Entry 20: Life in the slow lane

Posted by Sherri Viner on September 28, 2017 at 12:20 AM

People are always in a rush. Every time we are out on a drive to try to get the kids to take a nap in the car, seems everyone either wants to hitch onto our tow or race us to the next set of lights. Could it be that we are so good and busy being busy that we are overlooking the simpler things? Sometimes we focus so hard on future event that we don’t actually live in the present. Really live in a moment and be able to do it in a way that matters. Having Nicholas has given us the opportunity and purpose to just slow down.

There is not one single day, where in the course of that day, I don’t look at Nicholas and get so overwhelmed with love, anger, sadness, gratitude, and back to love. Some days it’s only a handful of times and on other days, I seem to be more aware or sensitive and consumed by its frequency. It’s the same thing every time though and all of those feelings happen in precisely the same order. I look at him and I just think to myself how crazy in love with him I am and how much I adore everything that is only him. This of course then triggers the anger. It just keeps building inside as I fuel the fire from my internal complaints of the unfairness of it all. Why him? Why the hell did this have to happen to him? After the rage and fits of anger, I then begin to feel the intense feeling of sadness. The real truth of heterotaxy and CHD hits and it becomes all too familiar. The feelings of despair in knowing that despite every effort that could ever be made medically for Nick, he will only ever be able to look forward to organ failure. And even with the chance that he makes it to receiving a transplant, that is not a cure by any stretch either, it’s a lifetime of antirejection medications and just more borrowed time. After I’ve wallowed in the Pity- party of one, I pull myself together and I am instantly humbled by gratitude. I realize that he’s physically in front of me with half of a heart defying all odds even with all the chips stacked against him. But he’s here, in arms reach where I can touch him, and kiss him, and hug him, and tell him how much I love him.

So the moral of it all is that there may be a whole lot of “things” that get in between, but remember to always start and end with love. But before you go and start to think that there may be a chance that I will become overly sweet with all of these precious sentiments, never fear because we are but a second away from crying, screaming, and tantrums. For the shenanigans will have commenced and it’s back to the business of being a mom as usual!

Categories: September 2017

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