Bad News
"Hi John, we've found something..." Those words ring around my head still.
Sebastian had his 6 monthly check up last week. Due to Covid19 restrictions in place there was still only one parent allowed to attend and as I had attended the last 2 this time Julie attended. I dropped them both off at the hospital and then myself and Grace came home to do some baking. Although Sebastian has been a bit more fatigued of late we'd put that down to starting school and everything around that. We didn't think for a moment there might be anything else causing it.
Halfway through the baking my phone rang. It was Julie. Dr Bell wanted to talk to me. I put it on loud speaker as I wiped my hands of cake mix.
"Hi John, we've found something..."
Those words stabbed at me. The tunnel vision came in. My focus became razor sharp on his words. At the same time a darkness dropped over me like a sudden blackout. All outside stimuli was shut off. 5 years worth of CHD worries and stresses came crashing over me like a tsunami. I felt my head going. I moved from the kitchen to the living room. I couldn't let Grace see my concern. My hands and body started shaking, palms got sweaty. I had to hold it together. I put my professional head on as Dr Bell explained they'd found further narrowing once again.
"Sebastian has gone from mild narrowing to medium." Ok, what does that mean I ask. I know what it means, I just want to hear it from Dr Bell for confirmation, and I'm trying to sound calm and I'm just making conversation while my mind is screaming full volume and in full surround sound: AAAAAAAAAARGH!.
"I remember you said this might occur as he grows" I say, trying to act blasé and hide my feelings and be pragmatic while my mind was still going 19 to the dozen.
"He's not yet at a stage of needing his third open heart surgery. But the narrowing will continue to get worse, but exactly over what time period we can't say exactly. It may be 6 to 9 months. We'll see him again in 6 months and see how the narrowing has progressed. Obviously if you're concerned in the meantime we can see you before"
"Sebastian has gone from mild narrowing to medium." Ok, what does that mean I ask. I know what it means, I just want to hear it from Dr Bell for confirmation, and I'm trying to sound calm and I'm just making conversation while my mind is screaming full volume and in full surround sound: AAAAAAAAAARGH!.
"I remember you said this might occur as he grows" I say, trying to act blasé and hide my feelings and be pragmatic while my mind was still going 19 to the dozen.
"He's not yet at a stage of needing his third open heart surgery. But the narrowing will continue to get worse, but exactly over what time period we can't say exactly. It may be 6 to 9 months. We'll see him again in 6 months and see how the narrowing has progressed. Obviously if you're concerned in the meantime we can see you before"
The call ends with the usual niceties. I feel my eyes welling up. I make the excuse to Grace of needing the loo, and I close the door and break down. Everything hits me. Everything.
I hate that it's not me able to go through it all again for him.
I hate that it's not me able to go through it all again for him.
I'm angry, damned angry, he has to go through it all again.
I feel helpless. I feel useless. I feel I've failed him. I feel more hate, absolute raging hate. Not at Sebastian but at the CHD itself. I'm shaking with total anger and hate.
I feel all this in the few minutes I have. Then I pull it together, dry my eyes and act strong for Grace as we go to collect Sebastian and Julie from the hospital.
My emotions continue to hit me suddenly and out of nowhere over the coming days. It's like a form of grief. And you have to process it in the same way. But this grief is ongoing.
My worries for the future, just to add to my thoughts, are:
This will be his third open heart surgery. Every major surgery has risk. Those risks potentially rise with each surgery. What will the risks be for this one?
Will his heart sustain being "constantly" cut open for surgery?
Will he end up needing a pace maker if his heart can't take the intrusion yet again?
If he is getting narrowing now due to growth at 5 years old, surely that means as he continues to grow that will continue to cause narrowing at different stages of his growth. How many more open heart surgeries will he need before he's fully grown?
At each surgery how will he and his heart cope?
As he gets older and knows more and more what's going on how will he cope mentally from all aspects from surgery to school life?
In the meantime I throw myself into work and life to try to shut all these worries out. But like a foot in the door, I can never shut them out fully. And so life continues. As the weeks and months go by I'll learn to deal with it, I'll go through the usual stages of grief until I reach acceptance, until the next time when it'll simply start all over again.
In the meantime I throw myself into work and life to try to shut all these worries out. But like a foot in the door, I can never shut them out fully. And so life continues. As the weeks and months go by I'll learn to deal with it, I'll go through the usual stages of grief until I reach acceptance, until the next time when it'll simply start all over again.
Well off now to take some paracetemol to clear the stress headache I now have!
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