Wednesday, July 29, 2015

And We Press On

It was Sunday after church, and our Leadership Ministry meeting was just about to begin.  Kenny had been invited to participate as an interested youth, this was his 3rd meeting to be in attendance.  He sat next to me, equal parts studious and ravenous as he waited for the go ahead to fill up on the pizza that was being provided.

This is no surprise to anyone who knows Kenny personally, as it was obvious his heart has always been God's from the very first day we met him,  He is gradually moving into more meaningful roles within our small little church, having been liturgist at the ripe old age of 12 or so, now occasionally teaching Sunday School to the little ones, and now sitting on the Leadership Ministry.  He feels called to something, and is open to just about anything that seems suitable.

So there I was, my son sitting next to me when he was asked to briefly share what he had gotten out of his recent church summer camp experience.  My usual "Mom Radar" went up and I prepared myself to nudge him to stop him from rambling on and oversharing as only Kenny can sometimes do, or stand at the ready to gently re-direct him back on topic.

And I'll be darned,  not only did he summarize three key points, it was clear to everyone that those important points were directly related to our church, and he had obviously spent a significant amount of energy and time at camp thinking about our congregation's needs.

To say I was quietly stunned is an overstatement.  Who WAS this kid?

As the meeting went on, Kenny was an active participant, contributing to the conversation in significant ways, gently urging us to remain open to Spirit leading rather than "Worker Bee" mentality.  His insights were thoughtful, well articulated, and sometimes surprising.  This was a young man beside me who was discerning in every possible way.  He had analyzed things deeply, his suggestions were thought provoking, possible, and pragmatic.  There was a logic present that had been years in the making, but more importantly, there was a sense that God inhabited this young man.  Were he not my child, and were I to be sitting in on a meeting with him for the first time, he would be someone I would immediately be drawn to because of his depth and gentle way.

Was I proud?  No.

I was so humbled, grateful, thrilled, stunned, and filled to the brim with God's healing goodness.  Once I was so near tears I thought I would lose it, but managed to reign it in.

Those present are the people who have come alongside our family, the very ones who have supported and encouraged us, and loved us through some very hard times.  They still are loving us through some very difficult times.  There are many others who were not there that Sunday afternoon to see what their care and cheerleading hath wrought.  There are some who have invested financially in him, their belief backed by funds we couldn't provide to get him tools and resources he needed.

Where would we be without God wrapping arms around us through so many?

This lovely young man who couldn't read a lick five years ago, who couldn't have summarized a cartoon, let alone organize his thoughts to be able to articulate them quite so easily and comfortably, has blossomed in ways neither Dominick nor I could have dreamed of.  Though everyone around the conference table knows him well, there was only one other there who has a real handle on how very handicapped Kenny is in terms of his brain and learning deficits.  Our beautiful Miss Mary was sitting directly across from me, and kept looking up at me with each comment he made, eyes widening as much as her grin was.  She knew...she knew this shouldn't have been happening.  She has been here twice a week for years, offering her gifts as a reading teacher, supplementing my efforts, and watching the gradual and unlikely transformation.

There are no words, my friends, no words at all really that can convey all of what was going on for me that afternoon as I listened, and witnessed the miracle that was Kenny.

The slow stutter-step progress he has made over the course of the past 5 years has been exciting at times, and incredibly disheartening at others.  Day after day, books spread across the kitchen table, such painfully slow reading that every single one of us has sat patiently through, correcting the same mistakes over and over to the point of utter frustration for all of us.  And yet, we all valiantly carried on, encouraging, never showing any sign of the irritation that could have been given voice.  Kenny's siblings are true heroes in many ways, encouraging, reassuring, building his confidence as they let him know there was no rush and he could take his time.  A more compassionate group of young kids you would never find.

Complete phonics programs THREE times (not including in school a fourth time!), constant correction of ADD behaviors as he interrupted others a gazillion times and I firmly got in his face reminding him that his was not the only opinion deserving of an airing and that he needed to "Hold it, mold, it, then show it" before impulsively speaking.  We STILL work on this daily.  Five years of daily verbal news article summaries, reminding him to share the key points and not every detail...and not assume your audience has background knowledge.  Night after night, hour upon hour of researching what the best teaching methods, tools and curriculum would be for working with him.
Memory loss kicking in and reminding him yet again (still) what sounds letters make, what his zip code or area code is, or how to work with his auditory processing by taking things one step at a time.  Discussions about themes for every single thing we have ever studied, Socratic questioning to get the logic to start kicking in, explaining the definitions of so many words on a single page that it takes us half an hour to complete the reading of that single page.

There have been so many dark days, when I felt like the worst mom in the world because Kenny was the one always being corrected, always suffering consequences, always breaking my heart a little.  Outsiders have actually commented that I am harder on him than the others or that we don't love him as much as the other kids because they lack knowledge, they lack understanding, and perhaps they lack the gumption it takes to tackle parenting a kid like Kenny in the face of judgment that is undeserved.  It has hurt me deeply at times, and made it hard to pick myself back up after having been hit over the head with an emotional mallet like that.  And yet Kenny and I get it...we talk about it openly, we share together, we have a wonderfully warm and delightfully connected, affectionate relationship.

We know what others don't.

We know it is he and I against his brain.

And damned if we aren't going to win.  It may take years more, it may take ALL of my hair falling out, it may take ten thousand more behavioral modifications and corrections, but this kid WILL succeed, or he and I will both die trying.  You see, we have conspired against the evils of probable Fetal Alcohol Syndrome and the  other awful brain damaging effects of long term institutionalization.  We know we are in a battle for his very future and we can never give up.  NEVER give up.  I told Kenny when I brought him home to begin homeschooling that I would give him my all, and I would do my best to have him reading at a high school level before he graduated (YES!!! He is already there!), but that he would absolutely have to dedicate himself to working just as hard, that we were a team and had a big job to do.

Boy, did he take my words to heart.  I have never seen a kid work so hard to learn.  Well, that may be unfair, as I have a houseful of 'em who have overcome a lot, but even among this bunch Kenny stands out even in their minds as the hardest working student.

I have always known it.  I knew it from the first photo I received with those warm smiling eyes staring back at's always in the eyes, in case you didn't know...the intelligence and warmth of a child you are referred can not be missed if you look carefully at their eyes.  When we met him, it took five minutes to see the clever intellect that resided beneath the four year old behavior in the 8 year old body.  How I advocated for him and his brain, knowing no one knew what I knew, knowing no one saw what I saw daily in deep, rich conversation with him.  I declared it boldly to every teacher in every conference, one of whom looked at me and said, "Maybe you are just expecting too much, after all, he is borderline mentally retarded."

I wanted to choke the know...out of her.

Our children are NOT their test results, beneath the challenges and the delays reside heart, guts, soul, determination, and intelligence that damage done to them by others hides.  As you gradually work to peel back layers, you begin to see ever more wisdom, courage, and not a small measure of grace.  My Dear God, I live with some extraordinarily special people, a gift of untold worth.

So there in our meeting sat Kenny, and there sat I.  For the very first time in the 8 years as his mom, I discovered I wasn't in "Mom Mode", something I never thought would be possible.  I was able to sit back, as I have had the luxury of doing from time to time with our other less hindered kids, and simply observe and enjoy.

No one else could have known what a victory that afternoon was.  No one else had images in their head of Kenny hitting his own head with his fists in utter dismay crying out, "Why am I so stupid?? Why can't I learn anything like everyone else?".  No one else was recalling the sound of his heartbreaking sobs as he asked why his life was so hard and begging me not to give up on him after a particularly difficult day with behavior.  No one else was there just this past December at Shriner's when he took a break from neuro-psych testing and came out utterly dejected telling me he just couldn't figure things out, and he was suddenly really understanding how "broken" he was.

And there sat my handsome, open-hearted, loving, bright, amazing kid...16 years old going on 50 in terms of life experiences, suffering, and compassion.  16 years old going on 13 at times in terms of other developmental markers.

All I could think to utter in my soul over and over again was "Thank you.  Thank you, God.  Thank you for letting me be the forever mom to this remarkable young man.  Thank you for helping me help him.  Thank you.  Thank you. Thank you for giving me the guts to keep at it.  Thank you for exposing me to his unique spirit, from which I have learned so very much.  Thank you, God...thank you."

Then, as if God was reminding me of just how far we still have to go, yesterday at the table I was teaching and asked the kids to take notes.  I spelled a word for them to write, it was the name of the font "Calibri".  Kenny asked me to repeat it.  I spelled it again.  And again. And again.  And again.  Six times I spelled it slowly.

You know what?  He stopped and looked up at me with eyes that were quite disturbed.  He had forgotten how to make a letter "B".  Completely forgotten.  I reminded him.  He went on to the "R".  He forgot that one, too.


And we press on.


Anonymous said...

Keep on keeping on! You are doing great!
Nice to have you back blogging
Teresa F

process said...

In CPS, I've worked with a. Umber of kids with FAS, so I have some idea what you experience. Your patience and commitment is exceptional. I also find your faith very compelling--but I don't understand it. I hope you continue to write about it.

process said...

In CPS, I've worked with a number of kids with FAS, so I have some idea what you experience. Your patience and commitment is exceptional. I also find your faith very compelling--but I don't understand it. I hope you continue to write about it.

Peggy said...

Hi Cindy,

What a beautiful, and inspiring post. Sometimes, what is lacking in one area, God will fill in with ability in another area. When life, and studies are tough, we learn to look to a greater source of strength and wisdom than ourselves.

Love to all of you,

Peggy in Virginia