On the heels of an ambitious post last week, touting the need for us to own our healing 100% (linked here), I am inspired to do some healing of my own.  I have shared that I rarely experience anger (linked here) but not today.  Today I am angry and I want talk about what it is like to live without my daughter.

Many of the posts I share are created with the specific intention of somehow helping others.  I relate my experience of grief to every day situations, and offer solutions and concepts that I have found empowering along my own healing journey.  Keeping these things to myself is a waste, and writing has provided a great conduit to connect with a whole community of people seeking harmony and healing in the face of different kinds of loss.

But today, I am not writing for anyone else, I am writing for myself.  No bullshit.

“What’s it like?  Living without your daughter, I mean?”

I would reference an actual conversation related to the above quote, if one existed.  But this is not a question I’ve often heard in the nearly twenty six years since her death in 1997.

Alexis Layton McFarland was born on August 10, 1996 and died thirteen months and five days later from complications of genetic factors and Aplastic Anemia.  She drew her final breath in my arms after sending one final focused look into my eyes on a dark Monday night in Montgomery County, Maryland.  Her death on September 15, 1997 has left me befuddled and confounded, for every moment since that last breath we released together.

I say befuddled, because I never lose the shock value of living life without her.  After carrying this tiny creature in my body, and holding her in my arms for thirteen months and five days, I am still confused as to her whereabouts.  I know she died.  But still, she’s coming back right?

“This is what it’s like:”

Have you ever been in love?  Ever meet someone new, and every day after, you just kept learning new things about them that you wanted to know more about?  Did you feel like you were discovering the best person ever?  Did you hope it would never end and you would always make these discoveries?  Did you look forward to the ongoing unfoldment of your relationship?

Perfect.  Now flip all of that on its head and that’s what it’s like to live without my daughter.  Every day since Alexis died, I keep learning new ways to miss her.  I didn’t “just” lose a baby girl.  I lost a daughter and the life I so dreamt of with her.

In the first years after her death, the losses were blatant and they were everywhere.  We had a house full of baby girl things, and no baby girl.  Clothes, toys, baby smells and sounds all made my insides clench up as if I were a tightened fist with no circulation and white knuckles.

I couldn’t get away from all of the triggers.  But I learned to duck and weave my way along.  I figured when I had more children my intense longing for Alexis would be mitigated.


As years have passed, my recognition of new “losses” I’d never felt before, have been fewer but also more poignant.  They hang around in the background like they’re waiting to see if I will muster up the courage to pay them any of my attention.  The passage of time has surely impacted the way the loss makes itself known in my daily life.

Early on, my heart may have been triggered for example, by an obvious reminder such as a pregnant woman.  I’d see her and remember what it was like to carry Alexis.  I might have wept for the innocence that I lost when the unthinkable happened and I had to bury her body.  Depending on the day, I might have had to cancel my plans or get back into bed.

However in recent years the grief triggers have been more subtle, and also more cutting.  For example, I might notice the timeless look between a mother and a daughter during a moment of shared pride, loss, or love; or see an adoring glance from a young woman toward her own mom when she’s not looking.

These triggers are experiences.  They can’t be locked in a drawer like baby clothes can.  And most days I can integrate them in a way I think I can live with.  But some days I want to tear everything to shreds and pass out atop the pile that is the mess I have made.  I would sleep like the princess (and the pea.)  Maybe I would wake up and find out it was all just a bad dream.

“What’s it like?  Living without your daughter, I mean?”

Living without Alexis is profoundly sad and complex.  The pain does not relent.  Her absence doesn’t stop finding new ways to say hello.  And as her 27th birthday approaches this week, I realize I have lived with the grief of her death for as long as I lived without it.  I was 27 when she died and as I approach 54 in January, perhaps I will continue to find the courage to speak openly about this unspeakable experience.

I can’t see any other way to make use of the pain but as building blocks for connection with others.

Becoming a Pediatric ICU nurse didn’t do it for me.  Neither did running a nurse consulting practice or climbing the corporate leadership ladder.  None of it matters.  If we can’t show up as ourselves, and stand together in our truths as painful or ecstatic as they may be, we might as well do what we want to do and stay in bed all day.

With Netflix and bed snacks, of course.

Happy 27th Birthday Alexis! 🦋

PS Enjoy the remainder of the Summer!  I will be back in September, Deo volente 🙏🏼

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