After decades of packing away my grief in places I tried desperately to avoid, I continue to be grateful, and amazed at the same time, that after so many years of hurting I could still be learning from my grief. It remains a doorway to discovering more about myself and life in general. While once locked up like a castle’s hidden dungeon, my now open heart, invites everything to be here, and has so much to teach me.

I have written and spoken about the rage and embarrassment that came over me when our Daughter Alexis died in 1997. As you may know, she was sick most of her 13 months and 5 days of life. She was complicated medically, with tubes and catheters and infusions and shots. We lived in and out of Children’s National Medical Center for a full year. All the while, I was at the center of the challenges, cheering our way out. I never allowed for the possibility of the outcome that eventually befell us, which was her death.

When I refer to embarrassment, I am describing the naïve part of me that never thought “death” was an option. With every new development and diagnosis, came new informed consent signatures, more research, more tears and also more determination. “Hell, we can live with all of this crap, we will learn how to make it work.” I told this to myself again and again, like a mantra that wouldn’t allow for any other outcome.

The embarrassment came when Alexis died in September of 1997. And it has haunted me for all of this time. Like a young woman going on a date for the first time, I was giddy that we had this beautiful angel daughter, and never thought for a moment that we, as a team, couldn’t handle whatever was thrown our way. I was “all in” on making this work, and even though I regretted those procedures and times she was in pain, I felt it was part of the path we needed to build out of the hell that was her physical reality.

Ever fall victim to an online scam? Or worse? Just been flat out betrayed? In a relationship? In a business? In any situation where you trusted a person or a dynamic only to find out later that you never had a chance?! Well I felt scammed, used, and bamboozled when Alexis died. I felt like a naïve idiot who may have been the only person in those hospital rooms that heard “hope” when others heard “death.” I did everything I could, believing that whatever happened, she would be ok.

When Alexis died I felt so taken advantage of, like my pureness of heart had been stomped on like pillow on the path of the bulls in Pamplona, Spain. Stomped. Destroyed. Pulled apart. And dumb, to boot, which is not a feeling I have very often. And for years I have carried the weight of naivety, feeling overlooked and even ignored by the world, by my Creator. I’d played by the rules, smiled brightly along the way, and Alexis died anyway.

But recently after a deep meditation, I had a new experience of how I feel about that time in my life. Instead of feeling used, taken advantage of and overlooked, I began to realize that perhaps Alexis needed me to believe she would survive. She needed her mom to fight, like there was only one acceptable outcome to choose from: A good quality of life for Alexis.

It got me to wondering what the course of events would have been if I HAD entertained death as an option. Where might I have missed advocating with all of my might? Might Alexis’s life have ended even sooner if I surrendered to the inevitability of her demise? What Divine strength did my loyal determination to support this young life, bring to the situation that actually helped us all? I realized, for the first time, that my Faith wasn’t ignored, or taken advantage of. I realized, Alexis needed me to believe that she could live well, to get as far along as we did.

And in this way, my grief has taught me something new, even thought it has taken 25 years to get the message. I showed up in those days, weeks and months as Alexis’ mom, as a hero with ‘strength for two’ which is actually the definition of the term. If I thought she was going to die, I may not have had the will to stand next to, and up for my Daughter. I may have left stones unturned, and had that regret to live with.

I have gone from bamboozled, to grateful and also feel lighter in the world. I can now “forgive” my naïve heart, and instead, “thank” it, for being the machine that fueled the fight of our lives for Alexis’ survival. Believing didn’t make me dumb, it made me powerful, determined, hopeful and open. And although the end result of her death is still unconscionable to me, I can live with knowing I gave everything I had, including a vulnerable determination, to show up for my only, precious Daughter.

The problem with living in a world where grief is a secret, shameful, isolating experience, is that when we lock it away, we miss the gifts there-in. How much sooner could I have been washed over with a feeling of pride, instead of shame so that I didn’t carry the weight of feeling stupid for the last 2 ½ decades? If I could have uncovered this sooner, I could have let myself off the hook and thanked my Faith, rather than cursing it.

The isolation that comes from grieving in a world where it is about as popular to express grief, as it is to age, is that we miss out individually, and in aggregate on the collateral beauty of it all. My pain isn’t softened because I no longer feel regret about my convictions that Alexis would survive. But it is cushioned by a loving awareness that I believed in my Daughter, over and above everything else, and that is something to take pride in, not be ashamed of.

We need to take the stigma out of discussing grief and loss. When we hide, we all lose. And since we have lost so much already, let’s try to ease each other out of the shadows, denial and rage of our feelings that we should have known better or done better. Let’s walk through these doorways instead of cementing them, and the goodness they contain, shut.

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