Legos for a Child With a Hole in His Heart
This article was posted on the PCH warriors and advocates Facebook group I belong to. I didn't have time to read it then, so I printed it, figured I would just type it up for the blog and read it then. Boy, I had no idea. This article hits home. So it may not have been a hole in his heart or the heart bypass machine. But it was a mutation of his genes, mixed up letters. It was the vent and the chest vest and cough assist machine. It was the hours of waiting during bronchoscopy and surgeries. It was the many calls to 911, ambulance rides, walks into the ER and then down the hallway to the pediatric intensive care unit. And it wasn't Legos but it was Spderman.
This article is 100% on target with the thoughts and emotions.
The New York Times by: Kate Ristau
"Can I get it?"
His tiny hands are outstretched, his feet firmly planted in the Target toy aisle. He is holding up another Lego set.
Rowan is 6 years old, and his admiration for Lego building blocks is unending.
My fingers tap the red handle of the cart. He's getting spoiled. Everyone knows it, but no one says it, and the reason is simple: He had heart surgery in April. He was born with two holes in his little heart. One closed, but the other one stayed open. We watched it. We hoped that it would close on its own.
But it didn't. Instead, his heart became more and more enlarged. Over time, that can permanently scar his lungs' blood vessels. It can lead to arrhythmias, shortness of breath and swelling. It can lead to valve damage. It can lead to death.
I grip the cart, feeling the tightness in my own chest, the ache and pull of the stone that dropped down into my lungs the day we scheduled his surgery. For months, that stone has been stuck there, somewhere between my lungs and my throat, holding back the tears and the weight that grab me unexpectedly in the long hours of the night. That stone never disappears.
Now we're standing in the Target aisle five weeks after heart surgery. His hands are outstretched, and I'm thinking of all the Legos he's gotten - four sets the week before. He keeps asking, and we keep saying yes. We'll never stop.
I know. We have a problem. Trust me, my husband and I have talked about it. We want our son to appreciate what he has - to not need so much. To not want so much. We want him to find joy in the little things. To dig his hands in the mud or drag sticks through the backyard. We want him to build with his piles of Legos that are already covering the living room floor.
And then there's the credit card statement on the kitchen counter. The hospital reminders on the desk. The phone bill in my email.
But we can't help ourselves. And it's not just this box of multicolored blocks. We took him to Legoland right before his surgery. We stayed at the Legoland hotel, and he ordered room service in his new Lego Batman pajamas. At Heartlake City in Legoland, he ate a crepe with his Lego Friends. And we couldn't leave Castle Hill until he got his pick from the King's Treasury - a stuffed purple unicorn. That wasn't even all of it. Rowan exited Legoland with two different Batman vehicles, as well as a handful of Lego people that he spotted in the gift shop before we passed out the final turnstile.
It's not just that we want him to be happy, although that's a big part of it. We do want him to smile. But the Legos, the ones that we shoved into our suitcases on the way to the hospital, are more than just toys. Block after block, we're building up time with him, we're living in the moment, and we're creating the memories we want to have, and guarding against the ones we can't escape from. We're guarding against blood clots, pacemakers and pain.
We're guarding against death.
But I don't say that out loud. Not before his surgery, not during, and not after. Because if I do, and he dies...then none of the pieces will fit together. We won't be a set anymore. It will just be me, standing in Target, holding those Legos, and holding onto that perfect moment where there was space and a smile and an aisle full of toys; where there was air and there was life and there was a perfect little boy. Where we were riding the Ninjago ride for the fourth time with our 3D glasses, and money and credit cards and hospital bills didn't matter because he was there, and he was happy.
I stare down at the package in his hands. It's a Batman set - the Joker Balloon Escape. It's ridiculous, really. Batman is shooting his grappling gun at the Joker, who is flying away in a cloud of rainbow-colored balloons. All for $14.99.
I swallow the stone, clear my throat, and nod my head.
"Yes," I say. His eyes light up. His face breaks into a smile. "Put it in the cart."
As I write this, my eyes well up and the stone rises. I wipe my face, and I swallow it down again, but never away, never gone - even after the surgery, even after the weeks of recovery. Because I've waited those seven hours. I've walked into that intensive care unit. I've seen him with that breathing tube, I've seen him in that wheelchair, and I've seen him dizzy - struggling to stand. I've heard the cardiologist say blood clot, and I've watched the fluid in his chest. I've stood on the edge of life as the heart bypass machine worked the blood through his body, and I swallowed that stone 30 times as I waited for him to open his eyes. Just open his eyes. Just open his eyes.
And sometimes I think that's what love is. It's the heart-shaped stone stuck in your throat. It's the Legos. It's the way he looks up to you. It's the flash of smile, his glittering eyes, and the feeling that if anything ever went wrong, you'd find those Legos, you'd hold up that toy and you'd tell anyone - anyone who'd listen - that he was the best of you.
That he was the heart and the stone and the smile and the balloons. He was the air and the tears and the laughter and the toys. He was yours. Forever.
This article is 100% on target with the thoughts and emotions.
The New York Times by: Kate Ristau
"Can I get it?"
His tiny hands are outstretched, his feet firmly planted in the Target toy aisle. He is holding up another Lego set.
Rowan is 6 years old, and his admiration for Lego building blocks is unending.
My fingers tap the red handle of the cart. He's getting spoiled. Everyone knows it, but no one says it, and the reason is simple: He had heart surgery in April. He was born with two holes in his little heart. One closed, but the other one stayed open. We watched it. We hoped that it would close on its own.
But it didn't. Instead, his heart became more and more enlarged. Over time, that can permanently scar his lungs' blood vessels. It can lead to arrhythmias, shortness of breath and swelling. It can lead to valve damage. It can lead to death.
I grip the cart, feeling the tightness in my own chest, the ache and pull of the stone that dropped down into my lungs the day we scheduled his surgery. For months, that stone has been stuck there, somewhere between my lungs and my throat, holding back the tears and the weight that grab me unexpectedly in the long hours of the night. That stone never disappears.
Now we're standing in the Target aisle five weeks after heart surgery. His hands are outstretched, and I'm thinking of all the Legos he's gotten - four sets the week before. He keeps asking, and we keep saying yes. We'll never stop.
I know. We have a problem. Trust me, my husband and I have talked about it. We want our son to appreciate what he has - to not need so much. To not want so much. We want him to find joy in the little things. To dig his hands in the mud or drag sticks through the backyard. We want him to build with his piles of Legos that are already covering the living room floor.
And then there's the credit card statement on the kitchen counter. The hospital reminders on the desk. The phone bill in my email.
But we can't help ourselves. And it's not just this box of multicolored blocks. We took him to Legoland right before his surgery. We stayed at the Legoland hotel, and he ordered room service in his new Lego Batman pajamas. At Heartlake City in Legoland, he ate a crepe with his Lego Friends. And we couldn't leave Castle Hill until he got his pick from the King's Treasury - a stuffed purple unicorn. That wasn't even all of it. Rowan exited Legoland with two different Batman vehicles, as well as a handful of Lego people that he spotted in the gift shop before we passed out the final turnstile.
It's not just that we want him to be happy, although that's a big part of it. We do want him to smile. But the Legos, the ones that we shoved into our suitcases on the way to the hospital, are more than just toys. Block after block, we're building up time with him, we're living in the moment, and we're creating the memories we want to have, and guarding against the ones we can't escape from. We're guarding against blood clots, pacemakers and pain.
We're guarding against death.
But I don't say that out loud. Not before his surgery, not during, and not after. Because if I do, and he dies...then none of the pieces will fit together. We won't be a set anymore. It will just be me, standing in Target, holding those Legos, and holding onto that perfect moment where there was space and a smile and an aisle full of toys; where there was air and there was life and there was a perfect little boy. Where we were riding the Ninjago ride for the fourth time with our 3D glasses, and money and credit cards and hospital bills didn't matter because he was there, and he was happy.
I stare down at the package in his hands. It's a Batman set - the Joker Balloon Escape. It's ridiculous, really. Batman is shooting his grappling gun at the Joker, who is flying away in a cloud of rainbow-colored balloons. All for $14.99.
I swallow the stone, clear my throat, and nod my head.
"Yes," I say. His eyes light up. His face breaks into a smile. "Put it in the cart."
As I write this, my eyes well up and the stone rises. I wipe my face, and I swallow it down again, but never away, never gone - even after the surgery, even after the weeks of recovery. Because I've waited those seven hours. I've walked into that intensive care unit. I've seen him with that breathing tube, I've seen him in that wheelchair, and I've seen him dizzy - struggling to stand. I've heard the cardiologist say blood clot, and I've watched the fluid in his chest. I've stood on the edge of life as the heart bypass machine worked the blood through his body, and I swallowed that stone 30 times as I waited for him to open his eyes. Just open his eyes. Just open his eyes.
And sometimes I think that's what love is. It's the heart-shaped stone stuck in your throat. It's the Legos. It's the way he looks up to you. It's the flash of smile, his glittering eyes, and the feeling that if anything ever went wrong, you'd find those Legos, you'd hold up that toy and you'd tell anyone - anyone who'd listen - that he was the best of you.
That he was the heart and the stone and the smile and the balloons. He was the air and the tears and the laughter and the toys. He was yours. Forever.
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