A Very Special Sunday

This past Sunday, Kenny was a guest preacher at our church, having asked if he could offer a message that was working on his heart.  Our pastor kindly allowed him that opportunity, and Kenny delivered a beautiful message with confidence and depth.

Sitting there watching him, hearing his words, there was so much going through my mind, and my heart constricted.  Tears streaming, I was surprised to discover for the first time in my life that I was literally overcome with emotion, completely unable to stop myself from crying.  Feeling so much like a fool, knowing that there was no way I could explain all that was churning inside me, I wished desperately for the floor to open up so I could silently slip away to collect myself.

Real emotion is rarely shared publicly, we all work so hard to hide our raw moments, and why?  Why do we wall ourselves off from others so that they may never see our truest selves?  I have nothing to hide, so in that moment I decided to bat those thoughts away, let the tears fall,  and feel safe within our compassionate congregation, understanding that seeing my tears would do no harm.

After worship, many came up to me saying I must be so proud.  One special couple though, seemed to get it more than most, as each approached me separately and enveloped me in their arms, having a sense that this was more than pride and there were no words in the moment.

And though there was indeed a little pride, that was not the focus for me at all, though I am sure that is the obvious first thought of others.  I have waited a few days to try and share here about it, for initially I couldn't even express it.

I had to re-read Kenny's sermon later in order to pick up everything he had said, for as he spoke, my mind couldn't help but take a walk back in time, and moments...so many of them...flitted quickly in and wove pictures in my head.

Our dear friends, Jane and Steve, were present, and were perhaps the only ones in the sanctuary who could understand, for their very first day at church was Kenny's first day home.  They have been there for every painful step of our post-adoption journey, and I have no doubt there were a lot of things they were thinking about as well.

You see, witnessing Kenny preaching, all I could think of was, "God, you have brought us so far!!"

No one could possibly know the thousands of hours of work that has gone into Kenny becoming who he is today.  Hard work on his part, hard work on mine and Dominick's, extraordinary patience from his siblings, hard work beyond description.

How could I sit there and not see the young man before us, at 19 years old, who  was virtually illiterate 7 years ago with almost no hope of ever becoming literate?  Couldn't read a lick, had given up on himself, school was becoming a farce because he was growing further and further behind.  I do not exaggerate, his reading level was below first grade, he couldn't spell, couldn't write, could barely read sight words worked on for three years.  Three full phonics and reading programs were used to help him get where he is, no summers off from school for the first 8 years of homeschooling, no giving in and giving up.

How could anyone listening to him have any clue the thousands upon thousands of times I have corrected his speech?  Botched cleft palate repairs in Kyrgyzstan led to multiple additional surgeries, with more anticipated as he still has a large fistula that needs to be closed (hole in his hard palate).  Day after day, hour after hour, reminding him not to drop sounds at the ends of words, to articulate as clearly as possible, to think about sound formation.  Graciously, he accepts correction, tries again, grins and moves on.

How could anyone know the anger and frustration at IEP meetings at school when I was told that essentially, I was expecting too much, that my son had an 82 IQ, and I just needed to maybe begin to accept that.  Yet when I looked at every one of those teachers and specialists around the table and asked, "You all know Kenny, does he strike you as a child with an 82 IQ?  I don't buy it, and neither do you.  There is something wrong, and none of us can figure it out, but he doesn't present at ALL as a child with an 82 IQ and you know it!" and slowly they all nodded and agreed, having no clue any better than I did what was wrong with this obviously bright boy who just couldn't seem to learn.  There are few who can understand the pain that comes with being told your child is hopelessly intellectually disabled, and knowing in your heart that simply isn't true, and you are not living in denial because all signs point to something else.

How could anyone watching him in front of the congregation know how many physical tics we have eliminated (and still do, ALL the time), odd actions including weird body movements, picking and touching things constantly, as well as random words that become "stuck" and can't get removed from his brain and vocabulary until we work for weeks to shove them out of his head.  They still come with frequency, but we tackle them quickly so they don't embed...so he can present as normally as possible to the world.  How could they know how often we work on hygiene, regularly reminding him to wipe his mouth after eating, and checking to make sure he is wearing appropriate clothing for the weather because he simply doesn't have a brain that figures that out.

How could anyone possibly understand the unique challenge of having speech and language disorders that all work together to make learning not just far more than "difficult", but darned near impossible.  Auditory processing issues plague him and as we later learned he only processes about 60% of what he hears correctly.  That makes speech work so much harder when you aren't hearing the sound correctly in the first place and are expected to replicate it with a mouth that is ever changing.  When you can't discern P's from B's, G's from K's, how much more difficult is phonics?

How could those who haven't been part of our lives for years recognize that for Kenny to be able write and have a higher level vocabulary we have had to repeat...and repeat...and repeat...and repeat...and repeat...until we are just as sick of it as you are reading this sentence.  Information stored is lost so often due to his poor memory function and word recall.  Oh my, how MANY times have I repeated learned material so it can be reabsorbed after being forgotten time and time again?

How could those listening to his well planned sermon, written with no help at all, possibly fathom the utter and complete lack of logic that comes with Fetal Alcohol Spectrum Disorder and how daily dedicated work in this area has led to improvements no one would have ever thought possible.  At one time completely nonsensical, Kenny now has a well honed ability to think critically, to analyze, and to place things in logical sequence, all of which was something we highly doubted we would ever be able to help him with, but we kept trying.

How could Kenny's suffering ever be understood as day after day he would cry, wondering what was wrong with him, beating himself on his head with his fists saying he just didn't know why his brain didn't work right.  How could anyone look at this composed, confident young man and have any sense at all of how close a couple of years ago we came to the deepest darkest depression one might imagine as he accepted how his life might never be what he would have hoped?  How could anyone know the fears we held, the sleepless nights of concern, the wondering about his future as we began to recognize he really and truly will never be independent.

Oh, but in Kenny's own words, that may all be true, but he is so much MORE.  And what no one else will ever grasp is that the most important work we have done with him is to help him see possibility, to grab hold of hope, to see himself as MORE.  Nothing has changed, a few of his abilities have improved but he will still never live unassisted.  He struggles to remember the simplest tasks like how to address an envelope correctly, making choices like what flavor drinks to select for himself are overwhelming, and loud noises can send him into a tailspin where his brain almost can't function at all. He will never find his way around town...heck, even around Walmart!  He will never drive, never be able to be alone and not risk burning the house down, and he will never have a brain that performs consistently enough at multi-tasking to ever trust.

But he is MORE, and I have spent countless hours in loving conversation as he works through grief, loss, and accepts the limitations he has.  I have encouraged, pointed toward real strengths, nudged, listened, cried with, and most importantly, prayed for him to see his worth.

No, what people didn't know...couldn't possibly know...was that sitting there, tears streaming, memories flitting, what I was thinking was:

"Thank you, God!"

Kenny is a miracle.  He is proof of what God's love can do.  He is evidence that God's presence in a family can change everything.  It helps with the patience necessary, it helps with the compassion that leads to understanding, it helps keep us centered and balanced.  It helps us see "more" when others urge you to give up.  It helps us resist when the world's values creep in and we feel judged for parenting differently.  God's presence helps us laugh through tears, and live authentically.

Pride?  Oh, maybe there was a little.  There was also a hefty dose of grief, as one could see in those moments all that might have been...all that we will continue to work toward...and yet all that in reality may not be able to be possible.  We don't give up though, but the grief is real, my friends.

But it was largely gratitude I was feeling.  Grateful to be offered the chance to be his mom, grateful for every challenging moment, grateful for the incredible love he offers me, grateful for the ability to see the world differently because he is part of our family.  Grateful God keeps us hanging in there even when our souls are weary.  Grateful for this wonderful, wacky, wild life we lead as LaJoy's, for this life is MORE.

In unedited form, here is Kenny's sermon:

 More

Our tongues play a critical and profound role in our lives and within our society, with our tongues we have created words and adjectives.  Dictionary.com defines “Adjectives as terms and words that impose limits on nouns.” and most adjectives have counterparts or antonyms. For good there is bad, for success there is failure, and for saint there is sinner. We believe for there to be good there must be a bad, for someone to succeed there must be someone who has failed, and for someone to be a saint there must be someone who is a sinner. Sadly, that is  how we have chosen to define those around us and how we have defined ourselves, like James warns us, the tongue can create a whole world of wickedness. The key part there is that we have used our tongues to define others and ourselves in these cages of adjectives, but this is not how God defines us. 

In our reading from Mark, Jesus asks who do people think he is, or another way of saying it is, what name do people define me as? Jesus knows that each of the names or adjectives thrown out can and are correct about him, but that all of them are far too limiting of who he really is. In Exodus 3:14 God is described as “I am who I am”, in our Judeo-Christian  tradition, we refer to God as the Great I Am, so Jesus is the great I am. In the beginning of the Gospel of John, Jesus is referred to as the Word. To take a page from the eastern philosophy of Taoism, in the first verse of the Tao Te Ching, it explains that to name the Tao is to limit the Tao, so to name God is to also limit God. To name ourselves is to limit our whole God given selves. 

Now that I have admonished how “evil” it is to name God and to name ourselves, I am turning the script on its head to proclaim that there is a name for God, that I do love to use. Some time ago I learned somewhere to refer to God as the MORE. The word more didn't limit God, because God is always More than we can ever imagine. God's love is always More than we can understand, God's grace is always More than we can ever calculate, God's faith in us is always More than the faith we have in ourselves, and the resurrection of Christ shows us that God is More then death. 

Since we are from God and are of God, we are also More than just successes or failures, More than just talented or disabled, More than just saints or sinners. When we are who we are meant to be and if we are willing to live into our God given selves, we reflect the More! 

The reason I love using the word More to describe God and see it as a reflection of us, is because it does not deny a single part of us, it just means there is More than just that. I am disabled, but I am More than that. I am a Christian, but I am More than that. I am a sinner, but I am More than that.  This goes for all of us, my Mom is a fantastic mom and she works tirelessly to be the best mom she can be, but Cindy LaJoy  is also More than just a mom. My Dad is an entrepreneur and has run multiple successful businesses, including our  current liquor store, which he does a phenomenal job at, but Dominick LaJoy is More than just an entrepreneur. Our pastor is a terrific one, who has metaphorically and literally brought new life into this church, but Pastor Kaila is More than just a pastor. 

No amount of adjectives could ever encompass the entirety of who we are, for we are always More. The journey of self exploration is a never ending quest, because when we discover a new part of ourselves there is still More and there will forever be More. This is why God never gives up on us because God knows we can always be More. 

Question Time

What makes you More? What is something that people don't know about you that makes you More? 

During the Houston Trip, I was given the great privilege to hear from the Rev. Nadia Bolz-Weber, in her speech she explained that there is no ideal self and that our attempts at self improvement are futile and in vain. Her proclamation that night was that God loves us just the way we are and we should too, though I understood what she was trying to convey, a part of me felt like her message was permission giving for us to be our lesser selves and that there were no real world consequences for it. Very Truly I tell you, the message of the More fully embraces the reality that we are flawed human beings, that let our ego driven selves dictate our actions, but God is constantly calling us to be More than our lesser ego driven selves, and to rise above it. We are always called to be More in our relationships with one another, we are always called to be More in our community, we are always called to be More than our lesser selves. 

  But to be the More in our world takes courage!  Sometimes it is easier to stay in our ego built adjectival cages, because we buy into the lie that we are above others and that our ego driven actions don't have disastrous consequences for those around us and to ourselves. Sometimes it is easier to stay within our adjectival cages that were built on lies that we are less then, but being More demands that we cannot use our cages to deflect the responsibility we have to one another and to ourselves. When I was diagnosed with Fetal Alcohol Spectrum Disorder, I realized that the future I had envisioned for myself was no longer attainable, so I used my disability to justify that I no longer needed to work towards my future, whatever it would be. I tried to use my disability as an excuse that I no longer had the obligation to be More. Oh, how wrong I was, I realized that even though I could not live into the future, I had pictured, it didn't mean that I couldn't live into the future that God had envisioned for me, but the only way I can reach the fantastic and glorious future that God has planned for me, is by me challenging myself to once again be More. 
 
It takes courage to see the More in others because it means they are more than just their race, gender, or class. It means that neighbor of ours who wakes up six in the morning to mow his grass is More than just a jerk who is inconsiderate of people's sleep, it means that classmate of ours who is always talking and most of the time for no reason (referring to myself here) is More than just a blabbermouth who loves to hear himself talk, it means that political candidate or that person in office who we despise is More than just the caricature we have defined them to be. That same neighbor could be the person who mows your lawn while you are gone or are too sick to do it, that same babbler mouth could be the person who one day finally learns the enormous power that listening has, that politician in power could be the same person who could defy his colleagues to push a policy through that puts the needs of the common citizen first. These three people and all of us have the capacity to be so much More. 
 
It takes courage, the most amount of courage in my opinion, to realize that God, sees More than just our mistakes, our brokenness, our lesser selves. To God we are like an unfinished puzzle, God sees our puzzle pieces that are good and bad, sees our puzzle pieces that demonstrate times in our lives that were full of success and failures, sees our puzzles pieces that display our moments of despair and our moments of hope and God also sees past them to all the puzzle pieces that are still missing and knows there are still More. God sees the More that we can become if only we break through our own doubts and fears and stop listening to a world that demands we conform into its adjectival prisons. 

In all, it takes courage to break free from own adjectival cages, it takes courage for us to forgive others and to set them free from the adjectival cages we have put them in our minds, and it takes courage for us to realize that in-spite of our lowest lows and highest highs God, the More, understands that we are always More. Let this church be the place where we can set ourselves and each other free from these cages, let this church be the place where we are More. Amen.