The Boy who Lived

I just got home from Party City, where I fought back tears.  All I bought was wrapping paper and napkins.  Liam will be TEN tomorrow.  My little boy isn’t having a Stanley, Thomas, Cars, Thomas, Thomas, Dinosaur, Fort Fun, Pokemon party. Liam’s not having a big party.  He’s not having balloons or even a cake.  He’s having  cupcakes he made with his dad.  We’ll gather at his grandma’s house – the same place with the same people where we celebrated his real first birthday.  The same place where we washed him, covered in cake and frosting, in the kitchen sick,  A few days later we went to City Park and raised money for the Heart Institute in celebration of Liam’s life. At that first big party, I handed out birthday candles I made out of  jars from baby food Liam ate his first year.  It was a big deal.

HPIM0428

When Liam turned five, that was a big deal too because I spent his first five years haunted by the statistic I read during my pregnancy that 1/4 of kids like him didn’t survive to start kindergarten.  So, when he turned five I was celebrating that he was in the 3/4.  With the passage of a decade, the statistics have shifted.  Now instead of kindergarten 1/4 don’t make it to high school graduation. . . so the old 1/4 is living longer but not long enough, and it makes me wonder are we in the 3/4 or the 1/4?  I won’t know until we get there, or if we don’t.

I really wish I could remember my son’s actual birthday with joyful nostalgia, but each new year feels frightening.  Will this be the last year? Is this all we get?  I wish I could stop these thoughts, but they come at me every year, reminding me that we’ve cheated death. This is all my personal emotional baggage.  I’ve been holding on so tight for so long, that it takes more strength for me to let it go than to keep holding it in. . . it is time to let it go.

Liam isn’t making a big deal about turning ten.  He’s naturally excited about his birthday, but not for any reason than it’s a birthday and he’s a kid.  He’s just a kid.  I wish when I thought about his birth I could only remember the first time I heard him cry and how it soothed my heart, but I trip forward to the next morning when we had to choose between hospice care, transplant or surgery.

I keep tripping on the roots of Liam’s life, even as he grows like a beautiful tree, changing with the seasons of his life. This is his life, and he is moving forward.  I want to move forward too.  I want to stay in step with him as he bounds through life.  I want to move forward with him in the present and stop being trapped in the past.

Tomorrow I will try not to focus on Liam’s birth but instead focus on his life, the life he’s earned, and the life unfolding like new leaves in the spring.  Still, when he blows out those ten candles, I will make the same wish I always wish . . . more, please.

Modern Liam In Action
Modern Liam In Action

This is a poem I wrote that captures some of the weight I feel around Liam’s birthdays.  I really want to lose my grip on the past and embrace the future.  I am trying, but we were once joined by a cord of shared flesh.  I made that baby, and it’s so hard to let those memories go, to release what was and make room for what is.  I am trying.

Always

I watch you grow.
Though you left my body, a decade gone,
you are always inside me.

Flooded with memories of your infancy,
the flight crew who lifted you to the city of angels
and the long lonely hours I lagged behind
until I found you wired and tubed;

we waited.

I remember each time I signed my name
in consent to open your body,
so many times I agreed to your violation
and surrendered you to suffer for survival;

we waited.

I watch you grow aware, I fear your knowledge.
Amazed how far you’ve come, and the price
for each inch gained. I stagger  to carry
the growing karmic debt that is your life.

We wait.

I watch you grow, approaching my eyes
your head too high for me to rest my chin.
You want me to hold you, all seventy pounds
but I’ve never set you down.

I watch you grow.
Though you left my body, a decade gone,
you are always inside me.

8 Comments »

  1. I love the poem. The first part is my story too. Enjoy your time with your son. Try not to think of that time when he may leave, It may not come and all your worry takes the room away from the memories you should be keeping.

    My daughter was the 1% that didn’t make it through the surgery at 7 months. She was the first patient lost by that surgeon.

    Please keep enjoying everyday with your family.

  2. I hope you and Liam get your wish!! Thanks for the post, I needed it because today I fought back some similar big tears tonight when I was wondering about the unknown future as I watch Gabby play dolls and me thinking she probably won’t ever have babies…… and it breaks me down a little each time when I stop to think about it and her future.

  3. I wish you strength for the journey, hope for safe travel and faith for the destination of your dreams. I love your poem, sweet girl.

  4. Happy Birthday Liam!!!!!! I’ve been reading your book and crying and loving all the moments, because I thought this whole time my experience was a lonely one, only I was suffering and no one else could ever understand. btw, i’m not crying out of sorrow or pity, I’m crying because I am relieved and comforted to know DJ and I aren’t alone. I feel like our stories with our beautiful sons are so similar. I’m not the only one who watched their brand new baby be life flighted away, I didn’t know ahead of time DJ had a CHD, I also got the false positive downs syndrome diagnosis, but they took it back, told me all was ok, I didn’t know DJ had a variant of HLHS until he was in heart failure at 2 days old. My little guy DJ is also turning 10 in June!!!!!!!!!! He’s excited and is telling everyone he is going to be a decade. So he’s fondly called Mr. Decade right now. Last year at nine, he was half a man, at 8 half way to 16 and driving. I can so relate to not knowing how to handle this stage of the game, the cardiologists words still circle my head, “kids like this always die, i’m sorry there is nothing else we can do…” That was three years ago. Keep up the fight Amanda, and of course never believe the statistics, your family are the pioneers for new statistics!!!!! And so is mine!! Much love to your family and your wonderful heart guy!!!!

  5. I had another thought I wanted to share…. I was thinking about your sadness as it relates to Liam growing older, which of course is happy but I so understand it is also very painful watching him get older, just because you hear the clock ticking too. Its also painful for me to watch DJ getting older, only because I don’t know what is going to happen. People all the time comment to me about, “Why are you so sad, DJ lived right, he’s doing ok now isn’t he.” I don’t know why that statement makes me so angry, but it does. Of course I know my son is living right now. But they don’t know the fight it took to keep him alive until today, and that we don’t know if our fighting will get us much farther into the future. But we can never give up. I hate others assume giving up or in is even an option on a heart mom’s brain. I try not to think it is sadness that I am feeling for some sort of loss. But I am feeling an extreme amount of love for life, the life I created in my own belly. I think love = pain. For God so loved the world right? May be it was painful for God too, to let his son go….

  6. Happy Birthday Liam!! Love your poem, Amanda. Liam is a very lucky guy to have such a wonderful mom. You have so much fear (I can totally understand) but each ounce of fear is matched with even more love for him. xoxo

  7. Happy Birthday, Liam!!!! Love, from your Texas buddies, enjoy the “tweens”!!!
    {{{HUGS}}} to you Amanda. We love you!
    Sharon & family

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