A Room with a View: What is the protocol for a mother of an adult child?

As I sit here this morning, reflecting on what is happening in my life right now, I am looking around this too small room with too much medical equipment and too little privacy. As I stare out the window, into a courtyard of construction, and surrounded by tall hospitals and other medical buildings, I like to think of it as a room with a view.

When I turn around and look at my 29 year old daughter in a hospital bed, surrounded by huge machines, monitors, and so many wires and cords, watching her small body struggle to breathe, a mask covering her mouth and nose, forcing enough o2 into her lungs, and helping to remove the dangerous levels of co2 that have been trapped in there. Listening to the sounds of the machine, knowing that pseudo heavy breathing sound, that should be so annoying, is actually very soothing and comforting because it is the sound of my daughters living right now. Too much light to sleep, too much noise to sleep, too many doctors and nurses to sleep, no real privacy, no shower, just a hard plastic covered pad in a corner window, with hard plastic pillows and a curtain for a door. And yet, I do sleep.. some. I have to, I need rest to keep up my strength, for her, the strongest woman I know.

She is scared, and she is letting me know, not something she does often, so, even though I am terrified, I have to be her strength now. I have tears, I try to hide them, hold them back, but they are sneaky, and sometimes they just roll freely, without my control.

The doctors are here. Finally talking about the risks of surgery, signing consents and doing the prep to get her ready this morning. (This is not even THE surgery, not lung transplant, just one of the too many to count, “normal” surgeries of a young adult with CF.) They are talking to her, not me. She is an adult, she has a need to know absolutely everything. She watches, she listens, she asks questions, she makes demands. She is her own best advocate at this point. I mostly watch and listen. I am here to support her, hold her hand, try to clarify if there was something she missed or forgot. I must learn from her though, this child of mine who has lived 29 years and been so strong and so in control of her own life and destiny, despite the fact of really being completely at the will and mercy of a terrible, mean, and nasty, progressively debilitating genetic disease.

She is a survivor, I sit back here and watch quietly, completely in awe. How did this beautiful, intelligent, strong-willed fighter come from me? I don’t ever think why me, why her, why us. I say thank you for her, she has taught me so much. I suffer from heart-wrenching pain: heartache I guess it is called, for her, for what she goes through every day, just to do what we all take for granted, breathe.

It is not really fair, but what in life is? We all face hardships, we all struggle. Is any one person’s struggle worse than another’s? I presume not. Each is our own to bear. That is why it is so hard to ask for help. Everyone has a life to live. It is easy for no one, or for precious few, at least.

I am in a children’s hospital, in ICU, it is all around me. We are far from the only ones struggling, there are so many sick. But she is still my baby girl, part of me, my heart, and as I sit here, looking around this room, listening to yet another monitor beep, hearing a doctor say this procedure could take anywhere from 2 to 8 hours, with worries in the back of my head about paying bills, not being at work, probably not getting much of a paycheck next week, worrying about my 10 year old son at home, worrying that no one will get him up and on the school bus, worrying that no one knows our routine, I know in my heart that all that will be worked out, and I am right where I need to be, I couldn’t possibly be anywhere else!

#cysticfibrosis #guest #family #dying #boston