Tuesday, August 20, 2019

The Dramedy That is My Life

Sitting here in a darkened hotel room, Kenny well drugged and fast asleep near me, I find there is no way at all I can even doze.  It is almost midnight here in Chicago, and I have slept a whopping grand total of four hours in the past forty-eight hours.  My  mind has been on overdrive for weeks now, my heart has been squeezed a little too hard lately, and that is a bad combo for a good night's rest.

Today's surgery went well, though we waited seven hours for him to go into the OR, his anxiety ramping up as he tried to distract himself.  More bone grafting, the removal of two front teeth for a total of three top front teeth that are now missing and will need to be replaced with implants, a couple hours stay in recovery, and we were finally back in our hotel room many hours past when we had anticipated.  He rolled over and turned off the light long ago, and here I sit, alone with my thoughts, trying to sort through so many events and emotions.

I lost my mom a week ago tomorrow.  It somehow feels like years ago...and yet like moments ago as well.  This past year has been, as Dominick said to me over the phone, perhaps the hardest year of my life.  He has been around a looooong time and seen me go through some doozies, long before we had kids as my family struggled mightily with so much, as each of our own children came home and we worked through monumental issues, and as he and I worked at a feverish pace when we first arrived in Colorado to build a business and a new life.  Nothing really compares to this year.  As I measure it all, it reads like a dramedy, that is if I weren't actually living it.  

In the space of 13 months here is the "scorecard" of what has happened, just the big stuff:

1) Mom was moved from temporary rehab to permanent nursing home care
2) Rushed out to CA to pack mom's house up in 3 days, get her finances in order, and make many arrangements to sell her little mobile home.
3) Dominick and I have been to CA six times to visit moms and help as we could.
4)  Kenny had three different surgeries, two of them fairly major, with five multi-day trips total Chicago
5)  Spent months dealing with the State of CA to get mom approved for Medi-Cal
6)  Had to travel to New Mexico to handle banking issues for mom for her Medi-Cal approval, because it was the nearest branch available.
7)  Homeschooled four kids all year
8)  Graduated two kids from high school
9)  Drove back and forth to Colorado Springs (5 hours and an over night trip usually) five times for camps and retreats for the kids (Dominick handled a lot of that)
10)  Spent the entire year developing, constructing, teaching, and building out Buckaroos Slices and Scoops which will open...well...as soon as we can manage
11)  ANd this one I still can't quite believe...spent two weeks in New England with my best friend, Candi, as her mother was on hospice and passed away so she didn't go through that alone, returned home for two weeks, only to oddly find ourselves in the circumstance of...
12) Spending two weeks on the opposite coast to be with my mom as she was unexpectedly put on hospice and passed away from the very same issues that Candi's mom had.  We literally don't have words to describe this unusual and painful coincidence, but we do know God provided the support we needed in each other.
13)  Had a summer long visitor at home in our intern and adopted nephew, Billy, who was a God send in all kinds of unexpected ways
14)  Multiple emotional/brain challenges that made life...well...challenging in ways that simply can not be explained unless you have young adults with FASD and "get it".
15)  I had health problems with a thyroid completely gone haywire and off the charts with meds not working for 5 months or so
16)  Blue Collar Homeschool Facebook Group grew by 2800 members to 6800, requiring hours and hours of time to be the admin and share content, send out over 75 certificates, and other behind the scenes work.

As I lay all of that out on the metaphorical table, it makes it easier for me to see just why I feel so overwhelmed...and that I am not a total wimp.  My emotions are haywire, sort of on the fritz, so to speak, and I find I am walking around enveiled in a translucent,  gauzy haze, trying hard each moment of every day to simply move forward.  There is a flatness to my heart right now, an unfamiliar inability to be fully present in the way I usually move through the world.  Right now, simply making it from one day to the next is about all I can manage.  Summoning joy is growing harder by the month, despite the gratitude I still feel daily for all I have been given, and there have been multiple times when I have told Dominick that I want to run away from my life for a little while.  

It's a season, and any mature adult has been through these tough ones, but somehow that knowledge doesn't make it any easier at all, does it?  We can know the truth of the statement "this too shall pass" while still frantically screaming with fists upraised, "I KNOW that, but WHEN???"  I have had many, many moments when it feels like everything is falling apart, and in some ways, it has indeed fallen apart.

And then, somehow, little pieces are put back together.  No, not the entire puzzle, but right now, just getting the border connected and new "framing" for my life in place would be considered a huge "win".  People offer beautiful, heartfelt words of encouragement, and that helps.  People pray for us and our myriad struggles, and that helps.  People literally show up and offer meals, rides, physical labor, and that helps.  People REALLY show up and hold your hand, those special friends who sit beside the bed as you wait for a loved one's healing or departure, or they message you regularly saying, "I love you, my friend." and through your tears, you smile and hear the "click" of one of those corner pieces connecting to another border piece.  You have a melt down in private, and someone grabs the kleenex for you, makes your next plane reservation, and listens to you by the hours as your voice trembles in grief...or fear...or a combination because your life isn't about one single hard thing, but too many hard things all at once and you don't know WHAT you are feeling and can't compartmentalize it no matter how hard you try.

One thing that being in your fifties does for you is give you a sense of certainty that at some point, it will turn around, nothing lasts forever and our lives are constantly in flux.  You become more pragmatic in your more rational, unemotional moments, and can trust that in time you will be able to breathe more deeply, your shoulders will feel lighter, and laughter will return.  Until then, you muddle through, you keep "adulting", and you do your best to find the simple pleasures in dribs and drabs.

Maybe reflecting on those dribs and drabs here for a moment will help calm my mind and allow me to finally sleep...

My Dribs and Drabs of Joy

1)  Kenny is in little pain tonight, sleeping soundly, meds doing their job.
2)  Continuing to receive emails and messages from the kids, and from Candi's daughter, sharing their hearts with me, letting me know I am loved through it all, and what they have learned from me.  At a time like this, it is a great reminder that we adults model all the time, whether we know it or not.
3)  Dominick is a rock star.  Seriously.  He covers the bases like no other husband I know, and with a smile every.single.day.  At 9:00 pm one night last week he immediately offered to go fly on the 6:00am flight the next morning to Salt Lake City then make the six hour drive home, after I had left it there to fly to mom and couldn't figure out what to do about it in order to get to Chicago and then fly back into Montrose on our original ticket.
4)  A conversation today with a young man Kenny's age at Shriner's who is undergoing his 30th surgery this week, and has had a setback or two but continues to reach out to those young kids around him who were scared and waiting for their own surgery to begin.  
5)  My mom's roommate at the nursing home...a light and someone who loved my mom daily during her last year.
6)  Diet Coke.  Need I say more?
7)  A decent hotel mattress to sleep on tonight, unlike other nights while I have been gone...or not sleep on as the case may prove to be.
8)  The best best friend ever who was scheduled for a vacation and instead came to be with me and mom, which was even harder considering she had literally just done it for her mom two weeks prior.
9)  Monterey, where we went for two days the night my mom passed so I could feel it all as deeply as I needed to, could try to start breathing, try to get my head on straight so I could be in the right frame of mind for Kenny immediately afterward.  The rocky seaside coast we walked alongside soothed me, drew me and my thoughts in, asked little of me but to sit with my grief for just 48 hours and the seagulls called to me, "It's OK, cry out to us!" and God hugged me there as the wind brushed my hair back.
10)  My joy that this year hasn't been even harder, for though it has indeed been emotionally almost crippling, I am still standing, still present, still able to see beyond myself and offer a hug when needed, a smile of appreciation, and though I have lost the first person who ever loved me, I thankfully have more love available to me, proving once again what an infinite source it is, if nurtured and fed.

These are the less-than-noteworthy late night ramblings of a very confused, unsettled, middle-aged woman whose life has converged to create the perfect storm in a single year.  May she find a little peace soon.

Thursday, August 15, 2019

The Hard Work of Dying is Done

My mom and I eleven years ago.  I have very few photos of her, as she hated having her picture taken.
Two nights ago, I became an orphan.

Even writing that makes me wince, and yet, here I am.  Maybe writing more here will help me move through the fog of complicated emotions that are overwhelming me. 

I received a call two weeks ago that my mom had been admitted to the ER from her nursing home.  A day later I spoke with her doctor, who casually said he thought she might be in the hospital for a couple of days, would be stabilized, and then moved back to the nursing home.  After a short discussion with Dominick, I made the choice to make a quick trip out to California for a couple of days to visit with mom and check in on her.  At 82 years old, her memory was beginning to fail, as was her ability to have real conversations, and after Dominick saw her in June we realized we may not have many more opportunities for me to be with her where she would fully realize who I was, so off I went. 

Arriving in California I picked up my dear friend, Candi, who had been planning on being with us in Colorado for the week, but changed her plans to accompany me while I visited my mom, then we would both head back home afterward.  Walking into mom's hospital room, it was clear something was not right, and a nurse met us and gave us an update.  Within the first five minutes, hospice care was mentioned, and my heart sank.  My mom's condition had changed drastically overnight, and her chronic kidney disease had progressed to the point where dialysis was necessary, and that was something she had made clear she never desired to have, and her nephrologist also stated that in her poor health, it was not recommended and would do little good at this stage.  At that moment, I was so glad I was not alone, and that Candi was with me to help me walk through what was going to be a week and a half of bedside visits and steady decline.  There were no real decisions to be made, there was nothing that could be done, the only action to take was being present.

Mom was always terrified of medical treatments and settings, and so I did my best to reassure her in her confused and panicked stated that she was fine, she was going back to the nursing home to her own bed, and they were just giving her medication to make her feel better.  While in the hospital before hospice becoming involved, mom cried frequently, whether from pain or from fear is not totally clear, but it seemed to reassure her to hear my voice.  Once medication was on board with hospice, she was far more comfortable and relaxed.

Sitting beside her bed at the nursing home, I stared at photos of my family on her wall.  Though she didn't know them well, she was proud of her grandchildren, and I heard from others how she talked all about them.  Daily, we witnessed her features change, as happens when someone is at this stage, and the mom I knew grew ever more distant, eventually looking nothing like herself.  I contemplated her life, and our life together. 

My family of origin was lower middle class, and a pretty broken one in many ways.  The happy family of my childhood changed drastically around my middle school years, and my brother, a mere year and six days younger then me, slipped into drug and eventual alcohol addiction that lasted his entire life, cut short at age 37 as he succumbed to liver failure.  My dad passed away at 58 years old due to a heart condition.  Mom, always an introvert, grew more reclusive in her later years.  We never had any real relationship with any outside relatives, my dad's family was unknown to us in any way, and my mom's brothers were distant and I was around them only a handful of times my entire life.  We were a family who had virtually no community at all, a lack I have felt my entire life.  Mom was a hard woman to get to know, her heart walled off and guarded to the hilt to protect her from some unnamed harm.  She was a good woman, but one who struggled mightily with affection.  Hugs were not offered nor were they comfortable for her, and trying to hold her hand in these last days resulted in her pulling away even while barely responsive.  I respected that, as it was uncomfortable for her, but I ached to offer some sort of tangible physical support.  It was not unfamiliar to me, but in these moments, I wished so much more for her.

Over the years, I became an enigma to my mom, a product of her quite intentional parenting that led me to be someone very different from her...a goal she spoke of often...but also created an end product she didn't quite know what to do with.  When young, she pushed me to be brave, to try new things, to be social, all things she found almost impossible.  She stated often that she wanted me to be the opposite of her, but when she was successful at that, she was faced with a young adult who felt almost foreign.  I am grateful for the ways in which she challenged me to overcome my own introversion, but I was left confused when she then also said multiple times, "I don't know why you would want anyone to know you that well, people just hurt you and you can't trust them."  That she walked through the world with that as her mantra was one of my most painful understandings in life, and her fear of intimate relationship created a distance between her and the world...and those closest to her...that left holes inside all of us that may never quite be filled up.  But I always knew the biggest hole was inside her, and no matter how hard I tried, there was no way I could shovel enough love in to bring it to level ground.

Sometimes the lessons we learn are from seeing something that doesn't work well in the lives of others, and my greatest lesson from my mom was to love with infinite openness, to dive in as deep as possible, and to never, ever withhold affection.  I also discovered how God can heal our open wounds, how inviting God to be present in my life and the life of our family, has literally changed everything.  I have seen first hand how walking in daily gratitude leads from a sense of lack to an inner trust in abundance, something I never learned in my youth.  I learned a great deal from my mom, and I say with all sincerity that I am deeply grateful to have learned it at all, regardless of how the lesson was taught. 

Mom on her 80th Birthday
There were many other lessons she taught me...how to be frugal and wise with money, how to "hear" music differently, how to stand up for myself and that NO ONE was better than I was regardless of their background.  I was taught to be respectful to others, to value education and to develop a love of reading from the time I was four years old.  My mom taught me to stop and think things through before jumping, to project outcomes, and to never feel the need to keep up with the Jones'.  My mom insisted on honesty, and had a work ethic second to none. 

Despite the challenging relationship with my mom, I loved her deeply.  She was the sole person left in this world who shared memories of a family who literally no longer exists, of my earliest years, of my elementary school antics and my middle school angst.  No, the irony does not escape me that, just like each of our five children, I too now have no one I am biologically connected directly to in my life.  Perhaps that is also an important feeling for me to experience, and a way to better understand those I love most.  It hurts.  A lot.  It all hurts.

What hurts the most is the sadness that existed in my family, the loneliness that pervaded and drove each person to a place that was unhealthy in one form or another.  There was a lack of peace and a hollowness for my dad, my brother, and my mom that I will never quite be able to shake or be able to avoid feeling guilty over.  Misplaced guilt, I get that, but sometimes we really are not in control of that, are we?

And then, in the depths of my dark despair, my own husband and children reached out.  Through gentle, tender words beautifully expressed in emails I will cherish forever, each and every one of them hugged me virtually, found words to comfort me, knew exactly what to say to help me begin to heal.  Matthew called me from camp late the night she died, and softly whispered to me as I sobbed, more and more a man with each passing day.  Friends messaged me, reminding me I am not alone in the world and that I matter to them.  Candi was present to keep pulling me toward a center that seemed elusive and kept me from feeling quite as raw as I could have.  And God was there with my mom each and every moment as well, in the ways she needed it, through her caring roommate, through the caretakers who were truly impressive in their work, and maybe...just maybe...through my presence as well.  I pray that is so.

I wish you great peace and love, Mom.  The hard work is over.  I will miss you, and I am who I am because of you.  Give Dad and Ronnie a hug from me.  

Friday, August 02, 2019

Finding My Way Back to Me

Have you ever had a season in life where you were really struggling, and yet couldn't really put into words precisely what the problem was?

The past year and a half or so have been emotionally charged in ways I am not yet certain I fully understand.  Big life events have occurred such as my mom's inability to move through rehab and return home, requiring the emptying and sale of her place.  Attempting to develop and open a businesses from the concept to open doors has been a tough gig and required taking a lot of risks.  Health issues for the entire year with my thyroid completely off kilter have caused hormonally driven lows.  Multiple surgeries with Kenny have been excruciating to walk through side by side with him.  Kids have had some real ups and downs I have elected not to share here but that have been incredibly painful and required lots of my deepest attention.  Life is shifting in new directions all over the place, which doesn't disturb me at all, despite what others might think with kids graduating, etc.  I am not, nor have I ever been, one of those moms who yearn for the younger years or need to cling.  I have been excited about every new stage, and revel in watching them move forward in new directions.

What is the problem then?  What has me so off balance? 

I would describe myself right now as lost.  Not the kind of lost that comes from empty nesting, because we aren't even close.  Not the kind of lost that comes from feeling older and like life is passing me by, because that has yet to feel like an issue for me.  It is not the lost that comes from impending menopause, fraught with hot flashes and anxiety around a changing body, though I am certain that hasn't helped.

Spending the past several months in great introspection, I have come to a couple of conclusions that may or may not be true.  Here are a couple of my thoughts, and I wonder if others in similar circumstances have felt the same...

  • Helping my kids heal, spending years in the role of therapeutic parent, has taken a toll.  You absorb so much pain, and you move on, nary a thought to how doing this episode after episode is chipping away at your soul.  You yearn for wholeness for them, and you might not realize you are losing your own wholeness.  You lose sight of what you are sublimating over time.  You take the "hits" over and over again, thankfully you often see eventual growth and building of emotional "muscle", but at what cost?  I have ignored this, maybe never seen it at all.  But I am feeling it now as a weight that feels almost too heavy to heft over my shoulder.  Maybe it has just all caught up to me, maybe it seems never ending, I don't really know.  But I hurt and emotionally bruise more easily these days, and feel less resilient, less easily able to bounce back after hard days or weeks...or months.
  • Spending countless years in seeking out help, answers, and a future path for our kids has left me little time for working on myself.  And now, I have no sense of who I am.  I lost my way somehow, and need to come back to myself without really knowing what that looks like.

    I am no longer who I was, too much has happened in the past 20 years for me to ever find my way back to who that woman was.  And the version of myself that exists now has just been hanging on for dear life much of the time, trying desperately not to fail those around me, recognizing the true life and death stakes at play.  If I can't return to the old version of me, and have had no time to develop a new version, where does that leave me?  In a kind of limbo that is very hard to describe, and in some ways with as little self-knowledge as a late teen has.  Understandable at 17, not so understandable at almost 53.
  • Unlike many with kids this age, I will always have a life more intertwined than others might with their young adult kids.  Sure, we will graduate them, but at the very least Kenny will always need support in some form, and there is more needed in other directions as well for the unforeseeable future.  We are unlikely to have an empty nest for several more years, if ever.  There is active parenting going on all the time, despite chronological ages.  While many might interpret my current angst to kids graduating, that is not it at all.  How do I live into a new version of "me" as everyone else seems to do at this stage of life, when the old version must remain, at least in part, perhaps forever? 

    And knowing that I need to be fully present much of the time so that others can have a real life, what can I actually live into for myself for this next phase of my life?  I don't have the freedom to just come and go as I please, because others need my presence for a variety of reasons.  In other words, how can I "become" under those circumstances?  I see my friends entering this new season, and it looks so different than mine that it is very hard to relate.
These are not complaints, they are observations and the unvarnished reality.  They are not an indication of depression, but instead an expression of the swirling confusion that is my inner life right now.

I am not unhappy,  I am lost.

What is my true role with Buckaroos?  Where might God help me find meaning and value in my day to day work as homeschooling gradually wanes?  I can't work at a real job, I am still needed far too much and likely never will work at a real job ever again.  Does the perpetual running all day, the guiding, the listening, the encouraging with young adults...does it really matter?  Will I ever find a way to teach again once I am done, something I have found I truly enjoy?  Or will those days be put behind me and become mere fond memories?  Is there more I am being led to do with Blue Collar Homeschool?  Or as we end our homeschool journey in a couple of years will that feel disconnected from me?

I have prayed and prayed patiently and repeatedly for God to show me a way forward, not for my kids, but for me...something I seldom ask.  I need my own personal 2x4, and perhaps I received it recently in the unique, undeniable way that God tends to work in my life.  While it didn't provide concrete answers, it may have offered me a direction of sorts, one I am paying close attention to.

God's 2x4 came in the form of a quote from a book, and a Costco visit.  Trust me, they are connected in an unusual way, so just stick with me for a moment.

For our Blue Collar Homeschool book group (I lead an online discussion) we are reading this book:

Now, this book is a fascinating look at how average is sort of a farce we all buy into, and the comment on the cover was true...it is consistently mind-blowing.  It has nothing to do at all with special needs, and offers a lot of examples and data which some might find mind numbing but I found quite intriguing.  What might this have to do with any Divine 2x4's?  Wait, I am getting to it.  

I was reading and making notations as I was back east a couple of weeks ago, which is a long story and I won't go into it here.  I hadn't quite finished the book, and planned to complete working through it on the flight home.  While there, my best friend Candi and I visited Lancaster, PA and ended up visiting the Costco there briefly.  Throughout my visit, we also had many deep conversations which were about Candi's future, mine, my sense of feeling profoundly lost to myself, and much more.  We both have lives that lend themselves to needing a special place to share, and thankfully we have that in each other, where we can be authentic and hide nothing, and know we are heard and understood.  Such a gift that is!  More's the gift in that there is real time invested in prayer for one another, and this time it felt like an immediate answer was offered.

On the flight back, I open my book back up and begin where I left off.  A few pages in I am back deeply involved in it, and then I read a paragraph that utterly shocked me. I stopped reading, put the book down and just couldn't believe it.  I picked it up, and there it was, in black and white, and I was NOT imagining it.

There on the very page I was reading, was mentioned the Lancaster, Pennsylvania Costco I had visited a mere four days earlier.  As if that were not enough, that paragraph spoke about a young man with special needs hired by that Costco, finding meaning and worth through work in his community.

Throughout the book there was never a specific location mentioned in this way, nor was there ever a special needs person mentioned...until this page that I read...four days after being in that exact location...as I am trying to help start a business for employing others with special needs...a couple of weeks after I had, on a whim, enrolled in an online certification course to become a job coach for those with special needs but not thinking at all that it was perhaps an actual direction or call in my life, but simply thinking practically that if I do this even a little I could learn a bit.

God knows my deepest yearnings to live into a life of purpose, and my great fear that at some point I will look at my life and see I am doing little of any real meaning.  Homeschooling and raising my kids has been an incredible ride, more meaningful than I would have ever thought possible.  I actually hated the idea of homeschooling and had to talk myself into it.  I did so, frankly, because I felt God told me to, and I trusted there was something there for me as well, despite the fact that it was the very last thing I would have ever volunteered to do.  That trust paid off, and I ended up finding I had gifts for teaching I had not anticipated or seen before, I learned a lot about myself, and have thoroughly enjoyed every single moment of it, truly.

In talking my life through with Candi, she has tried to help me begin to view Buckaroos as my next "classroom", rather than feeling like I am peddling backward to begin working as a fast food worker again.  While I was gone, I connected with yet another family in our community whose young adult may need a place to belong, grow and learn.  We now have three possible employees outside our family who are in need of employment where teaching will happen daily, and where support and encouragement will be on great supply.  

It may not be clear exactly how much involvement I have, nor how other pieces of my life are meant to fall into place. I may feel lost for much longer.  But if I am indeed lost, at least I am not alone as I wander.  I have a peace about this part of my life now that I haven't had in a couple of years.  Details are in scant supply, but I have no doubt now that over time I will be let in on the Great Secret of Phase Four of Cindy LaJoy's life.  As long as it feels God guided, I am perfectly fine with letting it all unfold, and now I have that assurance, whether others would feel that way from the experience I had or not.  As Dominick and I talked about my Divine 2x4 we both used the same word...infinitesimal.  The odds of me reading what I read in that window seat were infinitesimal, and I trust it.

As for other things, I realize I need to be kinder to myself, for I have quite regular healing of my soul that needs to occur.  The work I do is far more painful than others would imagine, and it is indeed work...work to keep my heart soft and pliable when it wants to harden like granite.  Work to remain as patient as I can when logic leaves the room and seems like it will never return.  Work to believe when others have lost faith in themselves and God's presence.

A new Cindy is very slowly going to emerge.  She has no clue what she looks like yet, who she really is, or how many unique and uncommon places her life will lead her to.  She may indeed be lost right now, but she is stronger than ever because she has been well-honed by life, she has a great capacity to love and not allow life to cause her to strike out at others because she has seen the impact of that, worked with it and knows how beautiful it can be when walls come down. She also trusts more than ever, sure...doubting once in awhile because she is human...but walking in a faith that is basically steadfast and certain even when it makes absolutely no sense to others, because she has trusted before and every.single.time it has proven to be the wisest course of action, even when it would not have been her first choice.

And maybe she will discover that in the years spent helping others "become", she has found the bread crumbs that will direct her toward her new life, that it was really not all just about the kids, but about her as well.

Hopefully, over time, I will find my way back to me...not the old me who is long gone, but the new me who needs a little encouragement and time to settle in, and has the wisdom to look forward through the windshield and not in the rear view mirror.