Protect

When Justice starts to complain about all his aches and pains, when he starts searching for sleep, I start to worry that he’s detoxing from something; that he’s self medicating. I become more anxious as he grows more desperate and agitated.

He retires to his room and I am left wondering, is he ok? Is he healing himself? Or is the noise in his head about to hold him captive all night long, and leave him exhausted by morning, with his mom forcing him to get up, get ready and get out the door for school?

I complain he doesn’t get a job so that he can drive and then I imagine, what if he did and then would I really want him to have access to a car when he’s struggling with his demons?

That’s not something I can take back, easily. 

Maybe God is still protecting us.

I am, once again, reminded that he is not normal. He may never be normal. I may never be ready for him to grow up. The risks just keep getting greater. I would rather have him, not normal, than to lose him forever.

Is this getting easier for him? Is he more in control? I know he has more control of his monsters, but is he controlling them? Or is he letting them roam, until they are out of control?

God, please continue to protect me from the unknown.

Please continue to work inside of him, to tame his demons. Empower him to take control. He is your son, and the spirit of Christ lives in him. Build his faith in you. Give him strength when he is weak. May his inner monsters shutter at your name.

Stay with us, both. Always. Protect and shield.

Amen.

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His Normal

Why can’t my kid be normal?

My heart is heavy. A few weeks ago I celebrated my son’s two year anniversary of his Pyrrole Disorder diagnosis. Life has never been so easy for him.

So I thought.

He’s been more social, making a conscious effort to hang out with his friends to play basketball. He had been hanging out with a couple of girls. He talked about getting a job once he turned 16. He’s been easier to live with. Less meltdowns. More smiles.

But something started to happen two weeks ago. His depression and anxiety started to rear their ugly heads.

He confided in me, life wasn’t going as smoothly as I had assumed.

Why? Why can’t my kid be normal?

He’s not been sleeping, something I thought finally was no longer a problem.

This kid has never slept. As an infant, we were always up every couple of hours. As a toddler, I would wake up to him on the floor next to my bed, on the sofa that was right outside my bedroom door or I trip over him sleeping on the floor on the other side of my bedroom door. He’s shared with me, in middle school, after I’ve gone to my room for the night, he would sit in the hallway, out of sight, and watch TV with me until I turned it off, or I feel asleep.

Now, behind his closed door, with lights off, he lays there staring at the ceiling, alone with his negative thoughts. From time to time I would hear faint music or voices coming from his room, but I figured if he could still get himself up in time for school, I wouldn’t enforce a bedtime.

Yes, I am very aware of the expert advice of not allowing electrical devices in the bedroom at bedtime. But if the electrical devices are what’s keeping him up, why has he NEVER been able to sleep? And if the electrical devices drown out his negative thoughts, why would I take them away?

He’s not alone here. His dad has trouble sleeping at night. His grandparents were always up all night and slept during the day. My mother has always used sleep aids. Even his older and younger brother struggle with getting and staying asleep.

It sucks for all of them.

But, they’re not staying up for days at a time. They’re not have audio and visual hallucinations if they’re up for more than three days. They’re not falling asleep during class. They’re not getting stuck in their negative thought process. They’re not living without hope.

And if they are, I’m so sorry they are going through this alone.

This son of mine, is not shy about spreading the misery he feels. And I wouldn’t have it any other way. When I start to feel sorry for myself, I think about how much more difficult it is on him. This isn’t something he can quit and walk away from.

But why can’t my son be normal?

I really thought the new diagnosis was our miracle. His mood has been lighter. The dark cloud that lingers over our house, has been lifted. I stopped waiting for the microburst, that is my son, to hit without warning. And maybe his treatment had made life easier but obviously it has its flaws.

This is my son. This is his struggle…for all of his life.

Why can’t my son be normal?

My Sole Purpose

My son came to me, recently. “Hey Mom, remember when…?”

He proceeded to tell me story after story of the things he has done and I had no knowledge of. Some scared me. Some scared the hell out of me. My son is 15.

He’s not old enough to have a secret life.

My heart broke. The life I thought we had all lived, was still living, was a lie.

It has been almost two years now of being properly treated for the Pyrrole Disorder.

I don’t know if he was feeling guilty. I don’t know why he felt this was the time to reveal to me a hidden life I knew nothing about.

Maybe he wanted to share with me who he really is, or maybe who he really was. Maybe he finally felt free from his disorder that held him captive. Maybe he was shedding his skin to be transformed into the man he was designed to be. Maybe…I just don’t know.

Whatever his reason, I hope it served him well.

But I’ll tell you what his revelation did for me.

At one time, I was a single mom of four children, who never planned on having any children.

When his older brother was born, I had only practiced changing diapers on a friend’s child. I did not know how to care for a baby. I didn’t know their needs or wants. But I did the best I could.

Everyday, I did the best I could.

And I prayed.

God help me with this baby.

By the time I was pregnant with my third, I was doing this motherhood thing on my own. Thinking I had a clue about babies, but now I was doing it all on my own, and they’re getting older. I don’t know anything about raising kids. 

I was the oldest of two. I tried to keep my nose clean. My parents never had to spank me. A look would pierce my heart. Having to face any authority made me cry. I felt guilty for everything and often said sorry for things I didn’t do.

Never had I ever felt confident with kids, but by the time my fourth child came, and again I was alone, I knew I could do it. That I would be fine.

If I took my kids to church, I taught them right from wrong, if I tried to play defense to the bad influences out in the world… and I prayed; then I would be blessed with good kids. I would raise these kids how God has led me to raise these kids, and they will become the men and woman, he intends them to be. He will equip me. He will qualify me. He will lead me.

And as I sat and listened to story after story of what my son was telling, of the life I never knew of, of the boy I thought I knew, but even before the age of 15, was wearing a mask to hide who he really was, I felt smaller and smaller.

Hear me on this, everything I previously thought was true.

If I took my kids to church, I taught them right from wrong, if I tried to play defense to the bad influences out in the world… and I prayed; then I would be blessed with good kids. I would raise these kids how God has led me to raise these kids, and they will become the men and woman, he intends them to be. He will equip me. He will qualify me. He will lead me. But it’s not because of me, but because of HIM.

My heart cried out to Jesus, “Thank you, Jesus, for protecting my son.” At that moment a new reality hit me and my soul hit the floor.

All the books I had read about parenting, all the friends I sought advice from, all the workshops I had attended…they had all given me this false belief that I was in some sort of control. That, in the end, who my children eventually turn out to be, had in part, had something to do with my influence on them.

But let me be clear. My son should or could be dead or at the very least, impaired. But he’s not, and it’s not because of me.

In that moment of revelation, I learned the single, most effective and beneficial thing I had ever done for him, or any of my children, was that I prayed.

Dear Heavenly Father, protect my kids. Watch over my kids. Guide my kids. Help my kids. And various other requests I had made for my kids.

It was in that moment I realized I have absolutely no control of the world or the people in it. Including the children I have poured so much into.

That at the end of the day, when everything is said and done, regardless of what I have taught him, shown him, modeled to him; when my child is faced with a life altering, life threatening event, it is Jesus who has his back. It is Jesus who has his eye on him.

It is Jesus who knows him.

My heart breaks at learning I didn’t know my son. But it heals again, when I realize that the one who is everywhere and knows everything, answers my prayers; even when I don’t know it, and even when I don’t understand what I’m praying for.

I don’t know anymore if my sole purpose to raise these kids in a way, so that they will become the men and woman, God intends them to be.

I think now, my sole purpose was and is, just to pray for them.

God, you know the evil of this world. You know a darker side than I do. How silly of me to think I, someone who never has smoked pot, did any drugs, never cheated on a test, nor snuck out of my home, didn’t lift something from a store, or ever received an F in a class, could possibly understand or know how to raise one child, much less six of them in this place you never intended us to live in.

Lord, even though I am just now coming to understand the magnitude of your authority, I thank you for never changing, always being there; even if I don’t know it, understand it, or believe it.

I lay my children at your feet and ask that you watch over them. And if my only job here on earth is to pray for them without ceasing, then Lord, please continue to give me the strength to keep raising them up to you, not for you.

My prayer is no longer a hope that you will find favor in them, but the knowledge of truth that you already do.

Our Miracle

I sat across from Justice’ doctor and heard her say, “Since it’s been over a year since his last meltdown and he’s been off all his meds but one, I’m going to remove the diagnosises of Disruptive Mood Dysregulation Disorder, Pyschotic Disorder, and Receptive/Expressive Disorder from his treatment plan and change the Obsessive Compulsive Disorder to Anxiety. If that’s okay with you.”

Wait…Wha???

I sat back to reflect our last year.

Never in my wildest dreams would I even allow myself to dream of Justice living like this. I told his previous doctor if we could just get his meltdowns to once a month, I’d be thrilled.

Here we sit, discussing my son, MY SON who has struggled with life since birth. Struggled with expressing his feelings appropriately.

Whether he was happy or sad, he was always disruptive. Most of the time he was neither, and yet both at the same time.

He was dark and gloomy. A dark cloud hovered over our house.

I walked on eggshells around him as a baby. He had terrorized his siblings ever since he was a toddler. Middle school is when I stopped letting him be alone with his younger brother after receiving a phone call that he was chasing his younger brother around the house with a knife.

No one knew what was going to set him off.

No one knew when it was going to happen.

No matter how many times it did, no one was ever prepared.

He would start by clinching his fists and breathing through his clenched teeth. His eyes would widen, his face would turn red and he shook as he would speak, before he would violently turn into an erupting volcano.

He would scare me. He would terrify his siblings.

He would throw things, break things, hit things. His voice would change to one I wouldn’t recognize and he’d say things like, “I don’t care! I wish I wasn’t apart of this family! I hate you! I’m going to kill you! Call the police, I’ll make them shoot me! I wish I was dead.”

And of course, I was always afraid to call the police, because I was afraid he would be shot. So I delt with this alone. It wasn’t quietly, as you could image, but I was alone.

Then there was the day he whispered to me through a closed door that he heard voices. That they tell him to do things he doesn’t want to do. This was after he had pushed me for the first and only time.

I remember at five, pleading with his doctor to help me. I was afraid if I couldn’t control him at five, how could I ever control him at fifteen?

I was brushed off. I was told he was going through a phase that he would outgrow. I knew better. I knew differently.

His father told me time and time again his behavior with me was due to bad parenting. “He doesn’t behave that way with me.” Although, they only saw each other four days a month, and he was threatened if he acted up he would be sent home to his mother.

At school he was suspended more times than I can count. Most of the time it was because he wouldn’t explain his behavior and they felt he was defying their authority. They would send him home. When I would ask him what happened, he would say he didn’t know. At one time I told him just to confess to whatever they thought he was doing but he told me, “That would be lying. I didn’t do what they say.”

He was always misunderstood. I was one of them.

Why do you have to make life so hard? He couldn’t tell me.

As he got older, his meltdown became more scary. He would be sobbing and tell me he had done something horrible to someone, when I knew there was no way he could have done anything, to anyone. Although he would never tell me exactly what he thought he had done, he would act with such grief and sorrow as if he had killed someone. No amount of comfort could console him.

As the exhaustion of his meltdown would overcome him, he would curl up into a fetal position and cry on the floor in his closet, or behind a sofa, “I’m sorry. Please don’t hurt me. I’m sorry.”

Sometimes I could stroke his arm in comfort and reassure him he was safe, but most of the time I couldn’t. He would jump and move away from me. “I’M SORRY! I’M SORRY! PLEASE DON’T HURT ME!”

Who the heck is hurting my little boy? I thought I was watching my son lose his mind. I felt so alone. I felt so helpless. I felt so hopeless.

When he wasn’t having a meltdown, he was so incredibly sweet. Oh my gosh, he cared if he hurt someone’s feelings. He was so funny. He goofed around. He loved with his whole self.

But something would snap. It always would snap. He would turn into the Hulk. The difference was like night and day. And it would break my heart because I knew how much he hated to be like this.

He would tell me, “Mom, just let me go. I can’t anymore. I don’t want to do this, anymore.”

But never, never would I give up. Never would I let him go. We were in this together, as much as that sucked.

And then one day, out off the blue really, his doctor thought about maybe testing him for Pyrrole Disorder.

It had a test. And not one of those pen and paper tests that change with interpretation. No! This was a urine test.

He tested positive. That was great, but the treatment seemed iffy. Supplements I could buy over the counter.

At this point, he’s on Seroquel, Depakote, and Prozac, and she’s feeding me this line that he might be able to come off all these meds, or at least reduce them greatly, after years of playing with other cocktails of meds until we came up with this one.

I was hopeful, but not holding my breath. Mother’s of children with mental illness know, diagnoses and medicines always change, but never go away.

Throughout this last year, I slowly started to watch him change. He would get angry, and I would be ready to put out the fire, but the fire never came.

He became more social. He joked around a lot. He would raise his voice and then laugh at us as everyone got ready to watch him blow. He thought our PTSD was funny.

He’s still got that weird sense of humor. He likes things that are dark. He’s completely inappropriate. He likes to tip his toe over that line of respect, and then laugh it off. He thinks grossing mom out or making her worry or upset is funny.

He thinks he can make everything alright when he comes up to me and gives me a big hug, “I love you, Mommy!”

And he’s usually right, cuz I hug him back, “I love you, Jus Jus.”

And then he’ll say something just as offensive or as obnoxious, just to get one more, “Justice!”out of me as I push him away, and he can laugh one last time.

Oh my gosh, he’s a complete pain in my butt, but for an entirely different reason.

He’s a normal teenage boy.

His mood has been stable, that was the Mood Disorder. He hasn’t complained of any voices, the Pyschotic Disorder, and he seems to be able to express himself and is not getting confused anymore, the Expressive/Receptive disorder. You said yourself, it’s been over a year.”

“It’s been a miracle.”

“It really has. You should make a YouTube video of your journey.”

“Well, I write a blog. You can READ IT ALL, at KimSimister.com” 🙂

Dear Heavenly Father,
Thank you for your blessings. Thank you for your grace. Thank you for your strength. Thank you for your guidance. And thank you for our Justice. Amen.

In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation. – 1 Peter 5 :10