“Hey, four a.m.
Back again huh?
Sorry, but I’m not here to welcome you with open arms.
I’m still recovering from last night… and all those years you wouldn’t leave me alone.
You sure do get around.
You seem to have several reasons to keep showing up in my life.
Moments before you arrive, I decide whether to pour the wine or start the coffee. You are like a barometer that measures the pressure of the atmosphere. Have I made it to the shore? Or am I drowning below sea level?
You have been my son’s bedtime and his wake up call.
You are the time that defines my next day and what it will look like.
You determine the outlook on my son’s next twenty-four hours.
Will he wake up on time for school?
Will I even get him there, or will he pass out on the ottoman fully dressed, five minutes before we are supposed to leave the house?
Will he sleep through an entire therapy session again?
Will he have an increase in behaviors? Will he throw a chair or script episodes of Mickey Mouse Clubhouse all day long? Will his aggression towards them or us reach a new level? Who will get hurt today? Me? What will get damaged? The flatscreen again?
Will he nap in the middle of the day so we can start this whole sick cycle all over again… one that lasts a few days in a row… or even a few weeks? It doesn’t end until this mama has been up forty-eight or even seventy-two hours straight.
I honestly don’t know how he functions on as little as four to five hours of rest…
Both of us, night after night, missing that REM sleep cycle… you know, the one that’s beneficial to your body and mind because it increases brain activity, promotes learning, and creates dreams? The one that if they say you don’t go through it, your chances of dementia are higher?
I don’t think I need any help in the ‘I’m losing my mind’ department.
Yet, here you are… reminding me of that very fact.
You show up and it’s heads or tails…
Heads, the time where dark and calm finally enter.
Tails, the blinding light and chaos will ensue.
You are when my mind can race with a million thoughts, and enter the corners hidden within. When I lie awake with agonizing worry over the future. When my overthinking of today’s and tomorrow’s consume my already busy brain…
When it screams ‘out of storage’ for the next task, call, or appointment I need to remember.
You’re a time when tears are shed like heavy raindrops from the consistent exhaustion of raising three little humans.
The toll it seems to take on my body and soul is an overwhelming weight, like a tidal wave that’s just rolled over me, and once again, I’m drowning, trying to find my way back to land.
The ‘what’s’ and why’s’ of my son’s curious behaviors start stacking up like the large, red cardboard blocks he is building right next to me.
Why can’t he fall asleep?
What is hurting him?
Why can’t he tell me?
What can I do to make it better?
And of course… why him?
Some questions I know I’ll probably never have an answer for…
But in the hours before dawn, there’s no reasoning with yourself. You’re past the point of no return, so to speak, and your mind tends to race in a circle, like a hamster that can’t get off the wheel in its cage.
When you’re wearing the clothes from yesterday and haven’t showered. You’ve put your hair in a messy bun so many times this week that there’s no way you’ll get a brush through it. You feel like you’ve won because at least you brushed your teeth.
It doesn’t resemble the picture of self-care.
I’ve neglected myself, my needs, my dental and medical upkeep… I struggle to manage my limited time, and I’m always trying to figure out how I can get better at it.
I’m certain I will end up in an ambulance, perhaps in another 7-11 parking lot as my husband dials 911. The operator will tell us to stay put and wait. My body will shiver with tremors and chills as they give me the baby aspirin. The panic will take over and I will feel death is imminent. I will feel dizzy like I just stepped off the tilt-a-whirl at a community carnival. Nausea and a sense that I’m losing oxygen will accompany the chest pain, and during the half-hour ride I’ll be left wondering, once again, if I’m dying… having a heart attack or stroke. I’ll have to stay overnight. More tests will be done. Will they do another heart catheter like last time? I remember the nurse’s smile as she started the anesthesia intravenously, telling me to count down from ten. I literally lost consciousness at 8 and a half.
Sounds really scary right?
But between you and me… those hospital visits were the most quality rest I’ve had in four years.
You didn’t show up once when I was there.
But tonight, you’re here reminding me that I’m late to get my six-month mammogram. It is imperative that I make time for it especially after my Cancer scare last year. I need to call tomorrow. The thought of putting on that pink gown, pacing the room, barefoot on that cold floor, while waiting for them to put another needle in my breast…thoughts race through my head about what will my family do without me…what will happen to my baby boy… all three of my children and husband if I’m gone?
I HAVE TO LIVE FOREVER.
There’s no way around that. So, I sit here now, with this guilt, that I’ve put off something so damn important.
Four a.m., I loathe you.
I hate that you’re only two hours from the time my day truly needs to begin…if I could just get two hours of extra sleep, 120 minutes that can make or break my sanity.
You introduced yourself when our boy stopped sleeping at fourteen months old. It was like his body could no longer settle.
He started climbing out of his crib.
He paced the floor and hopped from couches repeatedly.
The sounds of flickering light switches and loud screams filled the hours in between the attempt to put him to bed and you, the time he actually passed out…
His body only landed when he was ready and where he felt comfortable… the floor, a stack of pillows, any bed or couch in the house. The place he fell asleep seemed to be as of little importance to him as the time on the red clock, hanging on our kitchen wall.
You got comfortable and seemed to have no trouble sticking around. Your very existence was a thorn in my side for three straight years. You became a given; I could trust you would show up.
But you weren’t alone.
There were unwanted visitors that followed you that were just around the corner.
Sensory Processing Disorder.
The perfect trifecta to invade our daily slumber.
But then, more showed up.
Mine… from the horrifying events of elopement that replay like a break-up song on repeat. It lasts eight minutes because that’s how long my baby was missing.
Visions of a body bag getting zipped up after a cold, little, lifeless body gets pulled from the nearby pond.
When you two get together, it’s nothing but cruel deception, using my mind as your board, silently sliding your pieces across as you play the ‘worst-case scenario’ game.
And you’re like an open door, aren’t you?
There’s no keycard or security check at the gate…you just let them all in.
Sometimes hidden in the dark, disguised for the world to see and hear, but not necessarily recognize or understand.
You let them seep into our home like an invisible fog… and one more takes over.
Him and me.
I’m angry because every time I look at the clock, I feel them all knocking at once, sometimes loudly.
Other times, it’s like a gentle tap…like a rock being tossed upon a window saying…
‘Hey, let me in.’
I know because you’ve yet to stop them from coming.
All of them.
And let me tell you, they can be the worst guests.
Angry and violent.
Rude and arrogant.
Sad and inconsolable.
Unnerving and sneaky.
Because they are thieves… ones who rob us of joy, sleep, peace, and freedom. They show up like they belong here, like they came with the human houses they are so neatly packaged in.
And I see them creeping, searching for new homes… My eight-year-old son, my twelve-year-old daughter.
I see you four a.m.
Keeping her awake now.
Her anxiety just waiting for its chance to fill her mind with unpleasant thoughts, ones that stay with her throughout the day.
Fears prevent her from walking into a room filled with friends… they attack her body with a panic that leaves her speechless and trembling.
They prevent her from doing simple tasks like mailing a package at the post office. The thought of talking to strangers makes her want to run and hide. A girl that seems so ‘confident’ can’t seem to muster up the courage to tell her math teacher she needs help or ask for something to be repeated when she didn’t quite process the words the first time. I’m still in disbelief over the situations where she couldn’t walk into rooms that were filled with actual friends and just walk up and say, ‘Hello.’ She wouldn’t even go into her school late one day for fear everyone would look at her the second she entered the lunchroom tardy, instead she sat out in a hallway, waiting for her next class to begin.
But many still don’t know. She’s a budding teenager that hides her secrets, deep within, under a cheerleading uniform and a big microphone on stage. Most think because she can get the lead in a musical or be a part of group activities, she’s ‘social’ and couldn’t possibly be on the spectrum herself.
Watching her struggle this weekend to start her speech for days, knowing her honor roll grades have nothing to do with the executive functioning skills she is lacking.
The way Landon yelled at a stranger because he hugged Finn this week at a local 7-11. All the guy did was merely ask how he was. Then it just got worse at the park. I can’t believe he shouted at that poor little boy…I know he was frustrated but this whole ‘He can’t control his emotions and read people the right way’ (the doc’s words, not ours) is taking a toll on all of us. I’m sad they didn’t see who he truly is, one of the sweetest, kindest, giving, generous boys you’ll ever meet. Maybe I should be happy he doesn’t like strangers. Does that mean I can take kidnapping off my worry list now?
Sometimes I worry about the older ones more than I do my youngest.
Autism is hard… even the ‘high-functioning’ kind.
People just don’t get it.
But they would have to know them I guess the way only a mother could.
And they would have to know Autism the way I do now.
My eight-year-old has real problems with peers and in the real world, and I’m afraid it will lead to heartache.
And, there’s a reason they say the most common age for a girl to be diagnosed is thirteen. They’re great at masking it until the mixture of middle school and puberty collide.
A cocktail of insecurities, peer pressure, and the ability to start recognizing you are different in a bigger pool of fish starts to rise to the surface.
Tests that end with ‘inconclusive,’ aren’t good enough.
We need answers.
I’ll keep fighting for the truth.
I’ll tackle them…one by one.
Sometimes your buddies show up in groups.
I feel like they’re taking over my beloved family.
Our happy home.
Forcing us to be a family of four instead of five… stealing precious time to be together. My husband and I feel like we are choosing straws to see who gets to leave the house and take a child to do something fun.
When my youngest son leaves the house, it’s an endeavor… one that requires rules, a list, and a map because the concoction of my son’s disability and disorders make him feel like he’s just been tossed into a round of Jumanji, way too many surprises. It sets his body into an immediate panic, as if he’s waiting for another fire alarm to go off.
His Autistic brain must process everything ahead of time. Sometimes we just know he won’t make it to the end. So, we let him sit those games out…and we sadly play without him.
All of you at once is just a bit too much to take in some days.
You are slowly siphoning our health and wellbeing.
I don’t feel like myself, or sometimes even human. I feel more like a programmed robot adhering to therapies, plans, and schedules. Compliance is my default mechanism…it’s no longer an option.
My emotions are a rollercoaster of highs and lows. I drink more coffee than water. I haven’t been on the treadmill in over a year. My house looks like a cross between an episode of Hoarders and Stranger Things. The upside down world is my reality.
Everything seems so messy and backward…not how I pictured my life, my marriage, and raising kids.
Money…it costs so much money.
Not just to live.
Out of pocket costs everywhere.
Holy crap, we aren’t even trying medication yet.
How the heck would we afford that too?
Lifelong care? Trusts?
Omg, I’m going into the rabbit hole as I type.
It’s too overwhelming.
Fighting with insurance companies.
Losing benefits and beloved therapists.
Every year it’s a new challenge we face.
Some days it seems like it’s all falling apart, and I live in a war zone. It’s so hard to parent in general…throw kids with special needs in the mix, financial struggles, two overworked and exhausted human beings who can barely go on a date, and at times you can feel more like roommates.
Some days we literally agree on nothing…how to deal with extreme behaviors and attitudes, who was supposed to take out the trash or how the money is allocated…we always seem to be at odds…and honestly, I don’t think that’s just an ‘us’ thing, I think it’s common for men and women to have a different approach.
But the therapist says to ‘defer to me.’
God, I hate saying that out loud.
But he was right…at least I think so.
I’m the one homeschooling and sitting in therapy sessions, and studying and researching for years on how to help all of them.
It’s too hard on everyone if it’s not consistent.
And I’m always trying to balance life for the kids… activities and time away from the ‘crazy house’ which is literally what it feels like now.
It’s no longer my safe place.
It’s my prison… invisible bars hold me here as the years of isolation continue to take its toll.
I talk to my son’s therapists and caregiver more than friends.
I connect more with strangers online that I’ve never met, than with my next-door neighbors.
Always on an extremely tight budget.
Budget and save… I laugh at those words.
We’d have to make extra money for that.
But there’s none.
We don’t even have credit cards.
It’s either we have the money or we don’t.
I hate debt.
It feels like an elephant is always sitting on my chest when I pull out the bills.
I juggle more than a clown at a circus…while balancing plates over my head, hoping the balls and dishes don’t come crashing down all at once.
Autism and every other issue suck our bank account dry every month, paycheck to paycheck. Every year we use our taxes to play catch up and finally treat ourselves with late Christmas presents and pay for the kid’s upcoming birthdays.
I often wonder how others do it.
Is it this hard for everyone? Maybe.
And now I’m just rambling…on and on.
A sleep-deprived wife and special needs mom…that’s my title now.
Because 4 a.m., you never seem to disappear.
You can’t take a hint.
When you showed up again like you did the past two weeks, I just wanted to tell you to go away.
And to take your friends with you.
I would send them all away if I could.
Then maybe I wouldn’t have all of you swirling in here like a tornado ready to rip the roof off.
I wouldn’t have to watch my loved ones get engulfed by confusing and life-changing acronyms.
Ones that after years, I’m still trying to understand.
I seem to still have more questions than answers when it comes to this journey. I’m constantly second guessing my choices, terrified I will make mistakes that will affect their progress or well being.
I’m concerned daily on how these labels my kids now have will affect them. Will the knowledge of their own diagnoses change how they look at themselves? Will they feel broken? Weird? Like they somehow don’t belong in this world around a large population of people who don’t think and act like them?
Ugh…I have to get out of this funk.
I can’t let that happen. I will work day and night to make sure they see that their differences, although challenging, make them beautiful in a way only some will understand. They are strong, talented, and brave.
Unique and different is nothing to be ashamed of. I’ll shout it from the rooftops if I have to…until they believe it.
I will help them find their own truth, instead of being scared or running from it. We will go into the unknown together and face it head-on.
They are worthy of love and the same opportunities others have. I will teach them to be proud and fight for the same rights for themselves and others, the way I strive to advocate for them and all people with special needs.
Because that’s why I do this blog thing… right?
Why I tell the honest, raw, emotional truth about what it’s like to live and survive in the special needs world.
It’s why I opened my life and family to the world.
I wanted to help others…like them and me.
To reach out to the parents who are up with us right now.
Because this journey has no map… I was just trying to give them a tour guide.
Because some days it’s like being lost and unprepared in the Sahara desert…the sun is bright and beaming, your skin is burning, the sand is getting in your eyes as the wind blows, making your vision blurry, and you can’t find water anywhere.
And you literally think, ‘I might not make it.’
But, you will.
After some sleep…and coffee.”
Read more touching stories like this:
‘No shoes, I ran through the security gate, tripping as I searched for the family. ‘You did an amazing job, dude.’ It was like we’d known each other for years.’: Mom to son with autism urges ‘look for your people’
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