Category: musings

finding hope in impossible times

I had hoped that my next post would be about ABC’s baptism and the family visits around that, but I haven’t been able to get organized to write it.

There has been a lot going on and a lot swirling in my head, so maybe this post will help…

My parents raised me to always do my best. I was fortunate that my best generally also stood me in good stead in school and in life experiences, as I juggled my various roles and tried to do good in the world.

When my children were young, there was a book about being a “good enough” parent. I remember bristling at the concept, because I was geared to be a “best I could be” parent – and daughter, spouse, sister, friend, citizen, Catholic, volunteer, committee member, musician, person.

The current roster of roles now includes grandparent, blogger, and poet.

And it doesn’t feel as though my best, even when I am able to muster it, is good enough.

Not even close.

With my mom in hospice care and granddaughter ABC in residence, there has been massive re-prioritizing, which is necessary and good and understandable. Some things in which I was accustomed to being very active, such as public policy and social justice advocacy, have been sharply curtailed, unfortunately at a time when my country is coming apart at the seams. I am keeping some of my poetry and blogging activities going, but in a scattershot way as I have time/brainpower available.

(It is not especially helpful to have Facebook reminding me how many days it has been since I posted to the Top of JC’s Mind Facebook page.)

I think, though, that the root of the problem is that nothing I do, whether it is my best or not, can change the fact of the mounting losses. Illness and decline and death and people moving away and rejection and running out of time and all manner of losses, anticipated or unforeseen, will keep happening, no matter what I or any of us do, think, or philosophize over.

And, yes, I know circle of life and faith and recommendations to take care of myself notwithstanding, some days are just difficult to get through without tears.

Sometimes, those days with tears string together.

I am blessed, though, with people who bring me as much support and comfort as they can when I am struggling. B to talk with and give me hugs. The warmth of ABC snuggling in my arms. E and L to step in and make dinner when I can’t wrap my head around the concept of eating, much less shopping and cooking. My sisters with calls, notes, and visits. Friends who are sending thoughts and prayers and who understand my sporadic contact.

Earlier this week, I was looking for a bell for Nana to use to call her nighttime aide. Unsure where to look, I went to a dollar store near the pharmacy where I was picking up one of Nana’s prescriptions. I don’t often go to dollar stores, so it was a bit difficult to figure out where to look. I had started to check out some possible aisles when I heard the unmistakable sound of a bell. I followed it to find a girl carrying a little bell toward the checkout where her grandmother was waiting for her.  I waited until they had finished their transactions and asked where they had found it. (The grandmother told me that the bell said “Ring for Beer” on it and that they were getting it for a beer-loving dad.) The girl cheerfully led me through the store to the shelf in the gifts aisle that held the bells. I thanked her. I chose a bell that said “Ring for Service” on it, paid $1.08, and brought it up to my mom’s, who was surprised that I had been able to find a bell so quickly.

(Feel free to insert your favorite It’s a Wonderful Life, serendipity, answer to prayer, etc. thoughts here.)

For me in that moment, it was a reminder that hope and help can appear unexpectedly in the midst of sadness and confusion and uncertainty.

I just have to listen and allow myself to be led.

 

 

20 Questions

Regular visitors here at Top of JC’s Mind know that life has been challenging for me for a number of months and that I haven’t been keeping up with visiting and commenting on other WordPress blogs as I used to. I haven’t visited my blog’s email inbox in a long time, but there are a few non-WordPress blogs that send notification to my personal email, which is how I saw this post from Eclectic Evelyn. So, I am participating in answering a series of summertime questions to link to her blog (and to have a post that doesn’t involve a lot of brainpower, which is in short supply).

The questions and my answers:
1. Favorite animal? chickadees
2. Wine or beer? neither, although I very occasionally drink a hard cider
3. Socks on/off while sleeping? off
4. One piece or two piece bathing suit? one, although I haven’t had a bathing suit on in years
5. Cooking at home or eating out? usually cooking at home, although I love eating out
6. Pepsi or Coke? neither, as medical issues make sodas unwise for me
7. Regular or electric toothbrush? regular
8. Candy or chocolate? I love chocolate, but am not eating it these days (see #6), so candy
9. Coffee or tea? I never do coffee or black tea, but once in a great while will do an herbal tea (also related to #6)
10. Music or talk radio? talk, but only on public radio which involves no screaming or name-calling
11. Chick flick, action movie or documentary? documentary
12. Regular or mechanical pencil? mechanical, so that it doesn’t dull
13. Swimming or laying out? neither, as I prefer to be indoors
14. Dog or cat? dog, although we can’t have house animals due to allergies (and that I don’t need another being to take care of)
15. What do you drive? SUV, van or sedan? I drive a minivan and our fun, fully-electric Chevy Bolt
16. Early bird catches the worm or night owl? unfortunately, both, because, insomnia….
17. If you could eat only one food for the rest of your life what would it be? pasta
18. While sleeping: Phone in room by your side or phone in another room? cellphone in another room with landline in the bedroom in case of emergency
19. Singing in the shower, yes or no? I do sing, including 35 years with the Binghamton University Chorus, but I don’t sing in the shower
20. Oreo cookies, Eat whole? Take apart and/or dunk? I haven’t had an Oreo in years. As I kid, I used to take apart; not a fan of dunking.

So, there you have it! Please visit Evelyn. If you would like to answer the questions yourself, she has a handy list in her post ready to copy and paste.

catching up

I haven’t meant to keep you in the dark about life here. I just haven’t been able to wrap my head around posting much lately.

We have made a lot of progress with care for Nana. We now have her nurse/case manager from hospice on board and have been able to pass off prescription management to her. The number of medications needed has dropped because a number of them are no longer needed. For example, she doesn’t take a statin anymore because her cholesterol level is irrelevant at this point. It makes it easier to keep track of her meds, especially because hospice has taken over the ordering of refills.

Hospice is also handling medical equipment, such as oxygen and a wheelchair. They are good at solving problems, like providing cushions to protect her ears from the oxygen tubing. Simple things like that make a big difference.

It is nice to have just one number to call. If there are any questions, we just call hospice and they contact whichever doctor or service is needed. There is always someone on duty, even in the middle of the night, to address concerns or problems.

Meanwhile, ABC is already five weeks old! She had a checkup and is now almost two pounds (0.9 kg) heavier and 2 1/2 inches (6 cm) longer than when she was born. She has outgrown her preemie clothes and can wear regular newborn sizes. She is starting to focus on her surroundings. She is playing with some of her toys and is getting more tolerant of diaper changes, baths, and getting in and out of her carseat/carrier.

She is fascinated by her reflection in the mirror.

It is a blessing to have her here with E and L, watching them become a little family and assisting with baby care and general household tasks. Most advanced economies give parents paid time off for this life stage, although, sadly, the United States does not. We are grateful that E and L are able to have this important time to bond, especially because L will have to return to the UK in mid-August. We will miss watching his tender care of her, especially when he sits at the piano with her, cradling her in one arm and singing to her, accompanying himself with his free hand.

We are also blessed to be able to bring ABC to visit Nana and Paco. Unlike the earliest weeks, ABC now stays awake for part of the visit, so Nana and Paco get to see her deep blue eyes.

Tomorrow, L’s mom arrives from the UK and our younger daughter T arrives from Missouri. We are gathering for ABC’s baptism on Sunday.

ABC will wear a tiny white dress, first worn by my older sister, followed by me and our younger sister, twenty-some years later by my daughters, and twenty-some more years later by my granddaughter.

I retrieved it from the bottom of Nana’s cedar chest last week and we will return it there next week, in case another precious baby girl arrives in our family to wear it.

 

Senate shenanigans

While we have been dealing with our own family health issues, I have also been keeping my eye on the sorry spectacle unfolding in Congress.

Last week, the Senate Republicans made public their version of a health care bill to replace the Affordable Care Act. It was drafted by a small group of the most conservative male red-state Republican Senators, without hearings, public debate, the input of health care experts, and contributions of the other 87 Senators, who are Democrats, Republicans, and Independents.

The bill would cut Medicaid over time, raise deductibles, decrease the comprehensive nature of insurance, increase premiums, make insurance unaffordable for millions of people, and give massive tax cuts to the wealthiest Americans.  It faces major opposition from doctors, nurses, hospitals, insurers, public health organizations and advocates, and the general public.

Still, Majority Leader Mitch McConnell plans a vote on the bill this week. It seems that the main reason is to have the first major piece of legislation enacted in the new administration, not to actually improve medical care access or affordability for the American people.

One of the things that has been most annoying is the Republican members of Congress and some pundits and reporters who equate the current process on this healthcare bill to the process that produced the Affordable Care Act. The Affordable Care Act was passed after almost a year of public discussion, numerous Congressional committee hearings, expert testimony, amendments from both Democrats and Republicans, Congressional debate, floor votes, the creation of a bill to reconcile differences between the House and Senate versions, and a final round of voting with met the 60 vote total in the Senate to avoid filibuster.

Contrast this with the current Republican bill, which was written behind closed doors by a small group of Republicans. There are no hearings, plans for only limited debate, and the invocation of budget bill rules which make it impossible to filibuster.

There are two Republican Senators who are opposing the bill because it will hurt their constituents and other Americans. Four other Senators oppose it as not conservative enough. After the Congressional Budget Office analysis came out yesterday, with projections of 22 million people losing coverage and costs skyrocketing especially for those with low incomes and those who are in their late fifties to mid-sixties. there is hope that Senator McConnell will pull the bill or, at least, slow down the process to allow for more debate and revision and to put the bill under regular order instead of trying to reform healthcare through the budget process.

Many of us are inundating our Senators with pleas to protect and improve our healthcare. We’ll see if they listen.

health update

I wanted to give you an update on Nana and Baby ABC.

On Friday, Nana was accepted into hospice care. I now that some people are used to thinking of hospice as a last-days-of-life service, but it is really designed to be an integrated care program over the course of what is expected to be a final illness. It is meant to keep the patient comfortable and as engaged as possible for as long as possible, while also helping the family caregivers.

Nana will have regular visits from a nurse/case-manager, personal care aides, and chaplain. A social worker will be available to help with paperwork and recommendations as needed. A volunteer will arrive to keep Nana company while Paco goes off on his weekly trip to Wegman’s grocery store on the bus from their senior living community. More services can be brought in as needed.

In addition to hospice, we have aides coming in at night to assist Nana to keep her safe and so that Paco – and the rest of the family – can sleep without worrying about her.

Nana has improved over the last few days. It turned out that her oxygen machine that she uses when she sleeps was malfunctioning. Now that it has been replaced with a new unit, she is able to sleep longer and better so that she can have more quality time during the day.

Meanwhile, ABC is two and a half weeks old and doing well. She initially had a bit of jaundice, which is not uncommon in babies, especially those who, like her, arrived a bit ahead of schedule. She had light therapy at home which, along with time, took care of it. At her two-week checkup, her weight was a bit above her birth weight and she is now having a growth spurt and nursing frequently.

It is a joy to watch E and L who are wonderful parents, despite being so new to it. B and I love to snuggle and rock our granddaughter and are finding that our long-unused infant-care skills have reappeared readily.

We especially love being able to take ABC to visit Nana and Paco, who love every moment with their great-grandchild, even though she is often napping during visits.

We expect to see a bit more of her (currently) deep blue eyes in the coming weeks.

The Magician’s Curse – Now Available for Pre-Order!

Linda G. Hill, of the Life in Progress blog, through which she leads One-Liner Wednesdays, Stream of Consciousness Saturdays, Just Jot It January, and other general awesomeness, has a novel that is about to be published. The Magician’s Curse is now available for pre-order. Check it out!

Linda G. Hill's avatar

When Herman Anderson leaves home to make a better life for herself, she doesn’t expect to meet a tall, dark stranger with whom she’ll fall hopelessly in love.

Charming and mysterious, Stephen Dagmar is a stage magician seeking an assistant. The moment he sets eyes on Herman, he knows she’s the one. He brings her home to his Victorian mansion where they embark upon an extravagant romance. Yet a shadow hangs over their love. Will the curse on his family end Stephen and Herman’s happily ever after, before it really begins?

Amidst lace and leather, innocence and debauchery, The Magician’s Curse begins the Gothic tale of The Great Dagmaru. Magic and romance await.

Official release date: June 27, 2017! Pre-order your Kindle copy today here: https://www.amazon.com/dp/B0721ZH2KN
Available soon on Kobo, and on June 27th in paperback on Amazon.

An excerpt from Chapter 2:
The moment Stephen stepped out the door…

View original post 651 more words

SoCS: baby signs

Having a baby in the house again is a revelation.

The last time I was around a newborn extensively was twenty-seven years ago when T was born.

E, L, B and I are all learning to read ABC’s signs.

It seems that every cry, squeak, whimper, wiggle, look, stretch and facial expression is trying to tell us something, if only we could discern its meaning correctly.

So far, ABC is doing well, despite her petite size. She had a bit of jaundice, but we were able to do light therapy at home. Her bilirubin count went down so well that we were able to return the unit yesterday.

It is a joy watching our daughter and son-in-law be such wonderful parents in these early days. It is a privilege to be a first-time grandparent with the baby living in our home for her first few months.

And it warms all of our hearts to see Nana and Paco with the baby, their first great-grandchild. We wish that B’s parents were still alive to meet her, too.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “sign.” Join us! Find out how here:  https://lindaghill.com/2017/06/16/the-friday-reminder-and-prompt-for-socs-june-1717/

 

SoCS: update

I admit that I am cheating on SoCS this week. I had a post that I had to write and it could not be stream of consciousness. My family has had a very eventful week. If you are so moved, you can read about it here.

I admit that tears are involved.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “admit.” Join us! Find out how here:  https://lindaghill.com/2017/06/09/the-friday-reminder-and-prompt-for-socs-june-1017/

 

Low/high

When I wrote this post in the wee hours of Monday morning, I had no idea what new highs and lows the next twenty-four hours would bring…

At 9:00 AM, Nana and I met with her primary care physician, Dr. T. What began as a discussion of her recent symptoms that had prompted us to be there quickly segued into a discussion of how her numerous health conditions and our treatment plan were not succeeding as we had all hoped, how the trajectory while there were ups and downs was trending downward, and how we needed to discuss and prepare for end-of-life planning.

I cried.

As I am sure you can imagine, or, perhaps, know from your own experience, the discussion was painful and emotional, but I am grateful for Dr. T’s honesty, care, and concern that made it possible for us to consider our options and get the help that Nana and all of us need. Barring a sudden event like a stroke, we are likely to have some unknown number of months with Nana, which we want to make as comfortable and peaceful as possible, as filled with family and friends as her strength allows.

We are starting with getting home care recommenced, but the new goal will be to have therapists and aides to help care for her so that she can conserve energy for fun things, instead of wasting it on mundane things. For example, while a goal of her physical therapy had been to be able to walk down to the dining room at their retirement community for dinner, a new goal will be to get a wheelchair so she can ride to the dining room and have energy to eat and visit with friends.

We expect that there will continue to be some days that are better than others, but we hope to have enough support to keep Nana at home in the apartment she shares with Paco. They have been married for 63 years and belong together!

I spent much of Monday afternoon communicating with family members that needed to know what was going on and wrapping my head around our next steps. E and L took over dinner preparations and we settled in for an evening together watching television. E wanted to watch the Stanley Cup (ice hockey) game and was ensconced on the couch with L, when, a bit before 8:00 PM, she startled all of us with the news that her water had broken.

In short order, there was a call to the obstetrician’s office, the message saying to head to the hospital, the hurried assembling of some supplies, and the four of us driving off to the hospital where we arrived at about 8:30.

E and L headed into the delivery suite while B and I set up in the waiting room, thinking that, given that E had not been having noticeable contractions, they might send us home while she rested for the night and waited for labor to begin in earnest. The reason we thought this might be the scenario is that, when I was pregnant with E, my water broke at 36.5 weeks and it took 26 hours for her to arrive.

And E was also at 36.5 weeks.

This was a different labor-and-delivery story.

Baby arrived before 1:00 AM Tuesday, on the sixth of the month.

E was also born on the sixth of the month.

Baby weighed five pounds, five ounces (2.4 kg) and was eighteen inches (46 cm) long.

E was born at that exact weight and length.

Baby has a full head of hair, as did E, although E was strawberry blond (later changing to golden blond) and Baby has dark hair, like L’s.

E and L named their new daughter Ada. Henceforth, I will likely refer to her here on the blog as ABC, which are her initials, but I did want to share her lovely name with you in honor of her birth.

B and I got to share a little time with the new little family before heading home to catch a few winks before the sun rose. We each got to hold our precious first grandchild and reflect on the parallels between E and little Ada.

One more: Ada, like E, is the first grandchild on both sides of the family.

L was able to stay at the hospital with E and ABC until they came home on Wednesday. On Thursday, they went up to meet Nana and Paco.

Nana and Ada 6/8/17
(Great) Nana and Ada meet for the first time

Maybe Ada was in a hurry to arrive so that she could meet Nana as soon as possible.

I’m sure she will bring us all much-needed joy in the coming months.

High/Low

Yesterday was Pentecost Sunday, which began with 8 AM Mass. I knew that daughter E would be cantoring, but found out on arrival that her spouse L was singing with her and that the handbell choir was ringing for the last time before their summer break. It was heartwarming and joyful to hear E and L sing together in public in the weeks before their first child arrives. Our friend music director Nancy said that she could feel L’s breath supporting E, although I think that even into her ninth month of pregnancy, E’s breath control is better than mine.

Unfortunately, the rest of the day was more subdued. We wound up needing to take Nana to the walk-in medical clinic and then to the emergency room for some tests. She had made some gains and started outpatient physical therapy instead of having in-home therapy, but, in the last week, she has gotten weaker and more fatigued. This morning, we have a follow-up appointment with her primary care physician.

Sometimes, it is two steps forward, one – or more – back.