Thriving with Thrive!! Or...The Gift That Kept Us Going

The story of Buckaroos Slices and Scoops would not be complete without the inclusion of this very special episode, and it is part of the saga we kept quiet until this post.  It was the biggest surprise in this particular journey, and when times were tough, it affirmed for us that we must press on, that God had a plan for this whether we fully understood it or not at the time.

In March of this year, we attended the International Pizza Expo in Las Vegas.  We knew we wanted to serve pizza and ice cream, but we knew little else.  It is hard not to laugh now because we have come so far, but with kids like ours and their challenges, we knew it was imperative for the concept to move beyond the theoretical into the practical, and there is nothing better than the hands on approach for those with Fetal Alcohol Spectrum Disorder, so off we went!  We had a list of things we knew we needed to begin researching...pizza ingredients, equipment, various business models, and a Point of Sale Cash Register System/Online Ordering System.

Spending two days wandering the exhibitor floor, the size of which was the equivalent of eight football fields, it was hard not to feel overwhelmed.  The sights, sounds and smells caused all of us to experience a fair amount of sensory overload!  Then there were the sales reps from many companies who were well trained in how to gently push interested parties, and how to create a sense of urgency which would push buyers to make choices they might regret later, once away from the energetic environment.

Aisle by aisle we traipsed through the arena, sampling, practicing saying "No, thank you" and gathering information for products we might ultimately be interested in.  Later on the first day, the kids took a break to attend educational seminars, and my best friend, Candi, and I began to approach some of the POS system vendors.  We knew this was going to be the biggest purchase outside of our pizza oven, and we also realized it was likely to be the most complicated item to consider.  The restaurant concept was intended to be handled as much by our three very young adults as possible, but with their disabilities, we knew they needed a computer-based system that would be as simple to operate as possible, because none of the kids are very adept at technology.  We also knew that if we were planning on living into the mission of our business and hiring others who also had cognitive disabilities or developmental delay, the selection of just the right POS system would make all the difference between success and failure.

As we approached a couple of vendors and tentatively explored their systems, we instantly felt more like we had walked onto a used car lot.  Slick salesmen with memorized pitches stalked us the moment we stepped into their booth, and they talked over us the entire time, never really listening to what our needs were as they were so intent on showing us all the bells and whistles their systems had.  After a few moments at each, we escaped as politely and quickly as we could, and were discouraged as we realized this might end up being the most difficult purchase we would have to make, and maybe NOTHING was going to work well for us.

Looking at our map, we headed toward yet another booth with Point of Sale Systems, steeling ourselves for what we assumed would be a repeat of the other unpleasant experiences.  The company's system was named Thrive POS from Granbury Solutions, and I groaned inwardly as their salesman zeroed in on us.  He introduced himself to us as Eddie LeBon, and within moments it was clear this would be a more comfortable encounter.  Eddie asked questions...and he was attentive to our responses.  Where others talked and "sold", he listened and offered suggestions.  When we explained what we were hoping to accomplish with Buckaroos Slices and Scoops, and that we were in need of a POS system that could be simplified as much as possible, he didn't disregard us and try to show us all the advanced properties of the system.  Instead, Eddie explained how it could be customized in many ways to offer a "cleaner" screen and that the data input was efficient and intuitive.  We grabbed his business card and a brochure, and with our guard now down a bit we told him we would return with the kids a little later to have them take a look.

About an hour later we arrived back at the Thrive POS booth, and we waited for Eddie to finish with another customer.  Can I tell you he won me over from the moment I saw the great respect with which Eddie treated the kids?  He took them seriously, he walked them through what the system had to offer slowly, step by step, and spoke directly to them as the business owners.  He had been prepped ahead of time about the kids' disabilities, and he spoke to their concerns about the complications of any POS system, gave them a brief hands-on tour of the program, and turned them loose to test it out.  Most importantly, he didn't talk down to them, and they felt empowered as they looked at something so costly but necessary.

Returning to the show the next day, we all hit every single other POS system company to compare their products to Thrive's system.  Let's just say the experience was less than desirable, and the dismissive attitudes with which the kids were treated was in stark contrast to how Eddie had dealt with them.  It was obvious they were being viewed as a waste of time, as sales people were eager to push them aside to deal with what they felt were "real " prospects.  Visiting the Thrive booth once again, we found Eddie and had decided to put a sizeable down payment on their system.  It was a perfect fit!  Kenny, who is our most tech challenged, had been able to walk right up to the screen and punch in an order with virtually no instruction, so we knew by that alone that we had a winning system with Thrive.  This was a BIG purchase, thousands of dollars being committed to, and we all felt the weight of the decision as we left Vegas, but we also were certain it was exactly what we needed and more user friendly than all the other systems we had tried.  We experienced no buyers remorse, but we knew we were now truly beginning to accrue real debt.

One morning about a week later, as we were gathered around the kitchen table working on our homeschool work, (which was really our business and marketing plans) my cell phone rang.  It was someone from Thrive asking if I had a few minutes to chat.  Assuming they needed more detailed information to get started on our system, I excused myself from the table and went into my office to talk.  I was then informed that I was on a conference call with several others in the room, which confused me as that felt a bit like overkill if they needed some of our basic beginning information, but hey, ok, I am fine with that! Haha!

What happened next made me weak in the knees.  They were calling to tell us that Eddie had shared our story with them, and they had all been touched by what we were hoping to accomplish.  They said they wanted to support us in our mission, and had made the astounding decision to give us the entire system, the terminals and printers we needed, the service we needed for installation, the online ordering, and a year's follow-up support at no cost.

For FREE.  Totally FREE.  As in, "We are going to return your down payment as well."

Then I was told, "We believe in you, and we think what you are doing is important."

I am never speechless; ask Dominick and the kids.  I know I must have sounded like a complete fool as I sat there dumbfounded, then stumbled to find the words to say how grateful we were and what an enormous surprise this was.  I was almost in tears, this was SO huge for us!

And you know what?  It wasn't only the cash value, though that was certainly a huge unexpected blessing.  What mattered most was that someone was taking us seriously, that this wasn't just a pipe dream of ours, and others wanted to invest in us despite the fact they didn't have a clue who we were.  In that single moment, we moved from "what if?' to "Oh, we are SO going to make this happen!" in a far more tangible way.

With them still on the phone, I went out to the kitchen to share with the kids what Thrive was going to do for us, and their hooting and hollering had to be heard all the way to Texas (where Thrive is based) even without the phone!!  Hanging up, I turned to the kids and said, "Whatever doubts we have had, God wants something to happen here and this is our big 2 x 4 so we need to really pay attention.  With this gift comes a ton of responsibility for us to live into our mission."  They all agreed, and were as stunned as I was in the moment.  We were all silent for a few minutes, shaking our heads, digesting what had just happened.

Then, we dug in and got to work.

As the months rolled by, as contractor delay upon contractor delay was experienced, as the inevitable road blocks rose up that happen with any major project, when we began to wonder if we were somehow "reading the signal" wrong and doubting whether we were really supposed to do this, all one of us had to do was bring up Thrive's generosity, and we all felt affirmed and were able to shake off the concerns.  And man, did we have them over and over again!  It was literally all we had to hang on to at times when things went awry, and credit card debt was mounting.

A couple months later, Thrive sent us their new Pizza Head shirts, and we wore them proudly (Josh, in particular, wore his Pizza Head shirt a LOT!) as we continued the challenging work of creating our special little place.

 This past week, Thrive sent their installer, Mike, to Montrose at no cost to us to install the system, and to spend three days training all of us.  We were super excited when the boxes arrived a few days before.

Mike...wow, was he patient!  How he put up with our family for three days, I have no idea! Haha!  Our menu had been programmed in prior to his arrival, and Matt and I had done some initial "back end" training with their distance trainer, Becca, who was equally patient and her experience in years past working with people who have disabilities surely helped as she customized our menu and embedded images, color coded items, etc. to make it as user friendly as possible.  Here is what a couple of our screens look like:

It was precisely what we needed, but dared not hope for!  Simple, clean, functional...and we were off and running with the training!

Sometimes, you just need someone to believe in you.  Boy, does our family understand that one!  Thrive gave us a gift that kept us going.  When everything felt hard, when we felt like this was maybe too much to take on, Thrive's belief in us made all the difference.

And now, as we have just completed the hiring process, we are passing that belief on to others.  As of yesterday, our staff will include SIXTEEN employees, almost all part-time, ten of whom have special challenges (including our three.)  As others have believed in us, so too shall we believe in others.  We will be working with a DYNAMITE crew of young people who all have a heart for service, are kind, respectful, and most importantly, need a chance to...well...thrive.  It has been a delight, and frankly a profoundly moving experience, to sit with people whose needs are rarely understood, who are seldom seen beyond their label, and who are moved to tears (and so are their moms!) when they hear they are hired.

"Can I take pictures of where I am going to work to show my friends?"
"All I want to do is make my mom and dad proud of me."
"I get a NAME TAG?" and then excited clapping follows :-)
Then there were the broad grins that slowly spread as each of them realized they were being hired.  All because someone believes in them, and doesn't expect them to be anything other than exactly who they are.  They will be understood, they will not be yelled at, they will not be made to feel stupid.

And maybe, if we do this well, we can offer the same gift that keeps them going, too.

Thank you, Thrive, for believing in us.  We promise you we will do whatever it takes to build on your faith in this mission of ours in this tiny little space. 

The Place Where All Belong

Angela crafted three beautiful tables for us, doing her first big wood burning project!
Yes, I am trying to convince her there is another business in this for her :-)

The delighted grin of a young man with Down's Syndrome when asked if he'd like to learn to make pizza.  The catch in a mom's voice as she calls to inquire if we really, really plan to hire people like her child. The eager yet anxious nervousness of a young person with autism who honestly explains why they have been fired from a job before, and how they are trying so hard to learn from their experience and just need a chance to practice things that are hard for them.

The past few days of interviews for prospective employees have been equal parts heart breaking and mission affirming.  There simply are not words for the emotions I have had wash over me as one by one, people sit across this table from me.  I knew there might be a need, but that need is generic until you have precious faces to put with it.  Something changed for me this week, and it was actually unexpected.  I mean, after all, I AM that mom with those kids!  I KNOW the heartache, the fears, the obstacles.  I have walked in shoes that are similar, waded through waters that are waist high wondering if we were ever going to get to dry land...and hope.  Heck, I am still there this moment!  So how in the world did this impact me on such a visceral level when it was all so familiar??

Each person's unique story captured my heart.  Each person's courage humbled me.  Each person's desires to have the same kinds of experiences and success that everyone else gets to have reminded me that regardless of how different we may be from others, we all truly have the same yearnings in life.  We are far more similar than we are different, though some might never be able to really recognize that.  Watching the sweet gentleness with which Olesya and Angie treated each and every person that walked through the door, I saw light beaming in to Buckaroos.

Oh, this is going to be so, so much more than a pizza and ice cream shop.

As we near completion of all the construction tasks and neaten it all up, the pride the kids feel in their store is oozing out of them.  They have built a beautiful little place, handling so much of the physical work with some direction, but having put in sweat equity of the type few would be willing to do.  As they work to pay off the debt over the course of the next few years, they will be adding in even more.

The other night, the first pizza rolled out of the conveyor, a moment of great celebration for us all.  Josh wasn't in town for the event, but everyone else was there and admiring the great work of art:

There it is...the "fruit" of a year's work.  Olesya and I were alone in the restaurant for a few minutes and draping my arm around her, we faced "her" kitchen, the dream of her life.

"Can you believe we did it?  We are almost there?  Think about what this looked like a year ago!" I said:

"And NOW look at it!" I added, and this was what we saw:

Sure there are a few little things left to do, decor to put up, etc. but the transformation of the slimmest thread of an idea a mere one year ago to THIS has been nothing short of astounding.  And they did every ounce of it, they painted, they laid flooring, they tore down cinder block walls, they built new walls, and so much more that isn't photo worthy.

Kenny has spent the past several days creating order guides for every single item we need to make our recipes, and he has updated the painstaking work he and our very-much-missed-adopted-intern/cousin/dear friend Billy did this summer by further editing our food cost analysis documentation.  Yes, down to the penny, every.single.menu item has been broken down into the exact cost to create it, and he and Billy priced checked against multiple vendors, and did yet one more review this week.  Seven pages of cost analysis, and every vendor online has a set up wish list or online order guide for every single item, all done by Kenny.

He has also been our "shelving putter togetherer" :-) Hahaha!

Angie has taken a ridiculous sketch I tried to make (Oh man, glad I never tried to teach art!) and turned it into an Instagram worthy mural on the outside of our building!  We were unable, by law, to depict anything that related to our business...no images of pizza, no slogans, etc. so we came up with this idea, and she spent 2 entire days perfecting it.  We love it and hope others will enjoy snapping pics as they point to where the have visited in our beautiful Western Slope area.

Olesya has been in seventh heaven as she has been staying at the store until midnight several nights this past week, cleaning, organizing, and basically keeping us all in good shape there after messes are made as new equipment, countertops, etc. have been installed.  Tomorrow is her happiest day to come, I bet, as our first really large food order arrives and she can sort and stash until her heart is content! Haha!  She has done so many new things, and is practicing on the cash register with Dominick at the liquor store so she can make change easily, which has been a challenge in the past.

She also handled addressing and sorting all our "soft opening" invitations, as well as our Grand Opening invitations.

Poor Dominick has spent 7 months dealing with contractors, city planners, health inspectors, and more.  He willingly gave up more and more backroom space at the liquor store when we wheedled and whined over needing "just a little bit more".  He has been a rock star through all of this.

Matt and Josh have helped in all kinds of ways, from being a TShirt model:

 To doing all kinds of manual labor.

While Josh has been doing that, Matt designed our web site, and recently spent tons of hours learning how to create an online  shopping cart integrated with a payment solution/credit card merchant account so we could sell TShirts to those who have expressed interest.  He has also spent several hours in training for our marketing system.  Check out our web site and TShirt page with our homegrown model at:  Buckaroos Merchandise.  Oh yeah, he is our Chief Pizza Tester, and after our first one came out of the oven he took a couple bites, looked up over the top of his glasses and said, "That is a darned fine pizza, I would totally pay for this!" and as cheap as he is (and Josh too! Hahaha!  We tease Josh about going out with his friends to Denny's and ordering a glass of water, then bragging about not spending money!) that was a high compliment!

And me?  Well, I have been the Woman of Many Hats, I guess.  I am Keeper of the Project Deadlines, Calendar Monitor, Delegator of All Tasks, Social Media Manager, ServSafe Trained Manager, POS System Coordinator, Accounting and Financing Overseer, Interviewer and Encourager, Butt Kicker and Problem Solver, Interpreter Of All No One Gets That Each Other Says (HAHAHA!  Probably my main task!!!), and Outside Entity Collaborator.  I have just tonight finished my last online class for Job Coach Certification offered through the Virginia Commonwealth University so that I have a better understanding of the work ahead of us.  Oh yeah, and I grocery shop and plan meals, and keep the house clean...maybe teach a little school in between.  And I have no photos to share other than this one, because no one takes pictures of the terribly exciting desk work I do!!!

And maybe my most important role is to continue to pray that God uses this once dark and dingy trash filled back room to become something very special.  Angie said it best this past week when, as we were talking about very real financial concerns, she shared, "As long as we keep the mission first and never forget why we are doing this, we will make it.  The minute we start making decisions based totally on money alone, we will fail."

We are risking so much for this, I won't pretend otherwise.  Dominick and I know retirement will never happen for us, but if we can somehow help our own kids, and make a difference in the lives of others, too, then we will be content.  What I love about this group of unique people pulled together from different genetic backgrounds is how our spiritual DNA is the same.  We all feel this way, that welcoming others into our lives, perhaps especially those whom others have rejected, is part of our calling as a family.  We do so in a no frills sort of way, for we are not really anything special or fancy.  We are, hopefully, creating a bigger living room with Buckaroos, a place where others can join us, be accepted, be nurtured, have standards to live up to that are high for character and relationship, and maybe...just maybe...make a really good pizza and serve rich and creamy ice cream crafted by another family business out of Utah.

Later this week, I will have a very special story to share with you all, one that had us all with jaws dropped and left us teary.  We received an unexpected gift, actually we have received several, but this one was from way out in left field!  I have feeling it may not be the last we share, if the past few days are any indication, there is a whole lot of beautiful ahead of us, along with a whole lot more hard work.

As I finally head off to bed, my mind  and heart are working overtime, still processing the interviews, the faces that won't recede into the background, the hope that we are carrying ourselves that this place will be the place where all belong.

"Pizza with a Purpose for People with Potential"...may it be so.

Keepin' It Real

Here we are (Mom with the camera), looking our rugged best.  Well, a little less than polished :-)

This photo was taken in Lake City this past weekend, where we went...well...not camping, but as Angela has dubbed it, "Cabining".  We rented a not-so-little cabin (with seven of us it really CAN'T be "little"!) on the lake to try and regroup and refresh as a family, recognizing the need to reconnect after what has been months and months of very challenging times for us.  We are intact, we are making it, but man, has it been hard.

Why?  Change, growth, new awarenesses that are hard to accept, overwork, stress from trying to start a new business with multiple delays and lots to learn that is not necessarily easy.  Death, grief, loss, repeat.  We know if we are not intentional about our time together, we won't be who we are as Team LaJoy...and right now we need that more than ever.

The trip was just what we needed, and I am so thankful that we had that brief respite before we end up in the thick of it with even longer hours required as Buckaroos opens next month.  We all felt a wee bit disconnected, and though it was on the spur of the moment, everyone made time to be very present to each other.

We are not super outdoorsy, though we love living where we live and being around the splendor we can find so easily on the Western Slope of the Rocky Mountains.  One of Kenny's favorite relaxing activities when Cabining is to put together jigsaw puzzles...our Mountain Boy is really more of an Indoor Dude...hahaha!

Ever the homeschooler (sorry, I may never shake that), it was fascinating to watch everyone play certain unusual brain stretching games, some of which utilized words, some images, some numbers.  It was amazing to see who was really oriented in which directions, no surprised, but the speed with which some of the puzzles were solved was shocking!  To no one's surprise, Matt was the whiz kid at QBits, which we had never played before, solving the shape based puzzles seemingly instantly.  Racing against one another, the matching games proved to be areas of great strength for both Kenny and Olesya.  Word games?  Mom blew everyone out of the water...hahaha!  At least I had one strength!  The matching games of images was a total and complete bomb for me, EVERYONE beat me!  We had a lot of fun, and it was nice to get our heads completely off of work for a little bit.

This trip was different though, as for the first time, really, it felt as if I was traveling with all adults. The work load was shared quite evenly, everyone took turns cooking and cleaning, and as I looked around, I realized that I may always say "the kids", but it really isn't true any longer.  I knew that intellectually, but I felt it in a new way this past weekend.  No, it brought no melancholy at all, I am not really built that way, I don't yearn for yesteryear.  Instead, I felt a sense of accomplishment that we have made it this far, that everyone is intact and whole, that lots of healing has occurred, and that there is forward momentum.

This is in spite of the very real truths that life with so much disability is harder than I ever fully express here.  It is impossible to capture the daily struggles, the achingly painful moments, the brain misfires and simple exhaustion that washes over me some weeks.  Dysmaturity...the mixture of younger and older behavior in the same person...is confounding and hard to keep up with sometimes.  It can be disheartening to feel you have made it to one place, and then realize there is a pre-teen still very much alive inside a full grown adult body.

There is growth as well, it just occurs in fits and starts with wider swaths between them.  When I work hard at it, I see it clearly.  When I am exhausted from being the second brain for several others, it is hard to grasp.  Sometimes I personally struggle with feeling that Matt and Josh are not always getting the attention and time they deserve.  My relationships with each of the kids run deep and strong, but I know what it is like from my own childhood to be the one who is "OK" and parental attention sometimes has to focus in another direction.  Balancing it all is something I am not as good at as I wish I were, and I am always left feeling that I have someone not "seen" someone who deserved to be seen.

These two are such sweet, bright, diligent, responsible, faithful young men.  They have worked tirelessly for their siblings to help make Buckaroos a success.  Matt skipped out on a Civil Air Patrol meeting early tonight to get back to work on their web site and add in a couple of features.  Josh has spent time this week, yet again, doing several tasks there at the store.  Neither one expects anything in return, and they happily offer their services.  Sometimes I am blown away by their generous hearts, and each of them often touches base with me, making time to have a conversation on hard days, reminding me I am doing a good job under challenging circumstances, offering support and encouragement to their brother and sisters while teasing them mercilessly :-)

Watching Josh this weekend, it was so easy to see the father and husband he will become one day.  The girls and I talked about it later.  It is hard sometimes to remember he is only 16, for he carries himself very much like a man these days.  He got up early to make pancakes for everyone...his specialty which is white chocolate chip pancakes.  There was something in his demeanor that reminded me of Dominick when the kids were young, or my own Dad who would make breakfast for our family.  Josh is very clear that his heart's desire is not so much about a particular career or hobby, but that he one day wants to be a husband and father.  He speaks about it frequently, about how he won't live for his job but wants a good career to support a family.  His pancake skills are on point, so he will have some happy kiddos one day!

No, this is not a failed attempt, this is actually how Angie likes her pancakes...and everything else!  Charred!! Hahaha!

And this may be one of my favorite photos in a very long time...

After pancakes, Kenny, Olesya and I went kayaking, something that due to the past two summers I just haven't had time for.  Summers have been extra hard the past two years, but it felt SO good to get back out on the water, and I was enormously proud of Olesya who has been far too scared to get back in a kayak after going rafting once and falling out, losing her glasses in the process.  She gathered up her courage and though she paddled very tentatively, she pushed past her fears and got back out there!

Lake City is my dream spot, my very favorite place of all in Colorado.  Many might not find it so, as there are more majestic locales in our beautiful state, but it is small and cozy feeling, and we have been here 4 or 5 times and had lovely, relaxing adventures every time.  I don't tend to have property envy, but man, a home on the lake here would be amaaaaaaaazing.

Yes, it was just what we all needed, and laughing over ridiculous movies as we snacked late into the night was an exercise in healing :-)  The coming months are going to test us in new ways, stretch us beyond anything we have experienced before.  We returned home to hit the ground running in earnest, having established a Grand Opening weekend for Buckaroos Slices and Scoops for October 18th and 19th.  There is so much to do!  Hiring, learning a point of sale system, working our oven and making pizzas "for real" now, gearing up our social media presence, and much more. 

Keepin' it real, this is going to be harder than we can possibly imagine, it already has been this entire past year.  Also keepin' it real, we love each other, we work hard, we want to make a difference in the world around us.  We are far from a perfect family.  We have "errors in communication" with far more regularity than most which leads to incredible frustration.  We make mistakes with great regularity.  We often "zig" when we should have "zagged".  But through it all, we keep trying, we work extremely hard at our familial relationships and we value them.  We put a whole lot of faith in God to pull us through the hardest times.  Funny how people tend to label eras in their lives as all good or all bad, when really, there is never a time that is all one or the other, unless that is how one chooses to view it.  We see what we want to see. Sometimes I have to remind myself to get my head in a place of greater gratitude.  Not Pollyanna-esque style, but simply not taking all the good stuff for granted because the hard stuff is so hard. 

The respite from Buckaroos and real life was necessary and truly relaxing.  Our lives are already three days back entirely consumed now with crunch time.  I am sure our next couple of posts will be largely about Buckaroos and where we are at with it.  Sorry if that is boring!  For us it is exciting and scary and maybe terrifying.  Full steam ahead, here we go!

Growing Through Pain

I know with five kids, one might think that we have had a few medical issues along the road, the typical broken arm, twisted ankle requiring crutches for a couple weeks, maybe some stitches here and there.  After all, kids manage to be pretty "breakable" in all kinds of ways, despite the fact that they think they are indestructible!

But sometimes I find myself wondering what it would actually be like to have kids, regardless of the number, who didn't have to suffer so much physical and emotional pain.  I wonder what it would be like to be the mom and deal with just a broken arm or a few stitches here or there, or the wounded heart that comes from first time love that fails.

This past week Angie has been in incredible pain.  She has yet another tooth issue, a failed root canal that has left her writhing.  We took her to the dentist Tuesday, where they determined what the issue was, prescribed meds for the building infection and pain, and had us make an appointment with the endodontist for the following Monday.  Last night, though earlier in the afternoon it appeared the medications were finally kicking in, we found ourselves at the ER as the pain suddenly became unbearable, so bad she collapsed on the floor before we left and could barely walk upright.

Now, this girl is tough.  I mean Tough with a capital T, so if she is complaining, there is really something wrong.  As I sat there feeling utterly helpless, outwardly calm but inwardly wanting to scream at the Emergency physician to GET IN HERE NOW AND FIX IT, I couldn't help but think just how many times I have sat bedside with our kids completely unable to offer any relief other than to simply be present, to offer them encouragement to stay strong and confidence that I know they can make it through.

Angie, who is usually so stoic through these kinds of things, was completely unable to speak as she shuddered in pain, tears streaming and body stiff with the effort to stave off the waves of pain.  Her lower lip quivered as she bravely tried to get through this next dental episode, the worst she has yet to have.  Having had five root canals and crowns, along with other cavities and tooth infections, means she is well versed in "what comes next", but that almost makes it worse.

Through all that has been endured physically by our kids; spinal fusion surgery, major jaw surgeries, multiple cleft surgeries too numerous to keep track of, Tuberculosis times two, rickets, tooth decay to a ridiculous degree, and more, I have sat beside them, hopefully offering some level of comfort as I am truthful and acknowledge the pain they are in, but remind them that soon, it will pass.

However, it is the emotional pain that is perhaps the hardest to deal with. The damage that comes from feeling unloved, feeling stupid because brains were damaged, not understanding what they don't understand in any given moment because logic has flown out the window and processing is impossible...and they know. They grow weary, frustrated, and at moments flip flop between complete denial and devastating acceptance.  There tends to be little in between with our FASD  (Fetal Alchol Spectrum Disorder) young adults when we are in hard moments.  It is heartbreaking to witness, and gut wrenchingly difficult to try and find the perfect life raft to throw them that can offer them hope.

Then there are the ways in which we have to protect them from themselves while others have NO CLUE nor can begin to understand.  Heck, I get it, we struggle to even explain it.  Today, while at the dentist, I went back with Angie.  I offered to remain behind if she wanted, respecting her adulthood, but even in her pain she had the presence of mind  to know they would offer instructions that her brain might confuse, and this was not the time to take chances.  Of course, the sweet dental tech doesn't understand any of this, nor that Angie might struggle to answer as her brain was distracted by pain, and she certainly was not going to grab hold of any instructions afterward.  Being the mom of adults who now look like they ought to be handling everything on their own is awkward in all kinds of ways, because they really can't handle it.  I have received more Helicopter Mom looks than I can count, and it is painful sometimes for me to always be perceived that way.  Kenny has a great sensitivity to this and always explains it to others when he goes for medical care or financial assistance, and has told me, "It is hard enough for you to have to do this for me forever, the least I can do is be aware how others might view it and step up so they know I want you here and you are not like that kind of mom."  Of course, he has had far more opportunities to practice it and witness it than the girls have had.

No matter how vigilant we are, there are still things we can't do to protect them. For example, Olesya and Kenny worked on the holiday to seal the parking lot at House of Spirits Liquors and Buckaroos (our stores.)  Olesya was in the sun all day and got sealer all over her arms and hands.  She also got sunburned pretty badly despite trying sunscreen but washing it off almost immediately because it caused her to itch.  She came home and showered, and when she came out, she looked like this (these were actually taken 2 days later):

Yeah...I imagine you cringing as you view these photos.  Cringe even more when you realize her brain did not tell her that she was very literally tearing her own skin off her arms and hands.  I was totally in shock when I saw her afterward, knowing she didn't go in looking like that, but she scraped with her fingernails to get the sealer off, NEVER RECOGNIZING the damage she was doing.  When questioned, she admitted she didn't even realize it until she was out of the shower.  Her sunburn was awful, but she hadn't felt that either and she normally turns beat red in the sun so Dominick had no clue she was burning that badly.  In the past, she sensed little pain even with a broken arm that almost required surgery, and she had chemical burns to her feet and knees because she didn't realize kneeling in floor stripper would burn her (she had been told, she just didn't "get it") and even though her feet and knees were burned through layers of skin (she had holes in the soles of her shoes, hence the feet), she didn't "connect the dots" and realize she might be hurting herself with the floor stripper because "I just thought I was wet."

I share this NOT to embarrass Olesya, or any of the kids, but THESE are the ways in which our kids struggle and we worry about them being safe all.the.time.  We just added to our business marketing for Buckaroos that "Some disabilities are invisible"...and yet, as with the above, sometimes they are not.  They just manifest differently and you need to look carefully at the clues.  We have realized after this incident that Olesya's brain must short circuit around pain somehow, and not actually feel it to the degree we all would.

This, too, causes me to ache for the kids.  It won't get better, it never will get better, not this part.  We all know it and are doing our best to navigate these next years as we figure out what is safe and possible, and what is not.

I don't know if I have figured it out yet though.  I have long forgotten what "normal" looks and feels like, though driving with Josh with his learner's permit has been a pleasant and beautiful surprise.  Especially when he proudly offers to treat me to a drink at Burger King to make me feel special and now we have a "thing" every time we go out...that Orange Fanta frosty drink is awesome!  It was also a reminder of just how flexible my own brain has had to be as we work with and love such a diverse set of young people.  Sometimes I find myself offering totally unnecessary reminders to Matt and Josh, who graciously accept it when I catch myself saying, "Wait...sorry for that...you don't need micromanaging.  Just sort of used to it!" and they grin and tell me they understand.  They know those reminders, the checking for comprehension, the double checking are totally necessary in other parts of my life.

One thing we don't have to figure out, thankfully, is how committed we are to one another, each and every one of us.  I might have to guess at what "normal" would feel like, but I don't have to guess at what immeasurable love feels like.  I'll take that over "normal" any day.  I hate the suffering, damn I hate it.  It doesn't matter if it is emotional, physical or spiritual, I would change that instantly for our kids if I could.  But they are who they are, these amazingly resilient, beautiful souls, not in spite of the suffering, but because of the suffering.  I try never to forget that in my yearnings for them to suffer less, for sometimes it is all I can cling to when I see the confusion and pain in the eyes of one of them who is struggling to "get it" in any given moment, or when they are undergoing some painful procedure and I sit back, present but somewhat removed and they know it and there is little I can do but be their cheerleader from the sidelines.

Pain has been quite a teacher in our home.  Suffering has been a companion.  Love has ruled though, always.