The Ramblings of a Sleep Deprived Mom

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’re 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’ve 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 flat screen again?

It doesn’t end until this mama has been up sometimes forty eight hours, even seventy two 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?

Great.

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…

Or

Tails…the blinding light and chaos will ensue.

You are when my mind can race with a million thoughts, 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..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?

Why me?

Why us?

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 in that moment that 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 maybe 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?

It was.

But between you and me..those hospital visits were probably 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.

All of you at once are just a bit too much to take in some days.

You are slowly siphoning our health and well being.

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 backwards..not how I pictured my life, my marriage and raising kids.

Money..it costs so much money.

Not just to live.

Doctors.

Specialists.

Therapies.

Out of pocket costs everywhere.

Counseling.

Holy crap we aren’t even trying medication yet.

How the heck would we afford that too?

Life long 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.

Pulling him out of public school.

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.

There are times 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, 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 a 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 isolation of continue to take it’s 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.

It’s lonely.

And expensive.

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 we either 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 that the balls and dishes don’t come crashing down all at once.

Autism and every other issue sucks 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 am..you never seem to disappear.

You can’t take a hint.

And all I can hope is that my ramblings help others feel not so alone in all of this.

This is 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 up 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.

I will.

We will.

After some sleep…and coffee.

Written by, Sheryl St. Aubin

I’m Sheryl. My husband and I were blessed with three beautiful, bright, brave and bold children…Finn (5), Landon(8) and Lilliana (12). Finn-a.k.a. Baby Bird, was diagnosed with Autism Spectrum Disorder (severe) when he was two and a half years old. Landon was also diagnosed recently. Our life has been an adventure. This past April, I decided to start sharing our life and created a Facebook Page and blog. You can follow us on Facebook..
https://www.facebook.com/followyourflockwiththreelittlebirds/

I wanted to create a place for knowledge, encouragement, support, and comfort from people who understand…who walk in the same shoes.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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