Saturday, July 02, 2016


Our family lives in a world of daily juxtaposition, some more poignant than others.  This week has been a stark reminder that it is hard to straddle two worlds, and hard to hold on tight while you wend your way through darkened paths.

We don't compare in our family, even in families without the wide disparity that ours has it is unfair and damaging in all kinds of ways.  In our family, where everyone struggles with some challenge not of their own making, it is even more cruel, and we are blessed to have kids who support and encourage one another rather than hinder and harm.  

But sometimes, the contrast is startling and impossible to ignore.  

We have two sons that are 8 months apart, but often 10 years apart in terms of development.  Matt is actually 8 months younger than Kenny is, Kenny is technically the "big brother", and yet that has never been the case.  Kenny deferred to Matt from Day 1 (as has Angela, who is also older than Matt), and as time moved on and the boys grew older, it was clear Kenny would always remain behind developmentally.  Of course, we now have an explanation as to why, but we were puzzled for a very long time over this difference.

Tonight, we sat Kenny down at the table and had a long talk with him.  Our almost 18 year old son can not schedule his day without help, his mind doesn't "trigger" him to do simple things like get up at a regular time in the morning and prepare for the day without reminders, to mix up his day with a variety of activities without someone suggesting those things, or even to look around his room and see what needs to be done to clean it without guidance.  He is perfectly happy doing whatever is asked of him, but Fetal Alcohol Syndrome has robbed him of the ability to "see" the world the way the rest of us do.  

This has been a hard year for Kenny, and he is working emotionally with a now-clear diagnosis, and there is a bit of a letting go of hope that we are seeing, a giving up on himself and his future that is incredibly hard for him to imagine, as it would be for any of us facing such a difficult life with no true independence.  Who can he be?  What will he be capable of?  Why not just let everyone else carry the load of his life since he can't really carry it anyway?  While there is no real evident attitude displayed, there is a definite lack of motivation we are seeing, and so we had to call him on it hard this weekend.  He admitted it is very hard because he can't figure out who he will be, or how to be who he might want to be.  Having a sharp intellect (trust me on that one, better than average, by far) and yet a diminished capacity to function in the world in very important ways is more of a challenge to work with than one might imagine.  

We made it clear that we are here for him all the way, and yet we will only give him 100% if he gives us 100% effort back.  Success for him is not measured by achievement, but by hard work.  We established with him that he is welcome to live with us as his Support Team our entire lives, but not if he won't work as hard on his own behalf as we are willing to work for him.  He gets it, and we drew up a schedule, and some concrete tasks for him to work on every single day.  You see, Kenny simply can not structure his days...not at all.  So we literally made a schedule for every hour of each day.  We made a list of "projects" he can work on during "Project Time" each day on non-school days, so that he doesn't spend hour upon hour in front of a screen.  He added in physical time where he will do some sort of [physical activity each day.  We talked about what it means to balance productive and play time, and how happy lives have a fair amount of both.  He was also tasked with creating a list of dreams for his future, so he can start to recognize that he can accomplish a lot more than he thinks, but only if he has some targets and goals...and he realized he has given up any goals, and so it was an effective eye opener for him.

It is so damned hard to be Kenny.  I hurt for him far more than I write about.  He is a happy young man, surprisingly so, considering all he faces each day, and he credits God with giving him an extra measure of happiness so that he can make it through each day without feeling crushed.  I have no doubt we will find ways to engage him and keep him on track, and honestly, I think he is entitled to this little period of grief and giving up...but it was time to address it now, and I think I saw a little light in his eyes as we honestly shared about what expectations need to be, and how far we think he can go in this world...which is quite far, but not if he doesn't share that vision.  He began to get a little excited as we talked about projects he could explore, which are simple but such things as using adult paint by numbers kits, working on puzzles, building simple woodworking kits, writing stories, taking on more responsibilities with the dog, and doing all of these without suggestion from us would be the goal.  It is hard having a young adult who has no clue what to do with their free time, and needs to have suggestions offered constantly.  That is our life with Kenny.  Our one summer without the structure of ongoing part-time school has turned into a hard one for him, something I hadn't quite anticipated to the degree we are seeing.  As his caretaker, that was my fault, and I am learning as we go along, too.

Then there is Matt, who is having the time of his life at Civil Air Patrol Flight Camp.  He traveled there by himself through airports, has kept a rigorous schedule and had to study his tail off for ground school while there.  He needs almost no direction and is completely self-motivated.  He had 10 1/2 hours of flight time, though there was a plane malfunction while he was starting his solo flight and the instructor had to take over, so he didn't get to log an official solo flight towards his pilot's license, but he can get that handled here at home.  They were working from 7:00 am to 8:00 pm each day and he wrote a couple of brief emails explaining he was exhausted from learning so much, but enjoying himself a lot.  

One son, firmly stepping into manhood, seemingly effortlessly.
One son, wanting it desperately and uncertain what that looks like, or how to get there.

The juxtaposition is hard to "not see", and it feels achingly unfair.  It leaves me wondering daily how I can level the playing field.  How do we celebrate one's accomplishments without causing pain when the other struggles so mightily?  How do we juggle the disparate needs in our family, yet support and encourage one another with recognition offered for achievement that may not look as "cool" and yet may be real progress?  How do I help all our kids walk through the world seeing all they can accomplish rather than focusing on what might be impossible?  

I am constantly doubting myself, and live with the uncertainty that comes from having no Owner's Manual on how to parent each of this extraordinary souls well.  Having so many virtually the same age means these things rub up against each other more, and yet thus far we appear to have avoided the sibling issues that are the norm, and most often compassion and acceptance are exhibited.  However, it still doesn't change the fact that some will move forward faster and further than others, and the inequity is due to circumstances beyond the control of any of us...and it occasionally hurts.  Maybe it hurts mom even more than them.

Tonight as I write, I hold back the tears that are wanting to fall for one, and I smile as I acknowledge a milestone event for another.  I remind myself that for one, simply getting up each morning and taking care of personal hygiene without reminders is a huge win, while for another the goals are far higher...and for each one of them, success is success, no matter how it looks.

In reality, that is how it is for all of us. To have a healthy outlook one has to recognize that the world is unfair, we do our best, and we must measure our progress against ourselves and not others.  

Easier said than done sometimes.

Here are a few images from the remainder of Matt's flight camp:

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