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DAY 87 UPDATE- April 06, 2024

We are coming up on ninety days since that horrible day in January that changed so many lives forever. Some days, it is very hard to even believe that it actually happened. Yet here we are, and each reality of the new daily routine has a way of verifying that, YES, it DID happen. 

Four times a day, my son receives medication plus the vast majority of his hydration and nutrition through what is called a G-tube. Essentially it is a port that is surgically installed in his tummy so that we can directly administer these life sustaining elements through an IV connected to a pump. End to end, including pre-prep and final steps is a minimum of an hour and a half.

Each day four times a day, GREGORY patiently waits as the process takes place. He never seems to get restless, he just lays there, looking at me with the compliance of an angel as I prepare, being sure everything is ready. 

I often wonder what he’s thinking as he sees me pouring protein formula into the feeding tube bag, measuring medications, wiping everything down with alcohol swabs, bitching under my breath at the IV pump when the alarm goes off because of some glitch. Other days he sees me frantic because I’m not moving fast enough to get us out the door to rehab or a doctor’s appointment. 

And on occasion, he sees days where Daddy is “on point”, and efficient, moving with the skill a precision of the first responders, ER doctors, and surgeons that saved his life. 

Still other days, he sees Dad is a mess, tears streaming down his face as he administers his son’s breakfast through a tube, feeling sorry for himself knowing this is his son’s “new normal “. At least for a while. 

I wonder what Gregory really thinks about all of this? And even further still I wonder, CAN he understand what he sees as this great “fuss” is made over him all day long?

The tears flow.

But NOT from my son. He simply watches, no tears. He follows my basic commands the very best he can, making it easier to perform the multiple steps I take in our routine to keep him on the right track, to heal, to emerge. 

As I go through the motions, and the emotions of the new daily routine, I see my son working hard. My often burdensome tasks are simple compared to his. The new reality points out that I’m not the only one working hard, and I go to my knees in thankful prayer.

On some mornings like today, I get to crawl into the warm and comforting space next to my beautiful son, the slight sound of the IV pump doing its job. I see the view he sees so often. We are together, and everything is okay. 

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