Wednesday, March 27, 2019

This is Hard

Over the past 20 years, our family has weathered some pretty tough storms, and as we look forward I am sure we will face many more.  But I am going to be completely honest, right now is one of the roughest we have ridden out.

We have been home three days from Chicago, where Kenny had tongue flap surgery at Shriner's.  I have wanted to write  a blog post since we were there, but words haven't come, and exhausted has been such that I am simply trying to keep putting one foot in front of the other.  I hope this post doesn't come across as one big Whine Fest, but right now my heart is not in a terrific place.

The day of surgery, Kenny was actually doing far better than he usually does emotionally.  He was calmer, certain of his decision, and ready for the next three weeks to begin.  Things went downhill from there.  We arrived at 7:00 AM as directed, only to end up waiting for the actual surgery to begin at 3:00 PM.  This was torturous, and did nothing to ease his mind.  Unlike in years past, specialist after specialist traipsed through his room, asked the same questions, and seemingly had no answers to our questions.  We had been given NO information prior to our arrival other than "he will have tongue flap surgery", and we didn't quite know what to expect.  It was as if the right hand didn't know what the left hand was doing, and communication between the team felt non-existent, including the surgeon who came in and acted as if they still weren't certain up until that morning that the surgery was even going to happen, as they had consulted with others trying to find an alternative...but of course had never passed that information on to us.

I had come armed with xrays from his dentist, as sadly, after his braces came off three weeks ago it was discovered that his top front two teeth will not be able to be saved and are rotted to the point they will have to be removed.  He is already missing one tooth on the right, next to these two teeth, and his dentist also said it appears the bone is too weak under those two teeth and he may need additional bone grafting at that location in addition to the bone grafting that will need to be done for the first missing tooth.  Now, mind you, Kenny has already had over 12 teeth removed, was born with additional molars and five wisdom teeth.  He has already had two painful bone grafts in two different surgeries where they pulled the needed bone from his hip. The original plan was to use cadaver bone this time around for the small spot where his one missing tooth is, but now that plan may change and we still don't know if cadaver bone will be used, or if the larger graft needed now necessitates grafting from the hip again, which is an entirely different level of takes about a month for the hip to heal. 

I had attempted to call the hospital twice before our arrival and never heard back from anyone, and now, when I tried to ascertain who needed this new information, each person passed the buck to the next person, and no one seemed to know who was going to make decisions around this, nor who needed the xrays and documentation I brought.  It was incredibly frustrating, and eventually after talking to no less than 5 or 6 people I was given the card of one of the team members and told I could call this week to find out what was going on after a consultation with the prosthodontist...but no one would likely call me, I would have to chase it down.

Thankfully, we had Ruby, our pre-op nurse for every single surgery, and she is a gem.  She was as frustrated as we were over the scheduling, the obvious lack of communication, and did her best to help.

Kenny has a childlike quality to him at times, his FASD reflected in his mixed maturity in various settings.  Sometimes he is 30 years old, and sometimes he is 10 years old.  During stressful times, he reverts to a much younger version of himself as nerves take hold of him and anxiety sets in.  He proudly brought and wore his Shriner fez, and he was very much like a young boy showing off a new costume.  The staff was very sweet with him, and many made a huge deal over having never worked on a Shriner before, which made him very proud.

Finally, he was taken back for surgery and it took about 3 hours, where they took a flap cut from the center of his tongue, curled it up and attached it to the roof of his mouth to close his fistula (the hole in the roof of his palate.)  It is as awful as it sounds, honestly.  This remains attached for 3 weeks, when we return and they release the flap, and it becomes a living tissue "patch".  When we had discussed this during his team meeting in the fall, they tried to convince him he should just live with a plastic obturator for the rest of his life, which is essentially sort of like a retainer with the plastic piece against the palate sealing the hole.  This is not unheard of, and does keep kids from having to go through this surgery.  Kenny has had several attempts at closing his palate and there was too much scar tissue built up to keep trying other methods.  Kenny immediately decided he would rather have the surgery for a permanent fix, as he plans on doing a lot of public speaking and wants to sound as natural as possible.  He also is very tired of food and liquids escaping through the hole into his sinus cavity,  With his memory issues, he also envisioned losing an obturator frequently, and didn't want to have a device to keep track of for the rest of his life...he has a hard enough time keep track of a regular retainer.

Coming out of surgery and seeing him in post-op was the worst I have ever seen him through all the surgery.  There seemed to be confusion about whether he was coming to the ICU or not, for some unknown reason, and he was not hooked up to pain meds initially.  He was sobbing as we arrived, (Candi was with us for this surgery, thankfully), in a great deal of pain, was very scared as they left an intubation tube in his nose which he had been specifically told would NOT be there when he woke up, and he couldn't speak, of course.  I tried to calm him down as best I could and he asked to write notes and scrawled, "Wasn't worth it" through his pitiful cries. He was thrashing in bed, obviously in very clear emotional and physical distress.  Man, I almost lost it.  I can't begin to tell you how that hurt, as he was in bed suffering so much pain and confusion.  Kenny is not a rookie at surgery, and to have him say that broke my heart into a million pieces.  Somehow, I kept it together, and we got the nurses to get him hooked up to pain meds, so that within a couple hours he was calmer and more able to handle the pain.

This is the reality of surgery for Kenny, and I share this photo to make this real, because he often smiles for photos in hospital beds, leading others to believe it is far easier than it actually is:

That is a far cry from this post-op photo:

And he crashed right after taking this.  Kenny is the sweetest, kindest young man anyone would ever want to parent.  Even as he was in so much distress immediately post-op he kept wrote, "I am sorry" to the nurses and "Thank you".  One of the nurses who helped him pre-op phoned me mid-surgery to update me, and spoke for about five minutes about what a delightful teen he was, how she was so glad she got to meet him pre-op and see what his personality was like, and that he was so courteous and quite a kid.  He has a gentleness to him that is unusual in young men his age, and again, that childlike quality at moments that is endearing.  It makes it harder to see him in pain.

Kenny had great concern around his breathing the first couple of days. He has never breathed normally through his nose, and with his mouth somewhat blocked by the tongue flap he struggled to breath, though he was getting enough oxygen.  It made him very anxious for the first two days, but eventually settled down and he began to understand what his new normal would feel like. 

Home has been a challenge, as with his FASD, anesthesia seems to cause a lack of clarity and greater inability to make good decisions..  If he isn't watched closely, he can be a danger to himself.  He is on a full liquid diet, yet in front of everyone tried to grab a banana and eat it...he simply didn't connect that he would choke on it.  He isn't capable of managing his pain meds on his own, despite appearing very lucid.  He is confused a lot right now, but overall healing is going well.

He is also in tears as it is frustrating to not eat, to be unable to easily communicate, and to have experienced this insult to his body.  Last night as he slowly slurped soup, he started crying out of nowhere, and holding him in my arms I ached to make it all better and yet can't...we just have to muscle through this period of time.

I reminded him of our family motto, "Hard isn't bad, hard is just hard." and perhaps I need to have this taped to my own forearm as a reminder to myself.  This is honestly the hardest time I have had in my own life since Josh first came home with Reactive Attachment Disorder.  I have been experiencing enormous swings with my thyroid meds and tests, leaving me emotionally more unstable, menopause is leaving me with sleep issues that are extreme...I am awake no less than 5 times a night, and 7-8 times is not at all out of the norm.  I am utterly, thoroughly exhausted and feel like it is a great effort to make it through the day.  School is not being attended to the way I want it to be, as there is simply too much going on, thought admittedly my standards are far higher than some.  Thankfully, I have these amazing, awesome, terrific, fabulous young adults who work well unsupervised, would never take advantage of a situation, and do their best to help in any way possible and support me.  But right now, I have nothing to offer my friends, many of whom I haven't been able to get together with in a long while, I have nothing to offer my faith community, I have nothing to offer to my family at the level of depth I prefer.  It is all just in dribs and drabs, doing the best I can to keep upright, and I am doing a pretty crappy job at just about everything.

As we also have a gazillion things to do to get Buckaroos up and running, and to teach about business, nothing is getting the attention it deserves, especially Dominick, Matt and Josh.  I feel horribly about having so little time for them, and honestly, like a total failure right now.  Matt will be leaving for the entire summer, pretty much, as he serves as a camp counselor and heads to The Netherlands, and I really treasure our relationship and want to spend some time with him, just chatting, learning what he is working on in school, discussing the deeper things of life he tends to save for conversation just with me.  I miss Josh and his bouncy, 16 year old self, and feel like he is getting the short end of the stick right now more than anyone.  He is SUCH a man these days, and is helping with the physical work at Buckaroos without complaint and with no reward for himself personally.  I want to be present for every moment to say goodbye to the little boy as he gradually is slipping away.  Dominick and I are on the fly and rarely have a moment alone right now.  Basically, I feel completely disconnected from my own life.

It has been a long and harrowing year for me, beginning really with this past July and mom's move to the nursing home, getting her place emptied and sold, dealing with paperwork for Medi-Cal and more.  I feel like it has been almost non-stop for me, and it is taking a huge toll right now.  I am grateful to have the kind of friend I have in Candi, who shows up for the hard stuff.  I am grateful to have the support of prayer from people at church who really care.  I am grateful to have the faith I have that somehow, I will come through this stage of life intact and that there is indeed an "end" to the current madness of the past several months.  And I am beyond grateful to walk through life with the particular family I have, who are actively loving, thoughtful, and hard working individuals and a team like no other.

We have an unexpectedly longer trip of 10 days to Chicago in a week and a half, where Kenny will see a specialist a few days prior to surgery.  His surgeon admitted that we had made the right call on this surgery, as his palate didn't have just one hole, but was "swiss cheese" as she described it once they got in and started working.  Now we have to determine what steps are next, how much bone grafting to do, whether the top front teeth will come out during this next surgery, and more.  We are up against time as Shriner's only treats until you are 21 years old, and Kenny turns 21 in November.  Where we were once told they would finish any uncompleted work, that now appears not to be the case, so there is a sense of urgency around decisions now.  Kenny is also extremely upset about having to walk into adulthood with no front teeth for several months as he waits for the process for implants and healing of bone grafting, and that is profoundly upsetting to him.  It is highly likely, as his orthodontist told us, that he can not wear any sort of prosthetic during that time. 

We would appreciate any prayers, light, and love sent our way right now.  It feels personally to me like the kind of long, slow slog I might not make it through.  Oh, I know I can, but it FEELS very, very challenging right now.  Too many things going on in too many directions with too much riding  on it all financially, emotionally, and more.  Too many hearts needing encouragement in my life, and not enough of me to go around. 

This is hard.  We LaJoy's "do hard"  pretty darned well, but right now it feels almost impossibly heavy.

Tuesday, March 19, 2019

Are We Freaking Out Yet?

Be Still...

Be Still...

Be Still...

Listen, Love, Laugh, Repeat.

I have never been on a roller coaster quite like this one, and those who have known us for years know we have been on many different coasters.  Some have had big dips, fast turns, and flipped us upside down.  NONE have blazed right on by the exit and kept going, and going, and going like this has!

I may not be freaking out yet, but at moments I am wondering how I have managed not to!

This family is crazy, we knew it all along, but this year is proving it.

Let's pick up where we last left off, shall we?? Haha!

Final Braces Appointment!

Since I last blogged, we have had two kids get braces off (Kenny and Matt), one of those kids learn that, sadly, due to 10 years in braces, malnutrition and a host of other reasons, he was indeed going to lose his two upper front teeth in addition to the one he already lost next to it.  This was a real blow for Kenny, who is going to need to get implants but this process will include far more bone grafting than we thought, and walking around for MONTHS without his three upper teeth as grafts heal, then posts are put in and allowed to heal.  This is really bothering him, as it would anyone, and the timing couldn't be worse as he is moving toward graduation and the future business while contemplating how he can present well with all of that going on in his mouth.

Before the post-braces dentist trip and bad news...

While Olesya, Kenny, Angie and I headed off to California to visit my mom and then head off to Las Vegas for the International Pizza Expo, Josh participated in  his final basketball games of the season, and also earned 3rd place for team shooting with his shooting club:

Matthew was accepted as a camp counselor at TWO different church camps, one for the majority of the summer which is called Rainbow Trail and is associated with our current Lutheran (ELCA) denomination.  He had a 45 minute interview and was quite impressed with the level of spiritual questions he was asked and feels it will be a true period of growth for him.  He is really enjoying the college aged group our church has put together and is looking forward to being a counselor again at La Foret, his years long summer camp, as well.  In between he will be gone 2 1/2 weeks with his amazing trip to The Netherlands through Civil Air Patrol, so everyone is teasing him that we won't see him all summer...which is true!

On the pizza...

My mom was not doing well when we visited, but thankfully it sounds as if she has improved considerably.  We sat and visited around her, as she wasn't really able to converse with us much as she was on heavy medications and battling a  infection.  We spent time with Dominick's mom as well, then it was off to Las Vegas for some heavy duty learning for Buckaroos!

This show was incredible and had everything under the sun we might need!  There were 1500 booths, tens of thousands of people, and it was an event like none other.

There were tons of classes to take to learn about the industry...

They were eager to get moving as the doors opened!

We were very fortunate to have Candi join us to help me keep the kids on track and from becoming too overwhelmed.  This was business, we had a lot of equipment to look at, pizza products to try, and we needed everyone's heads in the game.  With a venue this large Kenny tends to shut down, and having an extra adult brain around helped significantly to keep this a deep and rich learning experience.

Ready to eat pizza for two solid days! Angie and Kenny were in 7th Heaven!

We walked, we talked, we ate, we planned, we priced, we got scared, we encouraged to face the fear, we learned and learned and learned...

Is it ok if I admit that personally, I tried enough samples there to never, ever want to look at pizza again?  Even trying to eat the smallest portions, it was

And honestly, no, they are not all the same. 
And yes, we came away with real knowledge and preferences.

Kenny has been our oven researcher spending hours and hours researching the very best options.  We were blessed...and I do mean find one far better than we could ever afford new on Ebay, which we purchased a couple months ago for 1/3rd the cost and it is ENORMOUS, similar to the one in this photo.

While there were many wonderful things to come out of this experience, perhaps the single best one was the confidence that was developed in all three.  They each attended a class, and returned absolutely shocked at what many of the attendees didn't know about business in general.  They explained that they knew basically everything the presenters were trying to what is your mission and why are you in business, how to do food cost break downs, how to calculate profit and expenses, how to be connected with your customers and develop real relationships with them.  As they wandered the show and saw hundreds of business owners, they listened in and realized they knew far more than they had realized, and our months of hard work are paying off.  They were able to envision actually running the business far more than they could prior!!  I was thanked multiple times for teaching them so well, and the excitement was palpable as they all began to grab hold of Buckaroos as their business.  That was worth the price of admission right there!

We saw some silly things as well...

Pizza cars...

Pizza suits!

Then things got serious the second day, when we were researching our POS (Point of register) system.  This was one of the more expensive purchases they would be making, and one of the most important and difficult to consider.  It needed to be intuitive to kids for whom tech isn't always intuitive (Olesya is surprisingly quite good at tech!) and for future employees to have as simple and easy a system to operate.  We talked with our new friend, Eddie, the salesman for a system called Thr!ve (Yes it is spelled that way!):

This gentleman was SO helpful and courteous, speaking directly to the kids respectfully, answering their questions, encouraging them to hop on and try it out.  Kenny is our most challenged with technology, and this was at the end of Day 1, when he was really admittedly on overload and he said, "Well, if I can manage it now, then that will simulate a bad brain day at work for me!"  What do you know, he entered a pretend order with ease!  That pretty much sold us!  We looked at every other system at the show, perhaps 6 or 7...none of them had the features we were looking for at an affordable price that were as intuitive.  We spent the evening discussing the pros and cons of the system, and ultimately decided to return the next day to put a down payment on it.  I was enormously proud of Angie for stepping up and asking what they might do for us if we actually put that money down today...did they have any show deals or would they offer us something in return?  Just like her dad!  And guess what? THEY DID!  Haha!  She negotiated a $500 discount for a mobile app for our customers!  

We made all kinds of important discoveries and hashed out decisions while we were there, and one was perhaps adding to our Italian Roast Beef Sandwich!  This was DA BOMB!! Oh my gosh, Kenny called me over to sample it, and having had the real deal in Dominick's decidedly Italian-From-Chicago family, there was no doubt, this was the single best most authentic Italian Beef sandwich I had eaten in years!  Oh man, it was SO good!  Kenny was enjoying it so much their reps asked to take his pic and put it on their Facebook page :-)

We all needed this...concrete...touching...seeing...tasting...discussing.  It changed everything.  Kenny, who feels the most inept in the kitchen, came away saying he thought he could actually do this after all!  The girls were understanding things on a new level as well.  There was such positive energy, so much hope!  My heart was full, maybe as full as my tummy was!! HAHA!

We came home and there was more physical labor to be done.  Things are slowly starting to happen, contractors are being lined up; plumbers, electricians, concrete work and more.

Angie is showing off her handy work...she did the drywall work for two areas!!

Concrete cutting ready to begin for plumbing lines...


Tomorrow the kids are going to jack hammer and haul away all the concrete between the lines for a trench for the plumbing...this will be a lot of work!

No, we are not freaking out yet, but we could be.  God has shown up in BIG WAYS this week, which I will share in my next blog post, which actually kept my personal Freak Out at bay, because trust me, it is there, beneath the surface.  We are diving in solely on faith. If this works, it will all be worth it but it will tap us for a long time to come.  We will keep moving forward and God keeps sending 2x4's every time I get too nervous.  When will I learn to trust?  It's the hardest thing to do ever.

Buckaroos is moving along, Matt and Josh are helping in all kinds of ways and doing their thing as well.  Life is good.  Exhausting, oh man, exhausting...but good.

Saturday, March 02, 2019

How We Measure Success

Our family has had a week of nice highlights to share on Facebook, as Josh completed his year long film project, Matt was notified of his acceptance for the International Cadet Exchange Program for Civil Air Patrol where he will be visiting the Netherlands for two and a half weeks this summer, and as Kenny, Olesya and Angela are traveling with me to the International Pizza Expo in Las Vegas in a couple days as they work toward the launch of Buckaroos Slices and Scoops this summer.  All Facebook worthy stuff, right?

But is a photo and an exclamation of a success that the world would recognize as such really what our family views as success?  Sure, I guess, but as wonderful as such pronouncements are, they aren't really the kinds of accomplishments that humble us, that touch our hearts, that help us feel we have really, really succeeded at something.  I have reflected a lot on this the past couple of days, on the long drive from Colorado to California.  When I considered the past twenty years of family building and parenting, the moments that really stood out to me as my personal yardstick for success were not at all the sorts of things that can be simply captured with a photo and a paragraph post on social media.  They are too nuanced, too complicated, too ignored by the world to ever be held up by most as the kind of thing that one would share joyfully with others.  

As graduation draws near for Kenny and Angela, I guess it is natural to look back over the long stretch of my life and ask myself how I measure success, and what that actually looks like to me.  Someone once told me that Matt must be the one of our five that helps me feel successful as a homeschooler and parent.  I scratched my head for awhile over that one, as though I certainly am happy for him and see his hard work paying off, his more traditional accomplishments are not what I would lift up as helping ME feel successful in my work as mom and educator.  

So what do I view as the biggest successes in our lives?  Where do I see celebratory accomplishments that are far harder to point toward and explain to others?  What matters most to me as our kids mature into adults and we enter a new phase of our lives together?

Watching Josh this past weekend as he shared his heart and ability to connect with others and feel their pain through his film project was a success beyond all measure for a young man who had Reactive Attachment Disorder!!  Being the recipient of his open and easy affection, his ability to overcome the insecurities that still creep in from time to time when he feels alone in the world, or when fall comes around and the inevitable seasonal depression sinks in is perhaps my most important success of all as a mom. This is the child who, without intervention and years of continuing hard work had the most potential to harm others, for RAD is the thing serial killers are made of.  Sound  extreme when one looks at Josh and sees the softness in his eyes, feels his arms wrapped authentically around them as he enfolds them in one of the best hugs ever?  Trust me, this is not hyperbole, nor was it a given that "love will conquer all".  His years long rejection when he was young, his fight through the pain of being abandoned, and the trust he has placed in us as his parents was hard earned and the biggest fight of my save his heart, to reawaken his ability to let others closely in.  The first three or four years with Josh were the hardest of my life, and preserving my ability to continue to act lovingly in the face of constant hourly rejection was something I never thought I could do.   

He "sees" others and has an affinity for those who are overlooked...people with cognitive disabilities, kids on his teams who are not the super stars, those our culture deem as worth less than others.  He befriends them all.

This weekend, he was held closely by those in his film and he didn't physically push them away.  He felt deeply, loved openly, and has a heart filled with compassion and could be described as deeply good.  He rejects the standoffishness that other teens show their parents, and instead enthusiastically yells out, "Loves Ya Ma!" as he exits the car at basketball practice, no care at all who hears his declaration of  love for me.  And man, every single time he does that, I feel successful and I never take that easy declaration for granted.  

That is my yardstick for success.

With an engineer-like brain and a "close to the vest" heart, this young man concerned me most in areas of spiritual development and warmth.  Relying too much on his head and too little on his heart and gut, being a true natural introvert, I have often been concerned that he might have traditional success and be hollow inside.  Does that make sense?  We all know the type...those analytical kinds who are moved by very little, who become almost robotic in their interactions with others and who can't easily exhibit empathy towards others.  There are very, very few people who are allowed to see the real Matt, the softer inner core of the young man just isn't shared openly unless he feels you are really, really worth it.  He has always been gentle, funny, and kind with his family but we have worked hard to help him learn to express emotion, to tap his inner feelings, and to develop a healthy spiritual life that he can rely on.

Success with Matt might look like a pilot's license or certifications and leadership opportunities, and I get that and don't dismiss it.  But  you want to know what looks like success and makes my heart swell?  You may think I am stupid for this, but this really, really mattered to was him chasing camp counselor opportunities.  It was him setting aside time to attend a retreat recently as a young adult all of his own doing and choice.  It was Matt saying that this weekend, while the entire family was gone,  he was going to drive an hour to attend church on Sunday AND he offered to fill in for the girls and teach Sunday school to the little ones AND he is going to remain for a fund raising party afterward.  At 19 years old, he is owning his connections and spiritual life in ways neither Dominick nor I would have imagined four or five years ago.  Honestly, these are the successes with Matt that bring tears to my eyes.  It was standing on the sideline, listening to him speak publicly about the three men who trained him for his pilot's license, to hear the humility in his words, the honor he accorded them, the gratitude he easily expressed. It was the fact that he had an internal mechanism I didn't think we would develop when he was 10 or 12 years old that helped him have heartfelt appreciation for others.  It was that he had grown in confidence and public speaking skills when he was terribly quiet and shy as a younger child.  He has warmth, and that was hard earned as it was shut down in the orphanage and took years and years to bring out.  Being shut off in a room by yourself does that to you.  Having no one to love you or hold you and having your bottle propped does that for you.

And that is my yardstick for success.

Oh Olesya, you came to us willing to give up all of who you were to be accepted. You never stood up for yourself, for you learned at a young age in the orphanage that you had two ways to the strong one and push your way through, or be left alone by giving in to everyone.  Your disabilities had you viewing yourself as far, far "less than" anyone else, and you had virtually no self-esteem...none.  Like Matt, you are an introvert and that contributes even more to your previous Wall Flower status.

Not anymore!

Sure, you will always struggle with math and logic, but you are the single most organized person I have ever met!  You are standing up for yourself regularly these days, and will say a firm "no" to things that are not of your choosing, something I never thought we'd get you to do.  You are seeing strengths in yourself...finally!  You are, in many ways, my child who I think will be more of a late bloomer, who is gaining the most confidence through our business development process, and I can't wait to see how Buckaroos impacts you over the next year.  It is clear that you will shine as you grab hold of the kitchen there, as you keep Kenny and Angie on track, and as everyone sees your abilities begin to merge organizationally.

And you hug now, real hugs...not tentative, polite hugs, but settle into you, sigh-as-you-feel-safe-and-loved hugs.  You have always had a protective wall around you, have said you never wanted to get married or have kids, and the past year or two we are seeing a new openness to a life you once rejected.  Your emotional growth has been far and away an enormous blessing to witness!  You set a standard in our family for working diligently on yourself, and it impresses all of us.  When you want to change something about yourself, you set about it with great intent and dedication, which means that YOU matter to you, and that matters to me!

And that is my yardstick for success.

That you are alive and thriving and overcoming and reading and writing and oh so much more, Kenny LaJoy, is through an enormous amount of work in just about every possible arena.  Watching you lead adult Sunday School, listening to you preach, or seeing you read a college level book, all of it is One Big Accomplishment.  Probably my work with you has made me feel most like a good educator, for your intellect was unable to be tapped in public school, and you were unable to read at 12 years old, until you and I dug in and said, "Yes, he WILL read!" and put in the hard work to make it happen.   That you have tested at Post High School in EVERY category of your annual standardized testing is perhaps the biggest accomplishment ever for both of us, for you were never supposed to be successful in academics.

But what makes me literally drop to my knees in gratitude is that you are alive, for I know your disabilities have taken a toll on your psyche and at times you have wished you were not present to us.  If my encouragement has helped your resilience grow, than I have been successful, for the world needs you and your wit, your easily offered love and affection, your astute insights, and more.

And that is my yardstick for success.

We made it, Angie and I.  We almost didn't, she almost couldn't trust enough to give love and family a shot.  But ultimately, she did.  What we both would have missed makes me heartsick to even consider!  With a tough exterior and a strength that very likely saved both her and Olesya, Ang needed help to learn she could retain that strength but that it would take even greater courage to allow others in and let her softer side come through.  I call out to her tender heart, I ask it to come forth, and she has responded willingly, something I wasn't sure would ever happen.

Acceptance of certain limitations due to FASD has been hard, figuring out that she really DID have it along with Kenny and Olesya was difficult, but obvious once acceptance settled in.  Matching her strength for strength, delighting in her ability to let the Tough Girl slip away, and witnessing the transformation to someone who could embrace all of who she is and not deny enormous parts of herself is pretty intangible, not nearly as Instagram worthy, and is success almost beyond measure, and yet...

That is the yardstick I measure success by.

I have had to ask myself the honest question, do I value different things because of the reality of disability and lack of possibility for more traditional successes?  Or do we actually "chase" different things due to our values?  Does our success look different because we are settling for less and trying to make ourselves feel better about it?  Or do we, as a family, reject society's ideas of what success ought to look like? 

Which comes first, the chicken or the egg?

It is hard to tell, for we create our own reality, don't we?

I'd like to think that our values and faith guide us, that we truly look at the world a bit differently, that we live outside the norm a little.  I will be the first to admit that I am not that certain of all of this. We are not overly virtuous, we are not completely blind to the fact that we all fall prey to the desire for the things the world elevates. 

Maybe it is just that we feel there is more...MORE to celebrate than JUST the worldly accomplishments, MORE to see beneath the surface than what is easily visible,  MORE value to the abstract than the concrete.

Whatever it is, I think our personal yardstick works for us, and I wouldn't change a thing.