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?

The Mom I Needed to Be

Years ago, I had asked my boys’ dad if I could have three of his old shirts he doesn’t wear anymore.

I wanted to turn them into pillows, so the boys would have a part of their dad when they were with me.

I had a friend of mine, who knows what she’s doing, come over to help me. Remember, I’m not a crafty homemaker by nature. And it didn’t help I had a sewing machine that belonged to my mother, and in my lifetime I know had never been cleaned.

What should have taken a couple of hours, if I remember correctly, took the entire day and then having my friend take them home to finish them on her machine.

The important thing was they got done.

But here I am, years later, and one of my sons asks if I could re-fluff his.

Seriously? You still have it? It’s not destroyed? But you destroy everything? Why didn’t you destroy this?

Yep, he still has it. But to save face I have to tell you, it’s never been washed in all the years he’s had it. Gross.

So this morning, before work, I find myself looking around the house for my seam ripper.

As I sit down at the kitchen table with his deflated pillow and my ripper, we banter back and forth about how much work this is going to take me and that he should not make me do this, and how I’m a mom and it’s my job to do this for him, because I love him.

In walks one of his brothers, and guess what? Now I have to fix TWO of them!

Why can’t you be like your other brother? His is probably in one of the garbage bags of crap that he left behind, and is in the garage somewhere. He doesn’t care anymore. Why do you?

But if course, I don’t mean it. I don’t mean any of it. True I’m not looking forward to talking on this project, but only because it makes me feel incompetent. What would take other moms an hour to do, it will take me four.

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But it grows me as a mom. It’s challenging, and difficult, and I don’t particularly enjoy any of it.

But I love my boys.

Anyone who has a child becomes a mom. Qualifications are pretty low. But the opportunities are limitless. You get to be the mom you want to be.

God knows this.

He knew I would struggle as a mom. He knew I wouldn’t particularly love every minute. He even knew I would have a hard time enjoying a lot of it.

But he knew I would step up and do it. Even if I didn’t want to.

In high school, classes would debate abortion. They probably still do. What I remember back then was I didn’t feel I really should have a say in what another woman did with her body.

I didn’t particularly like the idea of abortion, but I could think of reasons why others might have them. Rape, incest, mother’s safety, I’m sure there were others.

But as an adult, once I got older, once I found myself not living in the garden anymore, I found myself not in one, but two not ideal pregnancies.

For most of my friends, I could probably say, there was no decision to make, but really…how many of them were in my shoes?

When I found out I was pregnant with the first one, I had already had a five and one year old, and I had just left my husband, a week earlier.

We were getting a divorce and I was living back with my dad and his wife, in their three bedroom little house.

My income was around $24,000 a year.

My one year old was already showing signs of some kind of a disorder, but I had no idea what.

And remember, I wasn’t suppose to be a mom in the first place. I had no desire, growing up to be one.

(And before you say it, I was on birth control with two of my kids. The only one that was planned was the middle one…the one who has stretched me most as a mom.)

Now I’m going to be doing it alone.

Second time, I had three rambunctious boys. Oldest one was eight, youngest one was two, and my middle one was four; still not talking, destroying everything during frequent meltdowns and beating his older brother in rage and constantly fearing he would hurt his younger one.

I am unwed, and in an emotionally, verbally and quickly escalating into a physically abusive relationship.

I needed out.

So twice I asked myself, what the hell are you going to do?

I can’t say it was a hard decision to make. Of course, ultimately you all know, I kept the two babies. But it was still a decision I had to make. Or, I should say, it was a choice I felt I had.

However, although I didn’t feel very close to him at the time, I still knew God. I knew deep in my heart, he still had a plan for me, and he had a plan for these babies too.

For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. – Jeremiah 29:11

Oh my gosh, it took years, YEARS, for me to stop feeling like I was being punished.

God doesn’t punish.

But I finally came to the realization, that out of all the women, in all the world, that I was the only mom who could raise these kids the way God wanted them to be raised, so that they could grow up to be the men and woman, he intended for them to be.

And they didn’t need a mom who loved to bake cookies, or could sew all their clothes. Heck they didn’t even need a mom who could or would cook half way decent food.

They just needed a mom who would try.

So here I am, sitting at my kitchen table, cursing up a storm in my head but teasing my son about having to re-fluff a pillow, when it hits me…

I needed them, as much as they needed me!

Never, ever would I have felt the need to learn to cook, if I didn’t have to cook for them.

I wouldn’t have realized I needed to start standing up for myself and not let people take advantage of me, if I didn’t have to teach them the same thing.

I wouldn’t have learned I had a voice, if I hadn’t have had to shown them they have one too.

And I wouldn’t have learned to love, if I didn’t have someone, or someones to love.

So, I need to get back to ripping two pillows apart, so I can continue learning how to love my sons.

And I can give them a hard time about it later. Cuz that’s the kind of mom they need. And that’s the kind of mom God has made me to be.

Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight. – Proverbs 3:5-6

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

Buried Treasure

As Justice would put it, it would hurt too much to care, so he didn’t care.

He would collect things. I never understood why he would collect trash.

The night after Tunes left, Justice and I talked before bed. We were both having a hard time with the fact that Tunes was no longer there. He was glad to have his room back, but he didn’t want it back like this.

“You can cry Justice, if you want to. It’s OK.”

During this conversation, he picked up an empty box and told me he couldn’t throw it away. It was the box to Tunes’ vape pen. He said he left it when he came to pick up his stuff.

He then showed me other things he couldn’t throw away even though they may be old, or broken or just trash. Some of the stuff he didn’t even want around, but couldn’t throw away.

He showed me the pillow I made years ago out of his dad’s old shirt. I made one for each of the boys but he’s the only one who has kept his.

A funky looking turtle I made. I hate that turtle, but he says his awesome mom made it.

He was distraught over losing a rock that was shaped like a heart that I had given him.

He had a big o’ pink pig that makes noises when you squeeze it’s foot, and is super comfortable when used as a pillow, that he pulled out of the donation bin that his sister threw in.

He talked about all the stuff animals girls have given him over the years. Even in kindergarten and first grade, girls were always giving him presents. I could never figure that out. He’s kept them all. He told me one of them was a monkey he couldn’t throw out, but gave to our dog because it freaked him out. Of all the toys the dog destroyes, this stupid monkey still hangs around the house.

When he was younger his room was a mess. He has always been a horder. He’s actually gotten much better.

He would refuse to clean up his trash. When I would go in his room with a trash bag he would completely lose it. He would tell me I was throwing away his treasures. So even though he would never clean his room on his own, he would sit next to me and tell me what was trash, what was toys, and what was his treasures.

I never understood why empty styrofoam cups and chip bags could be treasures, but now I’m seeing they were things his dad or someone had bought him.

Even the empty boxes of toys that have been broken, lost or given away, he would keep.

At the end of his kindergarten year, his teacher was retiring so so gave him the plastic bin that stored all the bugs and dinosaurs he would play with in class. He is fifteen years old and he still has it.

As we talked and as he explained to me his treasures, I started to put together my child who felt nothing, stored his feelings in his things.

Maybe then he could always hold on to them. They wouldn’t change. They wouldn’t leave. They were frozen.

He said he didn’t like to care because caring would hurt. So for years he stopped feeling. He stopped caring.

But he’s learned that even though he put his feeling in things, he couldn’t stop hurting. He would explode.

He told me, he learned to cope by learning how he needs to care, even if it hurts. Feeling the hurt takes away his pain and makes his life a whole lot easier.

I’m so stinkin’ proud of this kid. And I’m so grateful for him being able to unlock the mysteries of his childhood behavior. We are blessed.

So my son cried. We both did. And you know what? We both feel better.

“Do Not Fear”… But I Do

Precursor… Yesterday, I informed my eighteen year old son, he would once again, have to leave my house.

Yesterday, I was beyond grief. I was mad. I was scared.

Today at church we were introduced to a new song. I meditate on it as we are always encouraged to do.

“I am no longer a slave to fear.
I am a Child of God”

… and yet I’m afraid because I’m not sure of where my son is in all of this.

He is also a child of God.
Isn’t he?

Is he still saved?

Could he just be screwing up his time here, but still be with me in eternity?

Am I responsible for where he spends his life in eternity, or how he spends his life here on earth?

If he suffers here while he’s here on earth, but not when he’s in heaven, am I OK with that?

He had accepted Christ as his Savior at one time. Is it still true if he doesn’t give him that position right now?

Is there an age requirement? Was he too young at the time, and therefore irrelevant?

I believe our sins are not what keeps us from entering heaven, but rather, not accepting God’s gift; which is acknowledging Christ came to die for our sins.

Is my son still saved?

Am I upset over his choices because of the consequences he will suffer here on earth, or because of not knowing his eternity?

I’m also aware that one could live a life that looks good but still not spend eternity in heaven.

Which would I rather him live with?

I’m so confused.
My heart aches.

“I am no longer a slave to fear.
I am a Child of God”
… how can this be true?

You are no longer a slave but God’s own child. And since you are his child, God has made you his heir. – Galatians 4:7

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

“Do not fear”…but I do!

No, I do not fear for myself, but I do fear for the life of my son.

What am I missing?
What do I not get?

Things We Hope For

I have a secret.

My son, Tunes, is back! He’s actually been back for a couple of weeks.

One happy momma, RIGHT HERE!

Not because I can’t let go. Not because I’m being codependent or enabling. Not because, “I told you so.”

But because I love my son, and God is faithful.

He’s grown up so much. He’s not a little boy anymore.

We’ve got some boundaries set up. Not that they’re any different than before, but they’re there.

He will be treated as a grown man, as long as he continues to act like one. He starts acting stupid, well then he’s out.

He will start paying, continue working, and act responsibly.

So far, he’s been doing a great job. I couldn’t be more prouder of him. Well, except when he eats my Italian turkey sausage that I’ve been saving.

But I’m not even mad, because he’s eating. That’s something he was neglecting to do while he’s been out of the house for the past nine months.

I don’t include Subway, as eating if you only do it twice a day, everyday. He has a hook up. Still, he’s resourceful. He made it work. I’m just glad he’s eating real food again.

Last night was the first night he sat down and had dinner with us.

Oh, how I’ve missed him. And when I say missed him, I don’t just mean him physically being in my home.

No, he’s finally broken through whatever has been holding him back.

He’s growing into the person I knew he could be. The one I’ve been dreaming of. The one I’ve been praying for.

When I see Tunes, now, he’s smiling. He’s talking. He’s sitting down, watching TV or interacting with his siblings. He’s loving on the dog he’s never liked. He’s helping his brother with his homework and he’s playing with his sister.

He’s never done these things before. I don’t know what’s been holding him captive, but he’s finally free of it.

It makes my heart sing.

In all honesty, I know it wasn’t his decision to come back. He really didn’t have another option. His room he was staying in was requested back.

He did try to make other arrangements first. They were put on hold, until the end of the month. We shall see.

But until then, I will marvel at the young man he has turned into.

When he left, two months before he graduated high school, and I poured my heart out to God in prayer, I had no idea the plan he had for my son.

But I trusted he had one. I trusted he loved my son, even more than I did.

I didn’t know it, but I knew it. Does that make sense? It’s, faith. Having it is easy, growing it is… well, scary.

My Heavenly Father,
Thank you for your faithfulness. Thank you for your promises. Thank you for the opportunities to grow my faith, my faith in you.

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. – Hebrews 11:1