Sunday, December 17, 2017

The Things I Didn't Say...

Today after Jake got home from work we decided to take the family out for a late lunch at Atlanta Bread and follow it up with some amazing shaved ice from Pelican's SnoBalls (highly recommend, by the way).  The older three kids had been briefed about being quiet and calm while in the restaurant, but we knew that like always, Zella would be the wildcard.  Luckily as we entered Atlanta Bread we were relieved to find that it was still as loud as ever inside and even an occasional outburst from Zella would potentially never even be noticed.

We ordered quickly and found two tables next to each other in the far corner of the restaurant, away from most of the other patrons.  As we waited for our food, the older kids managed not to beat each other (a sheer miracle) and Zella was happy to listen to her music (favorite song: "Crash" - Usher).  Within a minute or two of sitting down Jake and I heard a very loud, booming man's voice...I casually looked over to see a table about 3 tables over from us with an elderly gentleman and two elderly ladies seated with him, all finishing their lunches.  We heard bits and pieces of his "stories" as it was impossible to tune out, but again I was just grateful for the additional noise that could drown out what I knew would be at least a couple impending outbursts from our nearly three year old special needs fourth child at some point during the meal.

The food came after about 15 minutes and still everyone was on their best behavior...definitely strange in our family.  Jake and I tried giving Zella some french bread, which she pretended to initially like, but then quickly decided french bread is far better flying out of your mouth as opposed to going down your throat.  We moved on to some soup with similar results.  By this point she started getting restless, so I brought out the big guns - chocolate chip cookies (stolen from two of the kids' meals, sorry...not sorry).  She got through half of one and as I was preparing the other half "AAAAAARRRRRGGGHHHHH!"  The pirate had arrived.  Luckily I was able to shove the other half in her mouth before another scream ensued and life was pleasant again for another two minutes.  All this time I am still hearing the elderly gentleman forcefully telling his friends about his minister and whether someone stole something from him in a premeditated way (which I was unaware that theft could really ever NOT be premeditated...but to each his own).

Zella is done and yells out a second time, to which I attempted to quiet her and gave her the second (and last) cookie.  Part of me felt bad for giving her cookies for lunch, but the other part of me would essentially give her ANYTHING to prevent her from drawing attention to our already large family.  We told the kids to finish up as we knew we only had maybe 4 minutes to get out the door before she let out yet another screech that we would be unable to quiet.

As we scrambled to get all of our plates together and clean up a bit, Zella decided that 4 minutes was actually FAR too much time to give us and that she would go ahead and throw the remainder of the cookie on the ground after a mere 60 seconds.  A third time she yells and I put my hand over her mouth and say "NO Zella - too loud.  Quiet mouth!"  She just stared at me, no doubt calling me a choice word in her mind.

I then am stopped in my tracks by a familiar booming voice that yells "COME ON!  LET'S GET OUT OF HERE!  WE DON'T HAVE TO TAKE THIS NOISE LEVEL ANYMORE!"  I look over to find the elderly gentleman standing and glaring at myself and our family, specifically my fourth child in the corner.  The two ladies immediately try to quiet the man with faint "No no, it is fine!  Let's wait" and "We need to say good-bye to so-and-so," but he is undeterred.  "I HAVE BEEN WATCHING HER THIS ENTIRE TIME AND SHE IS DOING NOTHING TO STOP THAT CHILD FROM YELLING!"

By this point two other tables around this man are now turning around to look at him and are whispering to each other.  I looked at Jake and said far too loudly "Is this fool SERIOUS?!"  Jake had, of course, tuned this guy out 30 minutes ago, and had no idea that he had now turned his attention on myself and Zella and essentially our entire family.  Jake says "Surely he isn't talking about us...?"

Mr. Smiley continues on his rant, talking about how I am apparently not doing my parenting job (forget the fact that Zella was sitting next to Jake, her FATHER, but come take a trip with me back in time to the good 'ole days of the 1940s so you can see from a slightly different perspective that CLEARLY I was not mothering Zella appropriately.)  At this point I am done.  Absolutely done.  I get up from the table and stare down this man as I walk toward him from across the room.  He tries to retreat toward the door, but I begin speaking instead as I approach him and he stops.

"Sir, that child you are referring to over there?  She has a rare genetic disorder.  So rare, in fact, that she is one of 130 people in the entire world who have that particular syndrome."

He stops.  "Oh, wow!"  Naturally there is not even a hint of an apology in his voice.

I continue on.  "I apologize if her outbursts have offended you..." to which he interrupts me and says "Well, thank you" and begins walking out the door.  I again continue, "but you, sir, do NOT know the full story.  You will never know the full story."

He took one last look at me and walked out the door silently.  The two ladies he was with immediately approached me and apologized profusely.  I told them there was no need to apologize, that they had done nothing wrong.  One of the women said "He is just a fellow church member - we aren't really friends with him.  He should have never said that about your sweet girl." 

Having grown up in the independent Christian church, I know better than to simply stereotype Christian church-goers into heinous people who care nothing for children or the disabled and are only concerned about their own personal comfort level.  Two other families approached us after this man left and assured us that all of our children, including Zella, were "perfectly behaved" and that they were appalled at this man's behavior.  Just as these other families may or may not have been coming from church on this Sunday afternoon, I also realize that people like this man are not limited to just the church, but are in fact sadly represented in every religious and non-religious persuasion.


What if I had not spent the last 32 of my 32 years on this earth in church?  What if I had been traumatized by the Christian church at some point in my life?  Or grew up having never even visited a church?  What would I be thinking now?

I'll admit it...when I was walking over to talk to this man there were so many things running through my head.  My initial instincts were to also scream and potentially throw a few F-bombs in there just for good measure.  If I had the time to write this guy an emailed response regarding his behavior, it would have touched on these subjects...

*Sir, are you pro-life?  You are?  Interesting.  Well, Zella is the result of her family's decision to choose life.  What exactly did you think would happen when you staunchly sat back and "advocated" for pro-life policies?  Ahhhh, yes.  You wanted Zella to EXIST in-utero...but you could not care less about her once she was physically born into this world.  You would have preferred that we institutionalize know...for *your* comfort...lest someone disturb your baked potato soup bread bowl with three screams.

*Is there a particular reason you hate disabled people?  Be careful - you and Zella have far more in common than you would like...and I'm not just talking about your love of speaking 50 decibels past the sound barrier, as she is also a fan of this same phenomenon.  You and Zella are among our most vulnerable*** populations - children, the elderly, and the disabled.  All three groups are currently at risk of losing many benefits, including healthcare - watch yourself homeboy.

*Your fellow acquaintances tell me you are a member of a church - what would Christ say about Zella?  No doubt had He come in present day, Jesus would have agreed to an occasional half and half combo at Atlanta Bread, what with the Coca Cola Freestyle machine right there in-house.  But would He have stood up mid-egg salad sandwich and yelled at an almost three year old disabled child with the intelligence level of a 12 month old, and screamed about her poor behavior and her worthless mother?  I can tell you with 100% certainty that he would not.

John 9:2-3
"His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?'

'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God may be displayed in him.'"

Mark 10:14-15
"But when Jesus saw it, he was indignant and said to them, "Let the children come to me; do not hinder them, for to such belongs the kingdom of God.  Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it."

***Sorry, Trump - you may be able to regulate the hell out of the CDC, but you won't be banning the words I can use.

Friday, March 17, 2017

I Didn't Know I'd Find You Here

A few weeks ago I was struck by the lyrics to the first verse of Ellie Holcomb's "Find You Here"...

It's not the news that any of us hoped that we would hear
It's not the road we would have chosen, no
The only thing that we can see is darkness up ahead
But You're asking us to lay our worry down and sing a song instead

Since Zella's diagnosis in June of 2016, one of my biggest fears has been that Cole, Vera, and Asher will eventually grow to resent their youngest sibling...becoming embarrassed by Zella and her behaviors that are never age-appropriate.  Her therapies are a huge time suck and she is growing more and more difficult when it comes to bringing her to events with the rest of the family.  One day she will no longer look like a toddler, and from that day forward the general public will have even less tolerance for Zella.  Intellectual disability is a four letter word, striking fear and animosity in the hearts of other human beings.

Today I realized something monumental, however.  I may not be able to convince the public at large that Zella is still a person and her life is still worth the same as my own or anyone else's, but I will not spend any more of my time worrying about whether Cole, Vera, and Asher will love her the same as they love their other siblings.

This afternoon as we drove back from Atlanta, Cole told me all about his audition.  I was shocked to hear what he said to the casting director, though.

"They asked me if I had a big or small family, so I told them our family is big.  Then I told them about Zella...that she has special needs...and that Vera and Asher and I build forts for her.  I said she likes to knock them down, so now we use Asher as the wall to the fort and it seems to work better."

They don't love her the same.
They love her more.

And that is fine with me.

Wednesday, February 15, 2017

Adulting: Special Needs Trusts and Advanced Directives

One would think that by the time you have been married for 10 years and have birthed four children that you would certainly be considered an official "adult."  Zella has taught me that, in fact, I know nothing about adulting.  This morning Jake and I spent an hour and a half at a local law firm speaking to an incredibly nice attorney about all of the things we never thought we would ever talk about...

*power of attorney documents
*child trusts
*special needs trusts

...and the list goes on.

Questions included where we want remaining funds to go upon Zella's death...since she won't have children of her own.  Or who we would like her guardian to be...and the backup...and the backup's backup...and the backup's backup's backup.

We discussed how to create Zella's special needs trust.  Any money left to her will need to be put there and specifically earmarked for increasing her quality of life, but not specifically to take care of her education and medical care (because the government will then deny her the medical benefits she qualifies for).  Clearly we have outgrown Legal Zoom...

Adulting at its finest.

Friday, November 4, 2016

The Things You Never Thought You Would Have to Say...

On Wednesday night after orchestra practice as we pulled in to the garage, Cole asked the first of what I know will be many questions regarding the uncertainty of Zella's future.

"Will Zella ever learn to drive?"

"No," I said.  "Zella's brain is different from yours and it won't really allow for her to be able to learn that skill."

"But she will have kids, right?"

"No...but you can have kids and Zella will be there to play with them."

"Yeah!  By the time she is 28 I'll have kids and she can play with all of them!" he said happily.

And that was it.  In two minutes Cole had successfully reconciled what, for Jake and I, has been many months of agonizing over Zella's future.  He wasn't upset or sad at what we had said, but instead Cole took this new reality and seamlessly integrated it into his new dream for the future.  Cole knows that driving a car isn't everything and that growing up and getting married and having children isn't the only acceptable option either.  Each life here on earth has a purpose, and none of these lives will be lived out identically.  Different shouldn't mean better or worse, important or insignificant.  He made us unique so that we can each fulfill different parts of His master plan.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14