The Bursting and Breaking of Our Hearts

Today is Memorial Day, a day set aside to remember those who made the ultimate sacrifice for our country.  As the wife of a veteran and the friend of those among the lost, this day is heavy with memory and meaning.  I’m thinking especially of Will Lindsay this morning, who died serving in Afghanistan just over three years ago.  Will and Derrick were on the same special forces team, and they shared two homes together before we left for Denver and medical school.  He was a good, good man.  And he was a brother to Derrick, bonded by war and ordinary life, and the entrance into marriage and fatherhood around the same time.  Above all else, he was a family man.  He delighted in his wife, Sarah, and their four daughters.  At his memorial service, a teammate shared advice Will had given him when he was still fresh from training.  You will be away a lot with this team, but when you are home, be completely home.  Put away your phone and give your family all of you.  I know Will lived that, playing blocks, board games, and Barbies on the floor for hours.

I will never forget the moment I learned of his death or the moment I told Derrick, pulled from surgery to find me and Eliza in a call room waiting.  The pain was physical, and the “what-ifs” relentless.  We drove to his home in shock and collapsed there in tears with Sarah and old teammates.  Once again, the floor had dropped out beneath us, violently and unexpectedly, and once again, every single other thing in life shifted into what I believe must be its proper place.  Derrick’s imminent test, the long hours in residency, even Eliza’s health struggles and diagnosis paled in comparison in the light of Will’s death.  It carried with it a finality that stripped us raw, pulling back the illusion of control we cling to and shedding the burden of worry we attach to a million things that really don’t matter.  

It brought me back to that NICU perspective, deepening what I thought I had already learned and expanding it into new channels of pain, wisdom, and gratitude.  It was utter devastation, loss beyond measure, and it was also intense love.  You could feel it in the hugs and see it in the tear-filled eyes around the room that night and for so many days after.  We needed each other, and we knew it.  It wasn’t as much a new lesson as it was a reminder that this lesson – the bursting and breaking of our hearts – is worthy of our attention, our time, and our care for each other.  May I live a life worthy of Will’s sacrifice…a continual thank offering to those who have given of themselves in a million different ways.  And may I be a giver myself, looking first and foremost to the cross as the guide to what true love looks like.  No greater love than this…that one may lay down his life for a friend.  Amen and amen.  

Life May Never Be the Same. And That’s Okay.

Like many of us, I’m realizing that there is no date in the near future when we will “go back to normal” because the truth of the matter is, normal is forever changed.  And that’s okay.

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It’s easy to spin into a dark place when you realize life is taking you way off the course you imagined.  It’s scary to go someplace new without a road map.  It’s hard.  And yet, if there is anything life has taught me in the last several years, it is that we can do hard things.  Even more, when we do, something deepens in us, and the life we create from those challenges is deeper too.  

When my middle daughter, Eliza, was in the NICU, my focus of hope was on the day we walked out of Room 8 and back into real life.  In my mind, the discharge to home somehow felt like it would be a great return, as though we could check the box, finish the course, and graduate.  When doctors started testing for incurable, terminal conditions, my focus of hope transitioned to survival.  I just wanted my baby to live.  And when we got the diagnosis, my focus of hope turned to finding a treatment, longing for the day when she could be cured of the debilitating effects, like insatiable hunger, that come with Prader-Willi Syndrome.  I cycled through it all.  I grieved the loss of the life I had imagined and grieved again when I realized finally that there was no finish line to cross in this new course.  

I still remember with clarity the waves of questions that relentlessly came at night.  Would she be happy?  Would I be happy?  What happens if she never leaves our house for one of her own?  And what happens when we’re no longer here to care for her?  The grief wrapped itself around me like an uncomfortable blanket I couldn’t shake.  I truly questioned if I would ever again feel light…if I would ever again have days that weren’t consumed with thoughts and fears about her life and my ability to handle it well.  

More than five years later, I find myself feeling much the same way.  When COVID hit, my first thought (like so many others) was, how soon can we get to the other side of this?  Fourteen days?  Three months?  Give me a finish line to see, so that I know I can cross it.  That changed to fear.  Will we make it?  Between Eliza’s underlying medical issues and my husband’s job as a doctor at one of the largest public hospitals in Seattle, I became obsessed with the thought of mere survival.  That’s still a real fear of mine.  And like everyone else, I want there to be a vaccine…some kind of cure or treatment that can take it all away.  But I learned the hard way through our efforts to fund research for a PWS treatment that it is a long, slow process to get there.  I have faith that both will come, but I can’t wait for that to happen before I start living in the world I have right now.  

The parallels between these unexpected journeys give me some perspective that I hope is helpful, which is that not only can we do hard things, it will be in and from those seasons that we fully live our best lives.  Grief and suffering dig channels where love can enter, and when we are open to it, that love will transform us.  All the extra baggage we get so preoccupied with falls away in crisis, leaving only the true and essential.  

Sitting in the NICU, holding a baby covered in wires and tubes, I wondered if life would ever be the same again.  And I can tell you, it hasn’t been.  For that, I am so grateful.  That’s not to say I’d choose PWS for Eliza any more than it is to say I’d choose COVID for our world.  They’re both painful and unfair and terrifying.  But I know this: from great suffering comes great transformation.  Our faith grew deeper.  Our love grew stronger.  And our joys became rooted in the things that circumstance could not shake.  We have walked through fire with that girl, but we learned we could rise from the ashes.  

May we acknowledge our collective experience of grief and fear and struggle and find ways to lean into the love and lessons it brings with it.  May we stop waiting for the finish line and start opening our eyes to the wonders of this season.  Normal may never be the same.  We may never be the same.  And one day, if we’re lucky, we may just be grateful for that too.