4.28.2011

hearts

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It's been six years since Smootch's surgery that closed the holes in her heart.  She was just a few days shy of three months old and already suffered the indignities of tube feeding, accidental medicine overdose and renal failure.  Her name on the pediatric surgeon's list was bumped to the top only when it became apparent that she would die before she reached the lowest acceptable weight of ten pounds for a heart operation.

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Smootch's surgery was a four hour long surreal dream time for me.  She went into the surgical suite, screaming and hungry, whole but not.  She came out without her holes, but with an abrupt dissection across her chest.  To make her whole, they turned her inside out.  It was nightmarish and fantastic and wonderfully terrible.  She would be fine, she did well, the problem had been corrected, prognosis looked good.

Whew.

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To be the woman who grew the child with a congenital defect is to be both accuser and suspect.  What did I do wrong?  Was it the never ending morning sickness, the painting of the nursery, the following of a foliate rich meal with potato chips and slurpee?  My body, a failure at its most primary task.  If I couldn't make her whole in the first place, what good am I to her now?

Guilt.

I could of sunk down into myself.  I could of made the fact of her defect the fact of her life.  We seek to control but, in the end, it was surrender that saved us both.  For Smootch, to the surgeon's knife (and bone saw) and, for me, to all that would come after.  To the time when that fragile little baby would become a giggling, mischievous girl and eventually, I trust, an accomplished and resourceful woman.  The only way to go was forward. 

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I could also see that even though I gave her a muscle, she brought her heart. And it was more than strong enough to survive a mere heart operation. If she could move on, grow and thrive, I could follow her example. Learn from this resilient little being.

It's been awhile since I've thought seriously about that time six years ago when the doctors fixed Smootch's heart and then she healed mine.  I no longer suspect my body of a primal deficiency and guilt, though sometimes a low level pulse through me, doesn't dog my every step.  There are so many other things my body does right and it also now knows that sometimes bad things happen still.  Even to the babies of pregnant women who tried very hard to Do It All Right. 
 
And now I have grown so used to the surgical alteration on Smootch's person that it almost surprises me sometimes to see a naked chest bereft of that miracle mark.  As much as we've suffered, that adversity, once so sharp and devastating, is now dull old news.  What is left is a scar, a soothing reminder of her strength that will see her through even when life lets her down. And right now, as she sits beside me, occasionally asking questions as she works her way through a phonics lesson, she is my teacher.  And an example to others.  We are all paying attention. 

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18 comments:

  1. That was beautiful. And I am so happy that your baby has grown so well :)

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  2. I can only imagine the emotions that you felt. I so glad that everything went well and that now she is a beautiful and mischievious person!

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  3. She is just beautiful! I have been through something almost similar and know how terrifying and surreal it is, and the guilt, OMG the guilt. I had 2 children at home while I juggled my time in the nicu for 3 weeks, watching our precious child first struggle to breath, lose that struggle and require surgery, and be fed by tubes and look even less alive than a doll...and finally, she showed her true heart and beat the odds and the statistics and came out on top, whole and a force to be reckoned with 5 years later. Its truly a blessing to be part of such a miracle. I am soo glad you had yours too!

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  4. As an adult who grew up with a congenital heart defect (ToF) I can say that you're doing a wonderful job as my parents did. They both felt an incredibly amount of guilt during my first surgery in Edmonton when I was 3. I didn't notice of course because I was busy healing and trying to be a kid.

    In fact, I didn't notice until I went in for my second surgery last month. My dad dropped everything and came to see me in Edmonton to give me support along with my younger brother and sister. He admitted to me that the guilt comes back every now and then, but when he looks at the person I've become, it goes away. Without a little bit of adversity at the beginning of my life, I wouldn't be the strong, resilient person I am today - with a wonderful life and 2 beautiful children (that I'll actually get to hug and maul and lift again in 1 week after my 6 weeks of healing is complete!)

    You're doing the most awesome job. Smootch is as lucky to have you as a mom as you are to have her as your daughter.

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  5. The photos ...and the words, are just gorgeous.

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  6. Amazing pictures and fantastic thought provoking and heart stirring words. I wanted to thank you, this post absolutley made my day.

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  7. <3 Beautiful. Our son had open heart surgery at 8 months old when he was finally health enough to go under (he had gotten pneumonia and RSV twice which delayed his operation). He is now a happy, healthy, bull-headed almost 3 year old.

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  8. Amazing and beautiful. Your words and photos once again have perfect symmetry.

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  9. This made me schmoopy. Beautiful post and pictures.

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  10. I agree with Melissa. I'm all schmoopy.

    My brother had heart surgery at 16, and though it wasn't due to a heart problem that he was born with, I know that that scar of his always meant a great deal to me. I'm glad to get to know Smootch's strength and wonder through you.

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  11. My son was born with both ASD and VSD and had to have surgery at 8 weeks. What a horrible stressful time. The only reminder I have is his little chest scar. Other than that, it's like that was all a dream! Strange, isn't it? I'm happy to hear your little one is doing well too!

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  12. I usually just scroll quickly through my google reader but these pictures stopped me dead in my tracks.These shots are beautiful and it makes me so happy that smooth healed so well. Thank you for sharing this.

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  13. Beautiful post. My son was born with a coarctation of the aorta, VSD, and a bicuspid aortic valve. We knew nothing of this until he was 4 weeks old and his poor body was shutting down. The intial surgery at 4 weeks was to repair just the coarc. That was super scarey b/c we were learning everything THAT. MOMENT. the second surgery was just the summer of 09, when he was 3. Barely 3. That one was actual open heart. As with your daughter, the only reminders are the scars. Who as you say, have simply become a part of who he is. I am preg again now and am freaking out....can I "cook" this one long enough and well enough for everything to come out right. Of course because of my son I will have more echos and ultrasounds and hopefully if anythign is found it won't be as scary since we will know in advance.....I totally understood your post. Thank you.

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  14. I know this sounds trite, but thank you for sharing.

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  15. now i'm crying with my coffee. beautiful story. thank you for your sharing and your strength.

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  16. Yeah, what can one say? Blessings, blessings, blessings.

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