Tuesday, June 26, 2018

And Thus it Begins

And we're off!!  Josh, Angie, Olesya, and Kenny are all attending the ELCA Lutheran National Youth Event called The Gathering, which is held in Houston, TX and 30,000 youth from all around the US and even from a few other countries will be attending.  They will participate in worship the likes of which they have never seen before, take part in service projects throughout Houston, and explore their faith in new and creative ways.  Kenny and I arrived early so he could attend a pre-event for teens with disabilities, and tonight he joined the rest of the crew to move on to the main event.

Tomorrow, I move on to a retreat of my own, as I fly to visit my best friend, Candi, and have our second annual girl's retreat where we can both just let go of everything, play a little, rest a little, and talk through so many things that just need talking through.  You know what I mean?

One of the things we are going to talk through is something that happened while here, and I need to find a better way to let things roll off my back.  What I am finding is that the older the kids are, the more bold comments are thrust at me, leaving me disheartened, beat up, and doubting just about everything.  

Without giving personal details about someone, we encountered a woman here who took it upon herself to lecture me not once, but twice, about Kenny's future.  This woman has no knowledge at all about Kenny's brain issues, or his function, but after a five minute encounter she had it all figured out and wanted to make sure I knew it.  She derided me publicly, shamed Kenny making him feel like some kind of Mama's Boy, and essentially tried very hard to act the expert and challenge me.  Sometimes I am absolutely stunned at the things people feel free to say to others.

Oh, how I wanted to attack!  Instead, you know what happens?  What ALWAYS happens...I get hurt, I over-explain in an effort to defend myself, and I walk away feeling like no one will ever understand.  And you know what?  They really don't ever understand.  In many ways, I am punished regularly by people like this who see a public version of Kenny (or the girls) who looks perfectly normal and capable.  What they DON'T see is all that goes into making that happen.  Already on this trip:

1)  He lost two TShirts, eventually someone announced them and he found them.
2)  Someone had to literally JUMP on him and knock him to the ground to protect him as he obliviously walked across the "No Walk" zone under a zip line as someone was zipping overhead.
3.  He forgot his room key more than once.
4.  He took a picture of our room number so he didn't forget it.
5.  He forgot to take his pills, even with a reminder on his phone.
6.  He forgot to shave two days in a row because his routine and location is different and it changes his patterning.
7.  He couldn't find his way around the airport.
8.  He forgot to pack ear plugs that Dominick brought home for him.

And there were more, these are just the things I remember.  To deal with the memory issues and keep him on track, learning and growing, is hard enough, but dealing with others makes it far more painful.  Kenny tried to comfort me as I was crying last night, part from frustration and part from exhaustion and doubt.  He repeated something to me that I said a couple of years ago to him, "I can't fight our brains and the world, too." 

Kenny was reminded of this and really tried to step in between in his gentle way today to protect me the second time this woman came at me, but he was blown over.  The opinions of others sting far more than they ought, but I allow it.  And I discovered something here...we don't really fit in the disabled community because Kenny "passes" too much as normal, and we don't fit in the normal world because he can't really perform as "normal" in many situations.  I was frustrated and hurt after being attacked, and he and I talked about it a lot, as we are trying to find ways to better engage with others as a team, in the ways we will need to for a long time to come.  

This person was pushing the fact that all Kenny needed was a good roommate to help him out, and he would be perfectly fine.  We both laughed at the simplicity of that, like a roommate is going to come behind him and check on his meds, his personal hygiene, drive him everywhere, and more.  Do I want Kenny dependent on us forever?  No, but the truth is, it is that he really will always be dependent on someone. Will that be a spouse someday?  Oh, how I wish that for him!  Will it be a group home?  I would NEVER wish that on him as he really wouldn't fit at ALL in that setting.  And as we talked about it we laughed, thank goodness we laughed!  That young man makes this easier!

We joked about how this imaginary "roommate" would help him address envelopes and fill out forms correctly, which for some reason seem to be tricky for him.  And then he laughed louder and said, "Hey mom, you don't even know about this one!  I sent in my ballot and it came back the day before we left because I didn't even THINK that I needed to put a stamp on it!  Maybe my imaginary roommate can check every envelope I send out, too!"

Humor heals, don't let anyone tell you it doesn't.  

So, I am alone in a hotel room tonight, repacking and trying hard to just shake things off and be able to get my heart into a place where I can be Cindy...not wife, not mom, not teacher, not advocate...just Cindy. Sometimes I lose her in everyone else's needs, and I need to work really hard to find her again.  

Dominick is home with Matt, who just returned from 10 days in leadership at the Civil Air Patrol Encampment at the Air Force Academy, and they are planning on some special Dude Time ATVing, eating pizza every night (probably!!! Hahaha!) and who knows what all else.  Before I even get home, they all head off to be Camp Counselors at La Foret, their United Church of Christ summer camp.  Three remain behind afterward for their own camp experience, and then Josh and I head off to do more filming in Massachusetts for his documentary.  After that, I will be in Denver to be with a friend whose son is having major jaw surgery that is cleft related, offering support and a hopefully a calming presence.  After that, we have a family vacation scheduled locally hanging out at a cabin, enjoying the Colorado mountains.

And thus it begins, a summer of running wild, of each of us having experiences that help us grow, and of serving others.  And in between, we will have lots of laughter, and probably a few tears as we continue to deal with a lot of emotional issues.  That's OK, we are doing the work that needs to be done, and I am glad it is being done now rather than have it tamped down only to reappear later.

Thursday, June 14, 2018

Our Capacity for Love

A rock...a single rock...and my heart chuckled.  We are an odd family, no doubt, and we have a thing with rocks, or shall I say Dominick does :-)  I opened my suitcase this week to grab items for the bathroom at the hotel I was staying at, and this is what I see.  Dominick's running family joke has been to hide rocks in suitcases for kids who head off to camp or other destinations.  It first started when he loaded a ton of really heavy rocks in Angela's suitcase one year, and she couldn't figure out why in the world it was so heavy!  Then, at camp, she opened it, and saw her dad had totally pranked her and packed several pounds worth of rocks.  I can almost hear her regular refrain with the rolled eyes, the huge smile, and the "Oh Daaad!" as she discovered them.  Since then, it has been a thing and several of us have received a special gift discovered after we arrive somewhere, though from time to time I have found a little stash of Jelly Belly's left for me instead of rocks.  This time though, it was a little reminder of how our family "rolls" through the hard times, with love, with the foundation of who we really are, and with a heck of a lot of humor.

Despite how painful emotionally the past couple of weeks have been, or how exhausting the past several months have proven to be, there have been many wonderful things to celebrate, and oh-so-many sweet and tender moments. 

Matt with his special request  birthday dinner of fajitas and I surprised him with my first attempt ever at homemade refried beans.  

We celebrated Matt's 19th birthday early this weekend, as he was headed off to the Air Force Academy to help lead the Encampment being held there for Civil Air Patrol.  Sorry, but it is so hard to believe he is 19 years old!!  The years have passed so swiftly, and he is really all man now, with few signs of boy left.  Yet I was privileged to get to experience that sweet combination of both on our long drive over the Rockies.

Many people never see the Matt we see at home, for in public he is fairly reserved and quiet, a true introvert who is not at all shy but doesn't care much for small talk.  Rarely do those outside the family get to see the kid who is a total crack up, whose sharp mind leads to a perfectly placed quote or joke.  It is only when he is supremely comfortable that the real Matt shines through, the total teaser, the one whose comic relief eases a tense moment.  We also have a couple of extroverted talkers, and in order for there to be space for Matt to share, getting him alone is the best bet. 

My first-home and I have a very special relationship, but far more so than I realized until this week.  Having been old enough to be aware of all the adjustments and emotional work that has gone into helping each of his siblings settle into their new family, and seeing first hand daily the hard, hard work that goes into special needs kids, Matt has in some ways been my closest partner, for he has been there every moment of every school day alongside me, and sometimes offers insights and catches things that help me find new ways of working with them.  His patience has been extraordinary through the years, a gift of time and grace as he sat through conversations that were painfully slower than he needed them to be to allow space for his siblings to learn, develop logic, and gradually accept realities.

So it was with great glee that I looked forward to our 5 hours alone together as we drove in the early morning hours Tuesday morning.  It is a time when he and I can both have conversations of great depth without interruption, without further explanation, without misplaced jokes from others or inane chatter or confusing and disconnected statements being made that one has to work overtime to figure out.  He had joked about leaving even earlier, before sunup, so we could "escape" the madness earlier and have more time to visit, and it was the first time I really saw that it was not only I who eagerly anticipated the time alone together!!

We got in the well packed car, started the engine, looked at each other, and grinned.  We were off!!!  And oh, the topics we explored!  We talked about him for a change, about his future and possible directions, about his desire to learn more about Artificial Intelligence and how he now has a hugely expensive graphics card that can handle the mathematical computations for that learning.  We talked about his "bread and butter" income eventually hopefully coming from web site design.  We discussed current events and the many layers to all that is happening in the world around us.  Summer church camp counseling was also part of the conversation, and how one day he might like to be a camp Director, and would need a "spiritual counterpart" to his organizational skills, and that might just be Kenny.  And, of course, we talked about the family, about ideas for his siblings as they move out into the world, about his "take" on all that is going on for Angie and Kenny right now.

Matt has such a deep respect for, in particular, Kenny's intellect.  He speaks often of how sad it is that Kenny has FASD for he sees how truly exceptionally bright he is, and yet as Matt puts it, how "scrambled" Kenny's brain can be.  On many occasions lately he has spoken of how Kenny is actually smarter than he is, and how he hopes he finds the perfect way to use his gifts over time.  He then asked me, "So what is up with Olesya's thinking lately?  That girl is so off right now!!" and we laughed as only two intimates can, who love the person being spoken of, and sometimes suffer right along with her.  The developmental delays and highs and lows of FASD are so obvious, and so frustrating for everyone.  I wish he had been here last night to laugh afterward as it took me over 10 minutes to get out of her with constant questioning exactly how badly her injured wrist was hurting her.  Seems like a simple question until you get into the kind of circular discussions that occur on a daily basis here! Hahaha!  All you can do is laugh, but it is beyond exasperating sometimes. 

Touchingly, as we were at lunch before dropping him off, he realized that due to his and my travels, it was going to be over a month before we would see each other again, and that hadn't really hit him until that moment.  For the rest of my life, I will never forget how that truly seemed to disturb him, how my most independent and adult of five kids looked at me and said how much he will really miss me, all joking aside.  I think in that moment we both realized we have truly crossed over from child and parent, to dear and close friends who deeply enjoy one another's company, and miss one another when not around...even if sometimes we are merely ships that pass one another throughout our day.  In the midst of loving craziness, we are each others' touchpoint, he offers me affirmation that indeed, I am not nuts when I see something odd going on, he is my encourager and comic relief, he is my mature and present voice when brain dysfunction all around me tries to drag me off. 

We authentically not only love one another, we are at the point where we have an abiding friendship, and appreciation for what the other brings.  I will always be mom, but in this moment, I realized I will have the great blessing of always being among his closest friends...and now it is appropriate.

Multiple times he spoke of how that may be the longest time we have been apart and how weird that would be, and I teased him that he could reach out anytime with a text that was longer than the word "ok" ;-)  He said he just might have to, as that was simply too long for us not to connect, and my heartstrings were tightened just a bit more.  At the drop off there at the Academy, he hugged me more tightly, he grinned a bit more, and he said once again just how much he was going to miss me...and I think that new awareness was a delightful surprise to him, too.  Funny how at 19 years old, THIS drop off felt for both of us a lot like his first church camp drop off when he was 8.  So many drop offs in between were more casual, more routine, but this was different in such a special way.  With a complete lack of embarrassment, he told me how much he loved and appreciated me, and would miss me.  Once again I was grateful that our teens have never, not once, reflected any awkwardness or shame over public displays of affection with their parents...a special little gift I have always thanked God for as I have seen the pain of others who are often treated with great disdain by their teens who are struggling to find independence.  I have been spared that one, thankfully.  And I also have a pretty independent set of teens, at least in the ways they can be.  Josh, at 15,  is incredibly independent, and yet yells back unabashedly in front of his gang of friends, "Love you mom!" anytime I drop him off.

The goodness that is always in the midst of hard emotional work has been present in all kinds of ways, aside from deep conversation and long drives.  Joshua has had quite a week!  How proud of him we are, our far more "typical teen" who is the youngest, and yet in most ways is honestly the only one who is experiencing a more traditional teen life.  He saved up and purchased his first REALLY big item, a dirt bike he has been saving for.  He has relentlessly been checking Craig's List for 6 months, took a safety course before even having a bike, and the very hard earned money he has been saving since he was 10 years old or so was spent on this beauty: 

He was so excited, and we were for him as well!  Dominick drove him a couple hours away to check it out, and Josh even negotiated a lower price on his own :-)  A chip off the old block and fearless when it comes to things like that.  He paid for his own registration, and is purchasing a new helmet today. 

He is already learning so much about maintenance and digging in to work on his bike!  It is a 2009 Honda 230cc, and only had 26 hours total riding time on it.  His patience in waiting for just the right bike really paid off, as this was almost showroom clean at half the price.  $1700 is a LOT of hours spent washing dishes, waxing store floors, and detailing cars.  This wasn't birthday money saved or cash gifts offered at any time, but was representative of hundreds of hours of arduous work, and it is a gem.  He is learning about cleaning carburetors, adjusting breaks and more.  Breaking out the owner's manual, he didn't hesitate to get to work and start learning more.

Our family can not afford such extras for our kids, and over and over again I find I am so happy about that, as they have all learned the value of hard work, how hard it is to earn a buck, and they reflect a very responsible and frugal attitude.  They may not be independent yet, but they are all extremely thoughtful in their spending and never, ever ask us for a thing, trying as best they can to provide little luxuries for themselves, and somehow still seeming to offer meaningful gifts for holidays.

Dominick found this out as we celebrated Father's Day early this past weekend, along with Matt's birthday, since our schedule is nuts the next six weeks.  Here he is opening his surprise gift:

The kids and I all chipped in and purchased parts for Matt to build him a gaming computer!  The boys all game, and Dominick has a very slow second hand laptop, so they are preparing him to be able to really compete and play with them.  It will be built when Matt returns, and then I am sure hours of fun and laughter will ensue as, honestly, the boys kick his butt and he is killed over and over again on screen...hahaha!

Josh had another big accomplishment this week as he completed College Algebra in his freshman year of high school!  Soon we will schedule a CLEP test with the College Board (CLEP tests are overseen by the same entity that AP classes are, and a CLEP test is another way to get full college credit) and see if he can get college credit for it.  This also represents a ton of very hard work!

This past weekend we had another moment to simply let go of all the stress, enjoy ourselves, and let God slip in around us.  We so needed a mental break from all the emotional challenges, and brain dysfunction lately!  The kids participated in a fund raiser that was a combined one for the two churches, ours and another, that are sending kids off to Houston in two weeks for their enormous denominational Youth Event which will have 30,000 kids in attendance!  This was a spaghetti dinner and talent show, and all of us got in on the action and work in some way or another, as we helped set up, the kids served, and we were involved in various acts.

It was here, in the late afternoon glow among new friends that for the first time in a very long time I was able to relax.  I saw all our kids passing a beloved infant around, grinning from ear to ear, serving others as they played waiter and waitress for the evening.  We all howled with laughter at the boys and their "UnMagic" act which was SOOOOO bad it was hilarious (and intended to be just that!).  I sang as part of a quartet that included some of my favorite people. 

One of our strongest, most certain family phrases is "Hard isn't bad, hard is just hard."  but it also is "Love Wins".  Another also ought to be, "Laughter and fun ease the struggle."   Sitting there at the table, looking around the room as I saw our young adults mingling, there was a beauty that I am sure only I could identify.  They will be OK, God reassured me.  It won't be easy, and we aren't even close to being "finished" (is ANYONE ever truly "finished" if they are still breathing??), but there is so much goodness here, each of them is deeply kind, warm, caring, and committed.  They are diligent workers, care about community, and "see" others in ways some rarely do.  I was touched as I saw Matt approach one of the elders of our congregation after hearing from me that she was very nervous about her act telling jokes (she rocked it and was ABSOLUTELY hilarious!).  He took it upon himself to immediately go encourage her, and no doubt admit he was nervous about their supposed act, too.  I took heart as I saw Olesya playing with the baby, this the girl whose former life has impacted her so much that says she may never want to get married or have children and yet she was utterly delighted and that too, is growth.  I saw each of these beautiful souls and was filled with more love than ever before for them, and felt a wave of gratitude for all we have gone through, and all we still have to walk through.  As Dominick and I roared over the boys' total lack of talent yet quick wits (a magic act during which homeschooling, being Asian, and Advanced Directives were all mentioned), and we saw others laughing with us...not AT them...we knew we were in the right place, that home is where we all are, that others will join us on the journey to make it all just a little softer.   We can be all of who we are and still be OK.

And I fell a little more in love, not just with my own family, but with others all around us, something I didn't think was even possible.  I should have known better, our capacity for love is infinite...

Saturday, June 09, 2018

A Sacred Pilgrimage

It is almost midnight as I sit here, laptop screen glowing before me.  Everyone has settled down for the night and a quiet peace is present.   My brain doesn't quite want to settle down as quickly as everyone else has, and the thoughts that flit around inside bounce and jitterbug despite my best attempts to woo them to sleep.

Life in our home is intense, and yet there is a gentleness that hovers around us. In my mind,  that gentleness can only be the presence of the Spirit as it calls us to be our better selves, and compassionately wraps us up in reminders of all that is good and right and healthy here.

It is hard to explain, how our laughter over dinner can help us move through the painful times, and how our dedication to being as authentically in relationship with one another is our salvation.  We don't ignore what is real, we simply digest it, accept it, and work with it to the very best of our ability.

And we take care of one another.

Angela is in a place of great heartache right now, and has emotional work to do that many would never have the strength to approach, let alone walk through as determinedly as she is and will continue to.  How I admire the sheer courage of my daughter, who from her very first moments with us had to fight demons no child should ever have to fight. 

But another mantra of our family is "Love Wins", and over and over again we see how true that is.  For us, this is not a mere catchy slogan, it is sometimes the lifeline we cling to when all else feels as if it is falling down around us.  We are reminded over and over again how following the radical statements of
1 Corinthians 13 really can make all the difference...and it is so tangible and obvious when we don't.

Love is patient,
Love is kind,
It does not envy, 
It does not boast, 
It is not proud. 
It does not dishonor others, 
It is not self-seeking,
It is not easily angered, 
It keeps no record of wrongs. 
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
Love never fails.

Whether you are a Christian or not, this "Love List" sure is a powerful guide for how to do love well.  It can also be far harder to live into than it first appears to be.

I have been loved very well this week despite feeling like I am drowning at moments.  I have been kept afloat by the lifeline thrown to me in the form of Matthew, with a little assist from Kenny, as he repaired our dryer...a simple act of service that solved a problem, and I didn't have to be involved in it.  Also, it is reflective of their adulthood these days, that they see a need, and just get the job done.

Heating element was dislodged and tangled up, the entire part needed to be replaced.

They are deeply good, kind young men.

Olesya...oh my, that dear daughter of mine who speaks with her actions rather than words.  She is well aware of how much of my energy needs to go into Angie right now, and how she herself was once in the same place in terms of acceptance and sudden self-awareness.  Lessie has stepped up to help cook every single night, and even helped shop for many of the grocery items.  She also deep cleaned the house, and in all kinds of little ways is doing her best to make certain I have the time I need to be present and attentive to Angie.

So, what are we doing?  How are we dealing with things?

We are digging in, in true LaJoy style.  Angie asked me last night if we were going to begin working on an FASD (Fetal Alcohol Spectrum Disorder) Workbook for young adults I had located and printed out almost a year ago.  She is ready, it is time, and now we can make real progress in understanding and taking an unblinking look at their future.  That's my girl!  So, this morning, that is what we did, as Kenny, Angela, Olesya and I all sat down at the kitchen table, and launched our summer FASD exploration.

But before we opened the workbook, I asked them each to take a piece of lined paper and write their name on the top of it, then pass it to the next person.  I then had everyone write for 3-4 minutes and list every strength and gift they could think of for the person whose paper they held.  Each named sheet was passed around, and bullet point items were shared about the positives of each person.

Someone commented that they kept thinking of things to add after each sheet had been passed to the next person, that there were tons of things to put on the list.

"There will be lots of things we are admitting are hard for us as we move through this workbook, and we already know what many of our deficits are," I said,  "But I want you to remember, you are more than your disability, and you each have tons of gifts and areas where you excel.  Keep this in mind as we get very honest and real about all of this.  Parts will be hard to admit, and some things will be depressing to recognize as being things you will struggle with the rest of your life.  I want you to place these as the first page in your binder, and every time you feel the negative is pulling you down, I want you to read this list and remind yourself of all you have to offer the world. There are huge strengths each of you has, and we didn't even have time to write them all down!  We will be honest, and we will be very real about things, but we will be just as honest and real about recognizing your positives as well as the challenges."
With that, we opened the workbook and began a new journey of preparation for their futures.  This workbook can be found here and includes self-assessments, reality checks, and lots of areas to think about and discuss in planning for safe, productive futures for those who have FASD.  We worked through the first few pages slowly, methodically, and shared our fears and hopes.  Already in the very first day we began learning from one another, speaking truths that are hard to hear and yet so necessary, admitting where weaknesses are and listening to statistics that are suddenly far less abstract than they were a week ago.  The real world will be very arduous, and we now have a sense of just how problematic things like employment, safety, and other situations will be.  Angela's very recent experience makes it all far more concrete, and they need it to be that way to grasp it.

They are  determined, these three fighters of ours.  They know the odds are stacked against them, and they understand the randomness of brain function that will plague them their entire lives.  Three weeks ago, Kenny attempted to address an envelope on his own four different times, and got it wrong each time.  Olesya is trying to cook for our family this week to help me, but is struggling with calculating timing correctly, not because she doesn't have the information, but because it doesn't add up in her head right.  Seemingly simple things are not so simple in our home, but we keep working at it until we have eventual success, even if we start all over again the very next time we have to do the same task.  Today Kenny had to be reminded four times over dinner to wipe his lips, to not speak with enormous mouthfuls of food...something we had corrected long ago but now is somehow forgotten.  He also kindly took out the trash when he saw it needed emptying, but had to be reminded two times to finish steps of the task...don't forget to replace the bag...you forgot to put the bags back and close the cupboard door.  This is a daily part of our life, one I am so used to I barely give it extra thought until I am extremely tired and wondering why.  

This evening, after helping me with grocery shopping, Angela and I pulled over while she ate a fast food meal and again we were in tears as she shared her heart around her birth mom, around her deep love and care for me and how she doesn't want to lose me by putting walls up or want me to think she has ever faked her love for me because of those walls.  There is so very much going on inside for her, layer upon layer of confusing and conflicting emotions and thoughts.  She is amazingly good at expressing herself when she taps those feelings and is willing to share.

We have a herculean task before us this summer, The Summer of Acceptance...The Summer of Openness...for the truth of it is that Angela and I, with Kenny and Olesya as co-sojourners, are on a Sacred Pilgrimage of the Heart.  We are going to work hard to heal deep wounds, to accept hard truths, and to walk into the fall with a new spirit of relief and anticipation of the wonderful life ahead of her.  But as Matt told me this past week as we discussed this situation, there are no shortcuts and you have to do the work...all of it...or issues will return with a vengeance.  You just can't do the job halfway, and we won't.  We can't.

Thus begins our Sacred Journey.  May we have light shined on us from all directions to light our way, for this is in many ways a very dark tunnel to enter.

Wednesday, June 06, 2018

I STILL Wouldn't Change a Thing

Grief comes in waves, much like dawning awareness.  The past few weeks have been so very hard, and I have been trying to share but haven't seemed to be able to. Sometimes you have to just sit with "it", whatever your "it" happens to be.  Then, sometimes you have to purge, to allow the gremlins loose so your head doesn't explode.  I am forcing myself to sit at the keyboard today, for writing has always been the way for me to clear the fog, to find release,  and on a few very lucky days, to gain inspiration.

I want to make it absolutely clear that I am sharing with explicit permission from Angela, who understands that in many ways, our family is blazing a trail for those who adopted children younger than her, and who need to feel less alone.  I have spoken with literally hundreds...if not thousands of adoptive families through the years, and I have heard over and over again how our sharing has helped them get a diagnosis, better understand a situation, or parent their child better because they have learned from our mistakes and our successes. 

This will not be eloquent, for I am far too tired, far too overwhelmed, and far too despairing to care much about literary devices.  I can't seem to stop the tears from falling, new waves themselves.

For the past several days I have held Angela in my arms over and over again, as she has sobbed, trying to make sense of a brain that she thought performed far better than it does.  Denial is a powerful tool for coping, but eventually the wisest among us (and trust me, this girl is far wiser than most) let go of clinging so tightly to that protective wrap because they know it is just a ruse.

For years, Angie has lived with the illusion that many of us did as well, that she was the least impacted by Fetal Alcohol Spectrum Disorder (FASD).  In comparison to Kenny and Olesya, who she could clearly see struggled in all kinds of ways, she admitted to feeling I had sort of lumped them all together and that, in fact, she really didn't have it at all.

She didn't see what I saw, what any of us saw, and her higher than normal emotional intelligence offered her the chance to masquerade as undamaged, though her struggle with logic and memory from time to time slightly lifted the mask.  As her educator, over and over I saw signs that concerned me.

Several things this past month have brought Angie to a place of painful realization, that she indeed has far more challenges than she had imagined.  When your academic environment has been fully adapted so you can learn as well as possible, and when you have English Language Learning in the mix, it is easy to dismiss the daily hiccups you experience...you have no real basis for comparison because some of your siblings also struggle, and sometimes in more obvious ways than you do.

Many might accuse me of overprotecting her, but what those who are ignorant of the facts about FASD don't understand is that this never gets better and most kids with FASD struggle to learn well at all.  This isn't about making it too easy, it is about making it possible to learn at all.  And learn they have!!  When taught in the ways the FASD brain needs, remarkable progress can be made.  Visual supports, small bite sized chunks of information, recognizing that traditional textbooks will never, ever work, using the Socratic method to embed information and help develop logic, repetition to a maddening degree, and much more has made all the difference.  You can't over-protect brain damage, you simply have to accommodate it as best you can, and try for gains in all the areas where there are strengths.

And you can't over-protect poor decision making skills, slow processing speed, and random memory loss.  The data is stark and as our 3 FASD kids mature, we ALL see their need for far more protected environments.  Angie learned how quickly her brain can trick her recently, and how even she could fall prey to really poor judgment.  Thankfully, nothing happened, but it was a wake up call, not just for her, but for her entire family.  There were test results from academic testing that were the first real shock for her that revealed in black and white how concretely her logic fails her on a regular basis, and that her confidence in her performance was misplaced.  A couple of long tearful conversations with, yet again, more explanations about how the FASD brain works, or rather doesn't work as expected, and there was a crack in the veneer of denial that has been in place for years.

How I despise this!  How I hate being the bearer of hard news repeatedly in my role as educator, and not just the mom sitting side by side receiving the news together, being the comforter and not the "bad guy".  This daily dance between mom, special ed teacher, gifted ed teacher, therapist, advocate and encourager is so damned hard.  Sometimes, more than anything, I want to be just Mom, and yet that really can't be because our kids literally can not survive, let alone thrive, in the public education system.  And there are no local therapists who work with the unique combination of trauma, loss, PTSD (Oh yes, that is rearing its ugly head as well for Angie, and it is real and POWERFUL.), adoption, and Fetal Alcohol Spectrum Disorder.  Heck, there are not real specialists we can find in the entire US (Trust me, I've tried).  So, I end up shape shifting, almost hourly.

I sometimes wonder what average parenting is like.  Parenting where you are not worrying about the next major surgery, or the next learning disability that might appear and push your kid over the line from possible independence to no independence.

The hardest part was yet to come, and though in degree it was unexpected, that it happened at all wasn't, at least for me.  Angie has been working for a family friend visiting as a companion and occasional caretaker for their aging mother.  She has been doing this for over a year, and enjoys it very much.  In order to help this family pay for the care Ang was providing, they asked if she could become an employee of a local home health care agency, and in doing so Angela could also gain some valuable experience, go through an interview and training process, and take a real firm step into adulthood.

Day 1 of training was a little disconcerting, as it was a situation where a binder was thrown at her and she was told to read it, then take a test...no talking through material, no real interaction.  The afternoon was better as she was shown how to properly move clients, etc. and it was all interactive and visual.  She came home talking about it a lot, but underneath it all was some real anxiety I was seeing, and we talked a lot about Day 2 of training, which was yesterday and only a half day.  She was exhausted from thinking so much and having to be on high alert, no doubt in part to hide some of what wasn't "clicking", but we all hoped the next day would be better, so off to bed early she went, and awoke with a positive attitude.

She got through Day 2, and when she arrived home, she was a little more subdued than usual, and those who know our Angie would immediately recognize that her light was dim...she brings sunshine wherever she goes.  She sat down at the table with me, opening the training materials to share them with me, and within a mere couple of minutes, she looked up at me and with tears said, "I really do have a disability, I see it so clearly now." and then as she tried to hold it together she explained how the other woman who was training with her said it was the best job training she had ever had, and how lost Angie was throughout a lot of it.  I tried to calm her down and we looked through her training materials to make a list of questions she could ask, and discovered she hadn't asked about or clarified even simple things...like how much per hour would she be earning.  She was confused about her time sheets, terminology, and more.  We added things to our list, but were interrupted by dinner, then continued the conversation afterward.

Oh, the heartache!  I don't have words for what I felt, what we experienced together.  She said she now understood just how much I had adapted things at home so she could learn, and she shared how very scared she was about her future.  For many years as I have been trying to prepare the kids for post-high school, when I encountered blips with brains or obvious areas where a boss or supervisor would never rework things for them, I pointed it out and explained that bosses don't give you third and fourth chances to get things right, they don't follow you around and correct how you are doing something, it is a fast pace and you need to be taking in information accurately, and doing the work efficiently because the world isn't easy, nor is it kind.

She referred to all those years of my gentle preparation and she choked out, "Today I really saw what you have said, that real jobs and the real world are going to be very hard for me.  I have really been in denial."

And this was training for one of the lower level jobs she could ever have, not even requiring CNA training.  We talked about the reality facing her, our shared concerns, and about all that was hard.  I asked her to help me be able to better equip her, and to help me make a list of what normally helps.  She admitted she probably only truly retained about 15-20% of the information imparted, and already she had lost a lot from the day before.  She realized immediately how differently we teach at home, and I emphasized that she CAN learn and IS smart, but her brain really requires a different pace, a visual presentation of information when possible and when not possible the chance to think about it and work with the information verbally in discussion in order to hang on to it.  Even then, she loses information more frequently than someone with an average brain does. 

I decided I needed to bluntly ask a question.

"Do you think we should stop this now?  Is it too difficult?  Will you be unsafe with others?"...and how hard that was to ask, knowing a "yes" would feel like defeat, and yet knowing that a "no" might lead to being fired quickly (she had already said they spoke often about all the infractions that would get her fired, some fairly minor) that might prove to be an irreparable blow to her self-esteem.

With a quivering chin and tears streaming she said, "Yes, I think I need to quit.  I can't do this."

And in that moment, I ached more than I have in years and years, perhaps it compared only to the ache I felt leaving her and Olesya behind at the orphanage all those years ago when it looked as if their adoption was not going to happen, because Angela simply couldn't break down the emotional walls and trust a mom again.  I held it together, and didn't cry much in front of her, but later after she went to bed, I couldn't stop the tears...thoughts kept rising, and fear at a very deep level returned.

You see, I have known this was going to be true for years, and in fact, since Kenny was about 10 years old Dominick and I have had conversation after conversation about whether he would ever truly be able to hold a real job and make it in the world.  With no diagnosis to come for another 7 years, I have lived with a low level panic that arises now and then when brain function is almost non-existent, and that awful hollow feeling has only increased with the addition of the girls and our growing suspicions over the past 8 years of the impact alcohol in utero has had on them.  My gut has screamed at me from time to time, and yet I have held out hope.  "Maybe I am wrong, maybe I am over-exaggerating the effects, others see them as perfectly normal and doubt me all the time...and don't hesitate to make that doubt known.  Maybe I am seeing something that isn't really there."  And Angela was the one we had all thought had the best chance of really making it to a somewhat normal adult life, maybe slower, but a good chance.

And the very fear I have lived with can no longer be tamped down, I can no longer hold out hope of "normal" for my three beloved ones.  I wasn't unrealistic, I was simply hoping against all odds that maybe...maybe...

All it took was the very first opportunity for the point to be made crystal clear, and all hope of "normal" flew out the window. 

Watching her grieve is so very painful, and joining her in it as I also grieve is important.  We are not hiding from it, we are not sugar coating it, and we are not fantasizing about it.  This was the first real test, and as I explained to her, she didn't fail, we simply have new information to help her move forward.

But that matters little to a 20 year old beautiful, compassionate, BRIGHT young woman whose fear for her future is suddenly, palpably, very different than she had hoped it would be.

"I feel so lost."

"It is like I don't even know who I am.  I need to find me."

Oh, sweet daughter of mine, how I wish you could be spared this, and yet how much I know you need to see yourself as you really are...and I don't mean just deficits but all your wonderful strengths.

Additionally, LOTS of mixed up feelings about a birth mom who is sort of missed, sort of blamed, sort of feeling present with us despite being far out of the picture is making it all more convoluted.  This is not a straightforward process, and her birth mom was incredibly violent, further adding to the emotional soup right now.

Yes, we have a lot of work to do.  No, no one would realize it when they are around Angela, because she is all this, and so, so much more.  Others think that because our kids are 19 or 20, that we are past all this.  Yes, I am affirming her hourly.  No, we are not going to "try again" immediately.  This is not a horse that has thrown her and she needs to get back on, this was the realization that the horse was really a car and she has no idea how to drive it.  She needs time to process all that she has become aware of, she needs time to heal from the pain of realization and shedding denial, and she needs time to step back and be a younger version of herself a little while longer while she does the healing and oh-so-necessary work of becoming a new, tougher and yet more
tender version of herself.  And we will give her that time.  She has only had a family 8 years, and so much has been done in 8 years...language acquisition, processing of adoption, learning what family means, starting at pre-school level with her education (Olesya as well) at almost 12 years old, and so much more.  It isn't enough time, and she needs what we have an abundance of...love, space, hugs, nudging, guidance, and time.

And you know what?  Even in this moment, God is with us, and in a less emotional but so sweet moment this afternoon while waiting for the boys to be done with their orthodontist appointment, we ran to McDonald's after she dropped off her work binder and materials and let them know she wouldn't be able to continue.  We sat there, this resilient, hurting woman-child of mine, and reminisced, and shared, and spoke of truths.  Unofficially, we gave thanks for all of these things:

1)  That we have the relationship we have, that we can comfort and nurture one another through hard realities.  That we turn to each other and trust one another completely and intimately.

2)  That despite a slip up the past couple of weeks, her own personal wall has been torn down, and she can be her softer self...that it is safe, though from time to time she needs to be reminded of that.

3)  That my own difficult growing up years have helped me parent differently, with great intention, and with insight I never would have had if things had been easy.

4)  That God being in the midst of our family has literally saved us, over and over again.  Families like ours aren't making it.  Multiply FASD times three and the horror stories I could share would freak anyone out.  Anger, violence, rage, sexual predatory behavior, drugs, alcohol, unwanted pregnancies, loss of relationship, and so much more are all things we have avoided by being educated about FASD and aware that we could create far more problems than we already have.  Without God, without support from others, without  calling ourselves back to one another with great regularity, we all know we will fall apart and our kids will statistically end up on the streets or dead.  Not a single one of us disregards this now, and Angela fully saw how vulnerable she is.  And she does have God to rely on, as does our family, and we can trust that though we can't see a way through, or futures are momentarily seemingly out of reach, we have lived as The Family God Built long enough to learn to trust that we don't have to make things happen every time, we simply need to say yes to every opportunity.

5)  That she and I were meant to be mom and daughter.  Period.  And that her feelings about her birth mom have nothing to do with her feelings about me, and I can feel that to the core of my being, and she can feel safe and not hide anything from me about her confusion over that part of her past.

6)  That we have others in our lives who care about us, even if sometimes they don't really understand or even see all we deal with, they care about us, are there for us, and would without question show up if we needed them.  That alone is a gift of great goodness in our life.

7)  That we can dream new dreams, that we can take what we know now and use gifts and talents to move forward in new ways.  That we have the ability to work hard, love even harder, and improve anything.  We can't fix it, but we can work with it.

8)  I personally give thanks that, despite the mourning of an imagined life of less challenge, Angie "got it".  We can't ever work with what is denied, and we are running out of time.  This was going to happen one day or another, and I am so very glad it happened while sheltered in the arms of her loving family.

9)  That our family is strong, resilient, connected, and blessed. 

I won't lie here, I am scared in ways I never imagined being scared.  Suspecting that your children may struggle to obtain and hold a job is far different than seeing it first hand.  80% of all adults with FASD are incapable of holding steady employment.  That is now more a stark reality for us than ever before.  I feel a sense of responsibility that is heavier by the minute, for there are absolutely no services in the US, there is no help, no advice, and relatively few adults who are stable with FASD to learn from.  As usual, we are outliers, and Dear God I hope we remain it, for being an outlier in this situation means we are experiencing some success and my children are not dead, incarcerated, or on the streets.

I have no idea at all what we will do.  This coming year is Kenny and Angela's senior year.  The pressure is mounting to figure something out, but we are going to step back and regroup.  I am going to make sure somehow my own well is not dry...because right now it is more than it has been in a very long time.  But we are going to take it one day at a time, view trial and error not as failure but as information gathering to help us along the way, and I am going to do whatever possible to put my brain in overtime eventually to see what we kind of realistic plan for the future we can come up with.

Regardless of all we know, regardless of what our lives will never look like because we chose a different path, I wouldn't change a thing.  Dominick and I each love our five with a passion that lights a fire in each of us to provide for them, and to help them live into meaningful futures well suited to each one.  If someone had told me before Angie, Kenny and Lessie had come home that they would have FASD for certain and we would be parenting perhaps forever, I would still grab my suitcase and run as fast as I could to catch that plane overseas.

I would be a lesser human being without any of them, I have grown in ways I never imagined I would or even knew I needed to, and I simply can not fathom a life without them in it.  Matthew and I have talked recently and he said much the same, that all of us are who we are in large part because we have each and every one of us.

And I like who Team LaJoy is.

As Angie and I said with a renewed sense of understanding today, my personal phrase for our family is ever more important:

Hard isn't bad, hard is just hard.

And with every tear shed, with every new challenge that arises, I know that hard never broke anyone, and we will make it.  I may not have a clue how we will make it, but we will.