Monday, September 14, 2015

Falling Apart, Accepting Truths

He sits beside me, ever taller, ever lankier, and he searches for the words to express his thoughts, words that so often fail him by eluding his mental grasp regardless of the effort put into chasing them down.  This time, however, as he has thought a lot prior to speaking,  the words flow easily...too easily for all the weight they bear.

We are traveling in every mom's secret Conversational Weapon, the family minivan.  How many discussions of import have happened side by side, where eye contact is lessened and tongues are loosened?  How have kids through the ages not foreseen that their secret hearts will be revealed solely because they feel safe enough to speak their truth in a passenger seat?  Be it a '57 Buick or a 2007 Dodge Caravan, teens are helpless when sitting to the right of mom, her attention seemingly divided between road and word.  Walls develop cracks during those drives, just wide enough to allow an opinion to be heard, and fears are expressed in seemingly casual language that any self-respecting mother can hear with a single syllable uttered.

Sometimes, though, the heart and mind rush like water released from a dam that cascades over a spillway, and it is all the beloved son or daughter can do to keep themselves from tumbling...tumbling...tumbling over their own thoughts, so eager are they to be joined in their misery, wishing for reassurances that their imaginings really are blown out of proportion, and seeking the blessed relief that comes to us at any age when we hear our moms say, "Don't worry, honey, it's all OK."

But what do you do when it's not ever going to be all OK?  How do you respond when your son turns to you and asks the question he already knows the answer to, and wishes with all his heart you would be able to wave a magic wand and **POOF** a different result appears?

It was a week after having sat Kenny down to talk openly and honestly about all I had been learning that pertained to FASD (Fetal Alcohol Spectrum Disorders).  I knew at the time that this would have to be digested in small chunks, that we would most definitely be revisiting this as soon as some of what I had shared settled in.  I spoke to him about shocking statistics, about patterns of behavior and deficits that finally fit him, and about the disturbing outcomes for the overwhelming majority of folks affected by FASD.  Kenny is a young sage of sorts, a bit of a philosopher who needed time to ruminate on all he had heard, but I knew in time it would be brought forward.

And here we were, and bring it forward, he did.

"So mom, I have been thinking a lot about what you said to me about my brain, and all that doesn't work right, and what my future looks like." he said.  "It looks like this is really what is going on for me, and it looks like all your worries were not overblown.  Is it really true that so many people never make it to living without help?  Do that many really end up on the street or in jail?" he asked.

"I'm afraid so, Kenny, and it makes sense.  People with this many multiple challenges with their brain just can't pull it all together to create an independent life that is safe.  It's not their fault, but no one understands why they can't do the things everyone else does, and they can't easily hold jobs or take care of themselves.  It is terribly sad, but it is true, and in your heart of hearts, you know it, too." I replied.

This conversation came after a very difficult 3 or 4 weeks, when Kenny's brain seemed to have completely short circuited, something that happens with regularity but not usually to this degree.  We are assuming that puberty arriving full force has something to do with it, but it has been almost impossible at moments for his brain to function.  We have had everything from forgetting how to form letters, to being unable to recall what items make up a salad, to leaving the oven on, to saying, "Hey Mom!  Guess what?" and when I immediately respond, "What?" there is a blank stare, a panicked look, and a comment of "Oh man!!! I totally forgot!  Why is this happening to me all the time right now?" There has been an uptick in impulsivity, mostly in the morning, as his worsening ADHD symptoms make it difficult for him to stop interrupting others, playing with things, etc.  At the dentist this past week it was like being with a toddler, as he had to touch and play with every single item on the desk in front of us as I was trying to make arrangements for future work.  At WalMart I had to grab him and pull him back from an SUV that he walked right in front of without looking as we exited the store.  Having a conversation with him at home with the slightest bit of background a dishwasher, a TV playing quietly in the other room, someone down the hall talking...has me constantly repeating myself, as "Huh?" has become a refrain.  It has been so challenging that Matthew even had a talk with Dominick, whose long work hours have kept him away from home a lot, and Matt told Dominick just how hard it has been on me with Kenny, and that he needs to understand that things are escalating right now and my frustration level is justified if I seem to have less patience.  It touched me that Matt cared enough to speak to his Dad to fill him in.

It is hard right now, and I don't know when it will get easier, or if it will ever get easier.  Kenny is this amazing young man, and FASD doesn't necessarily always mean a low intellect, it is more that the brain malfunctions, and he can't organize his life, recall patterns of daily living, can't retrieve words, and truly can't take more than one step instructions or complete even the smallest of tasks without being drawn off course.

I have tried to write about what this feels like, but my heart has been aching too much to do justice to it.  How do you describe what it feels like to have your 16 year old son look over at you and ask, "Mom, will anyone ever love me?  Will I ever be able to have kids of my own?  How can I when I can't even take care of myself or keep myself safe?"

The silence descends as I try as gently and honestly to answer, "I just don't know Kenny, no one can predict their future, whether they have challenges like yours or not.  The one thing I do know is that God continually uses you, and will always do so as long as you say 'yes", which you always do.  Other than that, honey, there is nothing that is guaranteed.  Many people never get married because they just don't find the right mate, and that has nothing to do with disabilities."

Quietly he responds, "Yea, but I read that book and a lot of those profiles online of people like me, and none of them were married or had kids.  Funny how that is the thing that is bothering me the most right now, thinking that I might never be able to be a dad.  I ought to be more worried about being able to support myself."

Errand after errand was run, and each time we got back in the Magic Talking Machine, the subject was explored from another angle.  I explained to him that our job was to help him lead as independent a life as possible, but the older he was growing, the more it was obvious to all of us, even him, that full independence was not likely in the cards for him.  I shared that he was too high functioning and bright for many options, and wouldn't qualify for services, and that there were few places for someone with his abilities AND disabilities to live.  Explaining that there were only a handful of group homes, etc. that might accommodate someone with his needs, I let him know that if that sounded like something he wanted to explore in order to have some independence in his future, then I would do more research and try and get on waiting lists, etc. but that odds were slim of being accepted into any place as there were too few homes and too many people in need.

He wrestled with that one a moment, and then looked over at me and asked, "Do you and Dad care if I live with you?  Will I be a burden on you?" and the tears started to fall.

"No, Kenny, it is never a burden to be with someone as interesting, as intelligent, as wise, and as helpful as you are.  Your Dad and I would happily live with you forever, without a moment's hesitation.  I just want you to know what options there are out there, even if they are few and far between, because I don't want to limit you or be over protective of you.  If you have a desire to try and live life as independently as possible, then it is my job to help you achieve your goals.  But don't ever, EVER think you are a burden on us.  Of course it can be frustrating, but so what?  Lots of things in life are frustrating and we still do them and find joy in them, right?  You will always and forever have a home with us, until the day we die, and even then I am sure your siblings will find ways to surround you with love and support, because we all love you, and your challenges are our challenges.  You are never alone in this."  I

He was trying to gather himself together, to continue the conversation without the tears, but it was hard.  This is hard.  This is awful.  It is impossible for me to even fathom what it must be like to be almost 17 years old and know you will never be able to drive because you will most certainly kill yourself or someone else, and even he has been saying that for the past 3 years or so...he is wise and knows his limitations.  It is impossible to fathom what it feels like to be almost 17 years old, and have every dream limited because your brain won't work well enough to allow you to pursue those dreams to their fullest capacity.

"So, I guess seminary really is beyond reach, isn't it?  I need to give that one up, and I know it.  Mom, I can't really organize myself enough to even do my work now without lots of help, let alone imagine living on my own and going to school. "  Kenny wants to go to seminary.  He wants to work in ministry.  He wants to attend college.  He wants to engage in deep thinking, deep conversations, and deep theological exploration.  Somehow, I have to find a way to fill him up in this area, while making it do-able.  He will never be able to attend college on his own, and I am not sure we will be able to get his reading level up above about a 9th grade level.  It is incredibly difficult to build vocabulary when your brain can't retain the definitions of words not commonly used.   And it is so hard to describe Kenny, because there is a level of depth that is beyond what it ought to be with the brain he has.  In so many ways he is capable, and yet in so many ways he really is not.

People who meet Kenny often have no clue he is as hampered as he is, he comes across as very articulate, very introspective, and very bright...and he is all of those things.  It works against him, as he looks and sounds "normal" (and honestly, sometimes above average), and expectations are quite different than what he can live up to.

And that is the hardest thing of all, seeing the potential there that will be unrealized, at least in the traditional ways.

We are too far along now to not be honest about things, we can not live in a Pollyanna world as he are almost at 17 years old and legal adulthood is barrelling down on us.  He has 4 years of high school to complete, and will do so and probably be academically higher than the vast majority of his local peers.  But he can't fill out a form without help, he can't recall his middle name or how to spell it, he can't answer questions at the dentist's office about why he is there that day.  Daily he loses things, daily he forgets important information, daily he has to stop and sound out words that the day before he knew how to pronounce.  While I'd love to be able to allow time for his high school years to be lived out before dealing with anything, he will be 18 before we know it and we have to be honest about the level of assistance he needs.  We have to be prepared, I have to be realistic as we look toward a future for him and what will give his life meaning and keep him engaged.  My son will NOT become a statistic simply because I didn't want to admit the truth.  He also will NOT be left unfulfilled working at a menial job with nothing meeting his need for intellectual stimulation.  I have a lot of work to do, for he is incapable of doing it, and I absolutely must find ways for his life to bring out his very best, for there is SO much there of value to the world!  But neither of us can pretend it is all going to be OK, because it really won't.  His life will be very different from his siblings' lives, and we are all grieving over that.

Kenny has an invisible disability...or really set of disabilities.  However, he has a very visible set of abilities as well.  He is blessed with a church family that sees the sum total of Kenny, not the parts that are damaged, and he is treated with acceptance and respect by everyone.  His thoughts are valued there, and they have no idea how life giving that is right now for him, for it is authentic, and it helps him feel he has a place where he is seen for all he is, while the deficits are acknowledged and yet seen as a part of a much larger whole.  That is a gift of untold measure for a young man like Kenny.

Today, while driving yet again, he and I were alone, and I told him that one of my biggest regrets in life would always be not recognizing things sooner, not being able to sort out his learning disabilities sooner, or advocating harder, or expecting him to perform in ways that were impossible for him, though I had no idea at the time.  He interrupted me and said, "Mom, I want you to get rid of that guilt right now, just put it in the trash can.  No one would have understood all that was wrong or why, and honestly, sometimes when you came down hard on me I totally deserved it, after all, I may have problems but I am still a kid and I still try to take the easy way out...and you always catch me.  I will never, ever blame you for anything, so you can just let that go and not walk around feeling that way, OK?  You are a terrific mom who has made mistakes like we all do, but it was because none of us knew what was going on, that's not your fault, you weren't working with enough information sometimes.  When you feel bad about something with me, just look at how far I am now, and know I wouldn't be doing half of what I am doing if it weren't for you,  Others thought I was just dumb, and over and over again I heard you in those meetings telling people that I wasn't dumb, that something was broken and you didn't know what, but that you just knew I was smart.  You believed in me when no one else did, and it changed everything for me.  What if I had ended up with a different mom?  I would have never made it. Don't feel bad, feel proud you got me this far."

I went on to say, "You know this really isn't your fault, and it isn't mine either I guess, someone did this to you, and you have to suffer because of it, and that kills me sometimes.  I know that your bio mom probably had no idea, but it was so preventable, and I hate that this happened to you."

Then my son blew me away, as he so often does when he said, "No mom, you are wrong.  She did it to you, too.  She did it to our whole family.  All of us have suffered, and sometimes I think you have suffered even more than I have.  You taught me it was always you and me against my brain, it is always us as a team.  She hurt both of us, mom, not just me.  Remember that because I think it is important for you to understand that it's OK for you to be upset and hurt over this, too, because it isn't just my life that was changed because of her drinking, it was your life and dad's life and my brothers and sisters lives that were changed, too.  But mostly you, because you are dealing with something you didn't cause, but you have to fix.  And I am the luckiest son on earth to have you as my real mom, because I don't know any other mom who would work this hard for this long and care this much.  But like you told me that it is OK for me to grieve over this and it might take a while, it's OK for you to grieve, too, because you ended up with a son who was not what you had dreamed of.  So you need to grieve too, because you have worked so hard and done everything you could for me, and I know you still will...and no one knows how hard that is for you to be my other brain all day every day.  No one knows, mom, but I do.  No one gets it, but I do.  We're a team against my broken brain, and I get how hard it is to be you, and you get how hard it is to be me, and we might be the only ones who know that."

Blinking away tears, I couldn't speak, I just reached for his hand and grabbed it tightly.  How wrong he is.  I absolutely ended up with the son I always dreamed of, a kind, thoughtful, courageous son who loves so well, forgives often, and is the very definition of grace.

We are working through a lot of hard things.  This is a time in my life where I am more emotionally wrung out, more mentally exhausted than I ever recall being.  I am being cut into pie pieces that are tiny slivers, and I am trying my best to remain afloat.  Replacing broken computers and unreliable vehicles has placed added financial concerns at a time when we are already stretched far too thin.  I feel "flat" in a way I never have, somehow managing to be present when the kids or Dominick really need me to be, but not managing to be present to myself or the Spirit right now.  I am sort of lost, as I wade through the lovely brokenness that surrounds me.

I need to find myself again, and maybe I will this coming week, when I attend Why Christian 2015  in Minneappolis, a soul filling, generous birthday gift offered to me as a surprise by my dear friend, Candi and arranged ahead of time in cahoots with Dominick.  When they plotted about this several months back, they couldn't have known how very much I would need this at this very time.  There I will, for the very first time in my life, be submerged in feminine wisdom and story that speaks to the deepest places of my heart.  I will hear Rachel Held Evans, whose fabulous writing makes me want to weep, and Nadia Bolz-Weber whose tattooed Lutheran faith is vividly different and wildly challenging.  There will be other moving stories shared by many other Spirit filled women speakers whose differences will, perhaps, make me feel less alone, and whose faith journeys were as quirky and diverse as they get.  I am begging God to use this time to renew me, to bring me "home" so I can rest in a way I haven't been able to do in a very, very long time.  I need to be inspired, I need to be invited to see differently, I need to be immersed in something that tickles my brain and massages my heart.  I need to feel God's call fall anew on me, and to maybe gain insight into why I felt it in the first place and never, ever feel as if I am living into it.  It is a hard thing for me to talk about, and it is an awful, raw edge I rub up against every single day.

I want to blog more faithfully, but my heart has been falling apart, bit by bit lately, and I have to allow for that to happen and just trust that the words will come when they will, and my "working it out" place, as I like to think of this blog, will still be there when those words come more easily.  Free time doesn't exist in my life right now, except for in dribs and drabs late at night, when fatigue overwhelms and the hard stuff is just too big to approach with words.  But I'll keep trying, and in time, tension will ease, paths will be clearer, and my heart will be lighter.  I know this, because it is promised to me by God, and I have experienced those mini-resurrections over and over again.  And in due course, it will happen yet again.  I am certain.


LK said...

I am a special educator and adoptive mom. You are a 24/7 special educator along with being an adoptive mom! Go to Minneapolis and get rejuvenated! Thank God Kenny has you. Maybe the Dept. of Rehabilitation would have programs available to him, or your community college. I think with his wisdom and articulateness, he is going to be a source of inspiration for the many young adults affected by alcohol. He clearly has a moral compass and the support of your amazing family! Laura(one kid from Uralsk, and one from Petro!)

sandwichinwi said...

This is a big idea but maybe you can find a roommate for Kenny someday and bless another family in your situation. A mini group home of sorts in an apartment or guest house on your property.


Titus 2 Thandi said...

God gives us anwers when we least expect them. I pray for positive answers to at least some of Kenny's questions-even if we have to wait 5 years for that to happen. Hoping for the unexpected, prepared for the status quo. You are both blessed to have each other.

Mary Beth said...

What a precious young man.

Ohiomom2121 said...

Dear Cindy,
As kind as Kenny is, my bet is that he will be a father someday. He should not rule that out, nor seminary. His brain has a lot of changing between now and mid-20s, and he may not be safe to drive or to live independently, but he can learn and preach and love and be loved. Our son has ADD and although it is not as debilitating as FASD (which our adopted daughters have), he has found a tremendously organized, Christian wife who adores him (and pays their bills!). We all agree that she is a miracle, but like Kenny, she can see the sweet, smart soul of the man she married and is willing to overlook his flaws, just as you can enjoy living with Kenny despite those same flaws. There was a blog by a woman with FASD who was married to a blind man and their love transcended their disabilities and they complemented each other. Lots of room for hope!