What Kind of Race?

I've tried to write, I truly have.  I have typed, deleted, typed again, deleted again.

Nothing has felt right, many things feel wrong...yet all is well.

I promised I would not abandon the blog, and I meant that and still do.  However, there are times when it is necessary to step back, quiet the noise, and reassess your life.  This seems to be one of those times, and I have limited my time on social media as well as blogging.  I can't listen to the cacophony of campaign rhetoric, the diatribes, the rants.  I can't read about other children and families disintegrating, my Facebook feed filled with sharing of anguish and heartache.  I can't watch another video of black men dying, of policemen chasing, of guns blazing.

I can't.

My heart has been in a distant place lately, and I find it difficult to engage with others.  Battling this summer and into early fall against the trauma that remains, the brain damage that is so often denied by others, the dilemma of old injuries thought repaired and yet remains, I am worn out.  My soul feels utterly lost at moments, and I have needed to curl inward just to keep going.  Is it dramatic over here in rural Colorado?  Not outwardly, because we handle it...and we handle it well. But handling it also comes at a cost.  We intentionally keep the drama to a minimum, comforting as we work through PTSD (never thought of it existing in our home until this summer, but oh boy, is it true), reassuring as we work with a brain that literally shut off part of the time these past couple of months, and praying with great gratitude as we know full well it could be so much worse.

Yes, all is well.  We are holding together strong, we are caring deeply for one another, we are moving forward with confidence that we will absolutely make it.  We really have no doubt.  Doing it the healthy way, not ignoring the pain nor pushing it aside, talking it through, being honest and as authentic as we can is hard, hard work.  We are not letting the outside world distract us as we circle the wagons and fortify ourselves.

And oh, the growth!!!  My goodness, healing is beautiful to watch!  Olesya has voiced some long held grief, and is blossoming into a stronger woman than any of us imagined to be inside there...speaking her truth boldly and with passion.  It is a fascinating process to observe, if one can do so while objectively while still in the mix.  Letting go, sharing your story, allowing yourself to be vulnerable and tear down walls brick by brick is work that many refuse to do, and yet our dear, sweet daughter has done so after 6 years of being surrounded by love and commitment.  It finally feels safe.

This isn't a 100 yard dash, it is a marathon to open hearts.

Kenny has had a powerful and certainly most painful summer, so difficult to witness and yet he

needed a witness to his pain.  He has never had his brain malfunction as it has over the past few months, complete shut down, inaccessible language for a time, total loss of information.  Gradually he has returned to us, though we never left his side.  His awareness of his disability is complete now, and the hard work he must endure to craft a life of meaning and purpose has barely begun.  That he does so with such honesty, sincerity, and grace is astounding.  He is learning, slowly, to advocate for himself, to explain to others that his disability is quite real though invisible, and to show how it is not his IQ that is damaged, but that his ability to access and use that IQ is where the malfunction occurs. Patiently, Kenny is slowly "re-reminding" himself of the information that was inaccessible, and is writing on his new blog as an outlet which seems to be revealing a gift for expression that is shining, and might help him envision a future that could be quite different.

This isn't a simple sprint, it is an unending series of hurdles unfolding before him.

Helping others and bearing witness to their lives has allowed Angela to look deeper into herself, to ask hard questions about her life before us.  As she volunteers at the nursing home, becoming a dearly beloved visitor to a handful of special women there, she is hearing story after story of loss and resiliency, of reliance on God, and of lives lived with regret or gratitude.  It is shaping her and her outlook in positive ways, and more memories are gently taken out of the memory box, examined carefully, discussed from different angles, and then placed back in the box...probably to be pulled back at at some point as additional development occurs and new thoughts, doubts, and grief emerges. This summer she found her first true best friend, someone younger and yet as deep and thoughtful as she, someone who will always engage in the work of "becoming" as I am certain Angela will.

Sometimes, it isn't graceful, sometimes you trip and fall, or you have a false start, and you have to fight to come from behind...our kids all feel like they are coming from behind in one way or another.

Disciplined thinking and working at utter honesty about fears has been the theme for Josh, as he has

courageously admitted to moments of deepest terror at losing his family.  The child who once pushed away so violently now lives in dread of his loved ones disappearing, of being alone in the world.  Self-discipline edging close to OCD might be creeping in once again as has in the past as a manifestation of inner turmoil, and we may have new issues to work with as well.  However, this gallant, tenacious, tender son of ours touches most souls with his kindness, and his willingness to be vulnerable without hesitation, thus aiding in the healing of his long ago abandoned heart.

Like the decathlon, there isn't a single event, there are many, each with their own skills to be developed to master the course.

With Matt, it is not the heart or mind that has needed healing, but relief from constant pain has left him worn out, frustrated, and feeling old before his time.  Having been unable to run or play since he was 9 or 10 years old, this was to be the summer of Great Adventures...of learning to rock climb, of mountain biking, of hiking.  Hopes were dashed as his back has continued to have him in ongoing, relentless discomfort and outright pain when he tries to do much of anything.  Unable to stand for more than an hour without regretting it for a couple of days, just when life ought to be opening up to him as he nears high school graduation, it feels as if the world has narrowed considerably.  To say that real depression has been present at times is not an overstatement, and yet, stoic as ever, he soldiers on, diligently working on tasks he can do like school work, preparation for additional and final Civil Air Patrol testing, and assisting with computer work for the store.  We have no idea what to do next as his MRI and xrays revealed nothing wrong, but radiating pain down to his toes makes day to day physical activities seem daunting.

The mental part of the race can often mean the difference between winning and losing, far more so than the physical considerations.

The things holding us together are intangible, but ever-so-strong...our faith, our complete and utter devotion to one another through good times and bad, the knowledge that together we are stronger than we are individual and that we need one another desperately in hard times.  As I have read some of the most beautiful and moving writings lately from each of them, I realize they embody what it means to be a LaJoy, that our years of talking about Team LaJoy, of reinforcing togetherness, of listening and talking, of speaking of character and what really really matters has taken root.

I also know that finishing the race strong after miles and miles of painful pounding is what makes the difference between "winners" and "losers".  Endurance and steadfastness, the realization that it takes years and years to undue damage, and years and years more to build in self-worth.  That last lap is where your doubts creep in the worst, where you battle inwardly because you are so exhausted and just want to stop and rest.  The stamina necessary to cross the finish line in fine form comes from years of working those muscles...in this case, the emotional muscles...and if you haven't done the prior work necessary, this is where it all can fall apart as fast as you can blink an eye.

That is NOT going to happen here.  We have done the work, we continue to be diligent, we will sustain one another as we do the hard, hard work of being vulnerable, of being honest, of healing.

And Love WILL Win, of that I am certain.

My First Post

Here is a link to my first post on our new blog, Uncommon Noggin, which is the shared blog for Kenny and I where we will discuss FASD.  Kenny will probably be posting about twice a week as time and brain function allow :-)  I will be posting there about once a week, and will link here as well, though I will continue to blog here, too about the same old family junk I always write about! Haha!  I know I have yet to get back to true blogging form, but the first couple of weeks of school have been about getting into routine and Mom getting caught up!  Will be writing far more often in the weeks to come...aren't you just SO excited about that? (she asks with her voice dripping with sarcasm, knowing no one is breathlessly anticipating my next blog...hahaha!)

Getting Kenny's blog up was first and foremost on my heart, as he has needed a place to share things right now, and maybe, just maybe, it will help someone else understand their own child a little bit better.

So, for now, here is my blog over there:  http://www.uncommonnoggin.com/home/a-new-kind-of-learning-cindy

Talk to you all more in depth soon!

A New Blog

For awhile now, Kenny and I have pondered creating a blog where we could share our experiences around Fetal Alcohol Spectrum Disorder.  The past few weeks since returning from camp have been some of the hardest Kenny has ever had.  He has suffered from complete cognitive shut downs, a total inability to access information seemingly at random times, and a far worse functioning overall than we have ever seen out of him.

Today was a bad day...a very bad day...a break down in tears-can't explain what is wrong-nothing is working kind of bad day.  Honestly, Kenny is terrified, scared that this current "hiccup" might be permanent, afraid that he won't get back to his normal higher functioning self.  It has also shown him just how dysfunctional his brain really can be at times, and as he is a little older now he is more self aware, and that is equal parts good and bad.  

We are used to these fluctuations, these hills and valleys of functioning, often lasting 3-4 weeks and then he comes back into himself for awhile.  But this is different, and we all know it.  We spent almost an hour today at the school table with him sobbing, unable to understand what we were learning or even saying.  Absolutely nothing was making much sense.  Later, it was like it never happened, though he is not at all his usual sharper self.

Desiring to give Kenny a forum to share what this all feels like, and hoping it may calm his nerves a bit to write about it, share it, maybe receive some encouraging feedback, I decided to move forward immediately with the blog.  We hope it may help others understand the pain and heartache of walking through the world with a broken brain that works beautifully one day and totally stops the next.  Maybe Kenny can even provide insight to parents of FASD children who are younger or less articulate.  

Here is a link to this new blog.  I will be writing occasionally there, and Kenny will as well.  Kenny's posts will be uniquely his voice, unedited by me, and he will address questions, talk about his day to day life, and share his heart as best he can.

Would you consider visiting this new blog, reading his first post, and offering a word of encouragement?  I will share links here regularly to posts there, but hope you will become a regular visitor of his.  If you have a question for him, please email me at CyndiLJ@aol.com.  You can also join our closed Facegroup page for the blog where I will help Kenny address comments made there.  Here is the link to the blog:  Uncommon Noggin   and here is a link to the FB page, where we will post a notice of every blog post:  Facebook Group for Uncommon Noggin

I am going to try and keep posts here about FASD and our challenges to a minimum, and use this space more for general family updates, and not let it devolve into FASD Land.  The way things are going right now, that might very well happen if I am not pro-active.

Thanks so much for considering checking out Kenny's writing!

On Turning Fifty

For all those who think I too often portray our life together as "idyllic" or "too good to be true"...keeping it real here.  NOT a pity party, but being honest.  It's how we roll.  I haven't posted in a long while because, well, I simply couldn't find words.
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Fifty Years Old.

Fifty years of life lived, of wisdom gained, of tears shed, of hardships endured, of love offered.

A couple of weeks ago I turned fifty, a day like any other, and yet not.

The lead up to my fiftieth had honestly been some of the hardest days and weeks I have been through in a very long time.  No major event caused the heaviness of heart I felt (and still do to some degree, if I am honest), and it had absolutely nothing to do with my advancing age.

We have simply had the hardest, most painful, grief filled, achingly sad summer on record with our beloved ones.  While there was still a fair share of laughter and fun, time after time hours were spent in conversation as pain poured out, as doubts were expressed, as old lives were revisited, as futures were contemplated, and uncertainty hovered.  Sobs escaped over and over, bodies barely able to contain the survivor's guilt and concern for classmates aging out, the wondering if birth parents ever wanted them, the deep rooted fears that one would wake up and their entire family would have disappeared...and that happens every single day in life.  There was the despair over a life that will never, ever be "normal" and what that means moving forward as well as what will be missed.  There was also physical pain that feels unending for a very dispirited Matt as his back has flared up again and he is severely limited in his ability to move.  We have no answers, which is frustrating and demoralizing for a 17 year old young man who has had most activity limited since he was 9 years old.

My own heart absorbed more than I thought was even possible, a sponge whose ability to take on more was now completely incapacitated.  That uncertainty still hovers, and I had no answers to offer, only mere words and arms to hold and comfort as best I could.  It wasn't enough, it never is.

All of it was good, despite the sorrow. Truly it was.  The processing at a new developmental stage is a must, and is a sign of healthy emotional work being done, but few would ever understand how darned hard it is to get to the joy.  Most would look at our kids' ages and think the worst is over, I don't blame them, I did, too.

Oh, how it isn't...

Then there is the logic that simply won't kick in at times, explanations that take 30 minutes or more to understand because things are forgotten, misunderstood, misinterpreted.  Circular discussions caused by defective processing that is, honestly, almost mind numbingly hard to deal with day in and day out.  Guessing meanings, trying to interpret and discern what is really trying to be said...our three who came home older and whose brains were damaged by alcohol exposure, neglect, trauma and institutionalization are sometimes puzzles that take an enormous amount of brain work on my part to make sense of.

The simple truth is that there was so much gripping my heart that I barely gave fifty a thought.  For the first time in my life, I felt like I was sinking into a deep depression, born of mental exhaustion and compassion overload.  We have been at this 16 years now, to varying degrees, and I have never felt this overwhelmed by the unknown and the known.  Thank God it is not due to behavioral issues, anger, defiance, or anything of the sort.  It is simply due to the hard work of healing, and of working with special needs kids.

One night about three weeks ago, I wrote a couple of friends and explained I was just not handling things well, I asked for prayers, I wanted it known I wasn't ignoring anyone but was really in a bad place and feeling like I couldn't pull myself out. It helped a little to be open and share a few details, to feel like my load was being carried a tiny bit by others who care.  I've never considered myself to ever be depressed in the past, but this sure felt like it.

The next day though, God stepped in, and helped lift my heart just when I needed it most.  An elaborate plan had been hatched to throw me an early surprise 50th birthday party, no one realizing the timing couldn't have been better.  Loved ones and dear friends gathered to wish me well, and wrap me up in a cloak of love more desperately needed than any of them knew.  I had absolutely no idea anything had been planned, and thought I was picking up the kids at a friend's house where I had been told they had been weeding.

There, in the very heart of my community, I was able to rest for just a little while.  I was able to smile, to laugh, to feel like my own tank was being filled up just a little.  That God knows exactly what we need and when we need it continually astounds me.  I was showered with cards from friends near and far gathered via Facebook, I was serenaded, I was hugged...a lot.  It does nothing to change the circumstances, but it did so much to change my feelings of defeat.  How can one feel alone when joined heart and hands with so many others who truly care?

And sometimes, just knowing we are not alone, is enough.  Sometimes, even if others can't possibly understand your life's battles, all we need is to be held in God's arms attached to the bodies of very real human beings in order to heave that sigh of relief and know that...for the moment...all burdens can be set aside.

A Birthday Sunshine just for me!

Uh...yea..."glamour" shot...(Not!)

How I love this woman, our wonderful, supportive Miss Mary who has been by our side virtually from the start.

 Two of my best buddies, Candi and Mary, who plotted and planned along with another dear friend, Kim, and Dominick.  And somehow, the kids never let out a peep!  For Kenny and Olesya, that was quite an accomplishment!  However, Kenny did sheepishly 'fess up afterward and admitted he totally forgot about it.  We laughed and he pointed out how his memory issues can be a benefit sometimes :-)

Hearing the impromptu choir sing "You are my Sunshine" with lyrics altered just for me.

So, how do I feel about turning 50? 

Grateful to be alive this long.  Wiser at moments while at other times still scratching my head trying to figure this whole "life" thing out.  Deeply loved by the single most amazing family on earth, something never guaranteed anyone.  Hopeful that the Spirit is slowly hoisting me out of the abyss.  Indebted to friends who continue to stand by my side despite the fact that often I am not the most attentive or present friend in their life.  

What have I learned about life in 50 years?

Though it took me years and years to learn it, it finally sunk in that love really is the only answer, that responding angrily, violently, or with a mean spirit does nothing but perpetuate negativity.

I have learned that I need community far more than I ever envisioned in my younger years when I had virtually none.

I have learned that I can carry far more than I thought.

I have learned that I mess up every.single.day and am not deserving of all that I have in my life, but humbly appreciate it all.

I have learned that one can rise above one's beginnings, one can change generational patterns.

I have learned to say "yes" to life and to God's call...and to ignore the naysayers who would try to stop you, all because they would never say "yes" to what you would.

I have learned that I like tackling hard things, even if only mildly successful.

I have learned that bearing my heart and willingly being vulnerable results in deeper, richer relationships than I ever would have imagined having in my life.

I have learned that "average" is nothing to fear, and ought to be celebrated far more.

I have learned that "perfect" is highly over-rated.

I have learned to listen...to watch...to pay attention and be awake in the world.

I have learned to be present.

I have learned that my life doesn't have to resemble anyone else's.

I have learned that I can look a stranger in the eye, be it child or adult, regardless of color or creed, and see their humanity and our connectedness...and I can authentically love them with all my heart.

I am continuing to learn how to be a better version of me, an ongoing process that will take the remainder of my life, however long that might be.  

Back to real life, exquisite in its complexity and beauty.  Wouldn't change it for anything.  Each hardship endured has forged me, each tear shed has cleansed me, each sorrow has cultivated compassion in me.

Fifty years old.

All is well.

One or Two Years and a Couple of Changes

This has been a unique summer for Matthew, one in which he has had some wonderful opportunities as he gets ready to enter his senior year.  Though we know he still has one year to go, Matt really is a man in every sense of the word these days, and a delightful one at that.

Dropping him off at the airport this morning, his bag of Fritos (Ok, that sort of negates that "man" thing! Haha!) and carry-on in hand, I think I was far more excited for this latest adventure than he was!

Recently, Matt applied for and was accepted to be on the Rocky Mountain Region Cadet Advisory Council for Civil Air Patrol.  This is a Cadet run three person advisory board for the five state Rocky Mountain Region, and is quite an honor.  Matt had to submit an essay with several ideas he hoped to see implemented in the Region, and he was thrilled when he was invited to be a part of the Council.  What he wasn't aware of at the time was that he would then be offered an all expenses paid trip to the Civil Air Patrol National Convention in Nashville, TN this weekend!

And what did he do when he learned of his new position?  Nothing.  Nothing at all. 

There was no boasting, no need to point out the honor to others, just an inner sense of accomplishment and only explained what was going on in his Squadron when it became necessary.  In a house full of many extroverts, Matt is our most introverted.  He can be hard to read, which can sometimes make you wonder what excites him, what motives him.  What he is, is humble...something that you rarely find in another human being to this degree.  He is intrinsically self-motivated and has little need for outward recognition, though I am sure at moments he appreciates it like everyone else. He remains cool, calm and collected regardless of the situation.

Upon completing the reading of David Brook's "The Road to Character" at the end of last school year, a book I am now very slowly working through with all the other kids, Matt remarked that he learned a lot about  what true character looked like and how best to develop it, and I noticed that this hugely impacted his spiritual life.  Somehow, the message came through in reading about a wide variety of famous folk who all struggled against their lesser selves, that developing self-awareness and willingly subjugating yourself to God (in whatever form that was understood) was a common denominator.  He identifies quite firmly with his Christian faith, and told me on the drive home from his last year at camp this summer that he realizes as an adult he will always need to attend to his spiritual self as he has the capacity to be colder and more distant than some might be, that God calls him to be a more intentionally loving person and he likes the reminder that practicing his faith brings to work on himself regularly, to bring his better self to the forefront.

He is easing his way gently into adulthood, and it is so sweet to watch.  He has plans laid out for this coming year, ambitious ones.  I am sure that in his methodical, quiet way he will accomplish all he sets out to do.  

I am reminded of a particular line from a Jackson Browne song, Fountain of Sorrow.  Though it relates to something else in the song, it reminds me of where all our kids are:

I'm just one or two years, and a couple of changes behind you...

Our other three 17 and 18 year olds are on a different trajectory.  They came home much older, had so much to catch up on, so much to work through, and so much more to challenge them.  Yet they are all slowly working their way toward adulthood as well, perhaps not at the pace others think they ought, but nevertheless, they will find their way in their own time.  Matt may be leading the way, despite technically being our middle child, but we all see the growth and maturity steadily happening in Olesya, Kenny and Angela.  A couple of years from now, we will see ever more blossoming, wings unfolding, and wind catching beneath them leading them each into worlds unknown.  What we can best offer them all now is the gift of time...time for those changes to occur, time to reach backwards toward childhood as often as is necessary, and time to discover who they are.  There is no rush, they'll be fine, and they will do just as interesting and valuable things as Matthew is doing in his chosen arenas. 

As their mom, I am reminded by Matt's nature to remain calm, cool, and collected in the face of comments and nudges that they are somehow "behind".  It can be hard to bite my tongue, to gently change the direction of conversations for those who are insensitive to the ways in which their seemingly benign inquiries actually touch nerves that can be, in any given moment, quite raw.   Graciousness is something I need to work on.  I am always stunned how crass some people can be in assuming they understand the needs of our kids.  If you have not parented a child adopted at an older age from an institution, trust me, you truly are pretty clueless about their needs, their pain and grief, and their suffering.  I know this because I was once that clueless.  The difference is I have never assumed I had the right or the knowledge to be able to offer my critique and advice to someone who was in the trenches and had more experience than I.

Yup...and perhaps me remembering that others are in the same place as I once was will lead to more graciousness.

I'm just one or two years, and a couple of changes behind you.

And that is perfectly OK.  

Fake Family

The world is all a twitter over the following news story about Simone Biles, Olympic gold medal winner (Yea!!) and the comments made by NBC broadcaster, Al Trautwig, which many consider demeaning and dismissive of her adoptive parents, who are her biological grandfather and his wife. For those who are unaware of the controversy taking the adoption world by storm, you can quickly read about it here:

http://www.huffingtonpost.com/carrie-goldman/dont-let-anyone-tell-you-adoptive-parents-arent-parents_b_11404534.html?

I have pondered this one for the past 24 hours, trying to ascertain what my truest thoughts are about having an adoptive family so blatantly denied the validity of their relationship.  I have come to one conclusion...

Eh...it just isn't worth it.

Knowing I will be in the minority on this one, that my hackles aren't up and my ire is not aroused to the degree that many think it ought to be might need a further explanation.

You see, almost every single day of our lives as the LaJoy Family, someone somewhere questions our legitimacy.  I have lost count of how many times we have been assumed to be a foreign exchange group out in public.  Any time we are walking through a store and one of our sons puts his arm around my shoulder and leans in to say something, we get stared at quizzically.  Our daughters' accents mark them as foreigners and it is never, ever  thought that I am their mother.  When they try ti explain that I am, indeed, their mom often there will be stares and an utter lack of understanding as it takes a few moments to "click".  When samples are handed out, I have had to be forceful more than once that yes, indeed, I am their mom and am entitled to give permission for them to partake of the goods being hawked.

Is it right?  No.  Do I like it? No.  Is it what is? Yes.

Frankly, I have too many other more pressing concerns to get hot and bothered about.

That doesn't negate the fact that education starts with me, or that other families find this more disconcerting than we do, or that even from time to time we all get a little tired of explaining and being stared at.

Walking through the world as a family that is so obviously different than the norm, you grow a thicker skin.  The world will think what it will think, and there really is little we can do about it.  The fact that the imagination of the average American is so narrow that it can't possibly fathom that people of different races might really belong to one another is not something likely to ever change easily.  Over time, as more diversity is reflected in film, television, and advertising there will be a growing awareness of mixed race families.  Meanwhile, I'll do my little part by kindly correcting, gently pointing out the errors.  I have never found that being militant about anything ever brings about much other than anger.

What matters far, far more to me is that our family views itself as legitimate, that we are strong enough to be public and not hide, nor feel shame or embarrassment because we don't "match".  Long ago, I realized that this was forever, that for the remainder of our lives we were walking around "branded" as different, and I had two choices.  We could walk around with a chip on our shoulders, taking offense every time it happened and waiting to pounce to correct someone, or we could recognize the innocence behind most of it, and that there was no judgment behind the mistaken categorization, but merely a lack of awareness or exposure to a variety of differently matched families.  We could laugh and keep the moment light, or we could elect to darken it ourselves with a layer of assumed prejudice or delegitimization.

We can't walk through life that way, we are the only ones that hurts.

Sure, I agree with the argument that we are "real" family, and I understand the need to change our collective understanding and language around this.  I also see how this was an extreme situation and there was an obvious lack of sensitivity in the case of Simone Biles and her adoptive parents.  I am not even at all against the numerous editorials and Facebook posts condemning Mr. Trautwig for his crass denial of this family's legitimacy.

But regardless of what anyone else ever says or does, there is not a single thing they can do to refute the Real Deal...the love the exists between us creates a bond as strong as any biological connection could ever be.  I have wiped their tears, I have encouraged them through struggles, I have giggled at their silliness.

I am called Mom by five of the most wonderful young people on earth, and the fact that I feel they are the most wonderful young people on earth and burst with pride at every little accomplishment, or fight tears with every discouraging or painful moment means I have earned that title.  Whether there were court documents to support that claim or not matters very little.  I am Mom, they are sons and daughters, we are family.  Let others say or think what they may, it won't change a thing.  We aren't a "Fake Family", there is no such thing!

Asian eyes smile at me, heavily accented English greets me each morning, dark skinned arms wrap me in warm hugs.

Let the wars go on, and we'll do our small part along the way to help change hearts and minds.  Time will change things, and in the meantime, we'll keep on loving one another openly and joyfully.

And in the long run, that really is the only thing that changes anything.

Not-So-Lazy-Days of Summer

These "lazy days" of summer haven't been so lazy around here!  Take a look at a DIY project Olesya and Josh were helping Dominick with:

Water and snow had damaged the bottom of our siding in our patio area, so it was time for our Handy Men and Women to go to work!

Olesya is so much like Dominick in many ways.  She truly enjoys more physical tasks, and loves things like detailing cars and working with her hands. She is also far more domestic than her mom (I totally admit that one!) and is a happy explorer in the kitchen, trying new recipes.

With Dysclaculia, a math disability that makes math concepts far harder for Olesya, using basic math in real life situations helps her gain a greater understanding of certain math skills.  Measuring and cutting helps with fractions, something that still stymies her.

Josh came long and provided labor as well, and learned how to use a caulking gun in the process.  Metal flashing was also installed beneath the siding.

Having such willing and eager helpers makes life so much easier!  While Matt and I were in Salt Lake City the next couple of days, and Dominick was at work. Kenny, Angela, Joshua and Olesya all repainted both sides of the house where the siding had been replaced.  A few years down the road, it is rewarding to watch as the kids put into practice some of the practical skills we have taught them on various projects, like the rental rehab we all worked on about 4 years ago.

Matthew and I were in Salt Lake City at Shriner's Hospital to have his back checked.  He is having considerable pain, with numbness and tingling as well shooting down his legs all the way to his feet.  Though he was in pretty good shape a few months after his spinal fusion, something has caused a shift and he is in constant pain right now, and his life is quite limited.  He is trying to be as active as he can be, but that is proving very difficult.  Sleeping is not restful, sitting is hard, bike riding can be done but brings on pain fairly quickly.  Xrays revealed little, so an MRI is being ordered and we will hope that answers will follow.

It isn't slowing him down in other ways though, here he is working on his 3D printer in his recently created work space in the garage.  He is making good use of his Creative Space, and spends many hours out there doing things I don't understand with parts that I have no idea what they do...hahaha!

We have been crafting Matt's senior year in high school, and he has asked to take both Pre-Calculus and Trigonometry as he is seeing the need for it in the work he is doing on his own.  We also found an awesome resource for him which will teach him all he needs for a wide variety of IT certifications in all kinds of content areas for tech...when I asked him what he wanted to focus on for career learning post high school, he quickly responded, "Everything...every single thing I can find to learn.  I have no idea what I want to do yet, but I find it all fascinating and none of it boring, so can I learn it all?"  Yea, that didn't help so much, what does "all" mean?  Ummm...according to Matt, it includes, but was pointedly not limited to, "Networking, Cloud Storage, Mobile software, repair, Windows certifications, Cisco certifications, Amazon Web Services, and...anything else I can think of.  Oh yea, and drones, and GPS technology."  He will start with a fundamentals course for COMP TIA certification, and work his way up the list, I guess.  That ought to keep him busy for awhile :-)  

Aside from driving hither and yon all summer long, I have been compiling resources for our coming school year.  We are going back to a bit more eclectic approach for science, as the textbook was a big fat flop for us for retention this past year.  Sooooo...back to the drawing board, and I decided to use videos from the BBC series' Life, Planet Earth, and Human Earth along with tests I found online in various places.  In addition from Teachers Pay Teachers I found a wonderful series of science articles based on current topics along with thought provoking questions.  We will see how this works.  We have a tremendous amount of work to cover next year, and a lot of fun and interesting things to learn!

Angela has been working diligently on all kinds of Russian translation with Olesya, as well as tending her lovely flower garden, so I have beauty in vases often right now:

We have had my friend Candi's two kids visiting us throughout the summer, with Christi coming first, then Billy.  It was such fun having them with us, they were a joy and contributed so thoughtfully to conversations we had, helped at the store, and just hung out and relaxed.  We did a little mall hopping and sight seeing with each of them, though mostly we just lived life together:

Rural girls don't get mall opportunities often!

Moms being teased by Mall Hopping Teens

Love my sweet, sweet daughters so much...and yes, you can tell I am not good at selfies and keeping my arm out of the shot!

Boys and boulders.  Nothing more needed.

This is the first summer since beginning homeschooling that we have taken completely "off" from school, and we all really needed it.  We won't even start our studies until the day after Labor Day, which is when we traditionally started when I was a kid.  It feels like we are playing hookie!  I love it, and we have a whole month left.  Full speed ahead once we start back up though, so we are all taking advantage of it while we can!

What is Real?

Growing older, it becomes more obvious that my life is exactly how I perceive it to be.  If I view it as troubling and difficult, then that is what it is.  If I view it as exciting and interesting, then that is what it is.  If I view it as filled with abundance and blessings, than that is what it is.

Every single one of the above noted descriptions could be used to describe my life, and our life together as a family.

So which one is "real"?  If we are talking about the same family with the same circumstances and the same challenges...which description is the most honest?

The one which best fits the desires of my heart.  

You see, it matters not one whit what others think, what matters most is how you view your circumstances, and that perspective often gives birth to the very life you seek.  

The other night I had a lovely phone conversation with a long time adoption Facebook friend who I have never had the pleasure of meeting.  There was a sharing of information, some reassurances that were hopefully helpful, and a little laughter over similarly experienced quirks that are only found in families like ours.  As the conversation drew to a close, there was a sweet moment where I was offered some beautiful compliments about our family and a word or two about how our blog makes it all look so perfect.  I laughed at that, recognizing how often I have felt the same thing as I have read blogs written about other families through the years.  Between Pinterest worthy photos of gatherings and Facebook posts about accomplishments and awards, it is hard to ever get a sense how authentically a family is being portrayed.  For some, it is a desire to have only the best and brightest image reflected to the world.  For others, it is something entirely different, and perhaps even less believable.

I think we fall in that latter category.  

Sharing as much as I do on the blog, and having as many people read it who know us in "real life" it would be impossible to fake it.  It really would.  We'd be called out in a minute flat.  I have revealed more intimate moments our family has experienced here than most ever would, and with our children's blessing I might add.  Do I reveal all?  Of course not, that would be impossible and intrusive into our life, but I have shared some of the very hardest nights of darkness, the painful past, and the hard won battles.  I hide little, and share openly the summaries so that others can perhaps learn from our mistakes, and catch a glimpse into a family life that is lived just a little differently.

We are far from perfect, but you know what?  You can be very, very intentional about how you live your life together, about how you move through the world, and about what you value.  We actually do view our life together as the single greatest blessing any of us has ever received, and we cherish it...each and every one of us.  We actually do cry openly with one another, revealing our vulnerabilities so that we are not alone in our fear.  We actually do laugh at those things that are difficult and embarrassing so that we don't take ourselves too seriously.  We actually do offer as much love as we possibly can to those around us, knowing that doing small things with great love makes a difference in the world.  We actually do respect one another, sibling to sibling, parent to child (Yes, not child to parent...respect starts with modeling it, and our kids deserve the same respect we desire.).  

Dealing with so many hardships could sour our family life, it could alter our outlook on the world, it could color others and ourselves in great depressing swaths of darkest purples and muddy browns.  We don't let it happen, we have simply decided to let God lead, to let Light in, to see abundance rather than lack.  We have permanent disabilities, we have financial challenges, we have pain, we have fuller than full plates, we have great grief, and we have pasts that are hard to acknowledge.

There is no attempt to sugar coat it, in fact most of you long time readers could easily recite how much we have been through and how hard it is.  However, there is one difference, and one difference only...we choose how we view it all.  And our family life is ALL of the things described in the first paragraph!  It is abundant and difficult and exciting and sometimes troubling, a plethora of adjectives could be aptly applied and all would be true.  But it is the descriptors I elect to cling to that define us and end up influencing behaviors.  

We are not Pollyanna-ish, but we are positive, we are motivated, and we are very hopefully Light Bringers into dark places even if only in little ways.  We are also realistic and honest about limitations, we allow the real to show through and we don't run from it or pretend the outlook is better than it really is.  

Allowing vulnerability to show is, for some, the single hardest thing to do.  Man, does it require a level of courage that is hard to summon!  But that very vulnerability, that ability to show others your emotional boo boos is the single greatest tool for healing and for healthy interactions.  

So, lest I leave you thinking mistakenly that the LaJoy family lives in Shangri-La, let me assure you that we have the same "discussions" about how there could possibly be 45 empty glasses sitting around not put in the dishwasher, and we have frustrating moments when kids are not getting it with school work and I have tried every which way to explain some concept and want to pull my already thinning hair out.  We have musty smelling towels because someone left them in the washer too long, and we have disagreements over what to do on a sunny afternoon.  We have messes and procrastination and tired cranky people who live here, too.

But we don't yell at one another, we don't disrespect one another, and we don't stop loving one another.  Ever.  And we all view our lives together as beautiful, precious and finite. I guess you could say we have the life that fits the desires of our hearts, in all its chaos and clutter.  It's not that we don't see the bitter hard pills on the Table of Life, we just elect not to swallow them.  After all, we all really do have a choice.

No Shame

As young people mature, there are those days that mark the next step taken towards adulthood.  There is the acquisition of  a driver's license, dating, first part-time job, first trip alone without your parents, and more.  Each event is noted with glee (and perhaps a little trepidation!) by parents and youth alike, as they celebrate the gradual increase in responsibility and maturity.

For a young person with FASD, those moments are often out of reach, or are unable to be attained until much further down the road.  Developmental age doesn't match chronological age, and some things will remain forever out of reach, much to the sorrow of everyone.  Some, like Kenny, can straddle two worlds.  Others don't fare as well.  Kenny is able to bounce between his older and younger with great facility, but there is a reason he is unable to sustain friendships with anyone his own age...he can't remain in that "older" place for too long without needing to have extended periods of true younger aged play.  As a camp counselor, this works marvelously well for him, as an almost 18 year old man, it makes life an uncomfortable fit.

However, there are milestones, but we hesitate to mention them or lift them up because there is a sense of loss, or even shame around it all.  There is the diagnosis finally obtained, oftentimes after years of what seems like fruitless chasing before finally it is confirmed officially.  This may not seem like much, but for an invisible disability like FASD, it can affirm for the parent and child alike that, no, they are not crazy or imagining it, there really and truly is something wrong, regardless of whether a brain functions well for a week here or there and then proceeds to completely malfunction the next. We have celebrated with Kenny when he finally went an entire week making certain his wallet was in his back pocket each morning!  We have celebrated when he came out dressed appropriately for the day's weather, and not wearing a polar fleece when it was 100 degrees outside (Seriously, more times than I can tell you!).  We have celebrated when he finally, FINALLY learned to read...at 13 years old.  Each is an important milestone, regardless of what age it was reached or how insignificant it is for some people...or even if that milestone ends up lost when the behavior backslides a month later.  

A young person might perform fabulously in a well structured environment with a timeline laid out and a familiar setting, like Kenny did as a camp counselor, and yet be unable to find their way to the grocery store in a two main street town...as Kenny can't.  When cues are able to be taken in by those around them doing things that can be copied, FASD kids can succeed, but when left alone, they can't initiate changes in schedule, or facilitate even the most basic of needs such as making certain their personal hygiene is handled every single morning.  FASD is characterized by regular malfunctions...and then seemingly smooth sailing...then malfunctions over and over again,  The very lack of consistency is enough to drive you crazy!  What was easy yesterday, is completely impossible today.

The patterning takes years, and sometimes, the fact that we have been so successful with Kenny because of his literally having 24/7 therapeutic parenting works against us.  Depending upon the setting, others just don't encounter the Kenny we have at home.  They don't see the confusion when we walk through an airport and I try to guide him to find his way, and it is impossible because there is too much "data" to take in.  They don't see the 17 year old who cries because one day he can do something, and the next for some inexplicable reason, that skill is lost and has to be re-taught.  They don't have to watch him in a parking lot as he is blissfully unaware of cars coming behind him because his brain can't make out the direction it is coming from...or that it is even there.  They don't see the young man whose voice cracks as he speaks of the frustration of living in a brain like his, unable to recall basic information some days, or able to follow a simple recipe on the back of the Kraft Macaroni and Cheese box.  Give him a lunchroom and food that appears, give him a tightly held schedule, give him a single task and he performs like a rock star.  However, try to have him live autonomously as most kids his age are doing, and he is lost, unable to perceive when it is time to go to bed or rise for the morning, unable to initiate any activities of his own volition without them being suggested, unable to even keep himself clean or dressed appropriately without gentle reminders.  His intellect belies it all, but his arriving at the retreat for counselor training without sleeping bag, pillow, or towel after having gone to camp for 10 years is our daily norm.

Thursday we had another milestone to celebrate, one that would might force some parents to grimly accept the inevitable, and the young adult to hang his head in shame.  We had an appointment with attorneys to discuss legal care for Kenny in the future.  Turning 18 in November, Kenny will likely need help with his finances and medical care all his life, along with numerous other activities we all take for granted.  We began working on Medical and Financial Powers of Attorney for Kenny, and he was present to ask any questions he had, and to be part of the entire process.  It just so happens that one of the attorneys in the meeting has an adult daughter adopted from China, and there was a tangible understanding of our situation because of that.  God arranged that one, we didn't...we had no idea prior to entering the room that Kenny's needs might be so well understood.  

Waiting for our appointment.

On the drive over to the office prior to picking up Dominick, Kenny and I talked about how important this day was for him.  "This is just as important for you as other things are for your brothers and sisters.  You need this to move safely into your adult life, and we are going to make sure you have all the support you need to be all you can be in the world." I shared with him. 

"While I wish I didn't need it, " Kenny responded, "I am so glad it will be taken care of and that I won't have to figure this stuff out all alone.  But I bet this is a sad day for you, mom, and dad, too.  No one signs up to have kids like me."

"Sad?  NO!  While I wish things were different, I am happy you are so high functioning that you can take part in this in a meaningful way.  And I am also refusing to see you moving into your adult life as sad, but instead as a gift and a surprise.  Who knows what you will do?  Who knows what you will accomplish?  You have so much going for you, Kenny, so much to work with versus many kids who will never get half as far as you have!  And, we aren't even done with high school yet, I am sure that with the right help, you will attain your dreams of being in ministry somehow, even if in a less traditional way, and that you will do something with your life that really matters.  This paperwork is important, but I am not going to view it is 'settling' or to feel bad about it, in fact I am celebrating that we have come so far and have figured out what we need to have in place to not only protect you, but to help you blossom.  You have a long way to go, so much more to learn, so much to discover, and having the right protection in place ensures that you are safe and can focus on what is important rather than struggle with what is impossible." and I sat there quietly afterward.

"I am so lucky to have you and Dad.  Most parents would be so disappointed, but you always give me hope.  You are also very realistic with me, which helps more than you might know.  Hiding from what doesn't work never helps.  Thanks, mom."

No Shame.  No Hiding.  The truth really does set you free, and we are celebrating that Kenny is who he is; a wonderful. bright, amazing survivor of more than most of us could handle!  This family doesn't hide from the truth, we embrace it, we work with it, we accept it, and we look for ways to celebrate wherever we can.

FASD is nothing to be ashamed of, neither is living with your family as an adult or having the wisdom to ask for help when you need it.  The shame would be in hiding from it.

Kenny and I have work to do, research to explore, and hopefully a new blog to create where we will share what we are learning, and where he and I will both write about what this all feels like.  It is our way of working with it, of helping others perhaps understand what it is like to live in and with a brain like Kenny's.  There are also ministry avenues to pursue, high school to finish, and a slowly emerging adult to enjoy.  

What there isn't time for is shame.

A Love Not Limited

I went to bed long ago, and here I am up again.  It seems there is something that needs to be written, something that won't allow me to rest until it is captured in digital form and displayed, and maybe then sleep will come.  There are moments like this when I have no earthly clue why a thought grabs hold of me and shakes me until I DO SOMETHING.  Sometimes that something is to write a blog, sometimes it is to call someone, sometimes it is to read something.  Over time, I have come to trust this instinct despite the fact that I may never understand, and because of the fact that once acted upon I will then finally have peace.

Tonight, the Spirit swooped in and sat awhile on my shoulder, reassuring in Its presence and awe inspiring in Its power.

Kenny is in a confounding and terribly heart breaking place, a place I wouldn't wish on any teen.  I have held him in my arms as he has cried out in the greatest pain imaginable that his disability combined with his sexuality will mean a life of loneliness and dependence.  The words "I will be a burden" have been spoken far too many times by him, and the yearning to know that love will be, at the very list, possible for him is an ache that is hard to even write about here.

How does one parent through this sort of grief and uncertainty?  How can one offer comfort and assurances that he will be the one to defy the odds that are stacked so high against him and not sound like an overly optimistic mom who is unable to grasp the full weight that he is carrying?

I have yet to figure it out, and daily I question what in the heck I am doing here, and how can I ever be what he needs me to be.

FASD and LGBT are an alphabet soup that collides in his mind and equals UNWORTHY.

Living where we live, there are no PFLAG groups and almost no one who understands the limitations of FASD.  Kenny has never met anyone like himself, other than Angela and Olesya who are far more mildly effected (we are certain at this point), who lives with the crazy combination of learning disabilities that make normal life nearly impossible.  He has never met anyone like himself who will never safely drive a car, or be able to live on their own.

Just yesterday evening Dominick and I discussed the importance of my reaching out for Kenny to find "his people", and that we need to somehow find a way to fund his attending conferences on FASD with me so that he can hear stories of success and how best to maneuver through a world that, as of yet, has very little research available and few resources for adults with FASD.  As important as it is for Matt to have his future supported and nurtured with attendance at flight camps, it is equally important for Kenny to have his future supported and nurtured with attendance at progressive Christian conferences.  Just like Matt, he feels a calling in his life that is just as real, just as valid, and just as necessary to fuel.  The harder part is that for Kenny, the only way to pursue some of this is to travel out of our area, and he also can't do it alone as Matt could this year, necessitating a lot more money being spent.  Somehow, we will figure it out.   He needs desperately to feel less alone in his diagnosis, and he needs to feel as validated around his future as any other kid, too.

Participating in a few Facebook groups for FASD as a lurker, I have gradually become aware of just how blessed we are.  You see, it is no exaggeration at all to say that adults as effected as Kenny absolutely can not make it on their own without considerable supports in place.  Reading the stories of young adults, parents, and others whose lives are impacted by FASD is a real eye opener...continual job loss, repeated encounters with the law, explosive emotional outbursts caused by frustration and lack of emotional regulation, homelessness, and more fill my screen and have me whispering prayers of gratitude that Kenny is emotionally more stable than most with FASD.

It is in this place that my heart has dwelled this past year, and it is a hard, hard place for the parents of an FASD adolescent.  There is little that is positive, there is little in terms of services available or able to be qualified for, and there is little guidance about adulthood for your child.

Pleading for help and hope, my prayers have been ever more fervent.  How can I help Kenny see that love might come his way?  Concretely, I prayed for someone...anyone...who might be able to be held up as a "this is possible" sort of model as an encouragement for Kenny.

Oh, how the Spirit listens!  Oh, how the Spirit provides in the most astounding ways!

Now, I know that some of my more theologically conservative friends probably have been dismayed when reading about our open acceptance of Kenny's sexuality.  They may have trouble seeing that our family attending a church open to the LGBT community long before there was even a thought of Kenny being in our midst was God preparing us for Kenny's eventual needs.  Those whose religious teachings point toward the "sinful nature" of homosexuality may have a difficult time imagining the Spirit serving to be just as present for us in our life as it is in theirs.  I have no issue whatsoever with those whom I love who have a different perspective on any of this, however it is not a belief I have ever held.

I am, however, deeply grateful to be in relationship with a God whose love is not limited, whose provision is not narrowly defined to being only for those with "right thinking", whose presence is just as potent, just as powerful, and just as encompassing as it is for any other Christ follower.  Humanity likes to divide into categories and split hairs, God just wants our hearts and our longing for presence...and God shows up regardless of how humans like to say God shouldn't or won't based upon our infinitesimal ability to comprehend the vastness of God's love for us all.

God showed up miraculously tonight in the form of a man named Tim, the loving husband of a man

with FASD.  Reaching out based on a single post I read on Facebook, I asked Tim privately if he would mind visiting a bit, and it led to a rich exchange online that I couldn't have possibly arranged had I ordered it through prayer on a menu.  In the person of one kind man, there was hope for love from a non-FASD effected gay partner, an understanding of adoption and race issues, an admission of how hard it can sometimes be to be the caretaker, and the unexpected and beautiful fellowship of someone who is a person of faith and worships within our own denomination in a much larger city.

God knew what Kenny needed.  What surprised me was God knew what I also needed even though I had no clue I was in need at the moment, and provided for me as well through this conversation.  At times I have left myself out of the equation, not realizing that I too have suffered because of FASD, I too have struggled because of FASD, and I too grieve a future that won't be the same because of FASD. I too have no one to talk to who understands the complexity of intertwined issues that make for a remarkably intelligent person before me, and yet an equally remarkably disabled person before me that no one who isn't knowledgeable about FASD can understand.  I am the interpreter of the world for him, and of him to the world, a role that is taxing in ways I can't explain...and yet Kenny is so dear and precious I am eager to jump into that role for him.

Isolation is a soul killer.  The Spirit brings us together to nurture and care for one another in striking ways, and in amazement I shake my head yet again, and wonder how anyone can ever think God would find it preferable for someone to be "out" and others "in".  Our little pea sized brains just can't fathom that kind of love.  The world would be infinitely better if we could.