Thursday, April 05, 2018

Always, Always Hope

Dominick and I sit next to him, this lanky, bright 19 year old who is doing his very best to complete the jury summons information form he received today.  Kenny comes to us for help, and this is what it looks like:

He can't recall his full name.
He can't figure out what "mailing address" and "street address" are.
He begins in the middle of the form.
He can't figure out which boxes are supposed to contain what information.

A couple of weeks ago, at the Dr.'s office, I accompanied him and he had to complete all the forms, which I wanted him to try and do on his own.  This is what it looks like:

He can't recall his middle name.
He can't spell his middle name once I remind him of it.
He has to look up his own cell phone number on his cell phone.
He can't figure out how to read his insurance card.
He forgets to include that he has had many surgeries for cleft lip and palate.

Last week, I was away from the house, and right before I left I hesitated, and then thought better of it and said, "Hey Kenny, do me a favor and don't cook while I am gone, OK?"  I don't want you having an accident and no one is here to help.  I am not trying to baby you but..." and he interrupts me, sheepishly grinning.

"Mom, you aren't babying me, and you are right.  Just a few minutes ago I was going to cook a pizza and I forgot and almost put the cardboard in the oven with it.  It is almost done and I won't cook anything else unless someone is home." and then my sweet young man gives me a hug and thanks me for watching out for him.

As often happens with Fetal Alcohol Spectrum Disorder (FASD), we are in a real downward spiral which is likely to last a few weeks.  Words are scrambled, the brain hiccups ALL the time and comprehension of instructions is pretty much lost much of the time.  In literature class this  morning reading a Jodi Picoult novel, things were seriously not clicking, and we had to stop and explain, stop and explain, stop and explain.  When it gets this bad, all we can do is ride it out, and better function eventually returns, but even then, it is never, ever "normal".

And lately, we have had not just one, but two struggling, as Olesya has been in an odd brain place as well, her FASD messing with her, too.  Jokes are being told that are simply disconnected and make little sense to the normal human being.  This afternoon, she was starting dinner for me as I drove Angela to volunteering, and I came home to a house that smelled wickedly (this has happened twice this week) of burned food.  She went to the bathroom and forgot she had food cooking on the stove and was trying to salvage it.

Oh forgive me, my frustration was heard in my voice, and I questioned her with a tone I wish I hadn't used.  I didn't yell, I didn't say anything rude, just enough of my irritation was evident to cause her to shrink the tiniest bit, and I self-corrected and said it wasn't a big deal, but she needed to watch more carefully next time, as we scraped burnt drippings off the stove, where she had overfilled the spoon rest and didn't notice.

Dominick comes in, and after trying to help Kenny with the form for jury duty, he asks me how my day was, and I can tell he can see something is off.  I explain, and he said, "So...not an easy one."  No, not easy, and yet as I quickly move to defend the kids I add, "But it isn't their attitude at ALL, we all get frustrated when things don't work right with their brains."

Day after day, our family deals with ups and downs that no one sees.  Honestly, I am so used to being the back up brain 24/7 that even I don't realize to the degree I do it, until I am overtired, and then I feel it.  The other day, as we headed to Grand Junction for Kenny's ministry working with our Pastor on leading a worship service for those wonderful folks with intellectual disabilities, I had to ask if he had shaved (he hadn't), I had to ask if he had taken his medication (he had, surprise!), I had to ask if he had used deodorant or brushed his teeth (one yes, one no).  While this isn't a daily occurrence, the truth is that I just don't ask every day because life gets busy and I try and catch what stands out for me.  With Olesya, it is a constant struggle to remind her to brush her hair and keep it neat.

None of this is their fault, and none of it is mine, but our entire family has to deal with it daily...hourly.  Memory loss, inability to organize, losing things ALL the time, losing WORDS all the time, and feeling I can never leave Kenny alone, and right now not certain about Olesya, either at times.  If there is an emergency, brains shut down completely and they (and likely two other of our children as well) freeze, unable to access the knowledge they have in their brains.  How do you explain this to others?  How can they possibly understand that these bright, amazing, tender-hearted, wonderful kids struggle this much??

They are in their late teens, graduation is in the next couple of years, and futures are absolutely in peril.  The fear is real, that they will never be functional enough to hold anything other than a minimum wage job, and for Kenny if he isn't working for Dominick (and there are many things there he simply can't do as the environment is too overwhelming) or we don't get creative, he literally can't hold a job at McDonald's...too many tasks he will forget, too fast paced an environment, too much distraction.  For Olesya, the lack of logic is what causes us to lose sleep, the inability to sometimes connect the dots, the math disability that keeps her at 4th grade level at 18 years old, the stuttering that comes on in social situations or when pressured...and sometimes "just because" with no explanation.

And yet the gifts there in each of do we work with what "is" and not struggle with what "isn't"?  Kenny is a true intellectual, which given all I have shared here seems impossible, but he is a real anomaly.  He reads Richard Dawkins, and Noam Chomsky, follows politics avidly, and knows Biblical history far better than many pastors.  From time to time his brain scrambles data he does know, but when he is "on", there are few better thinkers or folks who can connect seemingly unrelated dots.  Olesya is the most organized human being you will ever find, when it is all working well.  Her writing is proving to be quite good, and she has a heart bigger than most.

But weeks like these past couple are soooooo hard.  Sooooo frustrating. Soooooo discouraging for each of us. 

You know what though?  We are STILL happy in the middle of it all!  We are STILL grateful despite the challenges!  As exhausting as it is in reality, we are so much better together than we are apart.  Kenny and I had a long conversation on our drive home about how much more we understand their disabilities, how much better we are getting at dealing with it all, capitalizing on strengths, finding "work arounds" for weaknesses.  He was right, we are growing in knowledge, growing in faith that somehow it will all be OK, and growing in relationship.  That is far more than a lot of families have with all we deal with daily, and I am profoundly grateful for that.  There is a lot to work with, and terrific attitudes as well.

We spent a lot of time at church this past weekend as Holy Week had us preparing for Easter Breakfast being served by the kids, and a fascinating Maundy Thursday Seder Service where they participated in setting up and cleaning up.  They were part of a community, all five were embraced by folks who have grown to care about them over the past year we have been members.

However, it was the Easter sermon that spoke to my heart, as our Pastor reminded us about the "in between", something I have blogged about before over the years.  This was a little different take for me, and so applicable at this stage in my life.  I have always, always recognized that my greatest growth comes in the "in between" moments, in the awkwardness of not knowing what is next, in the patience that comes with waiting.  What I hadn't thought about was what was pointed out this weekend, and maybe it was just that I have never been in the frame of mind to hear it the way I did Sunday.

Our Hope grows in the "in between".  Between Good Friday and Easter Sunday is a time of grief, of doubt, and yet of heartfelt hope that this was not really the end, that something extraordinary was about to happen despite all logic that dictated otherwise.

Oh, how many times have we lived in suspended animation!  How often have we lived with questions hovering about medical conditions, about healing from traumatic experiences, about the ability to learn at all.  I have waited alone "in between" in hospitals far away as children were on operating room tables, I have waited for confirmation of learning and intellectual disabilities that I hoped and against hope I wouldn't get...and eventually wished I would have because not knowing was worse than knowing.  We have waited "in between" for five heartbreaking years for Angela and Olesya to come home, every photo we received reflecting ever older children with longer exposure to institutional neglect we didn't know if they'd ever recover from.

Our family has always been "The Family God Built", and right now, we are spending an extended period of time "in between"...years, to be exact.  We continue to work hard and do our part to educate and prepare, to learn and to practice skills. In due time God may surprise us all with how things turn out.  Surely, as usually happens if one listens to the Spirit and continues to say "yes" even when it makes no sense at all to others, there will be a beautiful and unexpected outcome, if only we dare to continue to hold true to being "The Family God Built".

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