Heavy (and The Light)

 Sometimes, life with kids on the spectrum gets heavy.  

Having three of them under one roof gets (insert your own personal choice of adjective here) HEAVY.

Honestly, I try to not think about it too much.  If I think about it too much, it just gets heavier.  

I know--I know--in the grand scheme of things, we're lucky.  Our kids don't risk the chance of dying from autism.  They won't lose a limb, or time out of their lives.  We're lucky our kids are on the mild end of things.  Most likely, with the proper interventions now, our kids will be able to function on their own as adults.  They could attend college and have families if they want.  

But sometimes, it's just. So. Much. When I stop to think about it.  

So I try to not think about it.

But on days like today--I can't help but feel the weight of it all.  

I can't help but hate autism just a little bit.  I can't help but just be sick of all of it and want to scream, shout, yell, cry, throw things and hit things. 

I'm so tired.  That weary kind of tired, not the kind of tired sleep will fix.

It helps to lean on other parents who understand all of this.  

Most of the time the weight turns to tears, but I genuinely hate feeling sorry for myself and my kids, and I don't like how it makes me feel like a victim.  

Also--those floodgates.  Oh, those red hot tears behind those floodgates.  Those angry, anguished, maternal wails.  That painful wailing which rises up from so incredibly deep inside me.  

Today though, I had a much needed reminder of Who is really carrying all of this heavy weight for me.  Who carries it for my kids.  My very HELP.  I was reminded whose Hand is in this, and on them.  

I was reminded of the Light inside the heavy.

He is good.  He. Is. GOOD.  When nothing else feels good--God remains GOOD.  

It is from Him where my peace comes from.  

It is from Him my children, my answered prayers--heavy autism and all--are from.  

I lift up my eyes to the hills—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.

Psalm 121:1–2

Well, At Least There's That

Sometimes I have to find humor where it really isn't. 

Sometimes it's not that I have to do so, it's that I just do. 

Most of the time my humor is self-deprecating and a little defensive.

I recently started seeing a new doctor.  To start things off, she ran a lot of lab work.

This woman is exactly who I've been looking for in a doctor.  Her approach has been a major sigh of relief for myself and Shawn.

The results from the lab work came back... And we're trying to figure out how I'm still standing.  How am I still functioning?  How I am waking up every morning and managing to get through my days?

 It's one of those things where this has been my norm for so long, I really don't know any different.  I don't know I'm supposed to feel better than I do--well, I do know, but I haven't had the energy to advocate for myself, to find better doctors, to scream for the attention my health needs.  The results explain so very much.

*This* is too low, *that* is too high... You get the idea.  The report was four pages of bad news, a sea of alarming red words screaming at us.  I did laugh as I read asterisked notations under many of the tests stating the lab ran them more than once because the results were so off.  Some of them more than twice.

Then, there it was.  Down at the bottom of the last page.  Big bold letters announcing the wonderful news.  My Covid antibody test was negative.

My laughter about the notations turned to cackling, Shawn's chuckling turned to full-on laughter.  I laughed until I had tears streaming down my face and couldn't breathe.

Well, at least there's that.

More than a Mom

When Shawn and Avery arrived home from the grocery store the other night, Avery said he had something to tell me during dinner.

After we sat down to eat and everyone was squared away, Avery filled me in about a mom he saw in the self-checkout line.

She had five small children (Shawn confirmed they were all younger than Avery) she was trying to corral and keep happy while attempting to just purchase her groceries (remember those days, mamas?).

"Mom, you would've had two of those kids on your hips and played with the other three as you scanned her groceries, dried her tears, made her laugh, and given her a mom pin, all while praying with her."

I made an excuse to leave the table for a moment--then had a moment.

With that, Avery saw ME.  Not Mom, not Teacher, Short Order Chef, Chauffeur, not Chore Minder--he just saw ME.  Avery saw me as a human being.

Avery acknowledged my heart, my desires to follow God's path set before me and my ministry.  Avery was able to appreciate I am more than just his mom.

The significance of this goes deeper than what I'm telling you.

As any mom of a child with autism will tell you, it's often difficult for our kiddos to relate to others.  It can be baffling for them to understand the feelings and emotions of other people, considering they are often perplexed by their own.  Most things are black and white, and deeper meanings can be elusive.

My boy sees me.

"This Too Shall Pass"

The other day I saw a meme which first gave me pause, then a great deal of laughter:

"Ohhh, this too shall pass!"
"So does uncontrollable diarrhea, but that doesn't mean it doesn't suck until it does!"

Not only did I laugh, I even passed it around.

It's possible I laughed a little too hard, and a little too long over this.  All the same--I loathe that phrase.  LOATHE.

As a Christian, one hears, "this too shall pass" often (Fun fact: Did you know this phrase actually originated from a Persian fable?).  I grew up hearing it, and over the past 18 months, I've threatened (under my breath, of course) to throat punch the next person who said it to me.

*Please note: I've decided the response from this meme will now be my response.  You've been warned.*

I mean--can we just allow others to feel their feelings completely, wholly, without trying to shut them down with Christian-speak?

Can we agree with the person who dares to say, "This sucks.  I'm sad," or "I really hate this right now"?  Can we be in the moment with our friends, our families, our children, our fellow parishioners and their feelings, rather than shoving them into the future, where we are more comfortable, but they aren't yet ready for?

It boils down to discomfort, doesn't it?

In shutting others down, we are gravely invalidating them.  Think about that for a minute--we are squelching the voice of a fellow human being.  We are robbing them of their power, the only power they might feel they have in a specific situation.  Without so many words, we are saying what they're going through, what they are feeling isn't important.

This is how children learn to be silent.  This is how children grow into adults who don't know how to work through their emotions, who don't know they are important, and who don't know it's okay to feel how one feels.  This is how we shut others down before they can even begin.  It's how we offend others, lose friends, and cause rifts within the church, the workplace and other communities.

I'm sure most people think they mean well.  In their minds, it is akin to a pat on the shoulder, a way to comfort another person, to tell them no matter how bad it is now, it's not going to last (sooooo... perhaps just say that instead???).

I think sometimes--perhaps even most of the time--it's said without even thinking, it's an automatic reaction.  I wonder if sometimes it's used even in a flippant way, though.  They don't want to take the time to listen, so they throw out an easy catchphrase.

It just rings with insincerity. 

Let's make a promise to each other: Let's begin with sincere hearts for one another.  Let's sit down and make time for intentional conversation.  Let's check in, and check on, each other.  Let's promise to be more purposeful with our actions and our words.

Even if it's about uncontrollable diarrhea.

Faith Like My Boy

When I became a mom, I envisioned myself as the teacher in our relationships.  I would be the mom to impart all the knowledge, and then some, upon my children!  I imagined myself as the wise adult, helping my children grasp everything they would need to know for adulthood.

Good grief, how wrong I was!

I quickly learned I'm not always the teacher.

Many, many times, so very often, I am the student and my children are my teachers.

My kids are my mentors, my professors, opening my eyes to things I could never imagine.  Daily, they teach me more than I could ever hope to teach them.  I am but a mere pupil.

I frequently forget important lessons.  Sometimes, there are lessons I haven't learned at all yet.

And God uses my kids in amazing ways to educate me.  

Yesterday, while at the vet for Elijah, I was reassuring Avery.  I told him the doctor would make his duck better and we would all get through this.  My teary boy stopped for a minute, looked me square in the eyes and firmly, confidently replied, "NO, Mom. GOD is going to make Elijah better."

And I have no doubt that God hears Avery's prayers and is already busy answering them.

Oh, to have the kind of faith Avery reminds me to have, time after time after time.  This boy of mine. It's such a privilege, being his mom--as well as his student--getting to raise him, having this front row seat to his life and his love for Jesus.  

Confessions of a (SAHM, Homeschooling) Quarantined Mom

Does anyone know what day of the week it is?  What month?  Are we still in 2020???

What is even going on anymore????

The littles and I have been stuck safe at home for nearly 6 weeks.

According to our state, we've got 6 more weeks to go.  Six.  More.  Weeks.

Due to my health, I cannot leave the house.  Target... I miss you... Starbucks... Do you still remember my usual?  Shawn is essential, which means he's got to go into the office.  It also means we see very little of him.  Noah is out of work, but running calls.

We're not making any unnecessary errands, we finally have enough TP and paper towels, we haven't wanted for cleaning supplies, we're washing our hands, sanitizing Shawn's and Noah's cars, they're following necessary safety protocols at the station and the office--we're doing our part.

The littles and I finished school about 3 weeks ago.  Avery and I have some loose ends to wrap up, but we're pretty much through with it.  He was able to finish up his co-op tutored classes, as well as his independent classes through Zoom.  God bless his teachers, tutors and the creators of Zoom.  We could very well have just ended things the way they were with classes, but our teachers and tutors have worked around the clock to ensure proper closure for all of our kids.  While we were scrambling to explain things to our kiddos, they were scrambling to put measures in place so we could still say hi to friends, have conversations, play games and have classes.

I will be honest... I've neglected my mamas and our group.  We had to end our Embrace Grace group with the promise of throwing the baby shower; our Bloom had her baby without us being able to cheer her on, and have only seen her sweet little girl via text.

Being an introvert and seldom leaving the house as it were already, I really thought we (I) could nail this.  It didn't seem much would change for us.  We had this quarantine down! Not much would change for us, right?

And then--everything changed, while staying the same.  Does that make sense?

Y'all--this is hard.  Like, hard hard.

And I really don't like saying that.

I don't like feeling like a complainer.

I know how fortunate we are in this situation.  We have so much to be grateful for.  And we are.  I know so many of us are in similar boats.  I know allll sorts of things, but... This is HARD.

Like most kids across our country and around the world, mine were suddenly yanked from some of the comforts and friends they knew, struggling to understand and grasp the suddenness of the uncertainty so many of us were thrust into.  Ezra was excelling in OT one minute, making incredible strides--then the office closed.  We're continuing what we can at home, but we've still seen some regression.  It's frustrating.  Avery and Ezra are both extroverts, and this has been horribly awful for them.  Avery's anxiety has come back in the forms of tears and nightmares, and he's back in our bed by midnight most nights.  He's been afraid to even go outside, admitting to getting in trouble with the police.  Reassuring my kids has become a 24/7 job.  Ezra's best buddy from co-op has promised him a play-dough playdate when this is over, so every day Ezra asks if he will see Isaac today.  I've lost count of how many times I've answered, "Not today, sweetheart.  Soon, though."  With most events, we are able to make check boxes, framing things as "(fill in the blank) more sleeps!"  But with this, there are just too many sleeps for him to comprehend.  We scrambled to find a cake, flour, a cake mix--anything--for Ezra's birthday.  Friends mailed their own flour and their own cake mixes to us.  I sincerely hope you have friends like mine surrounding you.

Oh, and to those who have said this quarantine is an introvert's dream come true--I have some strong, scary words for you.

Just as quickly as classes were closed, so were our church and our groups.  We were all left floundering, wondering what is next and how to keep in touch.

We miss our people.  We miss life outside our yard.

On any typical day, our household is incredibly intense.  It's just who we are as individuals, and who we are as a family.  During this crisis, as much as we've tried to downplay it for the littles, we've just become more intense.  Between you and me?  I didn't think that was possible.

On a difficult day, pre-quarantine, I had the ability to pack everyone in the car and hit Chik-Fil-A, head to Target, grab a chai and cruise the aisles with the kids.  We had the opportunity to get out of our own heads backyard and head to a park.

We have gone for two rides, we've done a couple "social distance" playdates in driveways, and we've made some surprise love deliveries to a few porches.  We leave fun sidewalk-chalk messages at the bottom of our driveway, and rearrange our animal statues in the front yard, hoping to provide some laughs.

While other families are struggling to learn togetherness, balancing work and homeschooling, finding themselves suddenly in a situation we long ago became accustomed to, showing off their color coded schedules, proclaiming the many lessons they're learning about cherishing these times and their children--yeah.  They want to share their pearls of wisdom with the world, absolutely certain these are things everyone else has yet to learn.  Could you... Please just, maybe not?

*ahem*  Sorry.  Quarantine Amy has no chill.  As I said, we've become um, a little more intense.

You know what I've learned, though?  Actually, this is something I already knew going into this.  *The days I forget my sense of humor are absolutely, without a doubt, the most difficult.*  Read that again.

On a good day, pre-quarantine, I was not the schedule-oriented, color-coded, get-yer-butts-in-gear mom, as so many on social media have shown up to be.  We've found that doesn't work for us; we work and function better in a more relaxed atmosphere--okay, what qualifies as relaxed for us.

Pre-quarantine, I had stopped comparing myself to social media standards, I had found my tribe, I was rolling.

Do you see where I'm going with this?

I am tired.  I miss human contact outside of my own people.  My depression has plummeted, I'm trying to hide my own anxiety from my kids, I've had a massive flare up with swelling, migraines and intense pain.  We're all tired.  We're all weary.  I know we're not alone.

I've given up the basement to the children.  Psstt... Silver lining to sending them to the basement: I'm saying the word 'penis' less...  I've thrown devices at them for just a few minutes of quiet to myself...

Confession time: Sometimes, I scream into my pillow.  Or I attempt to hide in my closet with what's left of my Hershey bar stash.  Raise your hands if you're with me.

Right now, it just feels as though we're in survival mode.  I'm certain that applies to the majority of you, as well.  I wish I had some tips, some words of wisdom--anything for you.  But really, all I can tell you is--stay healthy, stay home.  Let's keep picking each other up.  Let's keep rallying around each other. Let's keep reminding each other that yes, it's okay to admit this is difficult.  And yes, we can be grateful even while admitting things like this to each other.

And--y'all--those first hugs when we emerge from this are going to be absolutely golden.

372 Days

My sister died one year and one week ago.  I haven't written about it because I haven't known what to say.  Words have failed me again.

I also haven't wanted to dwell on it (it's easier to just pretend it's not there--I wanted to ignore the day and go on as usual, whatever that is)--I know the floodgates need to open, but I keep them bay, allowing only a few tears to escape here and there.  The more I think on it, the more likely I am to reach that brink, the more likely I am to go over it--and can I come back from that?  I don't know the answer, and I don't like unknowns.  I don't like feeling not in control.  I just have so much which needs doing, and I really don't have time for Mommy-Needs-A-Few-Days (years)-In-A-Cave-To-Cope.  There's only one of me, and just so much of everything else that needs to be done.  I feel as though my kids don't need to see all of this either--yes, they need to see me crying, yes they need to know it's okay to feel, and deal with emotions in a healthy manner, and yes, it's up to me to teach them the 'proper' way of grieving--but this mess, this is not what they need, and this mess, this is not the example they need.  I am simply not there at this time.  I've put off therapy (I need therapy), asking for prayer (I need prayer--but when everyone else is asking for prayer, who do I go to?), attending prayer services (I need prayer services)--and even attending church (I need church).  It's all just too much, still.

That said, I haven't gotten through just about a single moment without either tears threatening, or full on tears for just a few seconds before I pull myself together and announce, "Enough of that," to the universe, God, my husband, to whoever is listening.  But still not the completely full-on, let-go, body-wracking sobs my body, mind and soul so desperately need.  

I know most people have forgotten about my sister and my friend anyway, so what's the good in reminding them?

So I push it away.  Everything's fine.  Everything's okay.  Everything's great.

At times, I feel as though I'm hanging on by a mere strand.  Not even a full string. Certainly, not the full hem of His garment.

There is still so much damn pain.

Yesterday, after a bushel full of crap, I talked with one of my sweet friends about it all, baring my soul to to her, knowing I wouldn't be judged; a friend who would listen and would only offer love and sincerity.  She wouldn't try to fix me, or offer unwanted help--she would quietly sit beside me (even though we are states apart), perhaps hold my hand in the quiet, not trying to fill in the silence and emptiness with her own words, and most importantly, she would LISTEN.  She did not judge, she did not offer empty sympathy--she would be exactly what--more properly, who--I needed in that moment: A sounding board full of love.

To be fair to her, it's not been the most pleasant month for her, either.  Knowing it won't solve either of our problems, we both still wish February would just be long gone.

After I poured out my heart, she replied; she knows the saying is "'God doesn't give us more than we can handle,' but He does.  Yes, yes He does at times."

Chuckling to myself (that on the verge of completely losing the rest of one's sanity kind of chuckle) because of having that same thought over the past several weeks. He absolutely does--and my training has the answer to that, but so does my inner four year old.

She urged me to continue.

Well--as a mature Christian, and with my training, I know while yes, God absolutely does give us more than we can handle as humans--or, perhaps more appropriately allow it --it is not God's works which we can humanely handle.  Those are best left to Him.  However, in those same moments, God ALSO provides us with the tools, the people, the wisdom, the guidance--and every other single thing we need to handle them.  We need only need to follow Him.  Could--will--it take time?  Oh, you can bet your pants on it.  But this a part of the entire process of growing and stretching as a Christian.  God plants the seeds, helps us water them--and in turn, we must endure the oftentimes painful pruning process as those seeds grow.  And we are merely humans.  We cannot accomplish God's works without Him.  This is the process in which we learn our reliance upon Him.  Does this process suck at times?  You already know the answer, so I won't use my colorful language to describe how much it sucks.

Then there's my inner 4 year old.  SHE is sticking her tongue out at God, "PBBBBLLLLTTT!" and kicking Him directly in the shins.  I. DO. NOT. LIKE. THIS. MAKE. IT. STOP.

I then gave my friend a caveat of sorts, bringing my thoughts back full circle:  God is okay with both.  He can handle it.  Much like when our children save their worst behavior for us because they know we're a safe haven for them--God can handle our reactions, our anger, our tears, our frustrating, and when we stick out tongues out at Him, kicking Him in the shins, because He is our safe haven.  Our hiding place.  He loves us SO. MUCH.  He's willing to withstand the shin kicking until we're spent, falling at His feet in absolute sobs, ready for Him to pick us up and ready to turn it all over to Him, ready to stand us up somewhat straight, ready for us to lay it all at His feet--no reprimand, no finger shaking, no judgment, just LOVE--and turn us toward HIS path, holding our hands, sometimes carrying us, ALWAYS holding us upright.

My friend and I agreed we're both 4 year olds right now, while also agreeing tomorrow is a new day.

She signed off telling me how much she loves me, as I signed off telling her the same, and promising to pay her bail.

And for the record, we both had a good laugh when we realized our conversation would most definitely turn into a blog.

Y'all, we ALL have moments we stray--or want to stray.  The important thing is when we come directly back to Him, knowing, faithfully, BELIEVING, standing in that chasm for others and even ourselves, knowing there are others doing the same for us.