after it launched, but it was a huge step in the right direction.  The bill currently before Congress would be an enormous step back.  I doubt that I’ll benefit from the tax cuts that are part of the bill, but if I do, I’ll commit every cent I get from them and more to unseat anyone who votes yes on this bill.  I have let my senators know this.

I would spare every family the pain we endured, if I could, but nobody has that power.  We do, together, have the power to help every family that must endure that pain, to give them access to the simple safety net they need, to concentrate everything they can on the struggle to heal.

I miss her every day, but I know that we did everything that could be done, including being able to afford the hospice care that kept her as comfortable as possible in her final hours, preventing the seizures and pain and fear that would have made her last moments a hell beyond endurance.  Allowing her a peaceful end.  Every family should have access to that.

Please think about what it means to take that ability away.  Please think about what it means to take away the ability to avoid having to make those choices.

Please.

• Help Insurance was published on Monday, June 26th, 2017.
• It was assigned to the Commentary and Rebecca categories.
• There have been thirteen replies.

Three years ago, almost exactly to the minute as I publish this, I delivered the eulogy at my daughter’s funeral.  A few months after that, reading it again, I discovered that when I wrote it, I didn’t really finish it.  I understand why: I wrote it in the days after her death, and was not really able to think it through.  It was only in hindsight that I realized what was missing.

So today, I’m publishing the eulogy as I would have written it, had I been of clearer mind.  The final two sentences below are what I left off.

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Rebecca was fierce.  She beat adults in staring contests when she was two weeks old.  Rebecca was joyful.  Her laugh could fill a room and bring a smile to anyone who heard it.  Rebecca was stubborn.  She would often refuse to give in, even when it cost her something she wanted.  Rebecca was kind, and loving, and mischievous, and oh so very ticklish.

She vibrated with energy.  Her philosophy was essentially: never walk when you can skip, never skip when you can run, never run when you can dance, and never dance when you can hide yourself around the next corner and then laughingly yell “BOO!” when everyone else finally catches up with you.

She loved to steal our phones and wallets and keys from our pockets, not to hide them away or do anything mean or malicious, but to wave them in front of us and laugh her way through an affectionate, singsong tease.  If there’s a world beyond this one, I hope whoever’s in charge has secured all the valuables.  Not to prevent her from swiping them, which would be an impossible goal, but because she would be disappointed and bored if they were too easy to swipe.

Rebecca is not an angel, nor would she wish to be.  If anything, Rebecca is now a poltergeist.  On her sixth birthday, we had planned to go to Cedar Point that day and the next.  Instead, that was the day she died… and on that day, a water main break closed Cedar Point for the entire weekend, because if she couldn’t go, then nobody gets to go.  And in brief conversation this morning, I was literally about to say the words “lose electricity” when the power went out in our house.

The little stinker.

One of the hardest things for us in the last few weeks of her life was seeing how the tumor slowly and inexorably took all that sass and spice away from her.  The loss of energy and emotion was horrible.  We had fought so long and hard to keep her quality of life normal, and we had succeeded.  It was only at the very end, just the last few days, that she moved beyond our ability to preserve it.

Underneath it all, she was still Rebecca.  She got mad at her sister and brother because they would get to stay with us and she wouldn’t, and then she forgave them because she understood it wasn’t their fault and she loved them so much.  She gave us disdainful looks when she thought our attempts to tease her were lame.  She asked, wordlessly but clearly, to hear her favorite stories.  She told us she didn’t love us because she wanted to push us away, to lessen our pain.  But when we explained to her that the joy of loving her was worth any pain, and that we could never stop loving her regardless, she relented and admitted the truth that we had never doubted.  The last words and gestures that passed between us were of love.

In her last hours, she was surrounded by love, her room filled with people who loved her as she loved them, never leaving her alone for a second.  We held and snuggled her all the way to the end, all of us together.  And the people in that room were surrounded by the love of those who loved them, and they by those who loved them.  All of that love focused on Rebecca.  She deserved it.  But then, so does every child.

Now she is gone, and we who remain are devastated.  It is only together that we will move forward.  Community has sustained us the past months, and made it possible for us to do everything we could for Rebecca and Carolyn and Joshua.  Community will help us get through this.  Our hearts have been broken into uncountable pieces, but we will help pick up those pieces together.  I am beyond heartbroken that she is gone, but I will never, not for an instant, ever regret that she came into our home and our lives.

What matters in this life is not what we do but what we do for others, the legacy we leave and the imprint we make.  Her time may have been short, but her spark illuminated so much in that time, touched and warmed so many people, and for the rest of our days we will all be changed for the better.  That is what Rebecca did for all of us.  And any of us would be beyond fortunate to have lived our lives with half as much meaning, or a tenth as much joy, as she lived hers.

• Eulogy, Completed was published on Monday, June 12th, 2017.
• It was assigned to the Rebecca category.
• There have been six replies.

Three years ago, Rebecca took her last breaths.

She’s been gone for half her life.  Half the time she had with us, elapsed in absence.

It’s still hard to comprehend.  The old adage that you don’t get over it, but you get used to it, holds true.  I’m used to her absence.  I still think of her daily, usually multiple times a day, reminded one way or another.  The reminders can spring from moments of joy that I suddenly realize she isn’t there to share, or from moments of profound sorrow over the state of everything, or just from spotting an unexpected flash of purple.

In the initial grieving, each moment of remembrance was like an enormous jagged spike driven violently through my chest, impaling me in an anguish I could not actually feel, even as I experienced it.  My breath would hitch to a stop as I remembered the hitch in hers, as her body finally relaxed and the space between each breath got longer and longer, even as each breath was a fractional bit fainter than the one before.

My grief has similarly faded, these last three years.  That terrible, transfixing pain has its own slope of decay, if you let it decay, dropping into a long tail of quiescence.  If you’ve ever suffered a major injury, then you know what I mean.  The initial pain is overwhelming, filling your entire awareness and leaving room for nothing else.  That fades into a massive suffering as the injury is addressed.  After the initial recovery, you come to live with a constant pain that is manageable, if utterly draining to endure.  After a longer while, that becomes an ongoing ache, easily aggravated but also somewhat possible to ignore for short periods.  And so on and so on, until months or years later, it’s a twinge you get every now and then, maybe a dull ache when the weather changes or you shift your weight the wrong way.  Something you can live with, but also something you can never fully forget.

I can still sometimes feel the spikes that were driven into me, but distantly, around the edges where the scar tissue grew to fill the latticework of grief.  As you might feel the shadows of the pins that put your leg back together, or the echo of the holes drilled into your skull to seat the halo brace.

We went to visit her grave this afternoon.  It was our first time back since last year’s memorial visit.  I’d thought of going from time to time in the intervening year, and resisted.  I’m not entirely certain why, but it felt like the right decision.  Not the decision I wanted to make, but the right one.

We were astonished to find that the artificial flowers and rainbow spinner placed there last year were still in place, faded and worn.  The groundskeepers had carefully mowed around them.  Perhaps that’s why the small Rainbow Dash toy was still there, still nestled against the top edge of the marker.  It, too, was faded from the year of sun and rain and ice, but still had the same jaunty pose and smiling face.

It reminded me of Rebecca, and I smiled a little.

I noticed dirt had settled into some of the letters, and resolved to return another day to clean them out.  Maybe polish the granite face a bit, to see if I could restore some of its initial luster.  Nothing I could do would preserve that forever; the slow decay of time and weather never pauses, not even in deference to the memory of a little girl who lived too short a life, no matter how fully she lived it.

In the long run, the marker will be worn smooth, settling through a long period of becoming harder and harder to read until eventually, it fades completely from understanding.  That can’t be avoided, but it can be postponed a little bit.  As long as I’m here and able, I can put in a little periodic effort to undo some of the damage done.  Put things partly right.  It might seem futile, but sometimes small acts in the face of futility is the best you can do.

You don’t get over it.  But you get used to it.

• Half Life was published on Wednesday, June 7th, 2017.
• It was assigned to the Rebecca category.
• There have been thirteen replies.