My Mom's Here

Hugh Martin's penned phrase rang across the Cocoa Beanery, pulling me out of my funk a few weeks ago. It was a week before Christmas, and all our most loved wanted "for Christmas," when asked, was for me to be healthy and able to speak again.  The kindest answer anyone could give.  It felt heavy at first, but I knew it was the kindest request.  Hoping that prayers are answered to have this present ready for Christmas, I continued to dread staring down my mental list of all that I should do before Christmas to make it special. The wrestle is, if my heart would be light, I should erase the mental list, do nothing for anybody, and just be.   It seemed like the most selfish but necessary spot to be in. Although, the selfish idea is not appropriate at this point.  Like if a baby is crying and the mother needs to eat. It would do more harm for the mother to feel selfish and not eat than it would to let the baby cry for a minute and have at least a few bites befor...

Well, I end up in obscure places and wonder what's going on.  On line at the cocoa beanery, I have my attention drawn to a man who is waving a book at me.  "I wrote this book, do you read poetry? I wrote this book and sold 600 copies. Here, read this." I'm not in the middle of a city, I'm in Hershey at a relatively yuppy coffee shop.  So I read.  Touching.  Heartwarming. " Very nice," I explain.  I glanced at his bio on the back page and made my way to the line.  (A cornell graduate? Is he retired? Is he okay?) Ordered a salad and cinnamon infused tea. Sat down. It has been a wacky week.  Over all it started well, with good physical signs.  I could talk and eat the majority of the day.  Then the craziness of a labored swallow and the need to drink extra water kicked in about Monday, okay a bit at Saturday brunch.   I guess that is the beginning of the week.  After a morning and afternoon of a few conversations, the last f...

I am generally a good communicator, but when it comes to describing a medical condition or giving an update about myself, I find myself floundering.  Put me in a doctor's office and forget it.  Flounder flounder.  Here's an attempt to document the past few months. Back in October I had plasmapheresis treatments done in the hospital, and I responded well to the treatments.  I was talking, eating, and even singing well during the time in the hospital and for a few weeks after. My health started to decline enough to call again two weeks after being discharged, so I needed 5 more treatments through the month of November.  Mike was noticing that since I was home from the hospital, I am frequently clearing my throat and sound congested.  Each time I was congested in the throat, my talking and swallowing got worse.  This was the beginning of the puzzle, like finding the corners.  At the neurologist appointment back in November, I was stammerin...

I can tell when a nurse or doctor comes into my hospital room and really has a vested interest in trying to puzzle together my symptoms to make a diagnosis and plan. The opposite is what Mike and I call a check-the-box mentality.  The check-the-box people work as if they are saying to themselves, "okay, I am here.  You're stable.  Great. I'm outta here. Check this one off the list." They have a list and then they go down the list. Done. Purpose: check boxes.  End purpose: finish checking all boxes. Agenda: Check all my boxes so I can get on with my life. I am just as guilty as those I am secretly blaming for not thoroughly caring for my every whim.  I'm in a neurological critical care unit, a step down from the icu and a step up from the regular hospital floors.  Many of my fellow floor-mates cannot talk or are immobile.  I am here for a swallowing problem, which has miraculously gotten better quickly, and I am itching to be independent. So, when ...

I'm in the hospital once again with some kind of exacerbation, not quite known yet if Myasthenia Gravis or another cause.  I am unable to swallow and receiving IVIg treatment under observation. Since my primary job is raising two little beauties knowing I would be in the hospital all weekend, I accepted an offer for my sweet Naomi to have a play date with her friend tomorrow, so I was contemplating a fun way to tell her.  While sitting in my hospital bed, I turned to her, "Guess what, Naomi!  Tomorrow I have a surprise for you." "You're done [being in the hospital]?" she asked as her face lit up.  I didn't say no, I just said I had talked with her friend's mom and told her about the play date. She was still excited, but looked saddened that I would not be "done" tomorrow.  I never would have imagined that me being home was on the forefront of her mind, and would be "a surprise."  The sweet hearted child often puts on such a front...