The rope doesn’t seem to have an end.

Just when you think you are at the end of it…nope more. Just when you think you can’t take anymore, more to be taken.

So much rope. So much rope. Enough to hang yourself with. Maybe that its purpose

I am definitely on my last nerve as I hang on the not end of the rope. With the virus, Jacob has not been able to receive his hearing aids so he screams all day long and today was no exception, but I needed that exception. I really did. This week is a treatment week. This week we have to again separate our family to keep everyone safe. Steve, Jacob and I in the city. Benno with his grandparents on Long Island. This week is our first time entering the hospital post lockdown (prior was a radiation center). To say I am nervous to take my son to a place of immune-suppressed people is an understatement.

But to begin his treatment week he needed the coveted COVID test first. The test is a nasal swab. Shots no problems with Jacob as he gets them daily, but a nasal swab, which is rarer, is now his worse nightmare. It took three nurses and myself to hold him down as he screamed at deafening decibels. To then be released for his final finale- Jacob trashing the room. Taking the limited medical supplies and throwing them to the ground. Wiping entire counters free of their belongings. And of course, SCREAMING. 

“Why does Benno not get this? Why does he not have to come to the city? WHY? WHY? WHY?” Screams. And I now do this alone. Only one adult allowed up during the pandemic. So when Jacob says he won’t move another inch, in my mask, gloves, and all the bags that have the food and entertainment I need to last hours with a six year old in a hospital, I now have to carry him as he SCREAMS in my ear.

I would say I’m at the end of my rope, but I sadly know there is way more rope to be had. A whole week of immunotherapy. A whole week of watching Jacob writhe in pain, followed by nights of fever that will feel that much scarier in this pandemic.

So I beg, whoever holds the reigns on this rope, could you just throw the whole thing down at once? That would be appreciated. I would accept the challenge of an entire lot of rope rather than the slow feed.