My Life in a Nutshell

My life has been defined by a single moment. That moment separated my life into the before and the after–the then and the now.

SerenaFour little words changed me, my life, and my path forever. “Your daughter has SMA (spinal muscular atrophy).”

Once spoken, those words distorted my reality. My world tilted, falling off its axis, spinning into a great abyss–and I fell, tumbling, lost, right along with it.

When I finally landed (the free fall took months), I found myself in a completely different place. The scenery had completely changed. The characters were different, skewed versions of the past, as if I had been dropped from one reality into a parallel one where things were similar, but not the same. It was all some how less. The edges were more jagged, the sky was dark and stormy, and all the lines seemed somehow blurred. Nothing made sense, nothing fit.

I didn’t even recognize myself anymore, let alone my husband who had also hit the ground as an entirely different person than the one I had married. Our marriage was different, more difficult. The love that we thought would last forever was worn down to one thread, but we clung to that thread. It was falling apart, but that thread kept us from being apart, at least for a while.

All my relationships changed. How could they not? Some stuck by me through it, but many more dropped away, disappearing in the face of my grief, for no one likes to be reminded of the ugly turns life can take.

I found myself in a House of Mirrors where everything was stretched out and distorted.  My world was broken–I was broken. And I didn’t know how to fix it, if it even could be fixed.

Before those dreadful words that changed everything, I was an idealist. I believed the world was a beautiful place, and I believed that if I was kind and good, kindness and goodness would come my way. I was full of life and passion. God was good. Life was good. My sole desire was to love and be loved, and to make a difference in this world–to push back the suffering of the masses. I believed it was what I was meant to do.

But in the after, after that long heartbreaking road of watching the joy of my life get weaker and weaker, watching her struggle to swallow or even breathe, after seeing my husband breathe life back into her again and again–only to have the one time where it didn’t work, when my baby girl didn’t come back–after putting her tiny, beautiful little body in the cold, hard ground, I instead found myself in the ranks of the suffering. I had gone from trying to soothe the suffering of others to being a sufferer.

Instead of making a difference, I had all I could do to keep existing, to put one foot in front of another, to believe in the hope of a tomorrow that didn’t hurt, to believe that God was a God of love despite my little girl being in the cold, hard ground. Simply living took every effort of will that I was able to bring to bare.

With time, those steps became easier. With time, the idea of feeling happiness again moved from impossible, to improbable, to finally, one day, without being quite aware that it was happening, finding that happiness (or at least peace) started to seep back in and slowly nudge aside the pain.

Serena has been gone for fifteen years, and I am a very different version of the self I used to be. The idealist is gone. I have been too well acquainted with the world and its suffering to ever go back to that person again. I am too well aware that suffering falls on the just and the unjust alike. This world is hard, sometimes even ugly.

It would be tempting to hide, to pretend that the world is fair and good, but that just isn’t who I am. I don’t pretend. I don’t lie, not even to myself. I want to live in this world, the world that is, not the world that I wish would be, and so I’ve spent over a decade trying to make sense of this world we live in. My idealistic me got her undergraduate degree in cross cultural communications because she wanted to fix the injustice of the world. My broken me got her Masters degree in counseling psychology because she knew that she couldn’t stop the injustice of the world–but she might be able to help the broken people who live in that unjust world.

As I muddled through the aftermath of grief, my subsequent children, and all the normal mommy foibles compiled with the special mommy foibles that go along with a family post-loss, as well as the muddle of simply living life in this big, unreliable complex world that we live in, I attempt to apply my underlying belief in God, my understanding of the human psyche, and my hard won wisdom, in a way that might not change the world, but might help us understand it, and ourselves, just a little bit better.

My marriage did not survive the journey. What transforms some, breaks others, and sadly, we fell to the brutal statistic we were warned of: over 90% of marriages fail after losing a child to SMA. Losing her wasn’t the only factor, but it was a large one. Loving, and risking again, after loss, takes a special kind of courage. Some can’t find it in themselves to open up in the same way ever again.

So in the midst of chauffeuring little people to little league and gymnastics, working, and trying to keep up with a house and all the normal middle of life sorts of struggles, I find myself at an ending and at a beginning. The life I thought I was supposed to live has taken a detour, and I’m sorting through it all in an attempt at finding my new path, my new normal. Life gives us these moments, and what we do with them defines us and our future. I’m embracing the change, and I believe, at the end of this, I will see that once again, pain and heartache made me better.

And of course, I have taken the pieces, the life, the wisdom, the pain, and the foibles, and I’ve transformed them into a story. I haven’t finished or abandoned my other story which is about 80 percent done, (a book tentatively titled “When the Movie Ends.” It’s a book about you, and a book about me. It’s a book about someone who finds herself in a life she didn’t expect to live–who expected more than the reality she finds herself in. It is about her journey of finding herself, who she really is, in the real world, not the fictitious one that our youthful idealism builds and believes in. And, it is a story about how, so often, we need to be lost before we can be found.) but I have put it on hold for the time being because this heroine just needs to have her story told. She too finds herself at an ending and a beginning, and she finds herself at place where she can give up, keep the status quo, or where she can emerge as something better. I believe that she is going to emerge as something better…maybe I’m still an idealist after all!

 

me and kids

13 thoughts on “My Life in a Nutshell

  1. Arent we all trying to find that balance? Interestingly, I’m on the publishing side of the book trade, so keep me posted on how that WIP is coming! Meanwhile remember, when you’re struggling with being a mother vs writer, you wont ever look back and regret not writing that extra day, but you may well wonder where all the simple days with your kids went.

    • So very true! I remind myself of that quite often which is why it seems like it’s going to take me forever! 🙂 Balance is one of the hardest places to reach, isn’t it? Maybe one of these days I’ll finally arrive at that imaginary island! 🙂

  2. Heather, as someone who has known you all our lives, I’d like to take a moment just to say that you are an amazing woman. Though we haven’t seen each other in quite some time I’m kept updated of how things are with you and your family. (I see your mom often in this small town!) You have always been someone we could all look up to when we needed that lift up. I’m truly happy that even with the pain and loss you have endured you have been able to continue helping others. Its what you’ve always been meant to do!!

    • Wow Jess! You made me cry! 🙂 I struggle so much with feeling like a shadow of who I was supposed to be. All I’ve ever wanted to do was make a difference, and since I feel so messed up most of the time, I feel like all I’m managing to do is stay afloat. Thank you for seeing more in me than I see in myself. I needed to hear that!

  3. Oh how I remember that beautiful face! You have made so much of your life after that horrible loss. I am so proud of both you and Aaron. 💜

  4. Hi Mrs Graham! It’s me, Kelly Meng from your 5th period Honors English class from last year 🙂 I didn’t have any way to contact you since you seem to have disappeared from the list of Jasper High School staff, but if you have time could you send me an email at kellymeng123@gmail.com? 🙂 I had some things that I wanted to update you on!

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