Protecting Superman

Tonight I feel an ache in my chest and it's a helpless ache.  I often think about how I understand how some parents of special needs children become alcoholics.  I understand how it feels to have this helpless feeling, this helpless sadness that sometimes becomes too heavy to work out.  Tonight, I am feeling that heaviness.

After CJ's IEP meeting last week, we were given an option to consider.  An option that would possibly secure a safe place for him as an adult.  Possibly.  And that option was to give our son up to the state voluntarily through the court system.  How could we do that?  How could any loving parent even be offered such an option?  It broke my heart in more ways than I could even articulate.  No.

I took this picture of our sweet boy a couple weeks ago.  He had found this old Superman costume packed away in a closet and wore it the whole weekend.  He did not want to take it off.  Why?  I wondered.  Why did he like it so much?  Am I thinking too deep into the meaning?  Or is it just a boy playing dress-up?  We'll never know.

But, the days since then have been hard.  He has had meltdowns at school and at home.  They have been more frequent for some reason.  The school is looking to me for possible explanations and I am looking to the school.  No one knows.  They seem to come out of nowhere.  But when he's happy, HE'S HAPPY and we LOVE seeing him happy.  But for some reason, he has been hitting himself.  Screaming.  Kicking, and thrashing around and we haven't discovered the triggers.

During our IEP meeting, we talked about how he only has 5 years left of school and how they will go by fast.  What is he going to do?  Where is he going to go?  How can we make sure he has a good quality of life?  How do we protect our Superman?

The pain is sometimes too great to think about these things and to also watch him hurt himself.  To get reports from school that he hurt himself and laid on the ground for an hour before he was ready to get up and be okay again makes me wonder what he's feeling or what he's thinking. As a mom, I want to help.  I want him to be happy.  I want him to be okay and yet I oftentimes don't know how to make that happen and it hurts.  I want to know why.

So what do I do with this helpless feeling?  I look for an escape.  I will submerge myself in the comfort of food or contemplate getting drunk just to make the pain in my heart stop.  I never do actually get drunk for a variety of reasons, but I do think about it.  I can almost feel the numbness when I think about it.

One reason is because I try my best to rely on the Lord.  There is a lot we do not know or understand and somehow, someway, we need to be okay with that.  We have to come to peace with that and HAVE FAITH and yet?  That is my struggle when it comes to the ones I love.  My heart knows that He loves them more, but my mind argues.  Oh the conversations I have with the Lord.  I sometimes feel like Jacob, wrestling with the Lord.  Pleading with Him and ultimately repenting, but it is a cycle that keeps on repeating.  I am ashamed of some of the ways I have behaved or reacted to this life.  I am often not graceful about the heartaches in life and yet His grace still remains.

We all have to navigate life and everything that comes with it.  The good and the bad.  But some people deal with the bad better than others.  It's amazing how quickly people will judge the actions of others without truly understanding what they are dealing with in secret.  I myself am guilty of this too I'm ashamed to say and have come to a new place of understanding with a perspective that has taken me years to see.  A new place of empathy for others.  A new place of "Can we just drop the facade and just be real?"

In all truth, CJ really is our Superman.  He has taught Chris and I more than I ever saw coming.  He is a hero to the ego of the human race.  He is a hero to my ego.  But the question still remains...how do we protect someone so special and innocent from the evils of this world?  How do we make sure he is cherished, loved, and cared for when Chris and I are no longer here?  How can we plan for his future?  There are so many questions that swirl around in our minds every single day.  And then when there's a "bad day?"  Questions swirl around in our hearts, down to the pit of our stomachs and then we are left in this narrow yet wide space where we have to make a decision on how we are going to deal with our helpless, unresolved emotions.  Do we eat?  Do we pray?  Do we drink?  Do we take an Ativan?  Do we talk someone's ear off?  Do we lash out at someone?  Do we go to sleep?  Do we break down and cry?  Do we shut down?  Do we do something crazy?

Tonight, I had a few pumpkin chocolate chip cookies...(Okay 6)....maybe 8, and a glass of wine.  I am working and writing this all out and praying that the Lord will quiet my soul.

The Morning After Break

It’s just after 8am and I already feel like a fatigued ball of spaghetti noodles.  I’m currently in a mental place between being totally numb and ugly crying.  But I try to posture toward totally numb for as long as I can.  Why?  Because I am a wife and a mother.  If I fall apart, it’ll make everything ‘not okay.’  Which everything is okay—in a nobody’s dying or going to jail kind of way.  We are happy, healthy, have clothes, food and a home.  We have much to be thankful for.

But we had a morning that we were kind’ve expecting, but were hoping wasn’t going to happen.  Today is Tuesday.  The day after Labor Day and the day when school starts back up again after a week long break from school.  We really did have a couple great days during the break.    We took CJ shopping for a new toy, took him out to dinner, to the library, and had an afternoon out for ice cream.  My favorite was the dinner.  CJ was SO happy.  As parents, one of the most joyful accomplishments is to see your child happy.  Not in a materialistically driven kind of way.  But a genuine, FULL OF JOY kind of happiness.  We live for it.

But, there were a handful of days where we couldn’t go out and CJ was in his room, free to watch tv, play games or visit with our pet cat.  Sometimes he gets bored and will take a nap.  We try to avoid this because it disrupts his bedtime schedule.

Yesterday was a busy day for us.  He took a nap.  Not good because school was tomorrow.  It wasn’t a long nap, but it was enough.

So my husband Chris, who’s a night owl, woke me up at 12:30am to tell me that CJ was still awake.  He told me he was hyper and partying with no signs of falling asleep soon, despite giving him 3mg of melatonin.  Oh no.

He also wanted to tell me to wake him up in the morning if I have any problems getting our CJ ready for school since he will most likely be tired which can ignite a meltdown.

Of course I watched CJ on the monitor until he finally fell asleep, which was about 1:30am.

So morning comes and I put my happy, low-volumed voice on to gently wake him up.  To point out that his brother has to go to school too and that he has chocolate chip waffles (GF of course) , CBD gummy bears and lemon water waiting for him on the table.  Some of his favorites.  I also gave him some berry flavored B-12 “yummy wake up spray.”  All was going well.  He was clearly tired but not upset.  He fully cooperated as I helped him get dressed.  He was even laughing while I brushed his teeth.  Phew.  Maybe we’ve diverted any kind of meltdown with talks of fall and how I was gonna start making him pumpkin chocolate chip cookies and pumpkin pie.  And his favorite, apple pie.  “I will make anything your heart desires CJ.”

All was going well.  My energy toward positive thoughts seemed to be working.  Then his van for school pulls up, we grab his backpack and we’re ready to go.

As we were walking toward his van, he hits himself in the head once with a quick growl.  “It’s okay CJ!  It’s a short week and I’ll have strawberries and blueberries waiting for you when you get home.”

He gets in the van and his agitation starts to escalate.  The driver starts to ask me what she should do if there’s a situation.  We try to talk and read minds at the same time because we don’t want to say anything that could further agitate him.  He starts to calm down and puts his seatbelt on.  All is good.  “It will be a good day, “ I say.  “I love you CJ!”

I close the door and off they go.

Okay, time now for me to change the baby’s diaper and take the 14 year to school before he's late.

(2 minutes later)

CJ’s van pulls back in our driveway.  FULL-ON Meltdown.  I see the poor driver lady had fear in her eyes.  I get Chris and he goes out to try and calm CJ down.  Instructs him to take off his shoes while he thrashes around, kicking a screaming.

I start to pack up to take the other one to school.  Chris motions me the go ahead.  He is now trying to get CJ off the van.  It is definitely a no-go for the van today.  Something we said we wouldn’t want to do because we don’t want to reinforce that behavior for every time he doesn’t feel like going to school.  But CJ needed to get it out, in his room, in his bed where everyone is safe.  Especially because the van was set to pick up another student after CJ.   So this morning, Chris went with safe and took him off the bus.

Lots of thoughts go through our minds in a short amount of time.  All without proper caffeination. ;). And lots of thoughts go through our mind well after too.  But at least everyone is safe and we will
move forward with our next plan.  One day at a time, one moment at a time.