Halloween 2020

 ‘Neath the Blue Moon

Silhouettes dance

‘Round the fire

In a trance

Holding hands

Up high then low

Swaying always to and fro

Chant so slow 

Then pick up speed

Calling, calling

Happy Halloween!

I almost missed Halloween, like so many of this year’s special days it doesn’t feel special.  I do put out some decorations and get some little goody bags ready just in case any trick or treaters Caine to the door. This year not too many in my neighborhood are participating, if I go by how many houses have their outside light in. We’re the only house on the street with the light on.  On a normal Halloween we get maybe 7 trick or treaters. It’s so strange! When my girls were young the neighborhood was teeming with children of all ages. We mothers took the younger kids around and the fathers stayed home to give out the candy. When the kids were a little older either one or two mothers or fathers wrangled a group, or someone’s older sibling was tapped to supervise. Those were good times, I remember them fondly. Just as I remember trick or treating as a child with my brothers. There was one house that we went to first, where friends of my mother lived. They lived about 3 houses up the hill on the opposite side of the street. They were an older, childless couple who had a miniature white poodle named “Susie” who my younger brother and I spent time playing with while our mother visited with them. Their names were Ethel and Shorty. On Halloween they always had full sized Hershey bars for us, smaller bars for other kids. It was nice to feel special like that.  My older brothers took us out around the block, I don’t ever remember my parents taking us around. My mother handed out the candy to the kids who came to our door. I kind of miss those days, too.

There’s no doubt that this year, because of the pandemic, many things are very different from what we’re used to. I wonder if one day we’ll look back at these things that are so different and miss them. In some ways they are quieter and leave time for more introspection. Perhaps we’ll miss that aspect. It remains to be seen.

You Don’t Know Her

 We have been in the hospital for over 4 weeks.  My biggest problem with this hospital stay (aside from illness necessitating our stay) is the lack of consistency in her daily care. There are so very many doctors involved, and I feel as if they are sometimes working against each other. I believe they are trying to do their best, but they are unused to someone with such a complex history and constant needs. Having different nurses and nursing assistants caring for her also does not allow for consistency. They rely on their computerized charts which is all well and good, but if there is something that isn’t noted in the chart, or is for some reason not seen by the next shift, things fall through the cracks. Things like IV’s not restarted, medications not sent by the pharmacy at appropriate times, and lag times in care such diapering or positioning changes all lead to inadequate and potentially dangerous medical consequences. I do not fault the staff, as there are truly not enough of them working at any given time. They are doing their best, but with such a complex case it cannot be enough. This is why I stay, why I camp in this uncomfortable recliner that is terrible for my back & sleep in my clothes. It’s why I leave the building only when my husband is here with her, and grab very quick meals in the hospital cafeteria when he’s not. So when the staff tells me to go home and rest, and when I decline ask me if I don’t trust them, my short answer is no. It’s because you don’t know her like I do, you don’t understand her nonverbal sounds, her looks, her wants and needs. So I stay. And I will do so until I can take her home with me. I will ask you questions and tell you when I don’t agree, and will turn away from you rather than yell at you or slap you; I will act like a reasonable adult so you have no reason to brand me as “an emotional overreacting mother”. This is my child, who I have kept safe & healthy for decades, and plan to continue to do so as long as I breathe.

Here We Are

Hello, October, number ten

I’m glad to see you here again 

Cooler temps and brisker breezes

Hint that soon we’re in for freezes

I welcome them, your colors too

Also the time for soup and stew

Cozy blankets, sweaters, tea

These are things that comfort me

Changing seasons can be good

October brings a reflective mood.

Well here we are at October and this long year is finally heading toward its end.  This is my time of year, it feels good to be winding down from busy, hot, summer days. So far, however I have been unable to enjoy the golden sunshine, longer shadows and refreshing temperatures as I am camping out at the hospital with my daughter. She was quite ill, and as she is not able to communicate, here is where either I or my husband will be until she is well enough to leave. It’s been over 3 weeks since we drove her to the ER late in the evening on a Friday, and what an odyssey it has been!

I’ve had a lot of time to reflect on many things while we’ve been here. I’ve realized that one of the most important qualities in a healthcare provider is an open mind. Thankfully one of the doctors who is treating our precious girl is willing to truly listen to my thoughts on what’s going on medically with her, and act as a team in treating her using a combination of his education and expertise, and my knowledge and instincts as her mother and caregiver for 28 years. A doctor like this is a treasure. We have had a number of such doctors involved in her care over the years and it helps more than I can express. When doctors don’t truly listen and take into account my thoughts on proposed treatment and her medical history as well as anecdotal information that may not align with their experience, it is a frustrating thing. It can delay treatment and recovery unnecessarily because sometimes people’s illnesses don’t follow the case histories the professionals have studied. Medical science is constantly evolving and the open minded doctor is the one who will put patients and families at ease and build trust. When you feel respected you are more likely to accept difficult information and work with rather than against the medical professionals. Attitude is important as well. If someone comes in with a negative, resentful or superior attitude it sets up a kind of adversarial atmosphere that does not lead to teamwork. As we try to figure out this puzzle of my daughter’s health and work toward her release from hospital and return to home, I count on those open minded professionals and nurses with a caring, can-do attitude to keep things heading in the right direction. Prayer doesn’t hurt, either.

I don’t know when we will finally be able to leave here, but I pray it will be while there is still plenty of beautiful October weather to enjoy. It is my favorite time of year. But for now, here is where we are.