Monday, March 13, 2017

1, 2, 3 for Josh!

Many families have them, the one child who has no issues, who has no complaints, who does everything well and is mature and likable.  Sometimes, these kids get lost in the shuffle of larger families that include special needs.  I try often to make sure this doesn't happen with Josh, but I always worry that his self-sufficiency and easy going presence means he doesn't have enough opportunities to shine.  Boy, did he quietly make that possible this weekend!

Lacking true athletic prowess but enjoying physical activity, Joshua decided to play basketball again this season.  Much to our surprise, he showed a fair amount of improvement over last year! We all know he will always be one who has less playing time, and quite honestly it is his softer less aggressive nature that kills him on the court.  He realizes this and sees no reason to change, nor do we see a reason to push that since he is happy enough, so he cheerfully attends practices and games, enjoying the camaraderie and the work out, and he keeps his expectations low.  This remarkable quality of his has allowed him to truly enjoy playing this season, and to respond to his teammates with genuine encouragement.  His team was in its end of the season tournament, and was in the championship game Saturday!


Only his second season, Josh had great coaching and definitely improved his passing, dribbling, and placement on the court.  He didn't have many rebounds and perhaps only 4 baskets or so all season, but his improvement was obvious, and next year will bring more opportunity for growth.  How much it says about his character, that he fully intends to play every year, regardless of skill level, and not let that get in the way of learning a sport he enjoys!  VERY proud of this young man for that incredible attitude!!


Surprise!  They received 2nd place medals for the season, and 3rd place ribbons for the tournament.  

But wait...there's more!



Sunday afternoon Josh had a shooting competition for his club, which he thoroughly enjoys and has steadily improved at as well.  He has been awarded patches and a couple of 2nd and 3rd place trophies for team shooting, and is working his way progressively through the program.  Here he is, ready for competition.



FIRST PLACE IN INDIVIDUAL!!!

He did it!  As he pointed out, this is the first time in his life that he has won first place in anything.  He has participated in several activities through the years including basketball, art, music, volleyball, photography, bowling, and soccer as well as shooting, and finally his steadfast commitment to gradual improvement paid off!

I have tears in my eyes even as I type this, because this son of ours is so special, has such a kind heart, and has humbled himself over and over again as he ventured into new activities where he was definitely not a natural.  He did it for all the right reasons, the ones we tell kids to participate in things for, but often lose sight of.  Josh never did, he has enjoyed everything he has done despite being less than stellar at it.  He has set his ego aside each and every time, been a positive role model for his team, a hard worker and an example of never giving up.  He has learned that delayed gratification actually works, that time dedicated to learning something can pay off...and sometimes it never does in worldly accolades but can still be enjoyed.

Unassuming, he doesn't see his gifts as much as he might.  His giftedness is subtle and general, he has no specific area in which he soars, but has quietly worked at a higher grade level for years with no real thought to it.  He is currently enrolled in College Algebra and is already halfway through the course in five weeks time, and is also doing high school geometry having already completed Algebra 1 and Algebra 2.  I am in a bit of a conundrum as I try to craft his high school plan as he moves on from 8th grade, because as far as Literature, History, US Government, and Math goes, he is already 2-3 years ahead.  He never mentions it, never gives it a thought actually.   

So today, we celebrate Joshua...who is an overcomer in all kinds of ways!!  You are seen, my dearest son, you are beloved, you are honestly an example to me in so many ways and I am proudest of your heart!!

Friday, March 10, 2017

The End is Drawing Near


As winter fades and spring tentatively arrives, there is the soft, gradually increasing cadence of "Pomp and Circumstance" playing as the score to our weeks.

We have a soon-to-be graduate in our midst, and it is a sweet, tender time for us all.

Eight years ago, as Matthew began fifth grade, we made the momentous decision to give homeschooling a try.  I can still feel his hand in mine as we walked with great deliberation through the school hall that day we tentatively removed him from public education.  I tried so hard to present a confident front for him, all the while feeling tremulous inside.  Who did I think I was to assume I could teach him?  How did I think I could ever possibly do this and do it well?  All I really knew was our son, for a variety of reasons, no longer fit this setting and we were at a turning point and could either ignore the obvious, or make a change.

Somehow, we fumbled our way through our first year, adding two new Russian speaking daughters, discovering how learning disabled Kenny truly was though without labels at that time, and if everyone was going to be home for school Josh might as well be, too.  I think I held my breath the first couple of years, uncertainty filled my heart while I was offered the greatest trust by Matt.  He gave me the gift of patience as I re-framed my understanding about education and what it looked like, accepted my trial and error as I gently felt my way through to solid ground,  and  eventually the two of us hit our stride, and we were on our way.














A sweet, caring brother...

                                                                  Who still loves his blankies!


Now we stand side by side once again, looking forward toward a new beginning, yet another re-framing of what post-high school education can look like, and trusting one another as we move into a new phase.  Others may not understand, but it is as if he and I glance in each other's direction, give one another a wink that silently says, "No worries, others may not get it but we do!"

Matthew is a young man for whom true pomp and circumstance hold no real appeal.  Where some of our kids appreciate ceremony and an appropriate moment in the spotlight, Matt has always eschewed such things, tolerating them at best.  We have tossed around several ideas as we have considered what a meaningful "graduation" might look like for him as a homeschooler.

He has elected not to participate in our local Christian homeschool group graduation ceremony for personal reasons that have to do with his strong faith and differing perspective around several issues.  After talking it through, he has decided that he would like to have a small dinner at home with a few friends who have made a difference in his life, and then he will accept the offer to have his diploma publicly conferred in church in Massachusetts when we attend our friends' high school graduation.  Simple, little fanfare, and he will be happy with it.

Electing to once again walk the road less traveled, Matthew is crafting his own post-high school education.  Dominick and I both trust him implicitly, and he has earned that trust many times over by proving his self-motivation and follow through with self-directed learning.




Utilizing several online resources, including IT Pro TV Online Video Technical Training, he will be working toward exploring the ever changing field of Computer Science.  In other words, he is not going to attend college or trade school but is going to cobble together an educational training track that allows him to delve into everything he wants to learn, including programming, web site design, networking, cloud computing, design, and more.  The resources online are infinite, affordable or even free in some cases, and he wants to obtain as many certifications in these areas as he can.  He is also going to look for brief internships, and develop his own ideas into project based learning.  It is his hope that he will be pursuing his pilot's license through Civil Air Patrol, which has eluded him this past academic year due to instructor issues.  He is also interested in drones and the uses that are being explored for them.

It is easy for Dominick and I to feel comfortable with this unusual direction for him that is non-linear to some degree, and totally self-directed.  Working on his own, he has already earned one certification from COMP-TIA, the main certification entity employers look for in general learning for the computer industry.  He has also already taken two full years of AutoCAD and may pursue certification in that as well.  He has already learned a programming language on his own, Python, and is currently writing his own first invoicing program for himself, learning through trial and error.  He is going to look into Geographical Information Systems (GIS) which is surveying using GPS technology.



In our minds, this IS college for Matt, just in a nontraditional form.  He and I have been playing around with language that will help us easily explain his direction and focus to others over the next few years.  We have agreed together on our expectations for the next 3-4 years as he immerses himself in learning full-time and continues to live responsibly at home.  He will be working very part-time at the liquor store (his back issues make it difficult to stand for any length of time), do store accounting work at home for us, and will continue to pick up computer customers here and there as he can, assisting people with their computer and wifi needs in their homes, training them, etc.  He has had a handful of customers this past year.  He also strongly desires to continue volunteering at Sharing Ministries assisting with administrative tasks.  He will be a very busy young man!



It was a dear and precious conversation we had this week, sitting before the laptop screen peering at various colors for his cap and gown.  We kicked around wording for his diploma, giggled over tassels, and then I asked him how it felt to be graduating, if he was feeling ready to enter the world.



"I don't feel any different, actually, as I am going to continue what I have been doing all along, so not a whole lot is going to change except for the fact that now I can spend ALL DAY studying the things that I am most interested in!" he responded excitedly.

I said, "It is going to be so interesting to see what you ultimately end up doing after you try enough to discern your main interest.  I have no idea how this is going to work, but I guess we will figure it out, right?"

With the cutest little conspiratorial grin, he leaned into me and with our eye glasses almost clinking he whispered, "Don't worry mom, I've always been your guinea pig, why change now when it has worked so well?"

Part of me will always, always be grateful for this young man who has pretty much always been this content, eager learner who allowed mom to try and fail multiple times, showing me such genuine grace throughout his entire life.

Matthew is a very bright, centered, self-directed young man.  Graduation means he will be unconstrained by the requirements to graduate high school, and I have absolutely no doubt we are in for an interesting ride next year!

Sunday, February 26, 2017

Walking a Fine Line...Together


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

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



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

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



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

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

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

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

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

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

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

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

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

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




Monday, February 20, 2017

Steps to Wholeness


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

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

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

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



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

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

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


Tuesday, February 14, 2017

Seven Years of Valentine's

Seven Years.

Oh, how much has changed in seven years!



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

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



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

Three boys needing two girls to join them!

Modeling Hello Kitty and all kinds of pink attire!

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

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

In the orphanage, final days in uniform.


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

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


First personal PJ's, finally in mom's arms.
The laughter a sign of things to come!


Fun times visiting while in Kazakhstan.



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

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

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





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






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




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

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



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




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

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


Keep that joy!


Live playfully!


Love fully!


You are loved...


Oh, so loved!



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

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

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

And my very first Valentine ;-)

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

Much love,
Mom