Monday, December 29, 2014


My Mom is fairly low-maintenance as housebound elderly folk go.  She needs to be weighed daily, medicated twice daily and bathed weekly.  She fixes her own breakfast, finds her own snacks and comes over here for dinner.  I have to be vigilant about odd things:  Keeping wastebaskets emptied so she doesn't simply drop trash on the floor, keeping the cat boxes cleaned, and keeping the bathroom well-stocked with 'panties' and other supplies so she doesn't run out, forget she needs to wear them.  I do her laundry, order her medications, pay her bills, sort her pills and make sure her house gets cleaned. I do her grocery shopping for her and periodically make sure nothing in her fridge is going to kill her.  Add in the odd doctor's appointment and pacemaker check and you've got the whole package, more or less. 

And this is an easy-to-care-for old person.

I estimate that this takes me no less than three hours a week spent on her side of the house, and she spends at least half an hour a day on our side, frequently more.  We are blessed in that a good friend of hers comes and makes dinner with her on Friday evening, so she has 'company' and we have an evening to ourselves. 

When we have guests, they learn to deal with her dementia.  At first, everybody stops the conversation every time she interrupts to change the subject, or tries to bring her up to speed when she is six sentences behind.  After about half an hour pretty much even the politest person realizes that this is futile (although sometimes entertaining) and just glosses over the confusion as best as possible.  The problems is that she appears to love to hang out in crowds of people, so unless I point out that total strangers are going to see her in her nightie and she should get dressed (a sure-fire party-buster in HER mind LOL) she'll just hang out.  This wouldn't be SO bad, but she'll criticize other peoples' manners or my choice of guests. To their faces. 


I know it's easy compared to having to keep the house locked to keep her from running away, and shutting down the gas, and having to do more daily personal care and things like bedsore prevention.  But 'easy' and 'never-ending' don't seem to sit well in the same sentence, do they?


Friday, December 26, 2014

Post-Holiday Glow....

The house has cups and crumbs and candy wrappers in every corner, and I just found two gifts that I'm certain do not belong to anyone who lives here sitting in a corner of the dining room under an orphaned jacket.  The high chair trays need to be put back on the chairs which are already buried in the hopelessly jumbled Harry Potter cupboard in the living room behind the tree.  The dishwasher is on its third run and I'm afraid to check Mount Laundry.  The now-flat stockings hang a little forlorn from a mantle where the Baby Jesus is surrounded by cans, loose ornaments, and all and sundry objects that needed rapid rescue from the hands of toddlers.  Citygirl and her love are loading their car to head off to visit his family a few states away and I won't see them until June.  My Mom is a bit winded due to six pounds of extra fluid from all of the salty holiday overindulgence, and if there's a spot on my glass coffee table without a smear or a tiny handprint on it I can't see it.

But joy to the world!  If I were Bob Cratchit I'd be late for work too, for we made rather merry yesterday!  From the time Citygirl and Babygirl finally put on an appearance at 9:30 until the final board game ended near midnight craziness reigned.  Running children, roasting beef, a race to finish a game before the roast was done (under the influence of some excellent bourbon), the usual miscount of plates and chairs:  An awesome celebration.

Today's mess highlights the blessings of my life:  Two highchairs aren't enough.  Expanding my six-foot-long table to twelve feet doesn't give me enough room to seat everyone I love.  Despite having my seven-year-old grandson jump up and down to compact the recycling bin, we have too many gift boxes and wrappers to fit.  Our Christmas tree stand is tough enough to withstand three toddlers; and our elderly dog is, too (although he did growl once, out of desperation I think).  I found at least one gift for everyone on my list that touched their hearts, and was similarly touched. 

Every holiday has its own life and spirit. Looking at the blog posts from the past three Christmases I have to say that this one seems to have gentler, less crazed, less stressed wind-up and execution than the those, and certainly better than the one before that (when my migraine medications led to a cardiac admission two days before Christmas and cardiac catheterization two days afterward!).  If I've learned nothing else, I've learned that there is no stress in the aftermath of a good time.  The honest work of housekeeping is comforting.  And the memory of love and happiness is truly the most priceless of gifts.

Merry Christmas from Mayhem Manor!

Wednesday, December 24, 2014

The Holy Hush....

Christmas Eve morning, here already.  Sitting with my coffee, fighting the dog for space on the loveseat, typing by the light of the Christmas tree in a quiet, peaceful world.

Take a deep breath and enjoy it!  The joyous race begins in a few minutes:  Work, cooking, baking, feeding family, worship, HoHoHo until the wee hours and pray for  a few hours of sleep before Grandma decides it's time to wake everybody up!

Merry Christmas, friends.  May you have a share of peace on earth and goodwill toward all, remembering that in a holiday involving excited children 'peace' and 'quiet' are not at all the same thing.


Sunday, December 21, 2014


I am one of those people who is sensitive to the lengthening and shortening of days.  From the end of September on, the decrease in light works on my heart and soul, dampening my spirits and hibernating my hope. People say that the holidays make them sad.  I think this is inherently untrue:  The sadness comes from the darkness. 

Darkness comes in many forms, of course.  The loss of natural light just allow the shadows that live within us to become more obvious, to take on the appearance of weight and form and substance that would be made ridiculous in the brighter light of spring.  The internal quiet that falls with the migration of the birds and the whisper of the snow shrouds and ensnares heavy thoughts that would dissipate like mist in a warmer sun. 

The tradition of burning a Yule log for twenty-four hours on this day makes perfect sense to me.  If we can keep the darkness at bay on the longest, darkest night of the year we will triumph over the cold and darkness of the coming winter, right?  Celebrating with light to fight the darkness is symbolic of everything that Christmas is. 

Starting today, the light is growing.  Hope is coming.  Emmanuel.


Thursday, December 18, 2014

Crazy Cat Lady.....

"You two need to stop making out in the kitchen."

Hubby and I frequently smootch in the kitchen.  It's one of the places we see each other the most: Prepping meals, unloading groceries, doing dishes, making tea.  Snagging a kiss is just a perk of a tiny prep space. 

Babygirl mused on.  "It's weird to think of two total strangers kissing each other." 

I pointed out that after more than thirteen years of marriage her dad and I can hardly be considered strangers, but she pointed out that we WERE total strangers once, and that at THAT point we must have thought about kissing each other and wasn't THAT weird?  My mom then observed that Babygirl herself would be doing something similar someday, and got this horrified reaction:

"Oh, NO I'm not!  I'm just going to be a crazy cat lady!"

Oh. My. Goodness.

My sides may still be aching tomorrow.


Wednesday, December 17, 2014

Social Issues.....

Last night I attended a meeting between our hospital administration, our local department of Social Services and several of the doctors like myself who serve the poor in our community.  The topic was medical exemption from work for people who appear to be able, perhaps, to, well, actually work.

It's a difficult topic.  We want people to work.  ALL of us want everybody who is capable of working to pull their own weight and get a job - not one sensible soul will argue with this.  So Social Services  gave us a general outline of how many people fall into the "We think they could work but they aren't" category. 

It was a surprisingly small number.

Social Services in this county has 900 people in and out of their doors DAILY.  The majority are pick up/drop off of papers and cards.  Up to four a day are homeless and seeking assistance.   The largest percentage of assistance is medical insurance, Medicaid, and SNAP (food stamps).  They assist in tapping into relief for heating bills (HEAP).  They help a small minority of mothers and children with cash assistance ('welfare'). They help newly disabled people until they can get hooked up to Social Security Disability.  And the smallest number are single adults who are out of work for whatever reason.  They require that these folks actually work in programs that serve the community and/or train them for work - unless a doctor says they can't.

Patients bring me papers all the time asking for work restrictions for Social Services.

So here's the thing:  How often do we, as doctors, simply give up/give in and just sign the paper to get the damned thing off the desk?  And some of the discussion last night centered around how qualified we are to determine, really, whether or not some can or cannot work, especially when their limitations fall outside of our 'scope of practice'?  Family practitioners are not psychiatrists, after all.


It was certainly food for thought.

I admit that I am less mindful than I should be about these forms, and I will be more vigilant, especially with people I don't know well or have some mental reservations about.  But...after nearly twenty-six years in this neighborhood if I can't spot someone who cannot work due to mental illness (the most recent one I signed off had been hospitalized with active suicide attempts three times in the past six months, typical of her last 5 years of life), then I need to retire.  Having an independent medical examiner tell me my patient needs counseling is a no-brainer.  Finding a place for a poor person to get that counseling is a bigger challenge. Getting a truly mentally ill patient to manage to keep those appointments - wow. 

Some of what I learned was good information, though.  If I suspect mild mental retardation, Social Services can have a patient tested for me if I request it, and although they can't arrange mental health services they can arrange comprehensive mental health evaluations, acquiring useful information for us to help us make better choices for the people and the communities we serve.


Tuesday, December 16, 2014

The Spirit of Christmas....

The Spirit of Christmas is often an elusive thing for us adults.  We get busy, and because WE don't have ten-day-long Christmas holidays we have to fit the extra cooking and shopping a decorating and wrapping and planning and partying into the already tight cracks and crevasses of our day-to-day business.  Fatigue and anxiety begin to chew at the edges of our cheer and strip us of our awareness of the greater purpose of Advent:  To prepare the way of the Lord.

But some people seem to embody the Spirit. 

There is a nurse in my office, one of my best friends; whose son, while physically healthy, has the type of academic challenges that have turned her into the kind of Mama bear that the middle school principal warns the high school principal is coming.  And while he will likely never be college material, he never fails to rise to the occasion when generosity is required.  When hubby and I inherited three kids at once, including our first little boy, Dom said to his mom, "They're gonna need boy toys, mom.  A boy needs Guys to play with!"  He sorted through his things and sent us a box of Spidermans, and Supermans, and other mysterious muscular be-weaponed creatures that I, as a mom of six girls, had no idea that boys "needed"  that made LittleMan feel more at home.

Each year, in our office, we keep our eyes open for a family who has fallen through the cracks at Christmastime.  A family with a recent job loss, or breakup, or some other unexpected problem that makes a hardship beyond what the usual Toys-For-Tots type charities can handle alone.  This year an offhand comment from a single mom about how charities give gifts to older teen boys and how her son only wanted one thing for Christmas and she just wouldn't be able to do it because dad was so far behind on child support was the trigger for me.  They are going to have a merry Christmas.

But the 'one thing' is a PSP, a $140 gadget by itself needing games to make it a useful present - a bit higher than what we usually look at.  But Dom?  His view was, "He only wants ONE THING, mom? Then we should get it for him!"  He's about Babygirl's age, so he went online to help her look for a deal and scored one for a hundred that had games included, and my friend (no slouch in the Christmas Spirit department) bought it.  Everybody else got the other things on the family list: The Easy Bake Oven (and the mixes to go with it) and clothes and pillows for mom.  And we have a carload of stocking stuffers, wrapping paper and tape, food and treats with some gift cards to a grocery store within walking distance of their house for anything we may have missed. 

Each day, as I look at that growing stack of generosity and kindness my heart is warmed and cheered by the love and caring spirits of my co-workers.  As individuals we complain and whine and crack wise and make mistakes, but as a group we ARE the Spirit of Christmas.  Thanks, Dom, for a little push from the outside (and thanks to his Mom, who clearly taught him well).


Thursday, December 11, 2014


People ask me all the time how I handle what I handle.  Generally speaking, I have to say that I handle it well on the outside and badly on the inside.  This past few weeks have been pretty dark in my heart, and it's been hard to pull myself together to get anything done. I've been feeling disconnected, and I'm not caring for my home, my mom, my work, or my church in the way that I should. 

Recent readings have been helping me to reconnect.  Weavings magazine had an article recently on the topic of 'acedia' (yeah, me neither) which technically means 'laziness' but which implies something deeper, a sort of deliberate apathy.  The article explored our 'addiction to nothing' - our tendency to literally run away from work, family, and God into a desperate "parody of leisure":  Pointless web surfing, pleasure reading that brings no pleasure,  mindless video gaming, or as the author of the article admitted, "my new best friend, Sudoku" - whatever activity it is that keeps you from doing what you are meant to do and being who you are meant to be for 'just another couple of minutes'.   Ouch.  It kinda hurts when somebody nails a diagnosis to your soul, doesn't it?

I ran across a link to  blog post:  Here is the post in its entirety:


"But as a mountain erodes and crumbles and as a rock is moved from its place, as water wears away stones and torrents wash away the soil, so you destroy a person’s hope." — Job 1

This Advent I am grateful for the gift of hopelessness. Yes, you read that correctly. This past year has been full of heartbreak, suffering, and lament. It follows on the heels of nearly two years of unemployment, financial insecurity, and stress-related health issues. Any hope to which I once clung — any hope outside of God, that is — has been destroyed.
And for that I give thanks.
Anyone who has experienced any kind of suffering knows that it’s a rude awakening. Something breaks in, shattering to pieces every illusion that this life is somehow fair and leaves you feeling heartsick, like the proverb describes. The tree that you thought would give life and shade and fruit and beauty turned out to be a useless stump.
And it’s only a matter of time before something else falls apart. It would seem that it would be better to never hope, rather than to be disappointed again and again.
This summer, as I waited anxiously to hear what was strangely afflicting my father (who had already had several health scares and a heart attack), as I nursed a broken heart and came to grips with personal disappointment, as I watched how a once rosy-outlook turned to a heavy-grey, I learned the true meaning of hope. Everything in this world will break or decay or simply fade away. Nothing here is permanent and even the most seemingly perfect and ideal situation has at least a hairline crack.
Yet the One who Paul refers to as “the God of hope” met me in that hopelessness. Seeing God, who is perfect in holiness, perfect in faithfulness, and perfect in love, juxtaposed with all my other hopes — even the good ones, like having healthy parents — made them look flimsy and dull. As Isaiah wrote thousands of years ago, all of creation withers and fades, yet God’s word endures forever. God’s plans and purposes are not subject to decay. God’s love never fails.
It’s that God of hope that we must long for — and who alone can satisfy our longings. It’s that One who can fill us with “all joy and peace,” as we trust in God. It’s that God who can cause us to “overflow with hope by the power of the Holy Spirit.”
Each year at Advent we sing about the “thrill of hope” that comes with Christ’s birth. My weary world rejoices as I consider that God has not abandoned me to the hopelessness that comes with this fallen creation, but came down to live in the midst of the fragility and flimsiness of my hopes, to be with me as they shattered or simply faded away. This hope anchors me even when life falls apart. This Advent, may you know this God of hope.
Juliet Vedral is Press Secretary for Sojourners."


And there it is, said so much better than I could ever say it.  Sometimes it is the stripping away of all we knew and held dear that finally opens our eyes to The Reality underpinning it all.  "The grass withers, the flower fades, but the word of the Lord endures forever."  Eternity lives in each and every human soul, but our human bodies will suffer and die.  Accepting the discord between those realities is challenging, especially when the suffering belongs to a beloved child.  Finding reasons to stay connected and not run away into empty 'acedia' is my challenge. 

Challenge accepted.


Sunday, December 7, 2014

Wrapping It Up....

I spent all of yesterday afternoon wrapping packages.  It is, admittedly, my least favorite holiday task.  This year was no different:  Wrapping paper - check.   Tags - check. Gifts - check. Tape - um, not so much, which is frustrating considering I can clearly remember buying a three-pack as I shopped, but there are about two dozen bags of unwrapped loot upstairs in my mom's apartment all conspiring to participate in assisting the tape in a winning round of hide-and-seek.  But hey, Mom has tape (not that SHE can recall where she keeps it but I unpacked it and put it away when she moved here so I know where it is) and that roll keeps me going until I finally get to bag number twenty-two and find MY tape.

Two hospitalizations in November with three unexpected trips to Philadelphia put a bit of dent in the Christmas budget, along with factoring in the cost of the Cephaly (the anti-migraine nerve stimulator, not covered by insurance), which will be over $300 and will come out of next weeks' paycheck. I've been shopping very carefully, but it's a long list of people. 

Every year since Babygirl became ill I've run up against that same basic issues - giving and loving are not the same.  Dollar amounts and love amounts do not have anything to do with one another.  Creativity matters to an exceptional degree.  Kindness matters.  Thoughtfulness matters.  Love matters.

And when I consider finances I have to consider how blessed we truly are.  Throughout all of this we have never been late on a mortgage payment (don't ask our electric and cable people what they think of us).  We have not had to tap into our retirement funds (although we had to drop our contributions substantially for a time).  We have not been hungry.  We've been able to care for my mom.  We've been able to rebuild a (small) emergency cushion and I've kept my hands out of that, although I might mentally be able to justify treating the cost of the Cephaly as an emergency expense. 

It comes down to remembering why we are here, and why we do what we do.  Every year I have to  smack myself and remind myself that we give gifts to remind ourselves of the wise men who traveled for months searching for the new and living King.  Through the beauty and blessing of this season it is all too easy to forget the purpose behind what we do.

So today we are going to get our Christmas tree.  The usual arguments will reign about fat versus skinny, tall versus short, and we will come home with an obese tree that scrapes the ceiling and spend the day making beauty in honor of the coming of the Baby. 

It's not the number of gifts, or their price tags.  We can't rival the value of the Original Gift:  We can only honor it.


Wednesday, December 3, 2014

Lessons in Learning.....

One of the many, many challenges of raising a chronically ill child is the colossal task of getting that child educated.  There are several phases to this challenge.

First, your child must be ill enough to actually qualify for assistance.  On the face of it, this seems just silly, but there has to be a standard of some sort, right?  And how hard can it be?  In some cases it's perfectly simple.  Your kid has a medical catastrophe like cancer, has surgery, chemo and all of that.  There's a defined 'start' and certain (no doubt completely irrelevant) societal expectations about timelines and so on.  OBVIOUSLY he needs home teaching.  In other cases, your kid gets a belly ache.  It gets better, it comes back, you see a specialist and then another and finally two years later you find out it's Crohn's disease and your kid has missed two days out of every five and is flunking everything and NOW what? 

The next phase is making sure your kid is well enough to handle being taught.  With an intermittent illness this is a horrible, horrible daily challenge.

Once you've identified that your kid needs and qualifies for help, you have to figure out how to make this happen.  You'd think there would be someone at the school who would be in charge of this.  So far as I can tell, waiting for help to come from the school district is about as fruitful as waiting for your letter to arrive from Hogwarts.  It's not coming.  Get over it and move on.

So, in the midst of holding down your job, caring for your family and managing your chronically ill child's medical needs, you need to be on the phone to the school to get the home teaching set up.  Oh, and by the way, those teachers seem to be disappointed if you don't know where the textbooks are, what the current homework is, and how to log onto the teacher's website.  In other words, you are supposed to prepare everything they need to do THEIR job, while you are doing YOUR job. 

Babygirl was approved for full-time home teaching a week before the Thanksgiving holidays.  We will be starting tomorrow.  She is supposed to get two hours of daily tutoring, but is scheduled for only four days.  And why, I say WHY, are they tutoring gym class?  Since they aren't tutoring her non-core classes and she needs the credit from her electives, what happens with those?  Ugh.  Back on the phone I go.

As far as the headaches go?  Babygirl did very well for a week after she came home from the hospital.  She had her first headache on Sunday, took her new rescue medications and did fairly well with them.  She went to school on Monday (which of course surprised everyone since she's supposed to be at home), came home to home teaching for two hours (her teacher had never seen her headache-free and was astonished at the difference), did two more hours of homework and went to bed.  Yesterday she was laid out with a headache but could have managed home teaching if they had TOLD us even on Monday that they had a schedule set up. 

So. Hopefully going forward we are set.  Unless she is well enough to start going back to school.  Then we are screwed because she's miles behind and they likely won't maintain the extra teaching if she's attending regularly.  Yeah, phase four - recovery.


Sunday, November 30, 2014

To Thee We Raise....

Practicing gratitude for an entire month has been a difficult discipline.  The beginning of the month found us exhausted but hopeful, recovering from Babygirl's first hospital stay in nearly two years.  The horrible headaches that lead up to that stay were finally gone, so it was fairly easy to start, but as the days went on and the headaches returned and worsened, being grateful became one of the most difficult tasks out there.

Writing a 'gratitude' post on mornings when I woke up already crying was actually quite stressful.  Remembering that there were still things to be thankful for despite Babygirl's suffering and the apparent indifference of her doctors created an interesting type of mental tension, one which I believe was good for me in the long run. 

It is all too easy to look down.  The burdens that rest on our shoulders are often heavy ones.  Disciplining our hearts to focus outside of our own struggles and pain is good for us.  A friend of mine has said that she plans, as a Thanksgiving Resolution, to find three things that she is thankful for each morning before she puts her car in gear.  It is a worthy ambition, one that I am all too aware can be a tremendous challenge on some mornings!

My sister-in-law, on one of our last runs to the hospital, gave me a gift.  It's a little plaque that reads, "Life is all about how you handle Plan B." 

So Lord of all, to thee we raise Plan B. Or C. Or F.  Or whatevertheheck plan we are currently on, with gratitude for the strength to carry on.


Saturday, November 29, 2014

Peace on Earth and Joy in Heaven.....

Humans are, by nature, not peaceful.  We glorify struggle, and put those who can prove superiority in the limelight.  We spend millions fighting over who gets to host the Olympics and billions hosting them.  World Cup Soccer games are watched worldwide, and the outcome of the competition can generate rioting whether the home team wins OR loses.  And how much does a thirty second ad cost on Super Bowl Sunday?  Around four million dollars in 2013.  This is what we do in our free time, in times of peace.  We dedicate infinitely more time and money to actual war.  The US defense budget in 2011 was about $665 billion.

It has been said that if you want peace, work for justice.  If we were to tithe our military money, use 10 % of it for other causes, we would have enough money for every single thing we need here:  Enough for housing for the homeless, enough to give workers a living wage, enough to fund fully universal healthcare including care for the mentally ill, enough to give paid maternity leave. 

I'm not foolish enough to assume that this will alter human nature.  But imagine the joy in heaven if we all at least tried to treat each human being as if they have worth simply because each and every one of us is equally created in the image of our creator.

Wouldn't that be something to be grateful for?


Friday, November 28, 2014

For That Great, Great Love of Thine......

I woke this morning to the sound of my grandsons chatting over Hubby's extensive pin collection.  He has a corkboard, about three feet tall, nearly covered in commemorative pins of all kinds, going back to his days in the Boy Scouts.  Wherever we go, he looks for more of these little pins, and many of them are recognizably iconic, even to young children.   Squeaker and DoodleBug were especially excited to spot Mickey Mouse.

Thanksgiving is a great family holiday, and I've noted before that it is my favorite.  Hubby and I spent the morning yesterday working together to prepare the feast, and such was our level of organization that we had every single dish prepped and in progress for the 6 PM meal by noon.  Kids and grandkids began arriving at about three, and things stayed hectic until midnight, when I looked at the clock and realized...oh, it's only 7:30.  Lordy, I don't quite have as much stamina as I used to!

Due to a recent job loss, Curlygirl and SqueakersDaddy are on a very tight budget this year, and although I have a theoretical objection to shopping on Thanksgiving Day, I understood their need to make the most of a limited amount of cash (and their need for transport) so I agreed to let them hire Babygirl to watch the boys overnight at our house (she's still headache free, thanks be to God) and drove them out to wherever they needed to go.   (As a side note, I have worked both Thanksgiving and Christmas day in a retail shop back in the early 1980's. I needed the money.  Although shopping and spending time outside of the home on these days is more common now, it is by no means a NEW phenomenon. Of course as a physician working those days is hardly a rarity one way or another.)

There were a lot of people out there.  We missed the first wave of crazy, but there were a LOT of people for all of that.  I'm not a fan of WalMart, but the store was fairly full of people, about like it is on the first Saturday after the local University opens in the fall and all of the students are looking for microwaves and mini-fridges.  But I'd say about one in three of the people there were employees, most with carts full of merchandise needing reshelving.  I ran into one that I knew, and she said that there had hardly been room to move about three hours earlier.  Overhead announcements were instructing employees to go to the produce aisle to pick up toys.  It must have been complete chaos.

We checked out a couple other stores and came home at about 1:30 AM, officially into Black Friday.  So the sound of little voices and the pitter patter of little feet (seriously?  Squeaker sounds like a baby T-rex when he runs)  was perhaps not the joyous wake-up call it might otherwise have been. 

But hearing DoodleBug's excited chatter, and Squeaker's I-worship-my-big-brother echo of everything he had to say was a sweet blessing as Hubby pushed a cup of coffee into my hands with a kiss.  Our Leftover Night Dinner tonight will continue to echo our gratitude for the love that surrounds us here.


Thursday, November 27, 2014

To the World So Freely Given....

The things we get for free are the things we most take as granted, don't you think? Until the air around us becomes too dirty to breathe, we accept clean air as a given.  We might pay a small fee for our water but we rarely worry about whether or not we are going to catch something deadly if we drink it.  Sunshine, rain, shady trees - all a part of my normal day-to-day (well, maybe not the sunshine.  I live in one of the least sunny cities in the entire US - Seattle gets more sunshine than we do). 

For most of us growing up, we took our next meal as granted.  Our parents might have known that things were a little dicey but they never let on to US that we were a couple of dollars away from hungry.  We took our safety as given - no helmets, car seats or seatbelts for us!  We never doubted that there'd be a roof over our heads, streetlights on the corner, or a school to attend.  I'm not entirely sure how far I was into adulthood before I made the ultimate connections between wages, property, taxes, firemen and schools, but I think it might have been about the time I first owned a home at age 30. 

We take grace as granted as well. We know those who love us will tolerate us, support us and forgive us.  We know that love is a bond that can't be severed - until it is.  Those of us who have been through divorce or the demise of a deep friendship or the fracture of a family relationship understand that tolerance has boundaries, support can become unsupportable, and love can be shattered beyond repair.  Drugs, alcohol, gambling, domestic violence, infidelity, apathy - these are a few of the things that can take a relationship beyond the point of no return, be it spouse, parent, child, or friend. 

Wait, what?  Child?  Of all of the relationships listed, giving up on a child is the hardest.  What could a kid possible do for you to finally stop loving them?  Certainly I can think of things that might make me choose to keep some distance ("Your cocaine habit means that you steal my computer every time you come to the house, so you can't come there anymore.  Where can I meet you?"), and even some things that might mean separation (violence) but not much, if anything, that would stop me from feeling love for my child.  And separation would be anguish.

For a child, the death of a parent means the loss of that safety net of unconditional love.  It's why, whether seventeen or seventy-five, we take it very badly when a parent dies.
For me, the love of God feels like this.  Like a Mother, anguished when I choose to separate myself, and like a Mother rejoicing when I'm home - it's the underlying safety net of my life, for which I am grateful.


Wednesday, November 26, 2014

For Thyself Best Gift Divine....

Faith is a mystery.  Why some of us have faith and others don't I have no idea. My parents took me to church when I was very small, but stopped going before I started school.  But somehow, my heart felt at home there, and when I was big enough to walk there on my own, I did.  Despite my many, many flaws I became a doctor to work toward my goal to live the ideals taught by Christ:  Heal the sick, feed the poor, work for justice. 

One of my favorite patients is an atheist.  She firmly believes that since there is no afterlife, one must achieve everything possible in THIS lifetime.  She became a legal aide lawyer to achieve her ideals:  Lift up the downtrodden, work for justice, proclaim liberty to the captives - in other words, to live the ideals taught by Christ. 

Of course, she doesn't see it that way, and might even be offended by the comparison, not that it makes it any less true for all of that. 

If she doesn't believe in any afterlife or higher power, why is she so passionate about the need to serve?  Why do I feel so passionate about what I do when I know 'doing' isn't truly necessary to arrive in the afterlife, given my faith? 

Jesus' life was THE roadmap of what we could become.  He gave, and gave and gave over and over.  He healed.  He reconciled.  He fed.  He taught. He freed.  He set a phenomenal, unforgettable example of what God intended us to be, and sent His Spirit to help us become His hands in this world. 

I was raised in a pretty fundamental environment.  By all I was taught, my patient, despite her life choices, will arrive in hell at the moment of her death.  And those who profess faith in Christ but vote to take food away from hungry children will go straight to heaven. 

But there are those verses regarding separating the sheep from the goats on the basis of "When I was hungry you fed me, and when I was thirsty you gave me drink, and when I was in prison you visited me...."  These things happen at the final judgment, after, I assume, we're dead.  Jesus clearly told his disciples that he had sheep in 'other folds.' 

My faith is pretty broad.  I serve the Lord, not (only) because I hope to go to heaven but because it is the right, just, fair thing.  I have long suspected that on the last day we will be surprised, deeply surprised, by which of us get Sheep awards, and which get Goats.  The Bible says that God did not send his Son into the world to condemn it, but to save it.  In that eye-opening moment when we see what God has seen - "I was sick, and in prison, and you visited me" - we will see what the Gift Divine has accomplished. 

I am grateful for the opportunities my life has given me to serve.


Tuesday, November 25, 2014

And Buds of Heaven....

We are surrounded, although we are rarely aware of it, by people who hold in their hearts the "buds of heaven."  October is National Pregnancy and Infant Loss Awareness Month.  I know, I know, everybody seems to have their 'day' or their 'month' these days.  But October represents a staggering number of people.

If you go to, you'll see the statistics:  About one in six pregnancies end in miscarriage or stillbirth.  According to the CDC, the US infant mortality rate is 6.1/1000 live births (it drops to 4.2/1000 if you exclude babies born before 24 weeks gestation).  In either case, think about it:  If your high school had only 100 kids in it, 16 kids were missing long before you started kindergarten.  You didn't notice them.  But their parents did.

I've never experienced a miscarriage or the loss of a child, but I've had good friends who have.  I remember the names of the missing children and pray for their parents.  I feel, like many of us feel, helpless in the face of such tremendous loss. 

"I can't pretend to know what you are feeling.  But I'm here if you need me." 

If you know anyone (and I know you must) who has such a loss on their heart, pray for them.  If you have lost a child, I pray for you. 

My gratitude for this day is, that for all we've lost, we've not lost a child. 


Monday, November 24, 2014

Flowers of Earth...

We are halfway through our visits of the morning.  Babygirl awoke with a slight headache, which has resolved.  She is tired, and very cranky, which I am sincerely hoping is NOT a side effect of the Depakote.  The neurology nurse agrees that generating a flow sheet of all medications that could conceivably ever be used for migraine under any circumstances either for maintenance or rescue, traditional, herbal, supplemental or otherwise.  This would be useful for all patients, and also for teaching purposes.  But in our case it would be useful because we would be able to give the entire list to nephrology for clearance in advance of need.

We discussed Botox again.  Babygirl is a bit reluctant to try it, so it was back-burnered for now.  I asked about the Cephaly device ( and got permission to try it ($300, not covered by insurance, but well worth the investment if it works at all for either one of us).  The doctor said, "I have patients who swear BY it, and some who swear AT it."  Good to know, Doc, good to know.  He wants to continue the Depakote at a lower dose than the inpatient neurologist recommended. 

All of these things are preventatives.  We still don't have the best plan available to TREAT the headaches as they occur.  Tylenol and tramadol have been ineffective. Migranol was effective briefly.  Imitrex caused chest pain.  So now we've added Reglan and Maxalt (or restart the Migranol with the Reglan) to try, and we are to see if nephrology will clear us for aspirin use (to be avoided at all costs if she is actually ill). 

Flowers of earth.  Botox, Migranol and the aspirin are ancient, plant-based medications.  There is evidence that they have been being used since the Neanderthals roamed the earth, along with foxglove, belladonna, purple coneflower and many other plants that we still use widely in our pharmacopeia today (although it is only recently that Botox has been used for anything other than poison).   More recent development of drugs like Taxol from the Pacific yew for ovarian cancer make scientists keep looking at plants for more potential treatments for diseases.

Our overall disrespect for our planet is costing us medical treatments.  Every time a plant species goes extinct due to habitat loss before we can study it we lose, potentially, the cure for a disease.  Even (and perhaps especially) those plants that we have previously deemed toxic may prove useful if we look at them from a different perspective.  We have take our directive to 'subdue' the earth a bit too literally.

We need to back up, let the planet recover, and be thankful that God put here what we need for our health and well-being.


Sunday, November 23, 2014

Graces Human and Divine.....

 Divine Graces. Forgiveness, love, faith, compassion among them. 

Human graces, the same.  The gentle kindness of our human co-travelers in this life are what point us toward the Divine. 

Babygirl was discharged from the hospital last night, just before nine PM.  They didn't exactly hustle us out - we were offered the option of sleeping over - but Babygirl's headache had drifted down to a 1/10 and she had a suspicion that her second IV site might not hold up for another round of medications, so despite the fact that we both had reservations, we decided to leave.  Unlike our last discharge (which for reasons unknown took over four hours), we were out the door in twenty minutes.  We hiked to the parking garage, and.... the car was dead. 

I checked immediately - the headlights were not on.  But one of the interior lights was - I must have switched it on to look for something when we arrived and forgotten about it. 

We don't have AAA (we keep talking about it and then forgetting to do it).  So I Babygirl and I dropped our stuff in the trunk and hiked back into the nearest building to ask security for help.  "We're dealing with a  bit of a situation, ma'am, but we'll get to you as soon as we can."  It wasn't long of a wait, and a kind guard came and drove us to our car. 

I'm notoriously nosy.  "So...what was the 'situation'?"  "Oh, a chopper came in with a trauma case and a cop.  Emotions run high, you know?"  I mentally translate.  If there's a cop, a parent is likely responsible for the trauma, and the other parent (and/or the grandparents) aren't handling this well.  "You see a lot, I imagine."  "I love my job, but I just made my 90 days yesterday and I've cried twice already." 

He doesn't look like the crying kind. 

The security car has a cool jumper cable hook-up that allows him to wire up to our battery and then just plug the other end into the front of his vehicle without even lifting the hood.  It set off my car alarms when it plugged it in, which made him jump a mile and unplug the cable.  "Was that you?!?"  "It's an automatic anti-theft alarm.  I'll switch if off when it comes on."  It took two more tries (with him jumping like he was being electrocuted each time) before he understood that he had to let it honk for a minute to give me time to turn it OFF.

Maybe he is the crying kind.

The car started without incident (except now I need to find the radio code to convince the radio that no one stole it).  He stayed for bit to make sure we were okay, and left us with a "Have a blessed night!"

Halfway home, Babygirl suddenly said, "My head doesn't hurt AT ALL." 

The fact that we had just made it calmly through what could have been a stressful car breakdown was undoubtedly helpful.  Ask anyone who knows me:  I'm not always good with the unexpected crisis.  The fact that security at the desk didn't do an eyeroll and was nothing but compassionate about it was amazing.  The gentle soul of the man who restarted our car calmed my heart. 

I will say it again:  God has no hands but ours.  I do not always handle the hearts of my fellow-travelers as gently and with as much grace as I might.  I am grateful for gentle reminders that I should.


PS She is still headache-free this morning, and morning is usually the worst.  We have recheck appointments with neurology and nephrology tomorrow morning.

Saturday, November 22, 2014

To Our Race So Freely Given....

Today's been a long day.  Six IV treatments with the DHE and the headache is hanging tough, so they are starting a new medication now. Even as I see the setting sun reflected ever earlier off of the newest of the Children's Hospital buildings across the street, it seems a long, draggy day.

But I have a long list of things I am grateful for today.  I am not these parents:

Overheard in the elevator:  "....and then he coughed, which increases the pressure in your chest, you know?  And a stitch in his heart tore loose and he started bleeding out through his chest tube, and I asked the therapist 'should his nose be bleeding like that?' and she said..."

Or this:  "He's eighteen, just turned this week.  He was born here.  Yeah, we're 'Frequent Flyers'.  I don't know what we're going to do now that he's too old to come here...."

Or:  "We're on day sixteen since they took his appendix out.  The abscesses are still draining...."

Yeah.  We aren't those people, and we aren't any of the many people who arrived by helicopter in the last 24 hours either. 

Sometimes I need to be reminded that my kid is not the only one laboring under the inheritance of Adam. I see the number of moms and dads with the blue 'I-have-a-kid-inpatient' wristbands sucking down coffee like it's a lifeline in the cafeteria at 5:30 AM.  I see sibling groups with matching shirts that say "Team Gabby" filing into the elevator to go visit Gabby with a very tired Grandma in tow.  I can look down into the ER waiting room, never, ever empty. 

Our race was given Paradise.  We traded it for the knowledge of good and evil and gained sickness and death.

And despite that...despite ALL of that, what I see here all around me are people who manage to put off their fatigue and put on a smile and keep walking.  I see moms who stagger out of  kid's room looking like a puff of wind would knock them down forever turn around ten minutes later and go back in singing.  I see peace in the face of struggle.  I see hope.  And I see gratitude.


Friday, November 21, 2014

For Each Perfect Gift of Thine.....


The discipline of using this hymn to outline my gratitude for the month of November has reached challenging heights.  Sitting up in the night with a child in a children's hospital 200 miles from home is always an exercise in maintaining a stiff upper lip.  One of the nurses just asked me if I'm okay - what am I supposed to say to that?

The truth of the matter is, though, that I am better here that at home.  Here, at least, the responsibility of dealing with Babygirl's pain is no longer mine.  Despite the fact that she had pretty bad chest pain from her medications during the night necessitating repetitive cardiac evaluations; despite a one AM I-wanna-go-home crying jag that left us both exhausted, we BOTH slept better last night than we did the night before. 

So where do the perfect gifts lie?

Well.  There is Babygirl herself, who despite her exhaustion and pain remains polite and focused with the staff, which is more than I can sometimes say for myself.  There are family and friends who step up and offer whatever help they can, surrounding us with prayer and love.  There is my job, where people step up without complaint and pick up the slack yet again, dealing with disgruntled folks who are tired of being shuffled around like a deck of cards to accommodate the weirdness that is my life. 

Just because I am weary and sad doesn't mean I'm not grateful.  Making gratitude a discipline helps pull me out of myself and back into the larger world.


Thursday, November 20, 2014

For All Gentle Thoughts and Mild....

I've been short on gentle, mild thoughts lately.  Work has been crazy with the retirement of a colleague. Mom's decline is never pleasant to watch.  Hubby's back pain is no picnic.  But it is Babygirl's headaches that really take it out of us.

Her recent hospital stay resulted in a 100% resolution of her headaches for about five days.  Then a day on, a day off, a day on, a day off.  New medicine working well, then working slowly, then working not at all, until finally she settled back into the chronic daily headache, awakening with a 7/10 pain that would gradually decline to a 3 - 5/10 by the end of the day, but never completely go away, except for one lovely evening for a couple of hours. 

I started calling neurology on the morning of day three of this headache, last Friday.  The nurse called back at lunchtime, said she'd talk to the doc and call back by the end of the day.

Monday morning I called again, and requested again that they please return a call, because day three was now day six.  A coordinator of some sort returned the call and was miffed that I was angry (really? Well, I did say, "I feel like no one gives a rat's ass about my kid."  Cussing at the person who is not at fault is bad form, and I apologized immediately and had to listen to the "you aren't the only one with a kid with headaches" lecture, the immediate Karmic payback for my rudeness), but she promised that she would immediately go to the nurse and that someone would call me by the end of the day.

Tuesday evening I came home from work and sobbed like a child all over Hubby.  He's gotten quite good at just hanging on and making comforting noises.

Wednesday morning I called again (I have an alarm set for 8:30 AM on my phone so I remember to call early in the day.  It is pathetic but that way no one on the other end can say I called too late in the day for them to get back to me.  Not that the time of the call apparently matters in any way). We are now on day eight of a nearly continuous headache and I've waited over 5 days for a call back from a doctor.  Keeping in mind that the poor soul on the other end of the line is not responsible for this, I outline the problem AGAIN.  And I know she can hear that I am crying.  I'm not going to pretend that I'm not.  At 4:40 PM I am with one of my nurses, notice the time, and start crying again because I know neurology goes home at 4:30, so there is no hope of a call,  but I still have paperwork and patients of my own who need to hear from me, so I pull myself together and keep working.

At 5:30, my phone rings. It's the doctor.  I was stunned, sincerely stunned.  I explained, AGAIN, where we are in the process.  It is truly a good thing that there is 200 miles and a phone between us, because his basic excuse is that he needs clearance from the kidney docs before he can try anything new.  I ask what he want to try and he rattles off a list that contains one medication that they have already okay'd, one that she already on, and one that they have already declined.  I point this out to him and he refuses to give her the one they say is okay because HE doesn't like the side effects. 

"Doc, let me tell you something important that you need to know:  My brother took one of those silly online how-long-am-I-going-to-live quizzes and it gave him 46 years.  He said, 'Why would I want 46 more years?  Give 'em to Babygirl!'  Babygirl said, 'Why would I want them? My life sucks!' "

There was a pause.  "Do you want me to readmit her to try to stop the headache again?"  "Yes.  Tell me when you want us there."

I skipped Bible study and choir rehearsal to finish every phone call and piece of paperwork that could be finished.  And this morning we are here at my sister-in-law's house, waiting for a call from Bed-and-Board to tell us when a room is available. 

Stopping the headache is only one step.  They HAVE to find something to keep it from coming back.  So I'd be very thankful if all of you would send your thoughts and prayers our way.


Wednesday, November 19, 2014

And Friends Above.....

I miss my Grandma.  On Wednesdays she would walk to our house, and in the summer I would watch for her to come down the hill about the time the noon whistle blew.  My mom would wash her hair and set it in pin curls and they'd drink tea and chat while it dried.  They'd make me my own pot of tea - probably 80% milk with half a cup of sugar but it kept me out of the way for a while. 

Grandma never spent her change, she just collected it in a little coin purse. When I got older  I had the job of counting it up an dividing it evenly between my brothers and I to use as pocket money for the week.  Since we didn't get an allowance like many of our friends did, this was a real treasure.

Every Valentine's Day Grandma gave us a little heart-shaped box of candy, and for Christmas one of the Lifesaver Books.  Each.  Our friends were envious. 

Grandma helped finance two cross-country family vacations, and camped from Buffalo to Yellowstone and back, and from Buffalo to Yosemite and back.  She survived being lost in the Mojave Desert, exploring the Badlands, being surrounded by bears, drinking campfire coffee, and landing flat on her back (along with my Mom and Dad) when I got up from the kids' side of the picnic table and their combined weight took it over.  Literally.

I asked her for a loan so I could do my first semester of college while I was still in high school.  Without without a second's hesitation, she pulled out her purse and handed me $250, the entire price.  She believed in me, always.  When I told her I was planning on get married at 19, she said, "But I thought you were going to DO something!"

She died a year later, when I was in my second year of college, technically my freshman year, at the end of The Blizzard of '77.  I came home for her funeral to snowbanks taller than the telephone poles, and we couldn't bury her until spring. Her death made me look hard at my traditional upbringing and my traditional life view.  Her belief in me pushed me the rest of the way through college (two undergraduate  degrees in three years) and ultimately medical school.

 I believe she still makes flowers bloom here and there for me when I need them.  We should all be thankful for our friends above.


Tuesday, November 18, 2014

Friends on Earth........

It is isolating to be the parents of a chronically ill child. You can't predict more than a day ahead, so rather than cancel at the last minute again, you don't accept invitations.  Invitations slowly stop.  People innocently ask how things are and you have such limited choices:  Flat-out lie, dodge the question, or let on that things aren't going well.

Each choice has its advantages.  Lying gets you off the hook, because if everything is going great, everybody smiles and moves on to the next topic of conversation, sparing you a blow-by-blow reliving of how much your life sucks.  Dodging isn't bad, a good choice with people who really don't care about the answer anyway, but sometimes painful to those who feel they deserve a more honest answer. Telling the truth gets you support.  But telling the truth is exhausting.  Exhausting.  When I was in Migraine Hell myself a few years ago I heard every "Have-you-tried-sacrificing-a-chicken-under-the-full-moon" suggestion from every corner of the universe.  I may have gone to medical school but I'm not so full of myself that I'm unaware that doctors can be ignorant prigs who ignore perfectly good natural remedies.  I tried a lot of them.  I checked known safety data on a lot more.  I've been down this road myself. 

Walking through an illness for yourself is not the same as watching your child suffer.  And she frankly has it a hundred times worse than I did.  Yes, we've thought about hormones. Of course we've examined diet:  Dairy, gluten, chocolate, caffeine, sulfites, cheeses, and every other imaginable food trigger has been investigated.  She has no allergies.  Yes, of COURSE we've had her eyes checked and no, she doesn't have TMJ.  The list of medications we've tried (herbals and supplements included) would astound you.  I will tell you that in the last eighteen months not once has any human outside of her neurologists' office opened their mouth to offer a single suggestion that we haven't already considered.  The only treatment I found on my own was an electronic trigeminal nerve stimulator recently approved for use in adults.  I asked her docs about it.  It hasn't been studied in kids.  I'm willing to sign her up.

All theses suggestions are kindly meant, as are the many stories about people (and it seems everyone knows at least one) whose headaches NEVER come under control (not sure how that's meant to be comforting except perhaps in the 'you aren't the only one' sense).  And I'm ashamed of myself for being so frustrated by the sincere kindness of people who care about me and Babygirl.  But her pain has me so exhausted and so discouraged that  I just don't have the courage to think about it any more.

But here is where I know the value of my friends:  Wednesday, when we get information from Babygirl's new tutor about what hours she wants to teach her, and we need an adult in the house to supervise, I won't have to make more than two phone calls to find someone who will either give Curlygirl a ride over so she can do it, or come over themselves.  I'm 100% certain that that is a gap people will stand in, just as they have stood in every other oddly shaped gap we've had in the past three and a half years.  I can't explain how huge the peace is that comes with that knowledge.


PS Funny story:  For a while the tutors were satisfied that my Mom was on the other side of the house.  Then one of them must have met her.  We got a request for an adult who "isn't so hard of hearing."  I said, "She isn't hard of hearing exactly, she's more.... hard of thinking."  The tutor responded, "Yes, well, I was trying to be polite..."

Monday, November 17, 2014

Parent, Child.....

When my parents were children, they were in sad circumstances. 

My dads father died when he was a toddler.  His stepdad was an abusive alcoholic.  My mom's childhood was split between happy times when her father was not at home, and horrifying nights of abuse when he was.  They married young, he at 19 and she at 16, and began a family a year later.  My mom told me once of a conversation that they had before my older brother was born.

"We sat down and decided what we were NEVER going to do as parents."

Teenagers.  Making plans for permanent change. 

They made promises to us kids before we born that they kept all of our lives.  We never once sat outside a bar waiting for a parent to have "just one more drink."  I was never left alone for even a minute with our grandfather, and I was given permission before I understood why I needed it to stand up to him if he made me at all uncomfortable. They didn't turn themselves into perfect parents - the gap was too wide - but they gave it their best shot.  They had no idea on earth what 'normal' families did on holidays, so they watched "It's a Wonderful Life" and copied the style as best they could.  For the most part, they pretended to be 'normal'.  For the most part, it worked.

The knowledge that that conversation had taken place has had a profound impact on my parenting.  The concept that one could decide to change things ahead of time - how amazing is THAT?  How amazing IS that? To have a love so profound that you plan for a better life for someone who doesn't even exist yet?  It goes from the foundation to the frosting of parental love.

Grateful?  Hell, yes.


Sunday, November 16, 2014

Brother, Sister....

I don't have sisters.  I feel the lack, at times; I think women more naturally tend to end up as caregivers to their elderly parents, and having a sister to share that load with would be nice.

I have, however, been blessed with brothers. 

People who grew up with you in your house understand certain things better than anybody ever will:  The code words for joy and sadness that are bound tightly in specific memories of childhood.  You can discuss such things as 'toon toenails, turkey-gobble sneezes and CaliPhoneYa and they immediately know the subject, the context, the subtext and how it relates to the point you are trying to make, all in less than three seconds.  It makes telling the funny story of my last trip for a pedicure take about five minutes less to tell. 

However often I might not see eye-to-eye with them, I know that there is over 50 years of history there.  I know that our time with out parents is winding down.  Knowing that there are other people out there who've known me has long as they have is comforting.

My younger brother recently visited one of those how-long-are-you-going-to-live websites, and it told him he has 46 more years.  His response?  "F*** that!  I don't need that kind of time! Give some of that to Babygirl!"

How can I not be grateful?


Saturday, November 15, 2014

For the Joy of Human Love.....

One of the best gifts of my life is my hubby.  We have had a rough walk this past few years.  But he's a good man to be walking with, and I'm grateful.


Thursday, November 13, 2014

For the Mystic Harmony......

Sue Fitzmaurice, Author's photo.

You were expecting something profound?  LOL.

Well, you got it.  Meditate on this thought today.


Wednesday, November 12, 2014

For the Heart's and Brain's Delight.....

Yesterday was a full-on all-day I-got-the-Scarecrow-beat Brain Day. 

WTH, you say?

It's difficult to explain the toll the migraines take.  People 'get' that when you have an actual headache, you aren't doing too well.  They kinda get that auras screw up blood flow to your brain and that can make you less functional.  They certainly understand that medications have side effects and can make you less focused. 

There's more to it, though, and it's more subtle and insidious.  Sometimes entire days go by when I feel like there is some kind of fine mesh curtain between me and what I know.  I can feel alert but unable to reach into certain parts of my brain for things I need by the usual routes.  It's a bit like having to drop the back seat of your car to get into the trunk - you know you can do it if you have to, but you try the trunk latch FIRST because that makes the most sense, and then when that doesn't work you have to go looking around for that latch release you never use and then grab a flashlight so you can see....and all of that is running in the background while you carry on the conversation as if a chunk of something isn't missing and waiting to be turned up.

I am at my best in the morning.  By one o'clock I can feel the fog roll in.  By four PM my brain is moving SO slowly that it puts all the big words away for another time.  By seven, hubby can beat me at nearly any game he chooses. 

But yesterday was an exceptional day.  Everything was clear, coherent, organized.  I managed to plough through a ton of paperwork, and what I didn't finish (there was plenty) I at least prioritized.  Despite an aura last night,  I feel about the same this morning.  I pray it lasts, but I'll enjoy what I have while I have it, and be grateful.


Tuesday, November 11, 2014

For the Joy of Ear and Eye....

Our new choir director will be absent this Sunday and I've been asked to cover for the week.  Since we are in the process of learning 872 new tunes for the Christmas Cantata I won't be able to steal much rehearsal time from him, so I need to keep it simple.

Prepping music for a choir is more labor-intensive than people realize.  First, at some point in your life you have to have put in a few years learning to read music.  Like reading text, there is an automaticity to it that non-readers do not fully appreciate.  Think about it:  When you read, you are not spelling out each word in your head any more - what you see is rapidly interpreted, skipping any number of the steps you needed to use while learning, and goes straight to understanding, almost as if you are 'hearing' someone speak it.  A really good musician can look at music and have the same process happen.  Our current choir director is one of those.  He wanted to add a little something to the accompaniment recently and said to the organist, "At measure 86 I want you to add a four octave unison Fa-Sol-Fa-Mi-Re-Do in sixteenth notes in the last two beats that returns us to the a tempo at measure 87."  I understood it immediately, and so did she.  But I would never have been able to say or imagine it that way.

Sadly, I am not a 'really good musician.'  I need to hear what I am seeing in order to really learn it.  Since I am not a piano player, this was a challenge in the days before CD's with split tracks, MP3 players and rapid access to music online.  And I need to practice that 'waving my arms in the air' bit to get it down before I drag the choir through it (something our choir director is still relatively new at - he's a better musician, but I'm a more experienced director). 

When I first began to direct our church choir I was afraid my lack of musicianship would hold them all back.  But I learned that my singers weren't 'musicians' - more than half of them couldn't read music at all.  They were just people who loved to sing, and  what I learned was that when people want to sing praise to God, they will make do with the director God gives them until the director learns the job better. 

I don't direct the choir full-time anymore because of the inherent unreliability that comes with having a chronically ill child.  But there is nothing that puts together the joy of ear and eye like directing a choir, and I'm grateful to be able to do it once in a while still.


Monday, November 10, 2014

And Stars of Light....

We who live in modern times don't think too highly of starlight.  We might teach our children nursery rhymes about wishing on stars, and might be kind enough not to point out to them that most of the wishes they make are on planets, actually, but don't really think of stars as being anything that sheds significant light on our path.  We all know about our sun-shadows, our streetlight-shadows, and sometimes, our moon-shadows.  But a star-shadow?  Certainly not.

If we were to go back a hundred years, before the majority of Americans were on the grid, we would have a different knowledge. 

Starlight is more subtle.  Hundreds, thousands, nay, millions of suns: Many of them unimaginably larger than our own sun and infinitely farther away, all working in concert to light the sky.  And we are so intent on lighting the ground at our feet that we have made their light nearly invisible.

When I first moved from my small country town to Long Island, the immense orange New York City glow on the western horizon blotted out the entire sky in that direction and diminished the visibility above dramatically.  "How do people here teach their children about the stars?" I remember wondering my first night there.  I adjusted to the lack of stars - it simply felt normal after a while.  And when I moved from there to this smaller city, the reappearance of even a limited number of stars seemed miraculous. 

But on the rare occasions when I am in a light-free zone, perhaps four times in my adult life:  Ah, what  miracle.  If you have never seen an unpolluted sky with every distant star visible, you must add this sight to your bucket list - you must. 

We all understand that we need the Light.  Metaphors for the Holy are all around us - Sun, Moon - it is easy to understand that God casts massive amounts of light on us.  But Babygirl and I are forced, at times, to live in a more subtle light.  Sunlight - even moonlight - is enough to cause us real pain.  But the gentleness of starlight, casting only the smallest round shadow at our feet - we can handle that. 

We wonder sometimes why the broken people we see don't seem to respond to the Love of God.  I think, maybe, it is just too much Light.  It hurts, all that brightness spotlighting our darkness all at once.  Maybe God is calling us to be Starlight for our neighbors:  The softest, gentlest light, adjusting the eyes of darkness for a brighter Light.  It makes sense: Many small lights working together.

Thank God for Starlight.


Sunday, November 9, 2014

Sun and Moon......

Yesterday was busy, and a planned soup-and-homemade bread dinner never quite got off the ground.  I did a lot of cleaning, ride sharing to grocery stores, and daydreaming to live Chinese music in a bookstore.  At the end of it all, Babygirl and I had to decide what to do about dinner.

Our church is a busy place.  We feed people.  A lot.  On election day we had a chicken and biscuit fundraiser.  On the first Friday of each month we host a free dinner for any college student who cares to show up.  Our town has three colleges, and our neighborhood has quite a bit of off-campus housing.  About 60 kids come and eat.  On the second and last Saturday of each month there is a free meal for anybody who wants to come, usually a hundred people or so (more at the end of the month when there is less money).  We have a food pantry, open two days a week.  My hubby and his best friend spend a lot of time shopping and cooking.  Babygirl and I don't often attend these meals, she because of her inability to eat food that has been standing out for any length of time (kidney transplant/germ rules) and I due to food allergies.  But we decided that it might be our best option for a hot meal and good company last night.

We drove Curlygirl and Squeaker home first, heading from bookstore to downtown, and from downtown to church.  Along the way we had to pull to the side of the road no less than FIVE times for emergency vehicles, each headed in distinctly different directions.  Fire, police, ambulances:  Everybody going every which way.  The final group was the largest, all apparently ending up in front of the slightly notorious Belmar Hotel, a smallish place where two ambulances, three police cars and one fire rescue truck seemed like they would have more personnel between them than would fit in the building. 

After this last fit of flashing lights, I speculated about the effect of the full moon on human behavior.  Babygirl said, "You don't really believe in that, do you?"

Oddly, medical personnel generally do. "Well, the moon picks up the entire ocean and moves it 12 feet up and down twice a day, right?  And people are mostly made of water, right?  And women's monthly cycles, on average, match the moon's monthly cycle. So....yeah.  I think I do."

So whatevertheheck was going on here last night, full-moon-residual-craziness or otherwise, we said a prayer for everybody and went to church, arriving in time to enjoy a nice, hot meal in the company of some very good folks, and we were grateful.


Saturday, November 8, 2014

And Tree and Flower.....

JuJuBee needed a ride to school this morning.  She's doing clinical rotations for her CNA certification at a local nursing home. It's on a bus line, but she had to be there an hour before the Saturday buses begin to run. She and I were treated to a sunrise spectacular all the way there. 

I have a confession to make.  While generally not a fast-food fan, I LOVE the Egg McMuffin.  Since there was a Mickey D's right on my way home from dropping JuJu off, (and since, for once, I was on no particular deadline and I feel that sometimes good deeds like getting out of bed into the icy November predawn should be rewarded) I headed toward the drive-through. Chatting with the woman who had taken my order, she joked about a grammatical error she'd made in our transaction.  I quipped, "If our Mamas knew how we'd turned out...!" She laughed, and said, "Mine knows."  I said, "Mine forgets."  She smiled and said, "My mother died of Alzheimer's disease a few years ago.  I was hard, but sometimes she said the most amazing, funny things!  You have to really enjoy those moments, you know?"  "We do.  We laugh a lot right now."

I drove away with a smile on my face and tears on my cheeks.  Isn't it amazing how, in one moment, you can connect all the way to the bottom of your soul with a total stranger?

When I was a child, my Grandma had a window covered by glass shelves.  The shelves were full of African violets of all colors, and they seemed to be always blooming.  When she died, my Mom took some, and I know I had a couple of them.  It seemed we could not make them bloom the way she did.  Actually, it came to feel as if it were she who was still making them bloom.  The last time I remember seeing one of them bloom was the day I brought Citygirl home from the hospital, tiny and new:  The first granddaughter of my grandmother's only daughter. 

I don't remember when the last of violets died of the neglect busy young mothers are guilty of.  But  I have proudly kept  a Christmas cactus alive since last year, and this past week it celebrated Babygirl's return from the hospital by putting forth one lavish bloom.

Like random connections to the hearts of strangers, God sends us re-connections to the hearts of loved ones who have left and wait for us elsewhere, signs in the trees and flowers that we are never alone, and I am grateful.


Friday, November 7, 2014

Hill and Vale....

Ups and downs.  We all have 'em. 

Babygirl was headache-free Wednesday evening to Monday night.  Tuesday she awoke with a killer headache, and we got to try the new medication, Migranal.

Migraine medication packaging is designed by Satan himself, I swear.  I can see Lucifer at Big Pharma drug development sessions saying, "Yes, yes, it works for the migraine, that's WONDERFUL.  Now make it impossible to open."  It's like dealing with a mirage in a desert, hope glimmering on the horizon.....

But I digress.  After reading the two pages of fine-print instructions and squinting at the teeny-tiny pictorials, Babygirl and I assembled the nasal inhaler to administer her medication (copayment cost per dose: $6.25).  I wish I'd had a camera to record her initial response to the sensation of a nasal spray.  After taking three doses 15 minutes apart, she had some partial relief and went to bed.  By the end of the day she was able to work with a tutor, and she went back to school on Wednesday. 

The headache was back yesterday, she managed the treatment on her own, and when I saw her last night she said the headache was a '1/10'.  We prefer zeros here but compared to the last six weeks of 5-10/10 headaches on an almost daily basis I'll take it for now. 

It's an improvement.  But being able to proudly say that my kid is down to only missing HALF of school is not exactly the dream goal I was hoping to achieve.  I'll see what she wakes up with and report the final stats to neurology today.  I'm sure I won't hear anything about a plan adjustment until next week, but...

Meanwhile I'm grateful for fewer headaches.  And for a treatment that works. 


Thursday, November 6, 2014

Of the Day and of the Night....

Night is already noticeably longer here now.  Since this week has been a struggle to catch up with everything that fell behind while Babygirl was in the hospital, I'm going to the gym in the dark and leaving my office in the dark, making my days feel somewhat as if they have only nights. 

The week Babygirl was in the hospital was spent in the lowest light level possible. The only discernable difference between day and night was whether or not I needed my flashlight to read (yeah, I brought I flashlight.  It was the most brilliant bit of packing EVER).

Earlier this week, though, there was a golden hour of pure daylight.  Citygirl, Curlygirl and I had wine. Mom and Babygirl were hanging out.  Conversation was lively, flashing from serious to silly, interspersed with Elderly Inappropriate ("No! Gramma! Don't talk about the episiotomies again! NOOO!!) (Citygirl is fairly sure she is never going to give birth to a child, by the way.  Thanks, Mom.)

I don't know if the sun was actually shining; in fact, I rather doubt it was, but my memory of the laughter is bright indeed.  The gift of three of my girls in one place at the same time is a great one.  The blessing of Babygirl's full, open, joyfully pain-free face is beyond price.

Night and day seem to have little to do with sun cycles for me.  When the night of Pain descends on your child, the bluest skies can become invisible to the heart.  And when the Pain lifts, no amount of bad weather can hide the Daylight, and I'm grateful.


Wednesday, November 5, 2014

For the Beauty of Each Hour.....

Tempus Fugit.

How many times do you look up at the clock and wonder what happened to the time?  How on earth is it lunchtime when you just had breakfast?  When was the last time you opened your eyes and looked, really LOOKED, out of a window?  How much of the beauty of each season passes unnoted and unremarked in front of your windshield?  How many smiling faces do you pass without really seeing them?  When was the last time you felt the softness of a blanket against your face, or the hand of your love brush your hair in the dark?

When was the last time you focused entirely on the moment you were in?

Each moment has its own loveliness.  Each caress, its element of holiness.  Each childish hug, a touch of eternal beauty.  Each and every joyful thanksgiving over a meal, holy communion. 

Pay attention!  See the beauty of each hour, and be thankful.


Tuesday, November 4, 2014

Over and Around Us Lies.....

What surrounds you?  Take a moment. Look around, right now.  Where are you?  If you are at home, are you safe?  Warm?  Cozy?  Surrounded by things and people you love?  If at work, is it meaningful, honest, good work?  Are your coworkers the kind of people who can make you laugh, make you cry, make you crazy, and make you glad to come back and do it all again tomorrow? 

If you are someplace surrounded by the things that bring you a sense of love, safety and purpose, stop and say, "Thank you."


Monday, November 3, 2014

For the Love Which from our Birth....

One of the most disturbing news stories I've read lately is about the woman who was walking down the beach holding her baby above her head. Eventually she simply heaved her baby into the ocean.  Luckily for the baby, bystanders saw it happen and went into the water to the rescue.  Another recent article spoke of a baby found alive after being abandoned in a trash bag.  There are hundreds of such stories, and many have far unhappier endings. 

I thank God that I have never been there.  But I have heard some unimaginably horrible stories, so unspeakable that if you look at it from the mother's perspective, death becomes a way of protecting a child from a fate truly far worse:  A loving if misguided choice.

We, who have been surrounded by the knowledge of love since our birth, either by the actions of our parents, the love of a grandparent, the grace of a church or the blessed kindness of a teacher sometimes forget what that knowledge has given us in terms of our personal security and mental health.  Despite the limits of the love of the people in our lives we have, at least, made a connection with the Divine Love possible.  Most of us have absolutely no grasp of the level of desperation or hopelessness that would lead a mother to make such choices.  

Do not think that I am in any way supporting the murder of children.  It is unthinkable.  But I want you to think, for a moment, about the love that HAS been gifted to you.  Imperfect, difficult, amazing, wonderful, healing, hurting, kindhearted, generous - flawed as all human love has been.  I cannot express how grateful I am for this love.  And now think of how much MORE the Great Giver of all Love has given you.  Gratitude multiplies.

How do we show that love to the unloved?  Do we stand in cold, unloving judgment of the choices of others or do we show them the kind forgiving grace that Love has shown us?


Sunday, November 2, 2014

For the Glory of the Skies....

Citygirl and I have a 'song':  "I Hope You Dance" by Lee Ann Womack.  It's beautiful (You can see the video here:  One of my favorite lines is:  "Give the heavens above more than just a passing glance."

When she was little, we were always looking at the sky.  Somehow, there was always something interesting going on.  In her childhood we had comets Hyakutuke and Hale-Bopp, and Haley's besides.  We had lunar eclipses, a solar eclipse, and a summer when all the easily visible planets lined up in a row on the horizon just in time for us to see them at the beach. 

We used to lay in the dark on the thyme-scented hill of our favorite campground staring at the star-filled sky until we were sure we could feel the earth rotating beneath us.  I put glow-in-the-dark stars on her ceiling with Cassiopeia's chair and Orion and the Big Dipper.

Hubby and I once took all the children to the top of a hill to watch a meteor shower in the middle of the night, all bundled up in sleeping bags against the late-fall cold.

It is too easy to look down, to have our spirits and souls drawn downward by life and care and sorrow and bitterness.  It is harder to remember to look up, to give more than just a passing glance to the beauty of the sky, the clouds, the sunset, the stars, and be grateful.


Saturday, November 1, 2014

For the Beauty of the Earth....

November has Thanksgiving Day in it, so it's become something of a blogger tradition to try an create a month of gratitude blogs.  Blogging daily is very challenging.  Being grateful is very challenging.  Doing both at the same time can be monumental.  I'll do my best to keep them simple, and confess right here that some were at least outlined a little in advance.  Sitting in a hospital in the dark with a sleeping teen gives you a certain amount of grace time.

On my most recent drives to and from Philadelphia I experienced a change of seasons.  At home, fall is nearly over.  The hills have hints of russet and grey, with a tiny bit of yellow and the remaining evergreens.  There is a muted beauty to the look of late fall and early winter. 

As I drove south, the early-winter look fades and mid-fall returns.  Reds and oranges and yellows reappear, dazzling corridors of color against blue skies.  In less than 48 hours I went winter-fall-winter-fall, each time blessed by the beauty of transformation.

Our lives are chaos, certainly.  Very little is harder than sitting next to a sick child in a hospital, hoping that things get better.  Lifting my eyes to the beauty of the world around me helps me remember that transformation is all around me, and I am grateful. 


Friday, October 31, 2014

Back in the Light...

Two adorable Ninjas just left my house:

Now I'm being inundated by little Elsa's. 

It's good to be home.

Babygirl is still headache free, and she an I spent much of the day outdoors, without sunglasses, raking leaves and tearing down the garden.  We harvested 30 pounds of green tomatoes. We found some lettuce hiding beneath them, one lonely cucumber clinging to the dead vines, and a dozen peppers.  There are still herbs, kale, and broccoli out there but they are all frost tolerant ones. 

I'm exhausted.  Nearly 800 miles of driving, four nights in beds that aren't my own (two on a pull out chair smaller in width than the average coffin and likely less comfortable).  Three nights with a kid who was so overhydrated that she needed to get up at least once an hour, unplugging the IV pole (conveniently plugged in directly above my head for one night).  One night with the IV beeping every half hour.  Loudly.  I think it might be kinder to just keep someone up all night than to let them think they just might get some sleep.

It was worth it.  It was worth it to see the nurses and doctors suddenly see my Babygirl emerge from under the blankets, out of the dark, into the land of the conversant and confident. 

And I have to tell you, being in a place that 'gets' what it's like to have a headache is amazing.  NO one comes in loudly.  NO one comes in and flips on a light, ever.  The dimmer switches were an awesome, amazing thing, making it possible to go gently from dark to light as tolerated.  And having window blinds that allow you to let in only as much light as you can bear is a gift beyond price.  Babygirl has been living in the dark with her headache for the better part of 6 weeks. 

Praise be to God for the Light.


Wednesday, October 29, 2014

The DHE Miracle....

They've run a ton of crap through that little IV.  Saline.  Methylprednisilone. Reglan. Benadryl. Depakote. And finally, this afternoon, DHE.

They had considerable trepidation about using this drug.

Dihydroergotamine is an derived from an old, old drug.  Ergot alkaloids have been in use since the cavemen discovered them in fungi growing on rye seeds (  Historically they were used to induce labor, and to treat severe headaches.   Because the sumatriptan caused her to have chest pain, and ergot can cause similar side effects for similar (frightening) reasons, there were concerns that there might be some underlying cardiac issues (oh for the love of all that's holy look at the kid's chart! she's had TWO full negative cardiac workups in less than 3 years, the last less than 6 months ago), so they had to call cardiology.  Nephrology had already cleared the drug, so once we got the final go ahead, they put it up.

Within an hour she was headache free.  The sunglasses are off, the lights are on, and she's getting restless and actually having conversations.  They are hanging another dose at midnight, and reassessing the situation in the morning.

Headache free is a blessing.  It isn't out of the woods, exactly, but it's a good start.


PS Oh, and the medical student did manage to make a fool of himself on rounds.  I did my best not to point it out but the attending neurologist was not so kind, poor kid.  Ah, I do not miss those days at all.

Tuesday, October 28, 2014

Coctail Via IV.....

After making the 384 mile round trip to and from CHOP Sunday and Monday, I got up and checked on Babygirl this morning, hoping against hope that she'd be all ready for school. 

Not so much.

The headache recurred at about one AM, meaning that she got less than 12 hours of relief from a procedure that I'm willing to bet we'll pay over $500 for. 

Did I mention that her Medicare is up this month?  Yeah, pretty sure.

Rather than wake me so we could start rolling back to Philly on 2 hours of sleep (sensible child) she waited until I got up.  I cleared some work while I had a quick breakfast and hit the road.  At 8:30 I called (hands free!) to let Philly know we were on our way, ETA about noon.

We got a bed on the neuro floor, a new place for us.  The nurses were not at all put off by the sunglasses, the room lights are all on dimmers, and the window shades are adjustable up to three layers thick. 

The neuro fellow is a Dr Christian, who, if the scar on his neck is any indication, has been in the fellowship of suffering himself a time or two.  His third-year (translation: freshly-hatched) medical student was about 3 steps above average and managed not to make a fool of himself even once.

That being said, she is a significant anomaly on this floor. They simply do not know what to do about the transplant and are, thankfully, tripping over themselves being hypervigilant about it.  It took until 5:30 to start the first of what I think will be a graduated run of 6 different medications aimed at breaking the headache. 

I'm sure they'll succeed.

What I'm not sure about is how they plan on keeping it gone.  And to judge by the looks on their faces when I pose this question, I'm guessing that this is not the first time they've been up against this.  And they don't likely have any really easy answers.


Monday, October 27, 2014

Nerve Blocks.....

After two years of headaches that range from annoying to unrelenting neurology finally called us down to try nerve blocks to break the most recent run. 

Nerve blocks are basically the application of a local anaesthetic to a nerve, like when your dentist numbs a tooth.  You can do small area, or a really big one depending on the nerve you are aiming for.  Epidural anaesthesia is one form of nerve block, and in that case you can hit up to 10 nerves at a time, numbing everything from the waist down, or just one nerve, numbing part of one leg.  I wasn't entirely sure what they were going to be aiming for here.

They offered a sedative ahead of time (and finally got it phoned into the CVS nearest my sister-in-law's house).  I was quite surprised by the dose: Ativan at 2 milligrams is pretty hefty. I order 0.5 mg to sedate a grownup, but hey, maybe they know something about how badly these shots upset a kid, so I give her the pill as we are leaving for downtown.  By the time we arrived at CHOP she was drowsy and more than a little cranky.  The nurse went through the risk/benefit talk, and explained that we don't know how or why it works.  I responded that at this point it doesn't much matter if they come in with grass skirts burning incense and waving maracas.  I need Babygirl better.

The doc explained the process and asked her where the pain was.  Since it was all in the back of her head, that was where the shots were to go:  Four of them, each with one injection to be fanned out under the skin.  Then the doc started looking for anatomical landmarks.

Take a moment and feel the back of your head, where the neck meets your skull.  The bones behind your ears rise up and meet above the center of the neck, and there's a bump on the back of your skull like the keystone of an arch.  Locating the nerves is done by touch, based on these landmarks.

Babygirl doesn't have them. 

When she was born in Guatemala, her mom knew that she wasn't going to be able to raise her.  She had already had one baby, and he was being raised by his father's parents.  She didn't want her Babygirl to go the US adoption agencies and leave the country, so she gave her to a local family.  She came back a few months later to see her, and found Babygirl lying on her back, starving and nearly dead.  With no remaining choices, she took her back and went to the agencies.  Most of them turned her away because they thought Babygirl was too far gone to save, but one agency took a chance, put her in the hospital, fed her up, and she ended up becoming MY Babygirl.  But one result of this history is that the back of her skull is completely flat.

It made the neurologist's day more challenging.  He figured it out.

Her scalp completely numb, she lay down and fell asleep for two hours.  When she woke up she was hungry, thirsty, high as a kite and some teen-girl place far beyond cranky.  The first time she stood up she would have fallen down if there hadn't been a chair behind her.

The doc discharged us.  We are to come back for admission if she gets a headache again this week.  Aside from that, what happens next is anyone's guess.  Nerve blocks work not at all, immediately, for a few hours, for a few days, for months, no one knows in any one patient.

Watching Babygirl try to select coffee was entertaining. We had to go through the line twice for her to make up her mind and she was purely evil.  It was a relief to have her pass out in the car, so I drove all the way home without stopping. 

It took a leap of faith  to even consider leaving Philly without being sure she wouldn't have another headache.  But...what it she wakes up tomorrow without one finally and can go to school?  I have to have her here.  Hope is thin, but it's hope nonetheless.