Don’t You Go Breakin’ My Heart

Do you remember what you thought about in the third grade? I do – I was always afraid of “Bloody Mary” coming out of my bathroom mirror (or the mirror in the school bathroom, or any bathroom anywhere) to stab me to death.  I was fully sold on that and lived in terror whenever my bladder or bowels betrayed me.

My son, Liam, isn’t aware of Bloody Mary, he isn’t afraid of vampires, or Freddy Krueger, or Jason from Friday the 13th.  What  Liam is afraid of is his forthcoming pacemaker surgery and tonight he asked if we could have a mom-to-Liam talk.  He wants to not have a pacemaker.  In his 8-year-old mind he thinks that he can just forgo all roller coasters forever to avoid this surgery.

“I just don’t want my body cut open.”

That is one of the many things he said to me with tears in his eyes tonight.

I’ve stared down doctors with really bad news, nurses, clergy, my own family and choked back my fears and spared them all my tears as I’ve sent this child, my child, onto a table of pain and misery twelve times.  But today, today was the ultimate test of my motherhood, and I passed.  I feel like Gladrial when Frodo handed her the one ring – I was true to myself and my mission.  I was honest and compassionate with my son.  I put him first instead of hiding or averting.

If you’ve never read Lucy Grealy’s Autobiography of a Face, you should.  Her mother was out of her depth with a child facing a 90% chance of death from her jaw cancer.  She wouldn’t let Lucy cry and would scold her if she did despite the misery and pain of her 1970s era chemo.  Lucy’s father wouldn’t stay in the room during her cancer treatments and she endured months in the hospital all alone.  This book was sad, but not half as sad as the end of Lucy’s life – in a drug overdose because she never really got over being sick and disfigured as a child.

This book also was a beautiful gift to me in the form of a cautionary tale.  This is what I told Liam:

“It’s OK that you don’t want a surgery.  It’s OK that you don’t like it.  Mom and Dad don’t want to do it, we don’t like it, but there are lots of things in life we don’t want to do, but that we have to do.”  I explained the part of his heart that wasn’t working.  I told him we could talk to the child life specialist about his fears.  I told him it was totally normal and his right to be afraid and unhappy about this and I don’t expect him to be happy about it or to like it.

I also told him it wasn’t about the roller coaster.  There are no trade offs here, and that is a hard, hard truth that I’ve had nine years to absorb for Liam.  Now that wave is hitting him.

I told Liam that if he’s afraid of the gas mask, he can get an IV instead, that that is his choice.  He seemed to do better knowing he will have some choices.  He wants his whole family, including cousins to come visit him in the hospital – he feels very alone with this.  I hope he feels less alone now.  I told him he can tell me anything and I won’t get mad.

I didn’t cry –  not yet.  He’s still up, standing right here having a Thomas retrospective with his toys that he hasn’t played with in a year.  I thought, he’d forgotten about the surgery, but he just said it again.  “I still don’t want that surgery,”  well, neither do I, Liam.  Neither do I, but I want you here.  That truth about why we keep trying to “fix” his broken heart, about why it would be scarier to not have the surgery, about how this is all part of our plans to keep Liam alive, well that’s for another day.   When he asks, I’ll try my best to be ready.


6 thoughts on “Don’t You Go Breakin’ My Heart

  1. Amanda,
    You are an amazing writer and an even more amazing mom. Liam is so blessed that you are his mom. I read these stories and I know that we could face these same hurdles in our future and I cherish every day that Caroline is healthy and happy. I will say some extra prayers for Liam that he can have peace of mind and heart. Heart hugs!!
    Stephanie, Noah and Caroline (HRHS)

  2. I can’t imagine how hard it is to see your son’s tears of apprehension over such a serious issue. No doubt your strength and patience will go a long way to reassure him. I don’t know how you do it. You truly are stronger than you think you are.

  3. Amanda-Thank you for sharing this conversation. Another example of a moment that most moms never have to experience and so it takes another heart mom to really get it. And to share the grief that these moments are not the reason we dreamed of becoming a mom – but you handled the conversation with such grace. I’m sure the time will come or has come to cry or be angry. But in the moment, you kept it together for Liam and gave him permission to be honest.

  4. You did great in an impossibly difficult situation. I think it is so important to acknowledge his fears and let him know having emotions is part of life. That was very clever to give Liam choices and some control over the event. He is lucky to have such a close and loving family.

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