On apologies and forgiveness

Forgiveness.  One of the basic tenets of the Christian faith.  Love one another.  Forgive one another.  Repent for your sins.  You'd think most Christians would be experts at forgiveness by now, that we would breeze right through this and move on to something a little more difficult.  Maybe that is because we confuse empty apologies with real repentance.  So, what is forgiveness?   And why do I fret so much over whether or not someone accepts my forgiveness or forgives me?  Why is forgiveness from a person (which is temporary and capricious and conditional) more important to me than the totally undeserved and no strings attached, unconditional forgiveness from God?  Do I really need forgiveness for perceived slights or bygone hurts from someone who couldn’t care less if I accept it?  More than I absolutely depend on God’s gracious blanket pardon of sins past, present and future?   And do I really mean it (and I mean REALLY) when I pronounce I am here to glorify God?  Or am I just jumping up and down flapping my arms and hollering “hey!  Over here!  look at me!   I forgive you! “

And then there is the incessant need to apologize, to say "Sorry" as a prelude to rationalizing bad behavior, being late for an appointment, for losing my temper, for, well, everything.  It's one of the first concepts children have drummed into them--to say "I'm sorry" when they do something wrong.  Instead of teaching them to admit their mistake, and to actually seek forgiveness from mom, dad, baby sister, teacher, or the dog, we shake our fingers at them and demand them to "tell Daddy you are sorry for spilling your milk," and "tell the dog you're sorry for stepping on her tail" or "Apologize this instant for hitting your brother."  We   confuse the two actions--apologizing (passive placating) and asking forgiveness (actively taking accountability for wrongdoing), and most of the things we apologize for are not even intentional acts of omission or commission, but accidents.  So, kids grow up thinking two things--that they are responsible for everything, and conversely, as long as they say "sorry," they are responsible for nothing.  Forgiveness is not even sought--the mumbled "sorry" covers all wrongs, and the other party (who may or may not have been actually wronged) doesn't have to do anything--hearing the "sorry" implies absolution.

Over the past few years I have learned a lot about myself, my tendencies, and my weaknesses, and I have come face-to-face with the specter of meaningless apologizing, with being the perpetual victim that being continually sorry for everything entails.  And I have realized, quite painfully and regretfully, that the majority of the instances I apologize for, I am either not responsible for, or, more likely than not, that I am intentionally sinning.  Yes, sinning, folks...not just "messing up" or "screwing up" or "forgetting". I have wronged someone, and thereby have wronged God, and by not actively seeking forgiveness, I have disqualified myself from worshiping Him.   In that act,  by not ASKING for and actively SEEKING forgiveness, I also have shot myself in the foot and have made myself incapable of receiving true forgiveness.  From the other person.  And more importantly, from the Holy One, the creator of the universe.  Just because God's forgiveness is a given, through the action of Jesus dying on the cross, does in no way mean we should not repent.  

And I am not talking about reconciliation, either.  At least not human reconciliation.  Asking forgiveness and being genuinely repentant for our actions towards or against another person does not guarantee that person will accept our request and actually grant forgiveness.  If that person is a Christian, then hopefully someone in their church circle will step up and start the process referenced in Matthew 18.  But if that person refuses to grant forgiveness, or will not ask for forgiveness, then it is that person who is disobeying God.  As Paul says in Romans 12:18, "if possible, so far as it depends on you, be at peace with all men.’"  If possible, he says. Meaning, it is a 50-50 deal, and if I have in good faith repented and asked forgiveness, then my role is finished.   The rest is up to the other person. Now as for repenting and asking for God's forgiveness,  that, my friends, is a "whole nuther ball of wax" as my daddy used to say.  We are commanded to repent, compelled to repent for our sins, because the mere presence of God's spirit in my soul pricks me and forces me to see the ugliness of my sin, and I ask God's forgiveness and He grants it. Absolutely. Immediately.  This is not a 50-50 deal...more like an all or nothing situation.   And that is where I lose sleep.  And obsess. Confusing one with the other.  And, stupidly and blindly missing out on the greatest gift of all time.  

But, not for long.  Because that still voice in me urges me, no forces me, to admit my sin, repent, and then throw that sin away.  And eventually, to forget it.  

As for my obsessive need for closure and acceptance and repentance and forgiveness from my fellow humans?  I am sill dealing with that, but knowing the enemy is half the battle--I see you, oh victim mentality, and I know who you are!  I know your tricks, and your games, and your whiny, whimpering self-deprecation, and you are not who I am.  I am His, and He is in me, and His grace covers a multitude of sins.  

Ameri-Christianity?

In C. S. Lewis’s Screwtape Letters, the demon Screwtape advises his protege and nephew Wormwood to convince his human target that politics are a key part of his faith. “Then let him, under the influence of partisan spirit, come to regard it as the most important part,” Screwtape said. That way, faith would become a mere pretext for politics.  Such is the atmosphere we live in right now...faith has become a pretext for politics, regardless of your faith of choice.  Institutional evangelicalism has spread like wildfire all the way to the White House, accomplishing, in my humble opinion, the exact opposite of the desired effect. One has to look no farther than the President's newly appointed personal pastor, Paula White, a populist televangelist from Florida, to see that.  And she is not the only evangelical preacher who has diluted (polluted?) the gospel message; nor is the Republican party the only one to marry faith to politics when courting voters. Both Sen Cory Booker and Mayor Pete Buttigieg have hired "faith advisors" for their campaigns.  In 2016, I was frustrated by the dichotomy of the two candidates and their respective parties, and how little either of them espoused my values. (see Election Year Dilemma)

So there is little wonder that I am confused and disillusioned in regards to my role as a Christian in the political process and my role as an American citizen.  And have been getting progressively more so over the past five years.  Evangelical leaders, political action groups thinly veiled as spiritual advisors, televangelists, and the like have succeeded in thrusting Christ to the forefront of the political melee, while simultaneously reflecting an image so unlike Christ it astounds me.  Moral majority, conservatives, the religious right, and ultra-conservative groups have somehow convinced media and the voting public that they speak for all of Christendom, that a vote for their candidates is a vote for God.  Democrat=Bad; Republican=Good. Liberals are equated with the anti-fa movement,  atheists and communists, and pictured as wild-eyed, nation-hating, illogical and over-emotional fanatics, while conservatives are promoted as Godly believers in all things good and true, as patriots, and as all-around great folks of strong moral fiber.  Racial profiling, gender profiling, age profiling—all of that has taken a back seat to political profiling.  Are you right or are you left?  Red or blue?  Pro-Trump or Never-Trumper?  We check out the FaceBook profiles of our friends and would-be friends and distant family to take an unofficial census of who is on our side, who is of the same political bent.  Age, race, faith, marital status—none of that matters as much as whether or not they will agree with, like, and support our political rants on social media.  

And I am as guilty of this prejudging as anyone else.  This truly pains me because I know I am missing out on meeting and getting to know many wonderful people, and vice versa.  I have been pigeonholed, stereotyped, sorted, filed and assigned roles, personality, characteristics, beliefs and values that do not even remotely resemble who I am.  If I comment on something a friend or a group posts, people who have never met me either applaud my sentiment and then send me a friend request, or they call me names, attack my character, and hurl keyboard obscenity after obscenity.  Even folks I have known for years, worked with, laughed with, and cried with, seem to want to assign me to a specific group.  And not just on FaceBook either!  I could be at the brewery, or a restaurant, or at a social gathering, and if I mention God, or Christ, the person I am talking to will either slap my shoulder and say, “Amen Sister!” or look uncomfortable and change the subject.  I am either in or I am out.  Our country has fractured into tribes, where groupthink is the overarching and overriding method for solving (avoiding) conflict, making (avoiding) decisions, and facilitating (avoiding) discussion of controversial issues.  Groupthink is NOT a good thing, folks.  It is lazy, and dangerous, and downright stupid, really.  Creativity and rational decision making and logic are thrown out the window all for the sake of cohesiveness and getting along.  And it is not only rampant on social media—actually, on media in general and in particular.  So what has happened to us as a society—the United States, that is--that has caused such a splinter in our national identity?  And don’t blame it on this President or past Presidents, or any elected official, although it sure is convenient and easy to absolve ourselves of all wrongdoing and make a scapegoat of one or two people.  The rapid expansion of technology into every facet of life, coupled with the ever-increasing popularity of social media, has contributed to making us a society of faceless critics, where we hide behind the security of our keyboards and screens and profile images to say things we would almost certainly NEVER say on the phone, in a letter, or at a public setting, let alone face-to-face.  The anonymity provided by our obsession with a screen, touchpad, and the ease of texting has lulled us into a false sense of self-importance, where we can say what we want when we want and to whomever we want, as long as we add a funny or cute little emoji to soften the blow.

But I digress.  Back to the issue of what I like to call Ameri-Christianity, where Christian tenets have become so distorted  and intertwined  with politics that it no longer reflects Biblical principles.  Pastors tell us how to vote, weaving current political issues and Supreme Court decisions into their weekly sermons; parking lots are filled with cars adorned with identical bumper stickers, making it easy to identify the political bent of the congregation.  (Sadly, these also dissuade newcomers, and send a message of “conform to this or don’t come in.”)  We have lived here for over 10 years, the last 5 of it full-time, and we have attended, joined, or contemplated joining seven different churches.  Not because we are unsure of our beliefs, or we had some epiphany on a certain scriptural issue, but because we discovered, either in the first couple visits or a longer period, that we did not fit in.  We are not cookie-cutter Christians.  God does not only bless America.  And He certainly does not interfere with our electoral process.  Yes, our faith and our beliefs should guide how we live, how we act, the decisions we make, big and small…including how we vote.  Just not the other way around.  

See, Jesus is neither a Republican or a Democrat—he is not a patriot.  He is not an American citizen, or one of the founding fathers of our great nation.  And while I am a citizen of this country, and of the world, more importantly, I am first and foremost a citizen of the kingdom of God.  And it is to that kingdom that I will always pledge my fealty.  

But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself. (Philippians 3:20-21)

Missing You

A year ago I wrote about Thanksgiving (Giving Thanks)--how it has always been my favorite holiday, how the traditions and the family and the food and the memories all wind together like a big pumpkin-colored ribbon, melding into one giant memory of food and smells and laughter and tears.  I talked about how different our Thanksgiving was in 2018, but we still celebrated it, giving thanks for the decades of memories and laughter we had experienced with family, but realizing that it would, more than likely, be the last Thanksgiving Day we would break bread with my parents.  I was right.  Ten days later, you died at home, and six months after that, your wife went to join you.  So for me, this is the first Thanksgiving in 64 years that I have not spent with, eaten with, or at least talked and laughed with, you, my dad. And I miss you.  So much that the food I just ate just sits in my stomach like a giant rock. 

As I watched the preparations and the kids' craft session, and smelled the turkey and the stuffing and the pies all baking, as family and friends arrived and filled the kitchen and the house with laughter and joy and stories, as the wine flowed and the gravy was passed, as the dishes were dirtied and washed and dirtied and washed again, I heard your laughter, saw your face, felt your hand on my shoulder as you said, "Damn it, Barb, I love you."  And I missed you, so much it was palpable, and the tears would just start to flow and I would have to run to another room or go outside just to get away and not have to talk about it.   Ben cooked up the gizzards the way you like them, but they just sat in a bowl on the counter because you aren't here to jokingly fight over who is going to get the bigger piece. I ate one, but it wasn't the same. We had turkey and stuffing and sweet potatoes and mashed potatoes, cranberries and rolls and green bean casserole, and the pie is still to come, but without your raucous laughter and comments about how this turkey was the best ever,  how no one knows how to slice turkey right except you, it wasn't the same. David is wearing your 90th birthday T-shirt from five years ago, and I spoke to Uncle Rob a few minutes ago, but I kept feeling like I was forgetting something, that there was a crucial part I was missing.   

You, Dad.  

I miss you.

Yes, I am thankful.  Yes I am blessed with so many countless blessings and riches.  I revel in the joy and love of my daughters and their husbands, my brother and my husband, my grandchildren near and far.  We have so much, so much more than I will ever deserve.  But I will always, always, miss you on this day more than any other time of year.

For you, above all, taught me the importance of family and love and memories made together.

And for that I am thankful.

Happy Thanksgiving, Dad.

Too comfortable for my own good

 I have a penchant for yoga pants and sweatshirts and t-shirts and Chacos, and going out without doing my hair or putting on any makeup (except lipstick...I gotta have lipstick, people).  I wake up, start off my day in my PJs, and then change into something that closely resembles PJs--sometimes I find myself in the car wearing my yoga pants/pajamas from the night before.  Either way, more often than not, I walk the dog and head to the gym or stop by the post office in baggy pants, an XL T-shirt, and no socks.  And I am fine with that...at least I was.  Until today when I was walking by a shop and caught my reflection in the window.  

See, this is how most of us THINK we look in "comfortable" clothes.  Hair down, cute top, black leggings or yoga pants, perfectly comfortable in our own skin.  You know it, I know it, everyone knows it...anything goes.  We've seen people wearing what should only be seen in the gym or in bed on planes, at the grocery, at church, and to school.  Because we have this mindset that comfort is okay, there are no restrictive rules about dress or appearance.  As long as I am happy with myself, and I am okay with how I look (act/talk/behave), then why should I dress to impress?  Somehow I think I am more authentic, more true to myself, when I just wear how I feel--comfy, loose, secure in who I am.  

In reality, though, this is how I look when I don't put any effort into my clothing choices for the day.  I look unkempt, baggy or bulging in all the wrong places, dark circles under my eyes, and basically, like I just do not care what people think.  Sure, to me dressing "down" means I am happy, secure in myself, at peace with the day.  But really, I am just too damn comfortable to even try to make a good impression, and it shows.   Forget about how unattractive and unappealing the image on the left looks (if you can). How can anyone take anything this person says seriously?  (Disclaimer:  this is a stock image from a google search of "yoga pants gone bad"...it is not a photo of me.)

Perhaps it's too many years wearing nondescript military uniforms.  Maybe it's the extra pounds I have packed on over the years that make it more challenging to find something that fits.  Or (and here's a thought), I could just be too lazy to spend just a few minutes to put together a halfway decent outfit.  Who knows?  Personally it is probably a combination of all the above, coupled with a pervasive attitude of "I just do not give a shit" anymore.  I mean, when I am feeling vulnerable and sad and insecure and depressed, I almost never let my outward appearance reflect what is on the inside.  Years of spit and polish and ribbons and gig lines and creased sleeves, putting forward that confident and professional image, the epitome of togetherness, not overly made up, no unnecessary accessories. Never let them see what's really inside--make them believe I have all the answers and can face any difficulty--the consummate professional.  Years of coming home and stripping off all the layers, changing into sweat pants and a t-shirt, bare feet and hair down or pulled back into a messy bun, able to just be myself.  

Whatever the reason, the excuse, the rationalization, I have become far to comfortable for my own good.  Sure, clothes are just clothes, they are not the person.  But what I wear does say volumes about how I feel, what my expectations for the day are, and how I hope to be received.  We have all heard the adage "don't judge a book by its cover," but if the cover is not neat and clean and inviting, no one is going to read the book, either.  What I wear, what I say, the expression on my face, how I walk, the tone of my voice, the amount of eye contact, my posture, and gestures--all these present an image of who I am inside, and what is important to me, and how much you matter to me.  How I present myself lends credence to the message I am trying to get across.  And being baggy and tired looking and sans an underwire bra speaks volumes.  I have become too comfortable for my own good.  

Sure, it's important to not be fake, or disingenuous; pretending to be something I am not, or hiding my true feelings, is not right either.  But, if I want to be heard, if I want the person or people who I meet or see to listen to me, to believe that I care about what I am saying, that what they say to me is important, I have to put the best foot forward.  I have to put some effort into caring about what I wear, how I look, and the impression I leave. Yeah, of course we could apply this concept to how we talk, the words we choose, our driving habits, and how we treat others.  But it truly does, for me anyway, begin in how we begin our day, how we wake up, how we present ourselves to others, and the pride we take in covering this book, this walking book of knowledge and life experience and insight.  

So, here's my resolution...no I am not going to burn all my baggy workout pants or ill-fitting leggings.  But, I pinkie promise I will only wear yoga pants when doing yoga, or working out AT the gym (not on the way or at lunch afterward or when I am thinking about working out).  And if you see me in something that resembles pajamas or exercise gear and I am not going to bed or participating in bona fide exercise, call me out on it.  

Please.

Did I do enough?

Rosalyn Carter once said, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."  Seems I have been a caregiver for quite a long season, most recently for my stepmom.  Losing her has been, and continues to be, extremely difficult and painful and raw.

Two moments I cannot seem to erase from my memory:  Sheila sobbing and exclaiming "I don't want to die!" in her hospital room June 12th, and the very vivid way she died in hospice three days later.  

She'd been sick for 15 months before she finally went to the doctor, and I don't mean "sick" in the sense of "not feeling well."  She had lost over 30 pounds in less than 5 months, could not control her bladder function, was in severe pain, and routinely had large amounts of blood in her urine--and I mean LARGE amounts.  By the time I convinced her to go to the doctor, the outlook was grim--three to six months, he said, if she did nothing.  I saw his eyes...he really meant to say, "three to six months, regardless of what you do."  We still made the effort though; she went to a specialist in Nashville, got pep talks from various medical staff, survived some scary hospital stays, and finally agreed to move in with us and go to the hospital in Asheville.  I knew the cancer had spread, and so did she, if truth be told, but we were betting on a few more years, hell, even one more year, with a halfway decent quality of life, even if it meant chemo and radiation and surgeries.  She would be with us, her family. So, the day after my birthday, on June 3, Alex drove to Knoxville and brought her here.  Her level of pain was so severe she could barely walk, so we gave her our room.  After two days, we went to the ER, and from there, she was admitted to the hospital.  Tests, tests, and more tests--the staff was incredulous as to how she had been managing on Tylenol alone--and we discovered the cancer had spread--to her pelvic cavity, to her spleen, and to her lungs.  Surgical removal was no longer an option.  Even more challenging, her right kidney had not been working for over 6 months because of the tumor encroaching on it, but the urologist and oncologist were hopeful they could get it going again, at least enough for her to survive some very toxic chemotherapy.  Six hours after that procedure, our hopes were crushed...again.  Her kidney function was not improving, so the only option left was for her to endure five grueling weeks of targeted radiation--and then the radiation oncologist added, "palliative care radiation" to the treatment plan, stressing that it was in no way to be perceived as curative.  None of the treatments were.  

That was a dark night, and one of the night shift nurses sat with me in the family waiting room, holding my hand, offering me coffee, and watching me struggle with my thoughts, with the reality of it all, with the decision I would have to help Sheila make in a few short hours.  That morning, at 7 am, I crawled into bed with this woman who was more of a mom to me than my biological mom, and told her we needed to talk.  I explained what the doctors and said, reviewing and summarizing the whirlwind events of the past 7 days.  I held her hand, and tried not to cry, and told her what the options were--6 weeks of hell she may not even survive, or palliative hospice for whatever remaining hours she had left.  She cried harder than I have ever seen her cry before, and my heart just broke into a zillion pieces, and then, when the orderly came in with a gurney to take her to her treatment, she abruptly said, "Get out.  No more damn treatments."  Then she turned to me, and told me to start dialing the numbers of every member of our immediate family, and she would tell each one, in turn, how sorry she was...that the news was not good.  Family came and family went, and I was just going through the day like a robot, no emotion, no feelings, just completely shell-shocked.  She moved to hospice on Friday, more family came to visit her there, and by Monday evening, she was "actively dying," as the staff told me.  Don't misunderstand: the staff was wonderful, personable, empathetic, compassionate, and just stellar.  They explained what we would see, what she would experience, each step along the way, and never kept us waiting longer than 30 seconds when we pressed her call button.  I have watched people die before, in all manner of sorts, but I have never actively participated in the death of someone I love.  

Her last few hours with us, she was pretty much out of it--not just from the morphine; her body was truly shutting down.  She held my daughter's hand about 9 pm, told her she loved her, and that was the last thing she said.  The next 90 minutes we watched hopelessly as her body pretty much just sank and shriveled up; her breathing became more irregular, her skin grew mottled, her cheeks became sunken in, and she had this horrible rattle in her throat.  The nurse explained it was her lungs giving out and gave her something to loosen the secretions--secretions that were filling her throat and her mouth, and I grabbed an oral swab and kept clearing her mouth, talking to her, telling her to go, to be with dad, to go to Jesus.  I was only dimly aware of anyone else being in the room, but could hear my sister Nancy talking and my daughter Becky crying.  Then, suddenly, it was over, and she was gone.  Dead.  No longer there.

Since that day, not an hour goes by that I do not relive those last 12 days, that morning on her hospital bed, and the final hour of her life, and I second-guess everything, every single act, every decision, every delay, every "oh well, she will be okay" and every moment I spent with her (and also the ones I was not with her).  I beat myself up for not forcing her to take care of herself last year, for not being a better, more demanding patient advocate, for not grabbing her by the arm and making her go to the oncologist as soon as we got that dreadful diagnosis.  I want someone to explain it to me, to tell me why no one told us until the last few days that our hope was futile, why no one could be honest with us and just tell us to prepare for death.  I regret making her cry one day when I was tired and frustrated and I yelled at her for not going to the doctor sooner--before we knew how really bad it would get.  I want to shake the stuffing out of her friend for not making her go to the emergency room before she lost so much blood, for not calling me or any of my sisters and telling us how sick Sheila truly was.  I am mad at myself for letting my daughter witness her grandmother's last few moments on earth, because it is not at all like TV or the movies; she will have that horrible moment forever engraved on her mind, as well.  Mostly, I am angry and pissed at myself for not being able to save her, or at least to have brought her home to die here, instead of in a strange place (even though the hospice house was absolutely wonderful to us).  Did I do enough?  Could I have done more?  Why didn't I just move in with her after my dad died in December?  Or move her in with us?  

Did I do enough?   

Yes, my faith is intact, and yes, I am well aware (and grateful) that God controls all things, and works all things for our good for those who love Him.  I am at peace with that, and with her time, manner, and place of death.  I know this guilt, this constant merry-go-round of shouldas and couldas and wouldas will not change the outcome.  I do not have that kind of power, to change the future, to change God's plan.  So, intellectually, yes I know I did what I could, and I loved her, and the guilt that I feel is a normal part of loss, especially for a caregiver.  But the human part of me, the emotional side, the critical, nagging, "I will never be good enough" part of me just keeps asking the same question, over and over again.  

Did I do enough?  Did I do enough?  Did I do enough?

There's a song by Warren Zevon, "Keep me in your heart for a while," the song the hospice music therapist recorded Sheila's heartbeat over.   Perfect, simple, and beautiful song.  

Shadows are falling and I'm running out of breath

Keep me in your heart for a while

If I leave you it doesn't mean I love you any less

Keep me in your heart for a while

When you get up in the morning and you see that crazy sun

Keep me in your heart for a while

There's a train leaving nightly called, "When all is said and done"

Keep me in your heart for a while

Sometimes when you're doing simple things around the house

Maybe you'll think of me and smile

You know I'm tied to you like the buttons on your blouse

Keep me in your heart for a while

Hold me in your thoughts, take me to your dreams

Touch me as I fall into view

And when the winter comes, keep the fires lit

And I will be right next you

Engine drivers headed north to Pleasant Street

Keep me in your heart for a while

These wheels keep turning but they're running out of steam

Keep me in your heart for a while

Celebration of A Life

Celebrate a life.  Prepare for death.  But celebrate life.

Too many times I celebrate me, or things, or achievements, and I forget to celebrate life.  I get all bogged down in life’s distractions and details and I forget to celebrate life.  About a month before she died, Sheila told me "Barb, I just don't want a big formal mass like your dad had, with everyone all awkward and sad and crying and all quiet.  I want everyone to be together, to remember me and your dad, to be joyful.  I want it to be a beautiful, happy occasion.  We have had way too many sad moments over the past couple of years".  And that is why we’re all here.  To celebrate a life well lived, to rejoice in our sadness and loss because it means we loved deeply.    And perhaps, hopefully, to stop and breathe and celebrate this gift of life our God has bestowed on us.

About a month after my dad died, Sheila finally acknowledged she was really, truly sick, and had been for some time.  Over the next five months, I spent a lot of time with her, nearly weekly in person, and at least twice a day on the phone.  I was there with her when she got the awful diagnosis of cancer, and held her hand as the doctor told her "if you do nothing, you have 3-6 months to live."  He was wrong.  She’d already lived her life.  Fully and without reservation. Now, she had the chance to prepare for the end of her life--he was just too much of a coward to say it.  He knew it.  I knew it.  And I know now that Sheila knew it.   For the next 12 weeks Sheila and I handled minuscule details and talked about the past, and how much we missed Dad.  And although she was frightened, and in a lot of pain, and trying to hold onto life, in actuallity she was relieved and looking forward to being with her husband again.  We would go out for dinner and margaritas and not even think about calories, and we would eat ice cream for lunch and consume an entire box of chocolate covered cherries while we watched Pawn Stars or Animal Planet.  We would cry, and laugh, and get angry, and fret, but all along, we both know what was coming.  We spoke about God and family and forgiveness and heaven and sins and holiness and if we would be found wanting when it was our time to be judged.  All facades and silly trappings fell away, and if I brought up anything about past hurts or misunderstandings, she'd bluntly tell me, in her own straightforward way, "Bullshit.  Let it go."  I think that pretty much sums up how she lived her life for  78 years.  Letting all the trivial stuff go.  

Sheila was quiet but had a way of getting your attention when it was important.  She was the most honest person I've ever known, and would never compromise her beliefs or her values for expediency or popularity.  And she loved with her entire being.  She had a way of getting along with anyone and bringing out the best in people, and helping others see themselves how she saw them, and, more importantly, how they could grow.  She married the love of her life, and never wavered in that love, and took on a ready-made family of five children without even a moment's hesitation.  She was devoted to her mom, her siblings, and all of us, and she was the glue that held us all together.  She saw through every crazy teenage lie I told her, and let me know that she knew the truth without saying a word, and without blowing my cover.  She helped me through trials, rejoiced with me when I rejoiced, and was always there to offer common-sense advice about marriage, parenting, grand parenting, and life.  Sheila was just the kind of mom who you wanted to please, who you wanted to make smile and laugh, and above all, the person you wanted in your corner for every step along the way.  She loved all her step kids as if they were her own, and adored her grandchildren and later her great grandchildren, and she made all of us feel as if we were her "favorite."  (Of course, everyone knows that I am THE favorite).  She impacted our lives in so many ways. I’ll miss her always, and I’ll love her always.  And I celebrate her life.  Today. Tomorrow.  Always.  Till I can join her in eternity to celebrate eternal life   

On being a caregiver...again

Sometimes I feel all alone, like there is no one in the world who truly understands me, or really comprehends what I am experiencing.  I mean, I know I am not alone, i know I have friends, and family, and of course, most importantly I have God, my faith, my beliefs and the knowledge that no matter what happens, no matter what I am going through, there are folks pulling for me, pushing me along, and at the end God’s waiting with open arms.  But still…like I said, I feel alone, confused, inadequate, especially when it comes to managing what life throws at me.  And I am not looking for pity, or sympathy, or even recognition—just awareness.  Everything in my life that I thought would be hard—exams, dating, finding a good husband, childbirth, cancer, family strife, deaths—it all seems so easy now, and I look back and wonder why I ever worried.  This?  I don’t know…maybe it gets easier.  Maybe I will get better at it.  Maybe I won’t.  

Ten years ago, my parents had a serious talk with me and Alex:  they wanted to know if, when they died, would we be willing to take care of my brother.  Ten years ago, we thought about it for a few days, talked it over with each other, and then willingly and eagerly said, “Of course!”. Heck, he was my older brother, after all, and I grew up knowing what all that entailed, right?  Every year or so, after a particularly exasperating week with David, my dad would ask “are you sure you still want to take care of him?,” we would ask what happened, they’d answer “you have no idea,” and we would roll our eyes and reaffirm our willingness to take over David’s care when it became necessary.  Ten years ago, we figured we would be prepared for that reality, and observed how my parents took care of him, how they spoke to him or about him, how they dressed him, entertained him, and fed him, and thought to ourselves, “we got this…hands down!”  Ten years ago we were still working, albeit retired from the military, and were enjoying our empty nest life—the girls were all married, there weren’t any grandkids yet, and the thought of our parents dying was a dim and distant occurrence.   Sure, we knew our parents were getting older, and sure, we knew it was inevitable that they would eventually die, but the reality of them dying and leaving us with that responsibility of caring for my brother was a long, long way off.  Ten years ago, I was confident I understood the intricacies of dealing with an adult who is handicapped, intellectually and developmentally delayed, with “special needs.”   I did not.  Neither of us did.  And we’re still learning.  After almost two years of being 100% responsible for him, we still do not understand the enormity of it all.  And for me that is the scariest part…not understanding.  Because I pride myself on how quickly I can become an expert on just about anything that I put my mind to, that if I can read about it, be exposed to it, talk to folks, and of course pray about it, I will conquer the problem.  

But now, more often than not, the sheer enormity and indefinite duration of this caregiving responsibility is simultaneously rewarding yet intimidating, comforting yet mind-boggling.  It is like nothing we have ever experienced, or imagined, or thought we would experience.  When our kids were growing up, we faced pretty much the same challenges as any parent, so we had this pool of common knowledge and similar experiences to tap into, and if that was insufficient, we had tons of books and other resources.  Potty training, learning to tie shoes, homework, dating, driving, leaving home—we would meet each hurdle and eventually clear it, then the next, and then the next.  Until our children became adolescents, and finally adults, and needed us less and less.  Then, our parents grew older, and less able to manage everything on their own, so we visited more frequently, called more often, explained the nuances of 21st century technology, and eventually, watched them become more and more dependent, and held their hands as they went to be with those who died before them.  Inevitable stages of life and growth and maturity and death.  And again, we were surrounded by friends and acquaintances traveling the same road, so again, we had access to a seemingly bottomless well of shared knowledge and experiences.  And if any of that failed to shore us up, the internet held an inexhaustible treasury of resources.  

Taking on full time care of an IDD adult, though, at an age when most of our friends are going on cruises and RV trips and taking on hobbies like pickle ball and tennis and hiking, is so hard to navigate, especially when no one we know is in that same predicament.  Sure, my friends may have a friend who has a kid with special needs, or they may have a cousin with Down’s syndrome, or perhaps one of their own kids is IDD, but we do not have ANY friends who have taken on the care of a sibling who will never be able to care for himself.   And trying to find programs, resources, benefits, caregiving tips, respite care, or just a support system is daunting, because there does not seem to be (at least not to us) any one agency or department or organization with all, or even most, of the answers.  Guardianship, social security representative payee, trusts, medical power of attorney, living wills, medication, healthcare coverage, psychological testing and treatment and coverage, public programs, financial assistance…the list is endless.   Online resources range  from frustrating and incomplete to nonexistent and conflicting, and there is not any overarching federal government agency, that I know of, that provides guidelines.  Most of the programs vary by state, and then, by the county within each state.  Availability and eligibility for state programs are hard to navigate, and in most cases, the waiting list for community-based services is 8-10 years.  We were lucky that our local vocational services had an opening for my brother for five days a week from 8-2, and most of my knowledge I have gleaned from random conversations with people in the system, but most of the time I only get a small piece of the puzzle, another phone number to call or website to visit , and still, I end up confused.  In the 50s, kids like my brother were “mentally retarded,” then in the 70s they were labeled as “mentally challenged” or simply, “handicapped.”  But political correctness marched on, and that was watered down to be “special needs,” and after discovering that was too vague, people like David are called “intellectually/developmentally delayed,” or IDD for short.  Whatever it is called, whatever the label, the availability of funding, training, and support services has not improved with the times—it has only become more complex, a huge labyrinth with lots of dark corners and dead ends, and more and more impersonal.  

We provide his shelter, his meals, his transportation, and companionship.  We make sure he doesn’t eat too much, that he takes his medicines right, that he washes his hands and brushes his teeth and shaves his face.  We help him pick out appropriate clothing for the weather, and make sure he doesn’t walk in front of a car, or stop him from picking up broken glass or making unsafe choices.  We show him every third day how to use a phone or shave his face or clean his razor or set a table.  This is so hard to comprehend, because no matter how hard we try, my brother will never change.  He will never learn things most people take for granted, or understand basic social nuances, or be able to be completely on his own.  We have to guess what he is thinking, or determine if he is in pain or sad or hungry.  It is exhausting.  Sure, it is rewarding. But it certainly is not easy.  I know, I know…nothing in life is easy.  But it seems to me that with our vast technologically advancements and innovations and global, instantaneous communication at our fingertips, we could offer families who provide the day-in, day-out care of IDD adults a more comprehensive support network.  Kudos, though, to the direct support personnel at TVS, the liaisons at Vaya Health, and our very understanding and compassionate community.  And to the families who deal with this reality every day, to the ever growing population of aging parents of IDD “children,” I am forever in awe of what you achieve. Every day, 365 days a year, without recognition or appreciation. Hats off to all of you!  

And to those folks out there who, like me, have a brother or sister or cousin who will always need someone to look after them, start researching your options now.  Because the more you know, well, the more you know.  

More than I can handle

We humans are a stubborn lot--proud, too, and much too overconfident in our own abilities to get through life's ups and downs.  I'm no different than the rest of you, mind you. I have faced lots of challenges so far--some easy, some nearly insurmountable, but I managed to stumble along. Sometimes I would ignore the problem and hope it would go away on its own (it didn't), and other times I would tackle it head on, full speed ahead, thinking I could use my superior intellect and vast personal experience to best the situation (again, utter failure).  Obstacle after obstacle, challenge after challenge, I tried my darnedest to overcome each one using human traits, until finally I would realize I couldn't do it.  Not by myself.  I needed divine assistance--if not to solve the issue, at least to get through it.  So I asked/begged/pleaded for God to help me. He did. Each and every time. Not always how I'd expected, or wanted, or prayed.  But He always came through.

A smarter person would have learned her lesson, and realize quite early on how inadequate she really is to manage life's trials and tribulations on her own.  Not me.  Nope.  Decades later, I persist in thinking, even if only for a moment, that I can sort out such and such a problem.  Very rarely, if at all, is my first thought, upon running into some new wrinkle, "Hey, God, I know you've got this covered, and I have faith you will hold my hand through this."  Sure, it may be my second (or third or fourth or nineteenth) thought. But I stubbornly lean on my own understanding.  Silly, silly me.  

Who hasn't voiced a worry to a friend, a Bible study group, an acquaintance, a family member, even a total stranger, and heard the "God never gives you more than you can handle" admonition? I know I have. I've even said that trite little phrase to someone facing a problem, and have felt quite smug when I did, as if that was all the reassurance that person would need.   Heck, I've even told myself the same thing, and blithely forged ahead, tackling whatever it was I had to tackle, trying this or that, all along believing that, since God would never give me more than I could handle, then well, I could handle anything. And when I failed miserably, falling flat on my face, I was bewildered, crushed, and broken. Time and time and time again.  Even as recently as this week.  

Thankfully, though, even though I am stubborn and proud and not too bright at times, I believe that, although God frequently (maybe even always?) gives me more than I can handle, He always provides me the grace to endure any test, and the strength to face the next challenge. Nothing I face is a surprise to God, or impossible for Him to handle.  With His help, and His grace, I can handle anything.  It may not be pretty, and I may muddle through, but even that is more than I could do on my own.

It would be good for me to repeat that to myself 100 times a day...upon waking, eating, and going to bed, and every moment in between.   

I am, after all, a stubborn, prideful human.  And obviously, a very slow learner.

On being a family

What is a family? Over the past sixty plus years, I’ve had my beliefs about family shaken to the very core. I used to believe family was more than just people related to me by marriage or blood, more than just the basic unit in society that social scientists define, more than just a household, or a common last name. I used to believe family was always there, always ready to support you, to stand behind you, beside you, and with you, no matter what happened. I believed a family shared more than a name or parents or a gene pool. A family would love you unconditionally in spite of you, in spite of any shortcomings or sins; a family was loving and supportive, even when no one else would, when it was not easy to do; a family “had your back.” Blood was always thicker than water. Family sticks with you, even when they disagree with you.

Sure our life hasn’t been easy—no one’s life is. We have had our ups and our downs, our successes and our failures, our agreements and our fights.  We are all so different—different values, lifestyles, beliefs, political stances, personalities.  Yet that one tie, the one thread holding us all together, was our past, our heritage, our memories, our shared joys and sorrows. That tie has been bent, tangled, nearly unraveled, and stretched, sometimes to the point of tearing in half, but it has still been there to hold us all together.  

Until now.  

Now that cord, that family tie, is no longer the tie that binds.  It has been severed, completely, cruelly, with a finality that breaks my heart. I have reached out, held out my hand and my heart, and have hoped for healing and mending of our broken family, all to no avail.  Things hoped for, but never realized—a reunion that will never come, a reconciliation that will never materialize, and a kinship that is now forever lost.  When Dad died last December, I heard the death knell of our fractured family and with the loss of Sheila, our fragile family disintegrated, broken like glass, into a thousand little pieces.  You have all effectively and thoroughly shunned me and mine. You have made it quite clear that you do not want to be associated with me. You no longer identify with me as family.  You have pushed us completely out of your lives, and you want nothing to do with me, with my children, my grandchildren—your nieces and nephews and cousins.  

If you meant to hurt me, you have. If your intention was to make me cry, again, you have succeeded. I have spent countless hours praying, reading, lamenting, and remembering, sometimes bitter and angry, but more often than not, mourning for the loss of not just people we loved—Dad, Sheila, Karen, Patrick—but the loss of a shared grief and a desire to heal together.  

But you have not destroyed me. For you have helped me realize what true family is, what it really means to stand behind and with and beside someone. I have been knocked to my knees, and it was there that I looked up and saw where my true family lies.  My faith has been the catalyst to heal, to understand why I had to be broken to be made whole. God reigns supreme in all things, and He alone knows where all this will lead, and how it will glorify Him. I now know that family is not merely a DNA connection, or made up of individuals who we are related to by name or blood.  Family is that wonderful group of people that God has placed in my life, whether through birth or marriage or by chance.  Family is there when I need them, providing support and love and help, grieving with me and rejoicing when I rejoice.  

And when I think about who will be here in October to help remember and celebrate Sheila’s life, and Dad’s legacy, I realize that every single one of those individuals are part of my family. They are family not because of a choice someone else made, but they are family because of a choice they made.  

And God blesses our family, and He will continue to watch over us.

You are welcome to join us, and celebrate, and grieve, and cry, and be, well, family.  But should you choose to stay away, know that I do not resent you, or think ill of you, or regret the past.  

You were my family once.  Perhaps you will join us again.

Letting Go

I miss these people, these parents of mine. So so much. It has been such a rough weekend, starting with that all too familiar drive through the gorge from our house to Knoxville. I couldn't help but cry because this trip is so different, so final. Weird, because I have made at least 25 or so trips over the past 18 months that were ten times more urgent--Dad at the ER, Dad getting worse, Dad dying, Sheila getting sick, an emergency admission. But this one? Driving to their old house to clear it out, to sell and give away their belongings. Friday night it seemed overwhelming, a Herculean task, as if I would never be able to empty it. Sorting through their things, emptying drawers and closets, moving books and dishes and trinkets and clothing, pricing furniture and odds and ends. How in the world do you put a price on a lifetime of memories? 

Finding odd little things that made me catch my breath and cause actual pain in my heart, like my daughter's wedding invitation and the corsage Sheila wore, pressed into her Bible. Or my dad's high school yearbooks and a pile of Father's Day cards he'd kept for the past 60 years. Even in the garage--crazy mementos, such as the disposable ponchos you wear at Niagara Falls when going on the "Maid of the Mist" boat--they actually kept them! And everywhere I turned I could feel my parents, smell them, sense them, hear Sheila tell me "jiggle the toilet handle or it won't stop running." 

Then the actual "garage sale," and dealing with strangers touching everything, critiquing things, asking about sizes, or age, holding up an object and asking for a price, and I would look at what they were holding and could only see my dad's face under the ball cap in their hands, or smell Sheila's perfume emanating from the familiar grey poncho being held up. Not wanting to haggle over prices, but at the same time not wanting to just throw things away, I spent two days watching their home become just another house, as one thing after another got loaded into a truck or a car. Marveled at the kindness of these strangers who paid me more than what I asked, who thanked me, and blessed me, and even helped me clean up; one really kind woman even brought me some fruit. 

Then, without any warning, suddenly the house was practically empty, with only a few things waiting to be given away. I walked through all the rooms, turned the thermostat back up to a respectable, Dad-approved setting, and went outside to close up. Suddenly, a golf cart pulled into the driveway and a friendly older couple waved and asked innocently "hey where's the lady of the house?" And I had to tell these former neighbors, who had moved away six months ago, that it was too late--she'd gone. We talked for 30 minutes, and amazingly enough, I didn't cry, or even tear up--it was as if I was unloading my heart, and I wanted to be gentle, to tell them they did not shock me or hurt me. 

I do regret neither of my sisters were here to help, to grieve with me, and none of their children, my parents grandchildren, even bothered to reach out, to say well done, or thank you. But in a way, it was better this way, to be alone, alone with my feelings and memories and emotions. And I know Dad and Sheila are together again, and they are no longer hurting, or worried. And I know they loved me, and that they knew I love them. And I am ever so honored they trusted me to take care of things for them in the end. 

Love you both. Thanks for all the memories.

Rest

Rest and relaxation.  Taking a break from reality.  Slowing it down.  Getting away from it all.  Unplug.  Off the grid.  Decompress and de stress.  These are the words that come to mind when you mention the word “vacation,” at least here in America.  In many other places in the world, people (and businesses) go on holiday, with the only objective being to not work, but to enjoy something that isn’t work.  Not here, no.  We fill our days, our hours, our minutes, in fact our every waking moment, with schedules, to do lists, goals, and tasks, and we pride ourselves in checking off the boxes.  Vain and self assured, we foolishly think we can control our lives, so we fill our days to the brim, oftentimes with more than we can humanly achieve.  Throw one unexpected twist—a flat tire, a cold, a broken furnace, or a death of a loved one—and our house of cards collapses.  And so do we—so we seek rest in a vacation, many times applying the same rigid timelines we apply to our daily lives.  

I recently returned from a two-week vacation, a long-awaited (and much deserved, I told myself) break from all my responsibilities, a getaway from the hustle and bustle, a salve for my tired soul, and comfort for my grief. You see, we've had a heck of a rough season, afflicted in every way, and although we were not crushed, I was pretty close to it.  I'd been abandoned and betrayed by family, all four of our parents had died in the space of two years, we had taken on huge care-taking and legal responsibilities, and my faith was perilously teetering on the edge of complacency.  Adding insult to injury, I was out of shape and overweight. Every fiber of my being screamed at me to run away, escape, forget, bury my anger and my sorrow and my grief, to rediscover my true self.   

Funny thing happened.  Even though the itinerary was chock full of activities, destinations, tours, and countless amenities (i.e. massages), I was not a slave to the schedule.  As I relaxed and unwound, I learned the beauty of ignoring deadlines, sleeping in, and just being me, and resting. I ran away and escaped, to be sure--right into the hands of a loving God. And discovered my resting place was always there, inside of me, where He had touched my heart and set me aside.  Amidst the joy of rekindled (and new) friendships, I realized how blessed I am, not DESPITE all the heartache, but BECAUSE of the heartache.  And I longed for home, to go back to the stress and the sleepless nights and the mundane tasks and the not-so-mundane tasks.  I was no longer afraid of lamenting, or sorrow, or frustration--they were all simply paths to a compassionate and merciful God, and a booster shot of His grace.  

Humbled, I tumbled right back into my crazy, hectic life, thankful for the respite, but relieved to be back home, and awed by how still and peaceful I felt deep down inside, even, no especially, in the midst of an emotional tirade, confusion, or the deep dark pit of depression.   That tiny, simple kernel of peace was still there, and all I have to do is reach inside, take a deep breath, say a prayer, and let it calm the maelstrom that is me.  

Rest.  In Him.  In His love.  In His peace.  In His word.  

And find rest.

Thank you Jill and James.