This place is a medical smurf village. Everyone is happy and does a great job. The children are well cared for. They try real hard to make this place happy for the kids. That's the goal here, to take care of the sick kids.
But most of them are a packaged deal. They come with strings called parents and family who spend sleepless nights and agonizing days here. A cafeteria that is barely open and limited on food choices and coffee machines that leave so much to desire that you would rather warm toilet water than drink it.
The food inconvenience is a constant reminder of where you are. It makes you even more miserable because you are hungry and tired and sick of the fucking place you have no choice but to remain at. You can attempt to hunt and gather for food but honestly in this environment you blink and a 12 hr shift has changed and you realize you are starving.
The places to order from suck and each meal is about $20 with delivery. Yet the administration here has a "protocol" no coffee makers, no mini fridge. The refrigerators on site are for the sick kids and rightfully so. Essentially parents: "fuck you if your hungry."
Sometimes on my worse Jason day. The little nostalgic points I brought along with me were my saving Grace. The one thing that kept me from losing my shit here was making a hot cup of Bustelo coffee. Being able to close my eyes with it under my nose gave me a sense of calm, even if just for a minute. It was a proverbial rub on back that this was going to be ok. My favorite creamer is bougie. It's not coffee-mate they don't have it downstairs. Keeping a little stash of it To splash into my coffee brings me the slightest comfort that in this situation I need.
I miss my kids. Especially the one who lays in a bed here. The monster this disease makes him is not my boy. I miss my daughter who is going to turn 6 next month and I feel like I barely know anymore.
I miss my baby boy who seems to be so much more older and mature everytime I see him.
I miss my husband and all the plans we had for this life before this disease robbed us of time together.
I miss my life. I miss the life I built and wanted to continue to build. When the administrators here who implement these rules go home to their lives and families and sleep in their bed for a second I want them to think of me. Not Jason. ME. Think about the comforts you take for granted and think about how many your rules if strictly followed would afford me. A mom who helplessly watches as her son battles this incredibly horrific disease. A mom that is trying to do everything I can to fight the disease with him. A mom that is only human.
I am thankful to every human being I encounter here. Everyone who brings me cold pizza, looks the other way at my coffee maker. And have allowed my mini fridge which is now only stocked with things Jason likes in an effort to give him an appetite. At this point it isn't even for me, so I would fight tooth and nail for it anyway.
But my coffee maker. My community coffee maker that I would offer to any parent in need. The one that gave me fuel on my worse Jason day. How could you try to smite down my coffeemaker?
Dear Administration: Please know that I am human too.
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