Walking a Fine Line...Together

Writing from our apartment in Chicago, where Kenny is resting comfortably post-op, there has been so much to reflect upon.

It has been quite a week, and he is doing very well.  Shriner's provided the best possible care, and swelling and possible bruising were minimal.  He spent one night in the ICU, then one night in a ward, then went "home" with Candi and I to an apartment here to recover for a few days before we board a plane to head home.  We are so blessed to have help with Candi here, as Kenny truly can not be left alone with where his brain function is right now, and it is enormously helpful to have a second set of eyes and ears through something this intense with someone like Kenny.

Kenny is truly one of the most pure-hearted individuals I have ever encountered, our entire family knows this to be true as do those who know him "in real life", but it was never more apparent than it has been this past few days.  This knowledge fills me with equal parts pride and dread, as that pure heart can bring so much joy to others, but can also be so easily manipulated.  Despite fading in and out of the affects of serious narcotics, he has been so expressive of gratitude to his nurses, so polite, so concerned about causing others any inconvenience.  I can't really explain what it feels like to live with an individual who is this beautiful inside and out.

As I wrote a friend a couple of days ago, this experience with Kenny as a legal adult has offered twofold pain. Watching him go through the temporary misery of a surgery of this sort was hard enough, but there was a deeper and more permanent ache I experienced as I witnessed first hand the sort of lower level functioning that is inherent for Kenny in stressful situations and how that impacts him living as a newly minted legal adult.

Fetal Alcohol Spectrum Disorder is debilitating, yet invisible.  The brain malfunctions in "predictably unpredictable" ways, never responding the same way twice in any given situation.  Throughout his hospitalization, both before and after anesthesia, Kenny was asked to state his full name and birth date, and every single time he struggled to access that information in his own brain, responding almost as if questioning if he was correct.  Stress makes that accessing even more challenging than it normally is.  

There is a fine line to walk as the mother of an adult child with special needs as you deal with others who can't see your child's disability.  Do you step in and answer for him?  Do you allow him to fumble his way through and then correct information?  Do you offer an explanation of why this seemingly bright, capable young man can't follow the simplest of instructions but seems to understand?

I spent a great deal of time trying to assist others and help them see that Kenny thinks he is catching all their information, but when asked to immediately repeat it, he had literally comprehended nothing.  When it comes to medical care instructions, this can be life threatening.  I have thought often this week that having a child with special needs can force an introvert like myself to step out of their comfort zone.  

There is an awkwardness and a learning curve to these sorts of interactions that both Kenny and I are training ourselves how to maneuver around.  He is sensitive to my role and how interjecting myself into conversations or situations can lead others to view me as a meddling, overbearing mother, and I am sensitive to his need to do as much as possible on his own and yet be the support he desperately needs regardless of whether others perceive that need or not.  Several times throughout his hospital stay Kenny spoke up and said, "My mom is my medical advocate." and though that wasn't heard as we had hoped it would be, it was a start on this next leg of the journey he and I are taking together.

Asking others in the room to be quiet and then getting right in Kenny's face so he can focus and take in information from just one voice, "reading" his expressions so that I can tell if he has really absorbed instructions, needs more clarification or to hear something it all over again, and affirming his need in times of stress to revert to a much younger version of himself are all tasks that are part of being the mom of an FASD young adult.  

What this past week has shown me though, is how terribly vulnerable our son is, how truly incapable he is of being able to take care of his own needs, and how he will need someone to walk alongside him the rest of his life.  The problem is that this seems almost paradoxical when one meets Kenny, because he is highly intelligent and that is exactly how he comes across.  There is no "catch all" term one can use that brings instant recognition in others of the variety of ways in which he is disabled...and yet isn't.  Words like "Alzheimer's" or "Autism" are easily recognizable by others and certain behaviors and deficits are immediately understood, but FASD does not have that sort of general recognition, making it harder to explain to others.

I have an 18 year old son who is best entertained with episodes of Sponge Bob and who laughs so heartily at them on an airplane that I have to remind him that he has a seatmate.  He is delightfully charming in his childlike wonder, and deeply thoughtful in his ultimate best "sage mode".  I have an 18 year old son who asks for mashed potatoes and calls them marshmallows because he can't access the right word, who has to be instructed to take a shower and then when in the bathroom turns to me, looks at me quizzically and asks, "Now what did I come in here for?".  I have an 18 year old son who is an adult on paper, yet is a 10 year old one moment, and shares 40 year old wisdom the next.  

And you know what?  I wouldn't trade him for anything in the world.  I am growing in ways I never imagined I would as I parent Kenny, and he is growing in ways we never thought possible with the numerous challenges he has.  Daily our family is in the presence of innocence and are reminded of what goodness really looks like.  Kenny calls all of us to be better versions of ourselves, and to be tuned in to others around us who need to be embraced and loved for exactly who they are.

And we are helping him to become the very best version of himself that he can be.

Sounds like exactly the way God intends for all of us to be with one another.

Steps to Wholeness

It is the night before...the night before Kenny and I leave for Chicago for yet another hard week ahead with another surgery to face.  How I hate this!  Over and over again, our kids have to deal with so much, and though I know it has formed each of them into the beautiful, strong human beings they are, no mom wants to see their children suffer.

Right now, though there is no pain, Angela is yet again dealing with dental issues as a prior root canal is infected and she needs to have it treated for a month with antibiotics then have the root canal redone.  This poor kid has had 3 root canals and crowns, along with I've-stopped-counting cavities.  Poor dental hygiene and malnutrition to a real number on children's teeth.  She never complains, and I don't know too many kids who graciously thank their parents for root canals and crowns while also apologizing for the cost.

Kenny's surgery this week is a doozy, with a surgical palate expansion that will basically detach and split his upper jaw, and then just for fun they are throwing in the extraction of nine teeth, five of which are wisdom teeth, and four toward the front.  The swelling and bruising are expected to be considerable, and yet he is SO happy he doesn't have to face having the extractions at the dental office.  His early years still cause a great amount of anxiety around dental work, and this would be enough to cause anxiety in anyone!  The expansion will be step one toward getting his top and bottom jaws to align, it will also lead to a temporary large gap between his two front teeth until braces close that gap again.  Right now he has a very large, newly installed metal palate expander in the roof of his mouth, making his speech pretty difficult to understand.

Where the red lines are is where Kenny's jaw will be cut.

I am usually pretty steady during emergencies or experiences such as this, but for some reason, this time I am less so and I am not sure why.  He will be fine, and he will be getting the best care possible.  Sometimes I just wish we were on the other side of this, and we still have one more major jaw surgery after this one.  Kenny has had such a challenging life, and has a better attitude than anyone I have ever met.  Constantly he astounds me with how accepting he is of hard truths, of how grateful he is for the life he has, and how diligent he is under really terrible circumstances.  He has spent the past 4 days or so working on school work every single hour until late at night, trying to get work done before he goes so he doesn't have to face as much when he returns.  School is harder for him than for many kids, it takes a lot more effort, he makes a lot more mistakes, and he has to redo work often...and he does so without complaint.  Honestly, I could never continue to have the attitude he has if I walked in his shoes.

The rest of the family will manage without us, each of the kids is taking a day to make dinner, and tons of school work has been assigned.  They'll be fine, but I will really miss them all.  Thankfully, my best friend Candi is flying out to be with us, as Kenny will need constant care and with his FASD and being on drugs I don't dare leave him alone!!  I am incredibly grateful to have that kind of support, as being so far from home often makes these surgeries even harder on mom.  Funny how it doesn't matter whether they are 8 or 18, they are still our babies, just in larger packages.

So, Thursday morning at 6:00 AM we take yet another step toward helping Kenny move toward wholeness.  Every day for each one of our kids, we continue to strive to heal old wounds, both physical and emotional.  Some steps are easier to take, others are painful and very, very hard.  May this step be a little less difficult than we anticipate, and may Kenny heal quickly.

Seven Years of Valentine's

Seven Years.

Oh, how much has changed in seven years!

I knew at this very moment pictured above, upon seeing you two together in person for the first time, that you were our daughters.  I will never, ever forget the force of the emotions that washed over me, the yearning I had to be your mother in a circumstance which appeared hopeless, both financially and legally.  

Thankfully, a true Angel of God stepped in and helped make it possible for you to join our family.  Waiting for years, patiently, your family received photos of you and we saw you mature right before our eyes.  It felt as if time was slipping away from all of us as we dealt with delay after delay.  Looking back, it is easy to understand all the reasons why we all waited as long as we did, and none of us would have it any other way, but it was torture going through it.

Your brothers were as anxious as we were, as pinks suddenly became a part of our life during the long wait.

Three boys needing two girls to join them!

Modeling Hello Kitty and all kinds of pink attire!

We had a girl sized whole in our family's heart, and we all couldn't wait to finally have you home.

Our arrival without warning after five long years of waiting was a total shock, understandably so, but honesty and vulnerability helped us all break through the walls that were quite sturdy, and we found ourselves becoming a family, ever so gently, ever so tenderly.

In the orphanage, final days in uniform.

Our first Christmas as the final version of Team LaJoy, still in Kazakhstan for another month and a half!

Waiting for Dad to return to Kazakhstan while we remained there.

First personal PJ's, finally in mom's arms.

The laughter a sign of things to come!

Fun times visiting while in Kazakhstan.

In seven years you have grown from pre-teens to young women.  We have worked through issues around trauma, neglect, guilt, and much more.  We have ALL learned how to love more fully, forgive more easily, and walk more faithfully.

There is no way to ever really put into words what the past seven years has been like.  There was such peace in my heart to finally have you home, to feel as if our family was finally complete and no one was missing...for a part of my heart was always missing until you were under our roof, safe and loved.

The relationship I have with each of you is better than I ever could have imagined it to be.  I didn't need "daughters", what I needed was each of you and only you.  

Olesya, your constant kindness and gentle spirit extends its love to every person in our family.  With little notes at surprising moments, we each feel cared for and nurtured by you.  

Angela, you possess a sense of awareness few have, and you share your feelings so openly.  You have a soul that fights for the underdog in any situation, and you "see" people others don't, making them feel special and noticed.

The two of you are a formidable pair, forged by your past into strong, capable woman and shaped by your family so the rough edges were smoothed and the safety you felt cultivated your deep, sensitive sides and allowed them to shine.

I have learned so much from you both, and my time as your mother, far too brief in my own opinion, has brought me nothing but absolute joy.  I have discovered a softer side of myself, and it blossoms when I am with you.  I feel freer to explore my more feminine side, something that was missing as the mother of all boys (adored though they may be!).  I have also never had such amazing cheerleaders!!

I have had my heart feel like it would burst as I have watched the five of you interact so beautifully, so lovingly with one another, reflecting a joy of relationship I wish all siblings were lucky enough to experience.  You help one another succeed, you cover for each other's disabilities with such thoughtfulness, and you are there so firmly alongside your parents as well.  No one would ever be able to tell we haven't been together since the first moment of your lives!

Valentine's Day is about love, and not just romantic love but a celebration of love in all it's beautiful forms.  On this day, the anniversary of your homecoming, we celebrate you, two of the greatest loves of our lives.  Olesya and Angela, never will a mom love her children as deeply, cherish them as tenderly, or love them as passionately as I love you.  Few have yearned for them as long as I yearned for you two, knowing without a doubt you were ours.

May you each always know love for the remainder of your lives.  May you walk in the knowledge that you were desperately desired and eagerly prayed for, and joyfully embraced in the loving arms of your entire family and you will never, ever be alone again as long as there is a breath in any of the five of us.

Keep that joy!

Live playfully!

Love fully!

You are loved...

Oh, so loved!

Here we were, knowing we were missing you two, needing you to round us out.

And here we were...finally a complete family.

You are all so beautiful to me...my Valentines.

And my very first Valentine ;-)

Thank you for choosing to bring your love to our family.  You have changed us for the better in so many ways.

Much love,

Mom

Sweetness in the Midst

Sipping from the warm mug Joshua brought me from his secret stash of "Dove Hot Chocolate Mix" that was a Christmas gift and in limited supply, I feel more filled up than I have been in a very long time.  This gray, overcast day could lead one toward a sense of somber dispiritedness, but here in this sacred place, our home, I feel so very much warmth, so much shared by everyone who inhabits this place.

I am here at my desk, reading and writing, remarkable in the fact that I have had the entire day to relax and had no agenda.  This happens so seldom that it brings me up short, as if I don't quite know what to do with myself when I don't have a huge list of "to do's" awaiting me.

This peace I feel today has been a long time coming.  As I drifted in and out of a bleak and difficult year this past year, I sensed I was losing a part of myself...my joy.  Heavy topics hovered overhead as new realizations were grasped about Kenny's future and decreasing functioning, as the girls and Josh all struggled mightily in the face of emotional turmoil that was unsteadying for them, and as our concerns around our church served to press inward on my soul.  It was, in many ways, a time for grieving, and that needed to be respected and allowed the space and time it needed so that I could learn and grow from it.  

The life of the LaJoy Family is one filled with taking leaps of faith, both big and small, that others might not take for themselves.  Moving to Colorado with no jobs, jumping into 4 businesses in a period of twenty years, adopting five kids from orphanages overseas, homeschooling, and much more all seem normal to us despite being choices others would shy away from.  The single thread through it all has been that each individual choice felt Spirit led, we were really only saying "yes".  

Saying "yes" as often as possible has brought us a life of deep satisfaction and contentment.  Speaking with a prospective adoptive mom this week on the phone and sharing a bit of our story as it relates to her own journey, I realized that if I had looked at my life through a lens twenty years ago and saw the challenges ahead, I would have laughed and said , "No way!".  Listing some of the disabilities we have among our five, it was still hard not to have my heart swell with incredible love, which I hope she heard in my voice, as I described so much that initially would have scared me to death early on, and yet are now part of our family's story of Overcoming.  We have much more ahead, I know, as I am not naive, but also because I hope we all always have the courage to say "yes", to do things differently, to be as counter cultural as we feel called to be, for it is the sweet spot where risk and reward collide.

These five young people are our very heart.  Dominick and I are truly the luckiest parents on the planet, and we say it often.  As the girls and Josh helped me make meatloaf in the kitchen this afternoon, Matt was busying himself working on training to do some of our business accounting work.  Kenny is at the liquor store with Dominick today, stocking and doing his very best, too.  We work side by side, all of us, in such harmony!!  We learn together, side by side, with so much laughter and depth!! We play together, side by side, with such openness and joy!!

We are living a life so rich in love that I never would have dared dream of it in my younger years. 

I am grateful for every trial this family has walked through, for it has molded us and shaped us into a different sort of model.  Others might not like that model if they walked by it, but we sure do.

As my fingers walk across these keys, struggling to find just the right words to express the deep, deep sense of gratitude I am experiencing today, I know this kind of sweetness is impossible to replicate with mere words.  It is only possible to find in the hushed conversation I had with Matt this morning as I sat on the edge of his bed rubbing his sore back.

It is only possible to find in the heartfelt conversation I had with Angela on the couch one evening this week as we analyzed our hearts and delved into emotional territory only a deeply connected mom and daughter can walk through.  

This gratitude is only possible when Joshua,  now towering over me I(and tippy toeing at times to increase that height!), slings his arm over my shoulders and rests his head burrowed in my neck. 

It is possible only in the sideways glance Dominick offers me during an unusual situation that brings to mind another moment thirty years old and we wordlessly gauge how we will respond.  

Replicating this gratitude in language can't come close to seeing the delight in Kenny's eyes as he returns from his first Masonic Lodge meeting filled with a newfound hope and budding sense of belonging he so desperately needs.  

Explaining this soul deep gratitude is only possible when reading Olesya's message to me about wanting to pay for part of a cooking class we just enrolled her in because "I want to be proud of this class, and feel like I worked for it, therefore I really do want to pitch in. It will give me a sense of ownership, in a way." 

Oh, how much sweetness there is in the midst of the chaos of the world!  How much sweetness there is in the midst of maturing and growing and tentatively spreading wings ever so gradually!  Thank you, God, for helping us all work together to create a home that is truly a Sanctuary for each of us, where we feel safe, accepted nurtured and seen.

Sanctuary People

Driving through the arid, wide open spaces between Montrose and Grand Junction, Western Colorado can appear to be pretty desolate.  The landscape stretches out before you with nary a tree in sight, offering little in the form of shelter for wildlife.  Your eyes eventually begin to thirst for anything verdant, anything green.  The ground is layered as you look off into the distance, with plateaus forming table tops that have no place settings to welcome anyone.

Just as you think this might be what the next several hours are going to look like, you round the curved highway that snakes next to a rocky outcropping and drops you into Delta, Colorado.  Suddenly, irrigation has transformed the high mountain desert into an oasis.  Lifting your head to see beyond the little valley, there before you is the most magnificent and majestic snow capped mountain range beckoning you spanning your entire windshield. It is far off in the distance, but it slakes your soul's thirst like nothing else. 

After twenty years of residing here, I still feel filled up when my adopted hometown comes within view.  Being born and raised in Southern California, where wide open spaces are few and far between and everywhere you look there are wall to wall cars, billboards screaming at you, and smog hovering over it all, I had no idea how something inside me yearned for space, for vistas, for connection, for home.

From the very first moments we drove into town, Montrose has been my "Holy Place".  It saved me, it wrapped itself around me with its warm and welcoming people, its small town country charm, and its authenticity.  There is little "Keeping up with the Jones' " around here where most everyone is simply doing their best to raise their families, keep their heads financially above water, and live life on their terms.

It was on this very drive last week when I was paid the highest compliment I have ever received as a mom.  

The minivan was full, and chatter ensued as always.  Conversation turned toward the ways in which we find peace, and I spoke of that feeling I had the very first time I crossed the desert to arrive in Montrose twenty years ago, how it felt that I had come home for the first time, and that God made it clear there was something awaiting me in this new land.  

Kenny, sitting beside me in the co-pilot seat, got quiet, and then began to speak quietly.  

"I know what that feels like, Mom.  Sometimes, when my brain is so scrambled and I can't figure anything out at all, you are my place of peace.  I think people can be a sanctuary for others, and I see you being that for a lot of people, but especially for me."

"Oh, really, Kenny?  What a sweet thing for you to say! I am glad you feel that way.  I can see why you might feel that way, I am not sure others do, though," I responded.

Then, from the back seat I also hear from Matthew a surprising statement, "Kenny's right, you are my sanctuary, too, Mom."

Fighting back the tears, I didn't even know what to say.  What does one say to something like that?  

You parent through so much, and we have all been through a heck of a lot together.  You discipline, you nurture, you beg and plead about cleaning up dirty rooms, you step on the ten thousandth Lego, you watch them grow, you talk late into the night, you listen to fears and dreams, you play taxi driver 5, 6 or 7 times a day.  You just do your Mom Thing, being there teaching, loving, nagging, growing right alongside them.  The world doesn't see you nor hold you in high esteem, you are "just" a homeschooling mom, you have no career to claim, no worldly success to point to, and some days you wonder if your existence matters much at all.

Then your teenage sons proclaim without hesitation that you are their sanctuary.

Suddenly, you view the past 17 years through a different lens.  It all matters, every single moment spent in role modeling, in deep conversation, in nudging, in watching silently waiting for just the right moment to bring something up, it all matters.  You create a home as best you can, fill it with love and hope, faith and light, all with the heartfelt desire that your kids will fondly recall that their childhood home was a sanctuary from the world, a place to hide from the storms of life, a place that embraces them and felt safe.

We don't often think of people as sanctuaries, and yet we have all had them.  For the blessed ones, it was their parents, for those less fortunate, it was those who came along and filled in the holes, stepping in to offer sacred places for our hearts to be held.

You know something?  You are a sanctuary for someone, too.  We all are.  Now, maybe your kids would never use language like that, but it doesn't mean you aren't really that place of refuge for them.  Maybe you've never had children, but you've regularly offered yourself to friends and they seek you out to lay their burdens down for just a little while.

Right now, as talk of "Sanctuary Cities" and "Sanctuary Campuses" fills our Facebook feeds and news web sites, I can't help but wonder if what we really need is not a "safe place", but for each of us to step up and be Sanctuary People for others.  I can see the value in creating safe locations for people in a time of such great turmoil, but where it really starts is individually with you and with me.  What the world needs this very moment is to move beyond symbolic gestures; we need every single one of us to hold one another tenderly, to care for one another as brothers and sisters, and to move beyond the "otherizing", name calling, and finger pointing.

Yes, what we need is to be Sanctuary People for those whose paths we cross...not just those we know and already care about, but the stranger in our midst, the ones we might not find as likable, the ones who disagree with us.  Man, is that hard!

We also need to be especially kind with those closest with us, our loved ones and friends we hold dear.  As the world screams at us from frantic headlines about the antics of politicians on left and right, as fears escalate, we need to be gentle with our language, we need to be careful where and how we spill it out, we need to be respectful and thoughtful in our interactions, realizing that though we may need a sanctuary, the person across from one may be in desperate need as well.  We need to respond to anger with calm, we need to stop expecting everyone to view the world the way we do, or to be in the emotional place we are.  We don't need to be the ones to intensify emotions, that is being done enough through our media.

I will likely never forget that afternoon, the one when my sons equated me with being their sacred place.  If that is all I have been able to accomplish in this world, to provide a deep sense of security and to offer myself as a haven for our cherished children, than I doubt there is anything else I could ever accomplish that would measure up to that.