The Shape and Texture of a Decade

Eight days ago, I attended my 20 year high school reunion.  It was good to see old friends, but I found I am an entirely different person than I was 20 years ago.  My alteration is unsurprising, most people change within the grist of 20 years.  What was strange is that I am also an entirely different person than I was just ten years ago at the last reunion.  Age tempers us all, but I lost the receding and uncertain person  I was ten years ago in the ten years that followed.


At my ten year reunion, I’d been trying to get pregnant for over a year.  I was barely twenty-eight, and my tension was obvious.  I was bitter, angry, jealous and hurt that it seemed everyone and anyone else could get pregnant whether they wanted to or not, and I, who wanted so badly to have a child, could not have one. I enjoyed seeing my former classmates, but I wanted the next phase of my life to begin, and I felt stalled and deprived. I felt like I was trying to move forward and was trapped with my frustration and bitterness instead. I was not a happy person.

Then, just a few weeks later I did get pregnant, and a month later a test confirmed my impending motherhood.  It’s still unfathomable to me, even after living it, how quickly one can ascend from despair  joy with the promise of life.  I did just that in August of 2002, and my joy grew and swelled with my belly.

An earlier ultrasound, I don’t have a e-copy from 12/30/02

My elation peaked and popped on December 30, 2002, ten years to this day.  I was the happiest I’d ever been until that moment of my life.  I was happier than I thought possible, when told I was having a darling little boy in a dark ultrasound room.  I was so happy my heart could have burst, and not two hours later it did. It shattered, and it is still not what it was.  It will never be.


It’s still unfathomable to me, despite the living of it,  how swiftly one can descend from absolute joy to utter despair with the threat of death, and that is exactly what happened ten years ago today.  How strange that I went from the happiest I’d ever been on what became the worst day of my life.  How entirely complete that day was in my short life with every emotion a person can know washed through my soul like a flood taking all of nature through a canyon and leaving a barren landscape of absolute destruction.  Nothing would ever be as it was or as I thought it should be.

Yet, one little seed of hope clung on and from that hope grew my will to fight for Liam’s life.  I didn’t want to wipe my womb clean of this child I wanted so badly and just start again and hope for better.  I wanted him; I wanted Liam and I chose him in a way few parents will ever choose a child.  I chose him exactly as he was, and I chose not to let him die and to dedicate my own life to saving his.  I became a pilgrim ten years ago today.  I choose our path in the darkness, and I have held fast and true.


Everything I was before December 30, 2002 became artifact.  My old life was a before photo of a natural disaster.  Over the ten years that I’ve  rebuilt myself, I’ve been called brave, strong, wise, inspiring, and many other pleasant things.  I’ve also been called jealous, selfish, distracted, obsessed, and many unkind things for my singular focus on battling the disease that always threatens my child.  Most of those negative assertions come from my own head in the depths of my hopelessness and fear, but I have not faltered in my faith that Liam deserves the best life he can make for himself, and I owe him my effort of lighting the path he must take up on his own.  I owe Moira the same, and at times it’s harder to give her that because the strength I’ve built trying to save one child has rendered me less graceful in aiding the other.

Liam at two weeks age
Moira at two weeks age

 I know my  faults.  I don’t believe myself to be particularly brave because choosing Liam was never  an act of valor but an act of love .  I know I am strong because I survived all of this, and I continue, despite the detractors who question the wisdom my passion and the merit of my fight.  I think that’s mostly because I’m not as “lady-like” or as “nice” as they think I should be in my battle with CHD or my implicit and searing honesty about what it’s really like.  It’s OK, I’m not a “nice lady” so much as I am a “mother bear.”  I’m using my brain to facilitate what my heart instinctively knows to be true; my son should not suffer if there is hope and science that can save him.  Nor should any other child suffer or die.  I believe that not because I’m a zealot, an egomaniac, or an obsessive, I believe it because my heart tells me it’s true. I believe it because I walk beneath the weight of a mother’s love.  And within that weight I must find a balance to be the right kind of mom for two very different kids.



I’m not the person  I was ten years ago.  I’m no better, but I am so very weathered.  In some places I’m hardened, and in others I am weakened and brittle.  I am exactly who I was meant to be in order to do what must be done. Now I know I must take stock and take care of myself and my well-being too.  What happened to me and to Jim ten years ago when this threat and this war began, drew us  closer together.  We were and are in this together.  We do not have the same outlets, but we have the same obligations to each other, to Liam, and to Moira.  His patience with my passion is astonishing.  I  am blessed beyond measure.


Those three people are the ones whose opinions, feelings, and concerns about what I write, how I fight, or what I do in the Heartland really matter to my own heart.  They are the only people who can shut me up, and if I am ever silent it is in deference of their needs.  They are the people who will change me the most, and they will each always change me for the better.


Ten years ago I was shattered, but I put myself back together with the help and love Jim, Liam, our families, friends and  hundreds of people and the glue of family.  Moira in the mix makes me a better and whole person because she, Jim, and Liam all remind me there is more to living than surviving.   I’ve always been supported and loved, and that gave me the strength to save my son and myself.  It is my greatest wish that I can give that back to the world.  Thank you to every person who’s been on this decade’s journey with us and watched my evolution without judgement and with love.  You helped make me the Amanda I am, and she’s really not so bad.  In fact, she’s a very happy person.


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