Friday, July 22, 2016

A Love Not Limited

I went to bed long ago, and here I am up again.  It seems there is something that needs to be written, something that won't allow me to rest until it is captured in digital form and displayed, and maybe then sleep will come.  There are moments like this when I have no earthly clue why a thought grabs hold of me and shakes me until I DO SOMETHING.  Sometimes that something is to write a blog, sometimes it is to call someone, sometimes it is to read something.  Over time, I have come to trust this instinct despite the fact that I may never understand, and because of the fact that once acted upon I will then finally have peace.

Tonight, the Spirit swooped in and sat awhile on my shoulder, reassuring in Its presence and awe inspiring in Its power.

Kenny is in a confounding and terribly heart breaking place, a place I wouldn't wish on any teen.  I have held him in my arms as he has cried out in the greatest pain imaginable that his disability combined with his sexuality will mean a life of loneliness and dependence.  The words "I will be a burden" have been spoken far too many times by him, and the yearning to know that love will be, at the very list, possible for him is an ache that is hard to even write about here.

How does one parent through this sort of grief and uncertainty?  How can one offer comfort and assurances that he will be the one to defy the odds that are stacked so high against him and not sound like an overly optimistic mom who is unable to grasp the full weight that he is carrying?

I have yet to figure it out, and daily I question what in the heck I am doing here, and how can I ever be what he needs me to be.

FASD and LGBT are an alphabet soup that collides in his mind and equals UNWORTHY.

Living where we live, there are no PFLAG groups and almost no one who understands the limitations of FASD.  Kenny has never met anyone like himself, other than Angela and Olesya who are far more mildly effected (we are certain at this point), who lives with the crazy combination of learning disabilities that make normal life nearly impossible.  He has never met anyone like himself who will never safely drive a car, or be able to live on their own.

Just yesterday evening Dominick and I discussed the importance of my reaching out for Kenny to find "his people", and that we need to somehow find a way to fund his attending conferences on FASD with me so that he can hear stories of success and how best to maneuver through a world that, as of yet, has very little research available and few resources for adults with FASD.  As important as it is for Matt to have his future supported and nurtured with attendance at flight camps, it is equally important for Kenny to have his future supported and nurtured with attendance at progressive Christian conferences.  Just like Matt, he feels a calling in his life that is just as real, just as valid, and just as necessary to fuel.  The harder part is that for Kenny, the only way to pursue some of this is to travel out of our area, and he also can't do it alone as Matt could this year, necessitating a lot more money being spent.  Somehow, we will figure it out.   He needs desperately to feel less alone in his diagnosis, and he needs to feel as validated around his future as any other kid, too.

Participating in a few Facebook groups for FASD as a lurker, I have gradually become aware of just how blessed we are.  You see, it is no exaggeration at all to say that adults as effected as Kenny absolutely can not make it on their own without considerable supports in place.  Reading the stories of young adults, parents, and others whose lives are impacted by FASD is a real eye opener...continual job loss, repeated encounters with the law, explosive emotional outbursts caused by frustration and lack of emotional regulation, homelessness, and more fill my screen and have me whispering prayers of gratitude that Kenny is emotionally more stable than most with FASD.

It is in this place that my heart has dwelled this past year, and it is a hard, hard place for the parents of an FASD adolescent.  There is little that is positive, there is little in terms of services available or able to be qualified for, and there is little guidance about adulthood for your child.

Pleading for help and hope, my prayers have been ever more fervent.  How can I help Kenny see that love might come his way?  Concretely, I prayed for someone...anyone...who might be able to be held up as a "this is possible" sort of model as an encouragement for Kenny.

Oh, how the Spirit listens!  Oh, how the Spirit provides in the most astounding ways!

Now, I know that some of my more theologically conservative friends probably have been dismayed when reading about our open acceptance of Kenny's sexuality.  They may have trouble seeing that our family attending a church open to the LGBT community long before there was even a thought of Kenny being in our midst was God preparing us for Kenny's eventual needs.  Those whose religious teachings point toward the "sinful nature" of homosexuality may have a difficult time imagining the Spirit serving to be just as present for us in our life as it is in theirs.  I have no issue whatsoever with those whom I love who have a different perspective on any of this, however it is not a belief I have ever held.

I am, however, deeply grateful to be in relationship with a God whose love is not limited, whose provision is not narrowly defined to being only for those with "right thinking", whose presence is just as potent, just as powerful, and just as encompassing as it is for any other Christ follower.  Humanity likes to divide into categories and split hairs, God just wants our hearts and our longing for presence...and God shows up regardless of how humans like to say God shouldn't or won't based upon our infinitesimal ability to comprehend the vastness of God's love for us all.

God showed up miraculously tonight in the form of a man named Tim, the loving husband of a man
with FASD.  Reaching out based on a single post I read on Facebook, I asked Tim privately if he would mind visiting a bit, and it led to a rich exchange online that I couldn't have possibly arranged had I ordered it through prayer on a menu.  In the person of one kind man, there was hope for love from a non-FASD effected gay partner, an understanding of adoption and race issues, an admission of how hard it can sometimes be to be the caretaker, and the unexpected and beautiful fellowship of someone who is a person of faith and worships within our own denomination in a much larger city.

God knew what Kenny needed.  What surprised me was God knew what I also needed even though I had no clue I was in need at the moment, and provided for me as well through this conversation.  At times I have left myself out of the equation, not realizing that I too have suffered because of FASD, I too have struggled because of FASD, and I too grieve a future that won't be the same because of FASD. I too have no one to talk to who understands the complexity of intertwined issues that make for a remarkably intelligent person before me, and yet an equally remarkably disabled person before me that no one who isn't knowledgeable about FASD can understand.  I am the interpreter of the world for him, and of him to the world, a role that is taxing in ways I can't explain...and yet Kenny is so dear and precious I am eager to jump into that role for him.

Isolation is a soul killer.  The Spirit brings us together to nurture and care for one another in striking ways, and in amazement I shake my head yet again, and wonder how anyone can ever think God would find it preferable for someone to be "out" and others "in".  Our little pea sized brains just can't fathom that kind of love.  The world would be infinitely better if we could.

1 comment:

Shari said...

Hi Cyndi...I read your post on the FRUA website then went to your FB page and found this blog. Just saying kuddos to you for your open mind and loving heart..
I have no words of wisdom, just sharing my story. I have a daughter adopted from Russia, now age 9. Smart as a whip but suffers from learning disabilities. I suspect mild FASD as well, but I believe with our support in place she will be okay eventually (well, I think she is pretty okay now!).
But the other story I have is that of one of my bio sons who is 29. He was an incredible child with a gentle nature and so very smart! He won his school typing contest in 3rd grade, even beating the principal! He won a state essay and would have met the governor (but he got chicken pox!!) When he was a child, my sister in law used him as a test subject to administer an IQ test to when she was in grad school. He scored with an IQ of 135 and she said he could do anything he wanted.
However, his first year of college, he started developing odd behaviors and to sum it up quickly, he was diagnosed with schizophrenia. Now he is pretty well controlled by meds but he is on disability and he needs much assistance in caring for himself. He does not remember to pay bills and if not monitored will try to spend his disability money on computer parts instead of rent. He can still be a bit paranoid about people's intentions, and we really have to enforce hygiene. Sometimes, many times, I want to just give up or cry or scream because of the life he should have had, but doesn't have and never will. So when I read your story of hope, well, it gives me hope. I HOPE for him to have a significant other someday who will not have a mental illness and will love him. This is my biggest wish. He gets so lonely sometimes he tells me, and it breaks my heart daily.
He is lucky now because his younger brother lives with him and this gives him a sense of independence, but I worry about the future. Prior to diagnosis, he disappeared for 2 years and we only found him after he was admitted to a hospital in western Colorado. I fear he will disappear again someday if he becomes too unhappy. But I will always keep on as long as I am on this earth to help him. So bless you, truly, you are an amazing mom and an inspiration for me!