Monday, August 31, 2015

The Week Before.....

The week before a massive family event is always complete chaos.  There is a list of things that need to be done, and just about the time you cross one thing off three more things have tacked themselves onto the end of it.

I arrived home from the mission trip tired and grieving.  B's sudden loss was a huge blow to all of us, and there was no time to even consider really processing it.  We had no idea what the final arrangements were going to be.  George's funeral plans hadn't been announced.  My Dad's memorial had been definitively postponed until the after-wedding chaos died down.

Our back entrance, a 10 x 12 shared space for the two apartments in our house, has always been a shambles.  It has no heat, so the genius who ran water out there for washers and dryers before we bought the place cost us plenty in plumbers' visits when pipes froze in the winter because tenants didn't want to pay to keep a space heater running.  Tearing out the plaster and lath and insulating helped keep it warmer but didn't really improve the looks of the room.  So while I was gone, Hubby tore out woodwork and put up beadboard and began the process of making it....pretty.  Citygirl and her beloved did a lot of painting, and one indoor/outdoor carpet later: Voila!  a tolerably good looking entrance! (I still need to paint the door.  Oh, there is still a list, but we promised ourselves we would do NOTHING in August.)

The kitchen backsplash needed to be put up.  I had picked tin ceiling tile (which, these days, is made of plastic and can be cut with a good pair of shears - awesome product, I must say).  With Babygirl's assistance, that project took two full days.  I did, at one point, literally tell my mom to 'SHUT UP!' after she had, for the fifteenth time, advised, "Measure twice, cut once!" and asked, "When are you going to do this on MY side?" again.  She left for her side in a huff.  And then forgot all about it.  Ah, the beauty of dementia. 

I had found some lovely fabric at a garage sale - an immense amount of yardage on the bolt, sold for $1 by a local interior designer.  I made new pillow covers for our very tired living room pillows and a bedspread for the rented guest bed.  I made beds, put out clean towels and washcloths for each room, made sure each room had curtains (Mom has never used the upstairs of her side, so we never needed them!), getting creative with antique lace tablecloths and twine when needed.  I bought fans. We had a professional steam cleaner come in and clean our couches (ahh, no doggy smell) and mom's chairs (cats, she used to smoke, and old lady.  We can't talk about how much better her side smells without being insulting about how bad it used to smell LOL).

On Thursday my sister-in-law and I did a sweep of the house, looking for any construction items that had not been needed, and we loaded up the truck and headed off to all the home improvement stores.  We came back with over $300 in store credit (yeah, I have all the receipts. No, I didn't have them with me.  Did I mention I still have a LIST?) and a lot more room in the basement. On Friday, while the bridesmaids were all off having their nails done, we whipped through the house for a final clean-and-polish, and then she and I went off by ourselves for our own mani/pedi. 

When we came home we tackled our final assignment:  Make pudding shots.   These were for the after-reception barbeque, and they were simple, fun, relaxing and giggle-inducing to make.  It was a good thing:  The rehearsal dinner was yet to come.


Sunday, August 30, 2015

WHY did you leave....

In telling people the complicated story of my summer, one of the commonest questions is, "Why on EARTH did you leave town for a week two weeks before Citygirl's wedding?"

The answer is a complex blend of the balance of our lives.  Citygirl's wedding was a high priority, indeed.  I had taken off the entire week before the wedding to help with preparations, and had dedicated every weekend from April through mid-July to readying the house:  Adding a deck, upgrading a kitchen and remodeling a bathroom were all accomplished in that time. 

But Citygirl isn't our only child.  Babygirl still needs raising, and her life, in the past few years, has been a lot different than Citygirl's exuberant high school experience.  I had no problem giving up Beach Week for an event as momentous as a wedding, but the annual mission trip is an opportunity for fellowship and friendship that Babygirl's illness so frequently isolates her from.  To complicate matters (and to add just a TOUCH more stress to an already far too stressful summer) Babygirl's June run to Philly had yielded some nerve-wracking lab reports.  Her neutrophil counts had dropped.  Not into the don't-go-out-in-public-without-a-mask levels, but suddenly and radically lower than they had been.  Low enough, that as they stood, the mission trip was off the table. 


Well, or you could repeat them.  So the Monday before we were to leave, we went to the hospital to visit our favorite phlebotomist, only to be told he no longer worked in the lab.  Crap.  When your kid has ONE vein on the back of her hand, you want someone you know can hit it, right?  We hooked up with a new lady, got the tests and waited.

Wednesday, two days before we had to load up the vans to leave, we got the call.  "Counts are back to normal!  See you in October!" 

So we went to Lincoln County, West Virginia to install a floor on house for a family who'd been living with a dirt floor (and no bathroom, kitchen or indoor plumbing) for six years since a fire gutted their first floor.  We were the final team on the 7-week project, so we did painting, tiling, and laminate floor installation.

On the last day we had a bit of extra time, and the building inspector had said that the family needed to clear the construction trash before they could move in, so I rounded up Babygirl and a girl from another team and we started loading trash in the van to take to our Center's dumpster.  After the second load I realized that we needed to move the bags from the front of the dumpster to the back so that we could REALLY pack it full.  The girl from the other team said, "I ain't gettin' in no dumpster."  Babygirl just laughed at her and said, "I'll do it!" 

(Caveat: Please remember that this was construction trash, not garbage. And the dumpster was dusty, NOT disgusting.  I'm not completely crazy.  I'm NOT.  Stop laughing!  I'd have done it myself except that although I was sure I could get into the dumpster from the back of the van,  I was equally sure I wouldn't be able to get back out.)

Babygirl hopped into the dumpster and shifted about 30 fully-loaded construction-sized trash bags from the front end to the back.  She was able to stand upright under the top of it initially, and was climbing over stacked bags as time progressed.  With each additional load we brought she played dumpster-Tetris and stuffed them from bottom to top, back to front, until we had filled the entire thing completely.  Toward the end, she stumbled and sat down on a bag of trash.  She laughed - she was in the shade of the dumpster lid, there was a breeze, and she said,  "This is the coolest I've been all day - I could sincerely take a nap right here!"

At the end of the day, one of our other teammates incredulously asked her, "You really went dumpster diving?"

"Yup.  Bucket list:  Check!"

Dumpster Diving

OhMyDearLord that kid is funny.  And kind.  Clearly not every kid on this mission trip understood that dumpster diving was part of being a missionary, part of getting a family into a home that, this winter, for the first time in six years, would have a floor, a toilet, and a kitchen sink.

THAT's why I left.


Friday, August 14, 2015


For the last six months our lives have been all about the physical de-crapification of our house.  Buy a shed to store the tools that clutter the yard we are covering with a deck.  Empty the kitchen to put in new cabinets. Ditto the bathroom. Clear every unused room to create a Bed-and-Breakfast atmosphere for the wedding. Clean the spare fridge and get it running. Tent, and then UNtent, the yard.  Party set up, party clean up, and restock the utterly depleted pantry.  Clean the spare fridge and shut it down.  Keep track of the finances of the whole enormous project.

Week after week I've watched appallingly large amounts of yard waste, trash and recycling hit the curb.  We've returned about $100 worth of cans and bottles at a nickel apiece. 

We are finally, for the first time in months, back to transplant-standard clean in every room in the house (our bedroom was the final holdout.  I don't want to talk about it. There cannot possible be that much dog fur loose in the universe).

The de-crapification of my heart and soul may take more time and energy than this.  The overwhelming beauty and joy of a wedding crowned a summer laden with loss and grief deferred.  Sorting through it all, finally feeling it all, and letting the healing start is the work of this last quiet month of summer.


Monday, July 27, 2015

Three AM Friends.....

In our lives we are given only a few friends that we know with 100% certainty that we can pick up the phone at three in the morning for whatever reason, call, and they will be THERE.  Whether it is a shoulder to cry on, someone to go with you to the hospital with an injured child, or help with hiding the bodies (well, theoretically....) there are, perhaps, at any given time in your life only one to three people you could call on and not feel at all bad about it, knowing that they could, in turn, call you.

Last week I while was out of town for our annual mission trip.  My good friend B (we met twenty-six years ago in an exercise class for pregnant women when I was carrying Citygirl) came into town from Florida to help prep for Citygirl's wedding, not realizing that I was gone.  She stopped by the house, ran some errands for Citygirl and made plans to return this week, using the extra time to catch up with her many other local friends. 

Except, she didn't.

Sometime Friday she pulled her car off the road and called 911 for assistance.  We don't know why.  They responded quickly but by the time they arrived it was too late to help her. 

And like that, she is gone.

The police needed someone to identify her, and came looking for me, which was how Citygirl was notified of her death.  Another of her older friends was located for that sad task, sparing Citygirl that grim necessity.  Citygirl sent me a text instructing me to call her when we came into cell phone service range (Central Appalachia is generally not on the grid).

It was a sad ride home.

B was the kind of person who made friends in the grocery line.  She was kind to everyone. She was over the moon about her surprise pregnancy at the age of 42 (her first and only).  She cared for her parents until they died (just a couple of days apart) and came and cried on my  shoulder when they did. She opened her home to international students, friends, family and strangers.  She's the one who drove me to Philly while I did dialysis with Babygirl in the car (Week Twenty-four: More Gratitude....) when she herself had just driven over 1400 miles in the previous few days.  I helped her clean out her aunt's house after her death.  She offered to come and stay here to help if I needed it as my Mom declined.

She always put her whole heart out where it could be seen.  A true-blue three-AM friend. 

There is a new bottle of Irish Mist in my fridge.  I found it yesterday when I was looking for some vodka to mix with lemonade at the end of the day.  She must have dropped it off while she was here, planning to come back for an evening of drinks and stories on our new deck.  I wish I'd been here to have that drink with her. I wish she were still here to have that drink with me.


Tuesday, July 7, 2015

Twelve Hundred Miles......

It's been a long time since I made the Philly trip twice in one week (this time once for doctors' appointments for Babygirl and once for a family party), and I'd forgotten how tiring eight hundred miles of driving in one week can be. 

As I was recovering from the return trip on Sunday, I got a call from my stepmother.  "Your Dad is back in the hospital with pneumonia and he is not doing well at all....."

It took a couple of minutes to determine how bad she really meant he was, and to understand that what she really needed was help in deciding for sure what to do next. 

I called my brother. 

Bless him - despite the fact that we are both desperately busy right now, he with moving into a new home and we with preparing for the rapidly approaching wedding, he agreed to come along and do the driving.

It was after 7 PM when we left, and I fell asleep for over half an hour somewhere near the end of the drive (he actually didn't notice.  He continued to talk and he says I continued to respond.  I'm am quite glad I was not driving), and we arrived after 11. 

In the morning we discussed the situation with our stepmother:  Despite the fact that he was 'doing well' a week ago, 'doing well' was now limited to periods of being alert but disoriented, and being unable to eat solid food due to choking, being unable to hear or see, and of imagining that he was hanging out in Niagara Falls with my brother or that I was working in his nursing home.  On our last visit, less than three months ago, he had begged to get out and asked to die.  Currently he was desperately ill, not responding to antibiotics with another trial of antibiotics being contemplated.  We discussed her spiritual concerns, and her sense of guilt and helplessness in the face of his overwhelming decline.

We went to visit. 

When we arrived, he was unconscious and struggling to breathe.  His temperature was over 104 degrees F and he was under a cooling blanket because he wasn't responding to Tylenol.  He'd been given morphine to ease his breathing. 

We stayed for three hours.  His temperature came down and his breathing improved a little, but he never awoke or responded.  We talked with hospital staff (my brother remembers everybody from 30 years ago when we lived there, and everybody remembers him.  I am far less memorable!).  We shared memories.  We talked quality of life.  We discussed choices.

We gave him permission to stop fighting and let go.  We gave her the same permission and advice.  At this point even more antibiotics probably represent 'extraordinary measures' to keep him alive and he probably wouldn't approve; and in the end, they won't matter anyway.

And we came home.

I won't be able to be there when he dies, and I feel......horrible. 

I did what I know he'd want: I came home to my family and started doing what needed to be done here.  But...I want my Daddy.  I'm almost 60 years old, and I want my Dad.


PS At 5:30 this morning, he went home.

Tuesday, June 30, 2015

"When Do You Not Have to Worry?".....

A few months ago a church friend asked me, "So when do you not have to worry about rejection anymore?"

I told him the stark truth:  "When this kidney dies and she goes back on dialysis.  Then she goes on the transplant list again, and if we're lucky she gets another kidney and we get to start worrying again."

He was stunned, as are most people.  "Transplant" and "Happily Ever After" are not the same thing.

That being said:  We went to Philly for rechecks at nephrology, neurology and gynecology Monday and Tuesday (a massive accomplishment, getting all three in a two-day spread!). 

Gynecology is easy:  Cramps?  Nope.  Good - carry on, no changes, see you next year.

Neurology was a mixed bag:  Yes, we should increase her medication a little more, but we need to clear it with nephrology because it is causing some kidney side effects (increased acid), so we'll get in touch with them and then get in touch with you.  Make an appointment for three months.  (Well, except that if history is any predictor, they'll forget to ask and forget to call; and I've already checked and there are no appointments available on the one day Babygirl doesn't have school near the three month mark unless I speak to the special scheduler, and gee, she wasn't available.  Sadly, it's CHOP Neurology in a nutshell.)

Nephrology was just tough:  Creatinine is 1.3, up again after coming down briefly.  Calcium is up for no good reason (and believe me, there is NEVER a good reason).  Too much acid (neurology's fault, and fixable, increase the bicarbonate).  Neutrophil count abnormally (but not quite critically) low. There will be a team meeting to discuss what to do next. Increasing the mycophenolate is an option that has been being discussed for a long time, but concerns about her neutrophils have been the opposite side of that coin, so it's anybody's guess what's next. The word 'biopsy' came out, but they JUST did one, so I'm not sure what the point of that would be.  They agreed that increasing her neurology medication is not a problem and will call and tell neurology, so I can call and bug them later.

So since the appointments were spread over two days, and the first day ended at noon, we got in the car and drove east for an hour until we ran out of land.  Babygirl has never seen Atlantic City, and since we go to Bethany Beach (I think they have about the world's smallest boardwalk LOL) she's never really seen a Big Boardwalk town.  We walked about three miles of boardwalk, about three miles of sand, visited Ripley's Believe it or Not Museum (hokey but fun, and better than taking a 15 year old into the casinos!) and had dinner on the beach.  It was a nice break for the two of us, even if the news wasn't the greatest.



That moment when...

You are driving and you look ahead and see the kind of cloud coming down that makes you swivel your head in all possible directions to check for tornadoes, even though there isn't a bit of wind.  When, moments later, without transition, you go from dry road to full-bore downpour. 

That moment when...

You are afraid to look away from the road long enough to find the emergency flasher button so you just palm the dash until you hit it.  When you realize that a moment ago there was a truck in front of you, one behind you, and one next to you but you can't SEE any of them.

That moment when...

You can't recall if you are on that section of this highway to hell that has a shoulder or if there is a concrete barrier next to you, and you can't see either one.

That moment when...

You realize you've been saying, "Oh God, oh Jesus, oh God, oh Jesus..." over and over; and it is without a single doubt the sincerest prayer you have offered up since the last time your child was suffering in a hospital bed.

That. Was. My. Day.