Welcome to Living in Left Field, where living with chronic illness, raising three boys, having a child with Asperger's Syndrome, and raising children in general, means that I'm seldom on the same playing field as everyone else!

Monday, September 18, 2017

Luck and Blessings

Our last day in Jamaica was spent on an amazing beach with crystal clear water, white sand and blue sky for miles.  It was beautiful, I loved watching the teens have fun, it was glorious to wiggle my toes in the sand, and we were able to see some truly amazing fish--but you know my heart was still at the orphanage.  This was our decompression day, but it was difficult for me to decompress.  Okay, so it's difficult for me to decompress on any given day. 

Our bodyguard/tour guide/minder extraordinaire had chosen a private beach club of sorts for us.  The idea was that we wouldn't be bothered the street salesmen selling their wares as we relaxed.  The club had security guards patrolling the stretch of beach to keep street salesmen at bay, but really, there's only so much one can do with open waters.

My best friend swears I stood on the nearest lifeguard stand yelling, "TOURIST WITH AMERICAN CASH!!  TOURIST WITH AMERICAN CASH!!!  COME AND GET IT" as I waved wads of cash in the air.  And the way Noah acted, I really actually did.  I bought several things from a few of the  salesmen, much to Noah's horror.  You have to remember, he was my protector on this trip, and he took that role seriously, especially when I engaged with the locals, and especially when I attempted to haggle with the locals over my purchases.  I knew I was getting taken, so to speak, but as I explained to a very frustrated Noah, that's just kind of the role you know you are going to play as a tourist.  Each and every one of them pled to me about having to eat and feed families, mon, and well, I just wasn't going to be that gullible.

"Mom, you're going to get both of us shanked."
"Noah, they want my money, calm down."
"Exactly!" *hissed through clenched teeth*

I still think it's kind of funny Noah used the word 'shanked.' Does that make me a bad mom?

One of my purchases was a necklace for Avery.  The gentleman I bought it from insisted it was handmade, and insisted even further the beadlike thingamabob on it was some sort of expensive African wood that brings good luck (it looks like plastic to me), therefore I should pay $20 American cash for it.  I told him I would give him $10.  "A man's got to make a living, mon! $15!" I did get it down to $10; after all, a missionary has to live, too.  And, as I explained to him--I'm a Christian.  Luck means absolutely nothing to me (Noah hissing in my ear and pulling on my arm: "Moooommmmm......").

Avery wears that necklace almost all the time now.  And I hear him tell that story to anyone who will (or won't, as sometimes the case may be!) listen.  He even includes the part about Noah telling me I'm going to get us shanked.  I'm not sure Avery knows what 'shanked' means.  It makes me smile, and even laugh a little.  I love hearing Avery tell this story.

"I'm a Christian, so this luck bead is meaningless to me, but it's still kind of cool because it's from Jamaica.  Or it's from Africa.  I don't know.  But my mom almost got shanked over it."

I smile because I know he isn't just repeating what he's heard me say.  I know he understands the difference between luck and blessings, and what they mean to us. He corrects me when I say I'm the luckiest mom, "No Mom, you're the blessiest mom!  We don't believe in luck!"

So yes, I paid $10 for a luck bead.  But my blessings are priceless.

Sunday, September 10, 2017

Avery's Faith

This kid.  I'm undone.

I've shared my fear here on my blog, I've shared it with my friends, and I've shared with Shawn.  I've done my fair share of crying and yelling at God.

I've also done my best to hide all of it from Avery.  Some days I'm more successful than others.

Avery, on the other hand, has remained brave.  We've talked about the seizures and he says he's not afraid.  He's faced each new test with stoicism and bravery, even as they've torn my heart to pieces and I've wanted to be able to promise him this is the last one. We pray for healing, we talk of miracles, and research the brain.

A few nights ago we were praying for Avery's healing and I couldn't hold it together anymore.  Avery reached up, grabbed me in a hug, and reminded me, "It's going to be okay, Mom."

Today on our way to church, I heard from the back, "Mom, when God heals me, I want to call in to Wow God Wednesday and tell people about my miracle."

Miracle.  My boy has such hope.  He has such faith.  He believes.  He knows.

This kid.  I'm just undone.


Tuesday, September 5, 2017

Perspective, Experience, and Everyone's Fight

We took a drive to put seizures behind us today.  One of our ventures took us into one of my favorite antique shops. I didn't feel as though we behaved any worse than usual, but we seemed to be bothering a particular woman every time we passed her.  It just struck me as odd, as we really were pretty tame compared to how we can usually be!

Shawn commented on it, asking me what I thought her problem was--I mean, we were really catching some looks from her!  

I began looking at us with different eyes, trying to figure out what she saw when she looked at us.

We had our three boys with us.  I was proudly flaunting my motherhood, wearing my "#outnumbered: boymom," shirt.  We were laughing, having a good time.  She didn't know our back story from Adam's (or Eve's,  for that matter).  She didn't know what we were out to escape today.

Nor did I know what she and her husband might have been trying to escape today, either.

There was a time, before Avery and before Ezra, I was SO.  ANGRY. at families like ours.  I was SO.  ANGRY. at women like me.  I hated families and women like them just for existing.  Why do they get to have some many kids and I don't?  Why do they get to have fun and I've buried a child in my heart and have wanted nothing more than more babies in my womb? Why am only only allowed one child when I want so many more?  No one understands me.  Everyone sees me, but no one sees the pain I've buried so deep.

I was so bitter. I was so angry.  I really had to pray my way out of it. It was not a short, easy journey. I will be honest here--it was not Avery and Ezra who got me out of that hole.  It was GOD, who made me whole.  It was prayer, that renewed me.  I know many think I'm all better because I have Avery and Ezra, and while my gratitude exceeds any imaginable expectation, they are not the reason (the only reasons) I'm all better.  There are times I want to wear my testimony on my shirt, you know?

Anyway, I'm digressing.

I said to Shawn: "What if her story is similar to our story?  What if we remind her of something she just wants to forget?  What if we remind her of her heart's desire?  What if she needs the kindness and love we did?"

It changed how we looked at this precious woman, and it changed how we thought of the way she looked at us. When we passed her the next time, we smiled.  We didn't judge, we didn't wonder how we'd wronged her, and just did our best to understand that yes, while it was possible we may have just been on her wrong side, it was also entirely possible we reminded her of something she needed to forget.

Kindness and perspective go a very long way.

"Be kind; everyone you meet is fighting a hard battle." (many authors attributed)



Tuesday, August 29, 2017

Fear

Fear: (noun) to be afraid and worried; to expect or worry about (something bad or unpleasant); suggests a strong feeling of not wanting to accept or deal with something bad or unpleasant;  painful emotion felt because of danger. (Merriam-Webster)

Fear: Powerful tool of the enemy (Amy Furr)

Lord, I’m weary. My energy is sagging, and my motivation is lagging. And I am so in need of you. I need your strength and your fresh touch. Your Word says the joy of the Lord is my strength. I need your joy to replace all the bone-tired parts of my mind, body, and soul. ~Amen

As the definitions above state, fear is a powerful emotion, as well as a powerful tool of the enemy.  It is an emotion I'm feeling a lot of recently.  I'm afraid for my boys and everything they are going through.  Not just Avery, but Noah and Ezra, also.  Fear overwhelms me.  It is a darkness that envelopes me, crushes me down and leaves me weak.  It attacks me, eating from the inside out, kicking my fight-or-flight response system into high gear. There is nothing about me that exudes peace or confidence at the moment. I feel defeated, completely crushed.  It's more than fear, it's a deep groan, a dark foreboding. My mind is constantly working, my body always ready to react, yet I'm exhausted in every sense of the word.  I'm on sensory overload and really just want to hide away, and tend to my kids. I want to wake up and realize everything was just a bad nightmare, but I don't sleep because I'm listening for Avery.  I am exhausted from fighting enemies I cannot see or hear.  I want to get back to 'normal.'

Oh, my soul
Oh, how you worry
Oh, how you’re weary, from fearing you lost control
This was the one thing, you didn’t see coming
And no one would blame you, though
If you cried in private
If you tried to hide it away, so no one knows
No one will see, if you stop believing
Oh, my soul
You are not alone
There’s a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
‘Cause you’re not alone...
(Casting Crowns, Oh My Soul)

Many times, anger is the easier emotion for me.  It has always been easier for me to be angry than to be afraid, or sad.  Anger makes me feel more in control for some reason, and I really don't like feeling out of control.  Fear and sadness leave me feeling too vulnerable.  Anger in these situations also makes me feel as though I'm blaming God, and I'm not.  Fear is a distrust of God, though--the enemy's handiwork.  Two friends and I have wondered if I could be under attack, my fear and anxiety are so great, and we have praying against it.  Spiritual warfare is a very real and powerful thing.  The enemy does not want to see me succeed--as a mother, as a Christian, as a leader in my church, as a wife, as anything.  If I fall and fail, that is a success for him, and one less Christian for him to contend with. I continually say that my full trust and faith are in God alone, He's never let us down before, but my fear and anxiety are very apparent.  That is a contradiction, unfortunately.  With all the fear I feel, I may as well point my finger at God and say, "He did it!"  I don't want to do that because I know in my heart it is simply not true.  So, why the fear?  I don't believe I have little faith; I believe I have faith that can move mountains, but I also have this intense fear.  This is something I truly do not understand.


He replied, "Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you."  Matthew 17:20

This morning during praise and worship I was reminded of something.  Last year, there was a little girl about Ezra's age named Mirranda Grace.  She suffered a medical crisis and I prayed mightily for that precious little girl, just as I would my own child, even though I did not know her.  God took her home to heaven to heal her in the end, but I do not believe my prayers were empty or for naught.  A line from a song we sing in church became my prayer mantra for her, as she was in a coma, attached to many machines doing the work for her little body: "It's Your breath in (her) lungs," and I added "and Your blood in her veins."  This morning, as we sang that song, I realized that needs to be my prayer mantra for my boys.  Lord, it is Your breath they are breathing in and out of their lungs, and Your blood pulsing through their veins.

Just as I prayed for Mirranda Grace and her family, I know we have an army praying fervently for us, and for Avery in particular.  I am strengthened by this army, and the enemy cowers from the light they make.  When I am too worn to pray, many others are praying in my absence.

...Here and now
You can be honest
I won’t try to promise that someday it all works out
‘Cause this is the valley
And even now, He is breathing on your dry bones
And there will be dancing
There will be beauty where beauty was ash and stone
This much I know
I’m not strong enough, I can’t take anymore
(You can lay it down, you can lay it down)
And my shipwrecked faith will never get me to shore
(You can lay it down, you can lay it down)
Can He find me here
Can He keep me from going under
Oh, my soul
You’re not alone
(Casting Crowns, Oh My Soul)

 Yes, my fear is great.  My anxiety is eating me alive.  But my God is bigger than both of those.  God will protect my--His--boys. God is bigger than seizures, the fear of HIV or hepatitis, and He is bigger than Ezra's SPD.  He will make good from all of this.  I believe this.  I don't know how long it will take, but I know He will see this to end, as He has with everything else.  The enemy will not have this, he cannot have my family.  We serve a MIGHTY God.

“So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Monday, August 28, 2017

Exhausted Angels


The other day we discovered Avery broke a random key off in the tractor ignition in an attempt to start it.  Even though we are all (including his counselor) still in awe of the strength it took to do so, he wound up in a heap of trouble for breaking the tractor. 

Shawn and Noah replaced the ignition switch, but the mower still wouldn't start.  They fiddled and they faddled, I think Noah might've sworn under his breath more than Shawn swore out loud (I didn't keep track).  It still wouldn't start.

Shawn finally just started pulling parts out of the tractor and inspecting them, piece by piece.

A fuse.  Halfway in, he pulled out a blown fail-safe fuse.  

When Avery cranked that random key as hard as he could, this fuse blew, no doubt, saving his life.

When Shawn went to replace it, it was about $2.  

A two dollar fuse saved Avery's life from all the electricity that would have flowed through that random key and into his body.  

Seizures aside, this kid has got angels.  Exhausted ones for sure.  

Someone remind me to leave some wine on the doorstep for them.  

Sunday, August 27, 2017

Teenage Wisdom

"Mom, I love you, so I'm just going to say this--You need to take a break before you break."

These were the words spoken to me by my 16 year old son last week. While he was driving home, I had opened up my Instagram for just a quick scroll-through. I saw that Batman, an orphaned newborn pig adopted by one of the rescue farms I follow, had died, and I burst into sobbing tears.  There's a lot of that going on lately, and I'm a sensitive and emotional person anyway, but as attached as I had become to an orphaned piglet I had never met, there *may* have been some transference as well.

Noah continued, saying with everything happening with Avery and Ezra, I have such little energy already, and that energy needs to be reserved for them, not wasted on distressing news and social media.  "Please take a break from social media and from reading the news, it's destroying you.  Life is destroying you.  I hate seeing my mom like this."

How, and when, did my little boy become such a wise young man?

No truer, wiser words have been spoken.  I am under so much stress that I am pouring from a dangerously nearly empty cup.  Sadly, I do not have the time, the patience, nor the energy, to refill that cup.  I have nothing left for myself right now, and Noah is correct, I certainly cannot spare anything on sad news and upsetting social media posts.  I am doing everything I can to keep myself together in front of my kids, especially during Avery's procedures and Ezra's therapies, when I need to be Mama of Steel and pillowy soft so they panic less and are comforted by me (that's the idea anyway).  Once we are home and everyone is settled, that's when I can escape to my closet and fall apart.  I fall apart in church, too.  My safe place.  But when the kids are around, I need to be able to keep it together.  With super glue and Xanax.

My cell phone, and everything on it, has always been my escape.  A quick scroll through Instagram, a quick check of the news, a fast email read or sent, a text sent here or there.  Whether I'm in a waiting room, at home with the kids, in the grocery store--wherever I am, sometimes I just need to check out for a minute or two.  I've also used these things for prayer.  I see a need in the news, or on Instagram, and as I've explained to my family, someone needs to be in prayer, those in need deserve prayer, even if they don't know a stranger is praying for them.  But these things are consuming me.  And I just don't have the extra energy to allow for that.

I've taken Noah's advice, and turned my phone into a virtual brick.  It is now only good for texting, checking the weather, sending and receiving emails---and, get this, making actual phone calls (What??? A cell phone that makes phone calls? Get outta here!).  I can't tell you I feel any kind of relief.  Out of habit, I'm still picking my phone up several times a day to check the news or Instagram, remembering they aren't there, and putting it back down.  I know I should be filling that time with other things like cleaning the house, prayer or other productive means of passing time, but honestly, I can barely get myself off the couch.  I just don't have the energy, so Ezra is getting a lot of tv time (Mother of the Year over here) and mama snuggles! The good thing is I'm not getting distressed by (other) things beyond my control in the lives of other people.  I'm plenty distressed by things beyond my control in my own life.

Noah's a smart kid.  He's a good, smart kid.  I'm beyond blessed to be his mama.

I love this wise man-child of mine.

Saturday, August 19, 2017

Letting Go

Last week, I declared today Cleaning Out the Garage Day.  I'd tripped over one of the kid's toys for the last time! and it was time to clean things up and out!

We are storers of crap, I'll admit it.  Alright alright, I'M the storer of crap.  When I don't want to deal with it, I box it up 'for later.'  Some of it moved with us from our townhouse to our first home in 2001.  Then we just accumulated and accumulated over the years in that home. Stuff was boxed and stored away in one attic, then another attic, then decorated with here and there, then boxed away in this shed and another shed and the garage.  When we moved here, I threw some of it away, but still, much of it came with us two years ago to deal with 'later.' Yup. Later.  Even though they were the kids' toys I was tripping over, it was my stuff that really needed going through.

We started this morning by moving everything out to the driveway (No, sorry, we're not having a yard sale... No, no I'm not interested in selling that anyway....), and I got to work going through all of our storage boxes.  ALL.  OF.  THEM.

Oh my word, the things I've kept!  It always amazes me what I think I can't live without, then end up tossing months or years later.

Over the first eight years of Noah's life, I kept everything. E-V-E-R-Y-T-H-I-N-G.  I documented every single second of my only child's life.  I found entire bags of baby clothes I had stored away, but really had no specific meaning to me, other than I just wasn't ready to part with anything baby-related at the time.  There were Halloween costumes, baby shoes, crib sheets and changing pad covers.  I still had all of the cards friends and family sent when he was born, his first birthday cards, and birthday cards from years later.  I kept every single worksheet, project, test and paper from preschool forward, all of his VBS projects, and everything he ever created at home.  There were all kinds of miscellaneous Noah-related things in those boxes, too, along with daily video recordings from every day for the first year of his life, and other recordings from birthdays, holidays and other special days, and even random days over the next eight years. Again, much of it really had no specific meaning, other than Noah was destined to be an only child, and I just wanted to hold on so very tight to every single moment.

I remember the days of saving things "just in case," then the devastating, tear-filled day I officially gave up after one of my doctors appointments, and donated the bigger items to a residential pregnancy center for teens. I still remember everything about that day, right down to what I was wearing, and how angry and jealous I was with the teenage mothers.

I let go of so much today, physically and emotionally.  It was incredibly cathartic.  I donated all of the clothes I thought I couldn't ever part with, the Halloween costumes, and even those sweet little baby shoes.  I saved two of my favorite maternity shirts, then donated the rest of my maternity clothes.  Those things will better serve someone else than they will sitting in a box in my garage (Okay, who wants to remind me of this when I finally get around to going through Ezra's closet????).  We saved a few of Noah's cutest projects, and tossed the rest.  And on it went.

Today led to a lot of reminiscing, laughter, a lot of tears, and a little bit of laughing so hard I cried.  I hugged Noah hard, and I really hugged those two little miracle boys of mine for whom I saved the smaller "just in case" things for.  Most of all, today led to a lot of letting go, and best of all, prayers of gratitude for everyone, and everything, I've been gifted.  Thank you Jesus, for so much.  Thank you for giving me the privilege of being their mama.

Oh, and I have a clean garage now, too!