light a candle

this weekend, i've kept a candle going much of the time...i'm not quite sure what all that's meaning for me; remembrance, honor, prayerfulness......noticing (intentionally) that we've reached another milestone:
15 years into this journey of longterm illness/caregiving.
Mom says they have been long years....and she's correct. It hardly seems possible that this length of time has passed since Mom's stroke....but the reality of it all looks me in the mirror every day!
and it feels totally possible!
for me, the passage of time is hard to keep balanced in my mind....Life sometimes seems to move at lightening speed....my friends' babies are almost adults....and it seems like things move and change so quickly that i can mainly keep track of time by what i've posted on facebook:)

But we are often still. and, if anything, time is moving more slowly than ever.
Stillness isn't a bad thing....(i appreciate it in ways i likely never would have) but it is countercultural!
it seems like the natural and even worthwhile goal is to always be moving forward...onto the next exciting, "productive" pursuit...busy, busy in the work of living.
But the work of living for us has been slowed. and the daily work itself sometimes feels overwhelming and consuming. and there is little left over energy.
Simply Living is the work....and i do believe with all my heart that it's valuable work...."true, noble, and just". Being fully engaged in this "work" has enabled me to look life fully in the eyes.....to see both the lovely and the hard places....hopefully through eyes of grace.

At some points, i think i've polished up our story a bit....ended on a high note of "overcoming" and the like. I think overcoming is good...and i'm glad we're doing it!:) But i guess i've lost my penchant for polish. i have no sparkling stories today. We are weary and quiet and we live one day at a time in many ways.....goodness knows we cannot predict the future!! But it is true: every. single. day. of these 15 years I have seen my parents choose to overcome circumstances that would have felled most anyone else....through authentic Love lived out. every. single. day. So much more could be said, but it is true and needs to be said that they are amazing!! It is no small thing to weather so much loss and still shine with beauty and wisdom.

Life these days is small. It has to be as our limited reserves are stretched. Our going and doing is more tricky and so we're going and doing less. Hard choices have to be made a lot in the interest of sanity and selfcare (oh how i've learned to say no!!). But even with the "smallness", the truth of our story is that we live with peace and joy and blessings. (~ i should say "mostly" to account for the times (like yesterday afternoon with a sudden scary nosebleed and torrential rain!!) when i completely lose my head and the stress level is mighty high!!! ~ ) Still............if my ill fated adventures in "going back to work" have profited me anything, they have helped me be even more grateful for the sweet love and support my parents and i share. So, so many people do not share such blessings.

This anniversary usually falls somewhere in the Easter season. I'm thankful for that. Thankful to be reminded that whatever else may be the case about circumstances here...ultimately, Life Wins!! Today on the Church Calendar it's Sunday of Divine Mercy....and that seems so fitting. Today's Psalm is also very fitting, and brings comfort to my heart: Psalm 118: "Give thanks to the Lord, for He is good! For His mercy endures forever. Let Israel now say, 'His mercy endures forever.' Let the house of Aaron now say, 'His mercy endures forever.' Let those who fear the Lord now say, 'His mercy endures forever.' I called on the Lord in distress; The Lord answered me and set me in a broad place. The Lord is on my side; I will not fear."

~ Easter Sunday, 2015 ~ 

So i'll keep lighting candles, i guess. The reality is that we are all broken and need God's light to give us any comprehension of how much we need Him. That's not a cliche for me...it's my truth. I need His light in every corner of my heart....I need His strength in every task, every new chapter of living. So i'll keep relying on Him  for new grace. Keep learning and living authentically as best i know how. Keep Remembering. Keep on loving. Keep believing that Love Never Fails.

2015 ~ Hope

(my beautiful gift from a sweet friend....love it!)

Just a few words at the end of what has been a (fairly) restful long vacation day weekend (very needed). Almost the end of January is surely not too late to choose a word for the year?...technically, i chose it awhile back...just have never gotten around to blogging about it. It feels like blogging has taken a back seat for most of my old blogging compadres:)....and it's certainly been tougher for me to get my thoughts down lately. Life is busy....and has felt exhausting. It has been good to finally have a chance to catch my breath...to recover a little from what have been some topsy-turvy days. The past several months have held some huge transitions...and the jury is still out on how well i'm adjusting. I know i'm learning things about myself, my priorities, my weaknesses & strengths.....my needs. (and my willingness (practically & emotionally) to take risks....but that's a different blog!:) I do have some hopes, for this year and beyond....but i find i'm more in need of hope. i'm hanging on to hope.....
"Now Hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us."(Romans 5:5)

~ Sunday afternoon daybook : November 30th ~

Outside my window....it is hot again....we've had some very cold weather: coats, scarfs, the whole deal....but today is hot again and i'm not liking it.

I am thinking...that i am barely getting in under the wire on blogging this month...tomorrow will be December....unbelievable!! hardly anyone blogs anymore...(well, besides the famous bloggers) but a few of us soldier on:)

I am drinking...coffee. "i could not go on without it i know" to paraphrase a gospel song. seriously, i would not be functional without it. Early mornings are a killer for me...and Coffee is a saving grace! 

In the kitchen...i am learning how to make bigger quantities...big pots of soup that last for several days; my buying time is limited, so i am having to be a crazy planner...or no one in this house would eat. *sigh*

I am listening...to the Saints game! can't say i'm enjoying that all so much...sometimes i'm "into" such things....lately, not really. the noise of the game annoys me...

I am needing....to say no more. i've overcommited to things for Christmas...and somehow i guess i will survive this season, but in the future i must decrease obligations in order to stay sane...(this idea is not titled "learning" since i never seem to learn this lesson! or, rather, i seem to have to keep learning it!!)

I am reading...the Mitford series...i've never read through all of it and i am thankful to have these beautiful books to read now in this very stressful season of life. It is so well written...so, so sweet...calming...better than therapy!:) i want to marry Father Tim:)

I am looking forward to... my trip to Haiti!! (January 10-19) so very grateful that my $$ is basically complete...thankful for all of the folks who have given...

I am missing... friends of the heart who seem too far away...it is true that as adults we have to buck up and accept changes of reality and in relationships....but that is easier said than done.

Around the house...things are messy. My Mom says this is not true and i need to stop telling people things are a mess....i appreciate her sweet support...but i know the truth! i should be working right now to make it more tidy...

I am thankful....to not be as anxious about the upcoming holidays as i sometimes am...And that my parents seem to be doing ok with my working...

I am pondering: "identity"...how fluid and how defining it is in our lives...

a quote that's speaking to me: "Anticipate difficulties; bank on grace" (Bob Goff) so many of his words speak to me, but today these are the ones...
oh, do i ever anticipate problems!!...in reality, this self preserving mindset makes good sense in my life (although overdoing that tendency is easy) and (thankfully) i DO bank on grace...how aware i am of how useless i am without it! but how much more of His grace i need...

A few plans for the rest of the week: keep my head afloat at work...go to bed earlier...final practices for next Sunday's choral concert (we're singing "the Messiah"...i have esp. needed those words this year)...finish up a little more decorating and getting the house ready for Christmas guests...

A peek into my life: 

somehow, someway the decorating always seems to get done...and we so enjoy it, even with all the imperfections. my prayer is that this Advent and Christmas season will not be just one more happening that rushes by in a blur....that even in this time of transition and weariness, my eyes will be open to His presence...

~ Daybook : October 23rd ~

Outside my window...is some really wonderful fall weather...i love this time of year in Louisiana...

I am thankful...to have found a new job (disability case management). it has happened quickly after an immeasurably long-feeling process of looking. as much as i'm thankful, this transition will be bittersweet.

I am thinking...that i will miss being a "housewife":) For years i've said that's basically what i've been (on top of caregiving, of course) (and, granted, without most of the wifely benefits or status!) So many reasons i need and want to "go back to work" but i will miss being home. Mostly, i will miss being with my Mom.

In the kitchen...i have been making LOTS of persimmon bread (so yummy!). I will have to be very organized in planning meals once i am working. My mind is already planning ahead and thinking of efficient ways to make this all work...

I am listening...to one of my very favorite cds "Autumn in New England". earlier, I was listening to our Ann Baldwin cd...so comforting..."Build your hopes on things eternal, hold to God's unchanging hand..."

I am hoping...i will still have the time now and then to blog my thoughts...and that, someday, i really will be able to put in book form the story of loss and love my family has traveled together...

I am reading...Barbara Brown Taylor. She is so good for my heart. i've just about finished her beautifully written collection of sermons (Home by Another Way) and i've just reread Leaving Church (i needed it again).

I am looking forward to... some good visits with friends....i enjoyed a "girlfriends weekend" recently and a couple more little local trips are planned...grateful! 

I am learning... this....this is what i'm learning. (from author Elizabeth Gilbert)

Around the house...i am trying to finish up a thousand things that i should have had done long ago!! i proclaim a curse on all magazine subscriptions!!! out to the garbage with them all!!

I am pondering...what matters (do we ever stop examining this?) I'm glad to have gotten a job...i hope i do well with the tasks given me...but the truth is, what i do "professionally" doesn't matter any more than what i've done personally. there's no more value in something we get paid for than there is in what we do in love....and i want always to see this clearly...

One of my blessings... is praying family and friends...Their prayers have carried me through difficult times....and i'm trusting on them still!

A few plans for the rest of the week: more work tying up lose ends!! and, tomorrow, we plan to spend the afternoon in New Orleans....yay!

A peek into my life: (i know this daybook has been "job heavy"...it's where i'm at...i'll try not to let it happen again:)

it has been really great to exercise outside in this lovely weather!! peaceful...

some rambling thoughts on fundraising, giving, etc...

So, my Dad looked at me tonight (my sweet, rarely finds a fault with anyone Dad) and said
"What about stroke research?"
It's never wise to play the comparison game....and so we decided not to:)
but the question's a valid one, I think....
If only there was enough money to solve all the problems of the world.....actually, if only we better spent money on addressing the problems we really could affect: basic nutrition, basic health care, basic water supplies....so, so many needs all around the world and right at our own back doors...
This whole water dumping/ ALS awareness raising campaign has mostly seemed like a pretty good idea to me....
I listened to an interview with a spokesperson for an ALS support group and she seemed overwhelmed by the $$ given....very much realizing the group's good fortune that this has become the latest social media trend. I HOPE everyone dumping water and donating money is also taking time to educate all involved on the facts of ALS. It is truly a heartbreaking disease and DESERVES  every dollar given and every ounce of attention received!!
I am not a naysayer.....
I am not a partypooper....
I am also not a fundraiser......I'm still not sure what my career path holds (she says wearily!) but I'm pretty sure it's not raising $$. There's a place for that. And in our very goal oriented and success oriented culture we like to think that if we throw enough money at something we might just can fix it. And let me be clear: I'm all for research! I'm amazed at how much brilliant Doctors can do to help us in times of physical need. But anybody who's personally dealt with and studied neurological issues knows research is long and slow because it's Hard!! We're still not as  smart as we'd like to think we are about the brain (and all of the body, really!) We often hear phrases like "beat this"/ "fight that" in disease fundraising.....i'm here to say when it comes to most illnesses, our power to fight or beat them is pretty much nonexistent. The goal should be to not let them conquer our spirits!! We are more than
our diagnosises and our sicknesses.....we are all broken, complicated God created beings in a broken, complicated world.....our lives will not end if or when an illness "beats" us.....and our consuming aim of this world should be living in grace and knowing we're fully prepared for the next world! (Maybe that sounds preachy but that's what I really believe.)

All of this philosophizing to say this: Do the ALS challenge if you want! And then: go find the person in your life who's experiencing a longterm or shortterm illness and reach out to them!! Give them a call......send them a card. Shoot, stick a 10 dollar bill in the card!! (If their family is like most, their financial resources have long ago been affected by medical costs and sacrifices!) Or not....the personal concern is the main thing. It's clear to me that the longer a person is "sick", the easier it gets to ignore them.....the more "normal" their illness seems....
Send flowers. Pray more. Bring over a meal.....food ministry ends Very quickly once a "crisis" is "over"...spend some time visiting....ask what you can do to help.

Look out for the people who are suffering in your own world! Giving to causes is good and necessary....having fun and feeling warm & fuzzy about your own generosity is a plus:) But I challenge you to step into the messiness of real, up-close physical and emotional pain....don't necessarily try to fix it but don't choose to overlook it. Let it change you....let it make you take account of your own mortality....let truly loving and giving of yourself to someone who is struggling with illness make you better...


*i will save my ranting about the "caregivers tax credit" legislation that has been languishing in Congress for YEARS & YEARS (and would actually financially help lots of families) for another day! Or ask me about it next time you see me :)

always another bend in the road...

"You can be kind and true and fair and generous and just, and even merciful, occasionally. But to be that thing time after time, you have to really have courage."

(Maya Angelou)
(i love this quote!)

it's been busy here....the days are winding down on what has been a very busy and demanding season...

there's another bend in the road....and i find myself doing some evaluating on how i'm doing....and of all that has been done....i see the hand of God and of Great Faithfulness...

some hard choices have been made: to choose faith over fear, grace over bitterness, perseverance over sheer exhaustion and giving up...Hard choices are still to come...

through a combination of convoluted circumstances and providential leading, i have discovered new strengths in new roles....new "skills" for a resume that seems to be doing me little good *smile*...new confidence in focusing on lasting truths vs. dancing to the whims of others...

i'm reading a book called This Is A Soul, The Mission of Rick Hodes (Marilyn Berger) that my dear friend Susanna recently loaned me....

the timing couldn't have been better! i won't ever do the "big" things that Rick Hodes is doing to change the lives of countless needy people...but his story challenges me to better value the intrinsic worth of the individuals in my life....no matter how much i believe it and know it, i keep needing the reminder that every single act of love and faithfulness we do matters...

the messages of "not enough" are pretty loud (and pretty universal)...even when i know better...

i'm trying to understand some things about my life so that i can move forward in a positive way. At this stage, i find myself more and more put off by emphasizing the grand or flashy (i don't really believe that has anything to do with my spirituality! as much as it has to do with my personality and experience)...."grand and flashy" seem to be what's popular....and that mindset subtlety affects our thinking, i think:) ....
so it's not that i'm worried about the "smallness" of my life...and i'm not really experiencing selfesteem bothers 
(i think i have a fairly clear picture of what and who i am (and of who and what i am not!) ~ it's just trying to understand how all the components of my life fit together....how to use what i have and what i know to do a little good with the little bit of time that i have (hats off to my Vision friends for having that line stuck in my head!)

All that to say, i am learning...how to walk in "holy courage"...how to face new heart places....how to own the choices i have made within the situations i have found myself, how to remember that faithfulness has paved the journey and will continue to....

dear members of my very limited readership:) will you help me pray for open doors, for direction, for discernment? i don't think there is any "magic" in our prayers...i still need to take initiative for movement to happen in my life! but the prayers of friends are always valuable! thank you....

~ a quickly done Daybook : May 15th ~

Outside my window...is some of the loveliest La. May weather i can remember...on this evening the windows are open again...i am loving how cool it feels..and the sunshine has been good for my heart in these last days...

I am thinking...i. am. trying. to. stop. overthinking. some. things. (not everything, just some things!:) I realize more and more how so very, very many things are completely out of my hands. It's freeing to live with open hands...knowing outcomes are (most of the time) not much of a reflection of me...(but it's a bit tricky, too!)

I am thankful...for resolution of some uncertainties...*sigh*

and that April was a good month....blessed with friends and needed peaceful moments (despite some significant stress)...

In the kitchen...there were "skillet enchiladas" tonight..one of our favorite meals. I make it more healthy with multigrain tortillas and black beans....

I am wearing...comfy clothes. Have changed multiple times today, unusual for me!

I am listening...to the old Gaither trio "Hymns Classic"...bought it for my ipod since we only had it on a tape. It's so sad to be of the "tape age" :) so many memories associated with this project...wonderful listening!

I am frustrated...about my dismal job search...that it feels like the resumes i do muster up the energy to actually send out seem to not even get looked at...

I am hoping...that with the needed alleviation of some "over-responsibility" tasks, i can now devote more intentional time and skill to the job hunt...not because i need a job to have a complete identity (lots of thoughts on that dynamic!!) but because i do still feel as if i have something to contribute...

(and there's the small issue of actually needing $$ to live!:)

I am reading...Sarah Bessey's Jesus Feminist (dear gentle reader, do not let the title dismay you! it is thoughtful, encouraging, and gracefully written) 

and i'm just starting Brené Brown's I Thought It Was Just Me (but it isn't): Making the Journey from "What Will People Think?" to "I Am Enough"...

(what a title!)

I am looking forward to...going to visit a friend i haven't seen in about 13 years...time moves so very quickly...it's crazy! Very excited to spend some time with my college friend Susanna and her family...

I am learning...that we often underestimate the depth of care and loving others offer...and the level of hurt that happens when trust is broken...we may even underestimate these emotions in ourselves...
the potential for beautiful things to happen can be easily squandered...
i am learning (in new ways) that it's so important for our eyes to be open and our defenses laid aside...  

Around the house...there is much to be done....much to be sorted and thrown out/given away. i feel like i may be coming to a point where i'm actually in a space to tackle some things. (may is the operative word here!)

I am pondering..."wholeheartedness"...and also, the risk of an open heart...

(yes, indeedy, i am listening to and reading Brené Brown!)

One of my favorite things...BBC shows....some are worthless, of course...but others: they are so very rich for the soul. ("Call the Midwife" would have to top any list!) 

A few plans for the rest of the week: The week is almost over and it's been survivable...better than survivable, actually...

the weekend will be busy as always with lots of "ministry" stuff....

"O, Lord...with all our frailties and imperfections may we lift You up and glorify You!"

A peek into my day...

this is known as a "Sonja Shake" (spinach, banana, avocado, and almond milk) ...it is yummy and healthy! i've been drinking these after exercising...good times:)