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2024

How We Survived 2023

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Smile...because I AM HERE!

May, 26 2020

So I want to use today (after speaking with Rocco and Lily's hospital case manager as well as Rocco's one-on-one aide) to discuss working with special needs children from home and caregivers mental health - ESPECIALLY during a time when there are really no moments for a break.

As someone who has (and yes, sometimes suffers) from BiPolar there are horrible, horrific days. Are they unbearable, yes. Do I get through, yes. Do I also have awesome days... HELL YEA!

Not because I am special but because I can ask for help.

That isn't a sign of weakness, but strength. Did it take a long time to do this.. yes.

It is HARD to ask for help. Some people don't know WHO to ask for help. They don't know where to ask for help.

I am telling you now.

I AM HERE.

This is one of the most difficult times for those that suffer from mental health issues.

Do NOT be embarrassed. I have had days I didn't want to get out of bed. I've cried because I lost my pen cap. I have cried because I can't find Rocco's favorite chips. I have cried because of Autism. I have cried because without my medication I couldn't have a functioning life. I smile because I am the BEST mother I can be. I smile because I have the BEST support system I could ask for. I smile because I HAVE THE MOST AMAZING, BEAUTIFUL, WONDERFUL KIDS I WOULDN'T CHANGE FOR THE WORLD!!!

I smile because I can do this... not alone... but I can do this.

Please, I am here.

Smile, because I AM HERE!

Share Your Jump For Joy

April, 21st 2020

Since the day that I ate cake I knew you'd love to jump.

In my big ole tummy growing, what a bouncy lump.

As you grew so did your jumps, like when you heard your jam!

Any rockin' Disney tunes, my happy little man.

Then out you came it wasn't long until that jump did start..

In your saucer you would bounce- you'd never be apart.

Then you found your own two feet and got them off the ground

The only place, up in the air, is where you could be found.

Bubbles were up in the air and quickly you'd go too!

Moana's on? Well ok! We know what you'll do!

Then there is Zootopia! Those big hops that you give,...

Oh boy and that trampoline, where you wish you could live!

1/1

You jump into that wild wind, the air whips in your face...

It's that joy within your jumping no one could replace.

You exude a happiness your very special way,

It's present now, present before, present everyday.

So please sweet son, my dear sweet boy,

All I ask - Share with the world -

Share Your jump for joy!

The Day You Were Born I Came To Life...

March 8th, 2020

Its hard to write something special about the day Rocco was born because I don't remember much of it! What I remember are the many days of worry before. Cradling my belly and wondering if I would be a good mother. Standing in the middle of his future room and hoping that it would be enough. Looking at his little clothes and hoping he'd come home healthy... The next thing I remember is cradling him in my arms knowing that no matter what as long as we had love I would be a good enough mother. Standing in the middle of his room knowing that nothing in there mattered as long as we had love. I remember dressing him in those little clothes knowing that he was healthy and no matter what the future brought us our love was unbreakable. The day of his birth was important yes, but it was the days after that meant so much more. It is the day of our child's birth that begins an amazing journey for you both. So yes, I am grateful for today, but I'm far more grateful for everything that has come after. Because Rocco, the day you were born, I came to life.

I Do Know An Angel...

February 12th, 2020

Don’t click away!

I know I know… you see some post about Angels and you either go, “Oh MY GOD! ME TOO!”, or you are the one going, ‘Oh, she’s one of those!”

Just hear me out. OK?

So, I had a lot of issues, won’t go into details, but the probability of me having kids was like Brad and Angie staying married… not so much. Turns out, miracles happen. Also, doctors are NOT Gods. They are wonderful to have; they just don’t get the final word.

Here is where the Angel thing starts to happen… DON’T LEAVE…

I had Rocco – didn’t know he was autistic yet, just a giant pain in the baby ass. I was cranky, moody (yes, more than usual) and after 8 months I had NO idea why my gas was kicking me. You guessed it. This sneaky little thing was 21 weeks along! I used to make fun of those women who didn’t know they were pregnant until the kid was falling out. I was one of them! I called the doctors with all these symptoms I was having, and they were right along with having just had a child. I wasn’t gaining weight because I was breast feeding and I was “sick”. Turns out I had morning sickness all during the day.

So I had a one year old and a newborn!

Little did I know that this sneaky little girl I nicknamed “My Angel” would turn out to be the real deal. NO! I don’t want to lose you yet!

By now Rocco was just starting to show the signs of autism. I had a newborn, was watching my son go through his first regression, and I was entering a severe state of post-partum.

At Lily’s first well visit the doctor walked in and Lily’s face lit up. It was a smile. Of course, I was used to the ugly little face and mouth full of gums (yes, I can say she was ugly – not all kids are cute! I mean, yes, she was a cute little lump of skin ok!) And I’ll never forget the doctor saying she was shocked. That almost NO babies smile that young. She was excited to mark that in her report. I just thought it was normal. I think it was THAT moment it clicked somewhere. This kiddo, something was special.

Time passed and as Rocco regressed, he never really acknowledged his sister (but he also never pushed, hit, or was aggressive towards her). Lily NEVER let that phase her. During his tantrums she didn’t leave his side. He’d cry and Lily would bring him his favorite toys or quietly place his bottle nearby. There was a bond. It was silent and hard to see at first. But this bond would prove incredible.

One day he was in tremendous pain. His head. As I watched from the other room, I saw him laying on the couch and Lily came up behind him. She gently placed her hands on the back of his head and lowered hers down. They just stayed like that… for minutes. Still. As fast as it happened is as fast as it was over. She is his healer.

Rocco may be older, but Lily has begun to help him without our direction. He comes in the door from school and helps him take off his coat and shoes. She tells me what he wants to watch.

If he won’t take food from me, I leave the room and peek back – it never fails. She is handing him the same food and he’s taking it.

She won’t do anything unless Rocco is taken care of first. If we go out shopping and she picks out a toy – and Rocco? When he does something, the littlest thing, she claps and cheers him on! Jumps with two feet? GO ROCCO! Throws a rock far? YAY ROCCO!

Lily is only 2 ½ and has better qualities than many adults I know. She knows unconditional love, compassion, and complete non-judgement. She sees him as this incredible kid and just adores him. She doesn’t know what disability is. If we could all be a little more like her this world would be amazing. So, you see?

I DO know an Angel, I just call her Lily.

I Won't Breathe

February 4th, 2020

Don't Sneeze...DON'T SNEEZE!

It's that feeling when your entire head is going to pop...then that tickle in your throat and you have to cough...NO! It's in your mind. IT'S IN YOUR MIND! Don't you DARE cough...

He's finally sleeping...Shhh...

Do NOT do it...

You hold it in with ALL your might....

It passes...

PHEW...

Mission passed! He's OUT!

That face...his breathing paced so calmly...his body lay so heavily...relaxed...nothing like when he's awake... his mind is at ease.

I would black out holding in that cough just to let him keep that peace.

Not that we don't love every minute of his joyous laugh and infectious smile...but when you see him struggling to bring his body to rest you know it's what he needs.

These past few weeks have been hard. As I've mentioned, with any kind of illness, communication is rough. He can't tell me he has a headache and can't go to school. He can't tell me he has a sore throat and doesn't want to eat. I've been trying my best to read all his signs and signals, the little things.

After a few nights of rigorous coughing I knew that he was desperate for sleep - SO WAS MOMMY!

Last night after medicine was given and the routine of "bedtime" was nearing completion he took my hand and sat me on the couch. After the daunting hunt for "the movie" he curled up and laid his head on my stomach... I was contorted in the most uncomfortable, circulation cutting, neck breaking, bladder squishing, leg twisted, position and he laid there...so gently on my stomach...I knew if I even TRIED to move I would break it!

Not him.. but that moment. That settled moment

Then it happened. I felt it! He was out. It was over. I'd have to stay there as long as he slept. Most nights it's only a few hours. Nope. Not this night...TEN HOURS...

Yes. I could have moved him. Yes. I had to pee so badly but risked a bladder infection... AND YES! I held in so many coughs and sneezes there is no count as to how many brain cells I damaged...

But you know.. when our child needs something and we can give it to them- we do. Especially when it comes to health.

I'll tell you something though.

For those 10 hours... I had the most amazing view...

So just for him to rest and be at peace... my baby... I won't breathe.

His Red Skittles

January 29th, 2020

If we go out to eat and I get my cheese fries, don't even let it cross your MIND to touch them, you know what, don't even look at them. Especially the crispy looking fry and slightly burnt cheese...hands off!

I mean, if you're starving and I love you I'll give you a few soggy ones from the bottom but wait your turn!

We all have our "food thing" right!

Rocco is very, um, special when it comes to food. The fact that he eats anything now is such exciting progress. I think him eating a cheese doodle at 3 in the morning is cause for quite the celebration. In all seriousness, he went from weeks of NO FOOD. Yes, NO FOOD. Only sustaining on milk, no supplements. If you know some ASD kids, you can't sneak ANYTHING by them, they are particular and very, VERY smart. I tried changing brands of peanut butter once when he was eating that, and the stare down I got burned holes in my soul! But slowly he began to eat, Doritos, nonetheless, he ate. It's been several months and that was basically his meal. We were able to integrate pizza...crust only. And after he entered Hand Over Hand we slowly watched his curiosity expand his pallet. Mind you before this kid even had teeth he was gumming steak and sucking on bacon!

Anyway, I have to add Rocco's favorite color is red. I think if broccoli were red we'd have a chance! He simply gravitates towards it! Especially cars. Well, he doesn't discriminate, because every bag of skittles, all the reds are missing. We know the culprit and we know he does NOT SHARE. Mixed color goldfish, don't you touch the red. Fruit loops, hands off the red.

So yesterday Rocco came home from school full of his joyous energy and we had some time to cuddle as Lily napped, (I know, I WTF'd too!) so we took advantage.

He got up and brought back a bag of skittles from the candy dish. Yes, we have an accessible candy dish. I shouldn't have to explain but for the "holy-er than though perfect parents", Rocco had a tendency to eat rocks for input so chewing tough or crunchy candy prevents that.

Back to this cuddle and skittles. I opened the bag and poured some in my hand. There goes his grubby little paw... right for the reds. I thought nothing of it, that's just routine.

What happened next blew my mind...and my heart.

His hand came to my face and put that red skittle in my mouth.

I looked at him shocked and did the big exaggerated rubbing-your-tummy, YUM! Wow, thank you for sharing.I chewed it really big and he laughed. It happened again. Then he alternated, him than me, over and over. When they were all done he just sat back like nothing special happened and we finished our cuddle.

He has no idea what he just did.

He gave me his red skittles.

I'll never let him know how much I hate those things, because yesterday, those were the most DELICIOUS bag of skittles I've ever had.

Your Tears Burned My Face

January 18th, 2020

When you aren't feeling well kiddo, well, none of us are. I think that is one of the hardest things about not being able to communicate. Where does it hurt? What is hurting? How bad? What kind of pain? It makes everything, well, amplified. ESPECIALLY not being able to speak.

Last night I laid with Rocco on the couch (it's part of a daunting but sweet, -gritting my teeth through a smile- oh so sweet, routine we do EVERY night), him tucked under my arm and me uncomfortably trying to figure out where to put my head so my neck wouldn't stiffen into a contorted giraffe. He took brief naps, waking up screaming and falling back to sleep. So you know I obviously slept like my husband.

Right.

Seriously, the bags under my eyes could make one strong cup of tea!

That's not the point, this poor kid was so restless and uncomfortable and I had no way to help him. He had, um, bathroom issues (I'm sparing you the details), was coughing up a lung, and a stuffy nose. The one thing, ONE THING that helps him stay somewhat at peace are his movies. He is enthralled by them, gets lost, the way he laughs and dances along, gazing into the screen, he's inside living this cartoonesque life where he's understood, no words are needed.

Come 3am I knew Rocco was up for the long run. He was sniffling, groggy, and had a pout on his face that I can't describe. It's the kind that in movies little kids put on and they can have a puppy, pick a car, and be sent on a dream vacation just for quivering that little lip!

I was rubbing his arm and just repeatedly asking what I could do for him. He took my hand and placed it on the remote...and that my friends... began the daunting task of finding the movie he wanted... that my friends caused the tears he cried that burned my face.

We must have gone through, at LEAST, thirty movies. He knew what he wanted to watch and he tried so desperately to tell me...

The longer we looked the heavier the tears. I knew because he was sick it was ten times worse. He started to bang his head into the couch, face red, smacking himself. I'm doing my best to stay calm and use my gentle voice. "It's ok bud, we'll get this!"... I kept going through the movies, one by one, doing joint compressions in between and rubbing his feet as I sat on the floor... then we finally found it! It only took FOREVER!... He had stains on his face where the tears ran and I watched him wipe them away.

I jumped back on the couch and he pulled my arms into his chest. He grabbed his bottle, took a deep breath, and laid back on my chest.

He couldn't see, but I was crying his tears now. His tears were burning my face. His tears are my tears.

Don't worry bud. We have this.

I think I'll go wake my husband up now...

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Vanilla Lip Gloss

January 10th, 2020

The best way to describe Rocco's Autism is much like Alzheimer's (I'm using this word to describe how there are brief moments a memory can return, is how there are moments it's like he's typical). Rocco is often off in his world. I'm sure it's beautiful because he's usually smiling and laughing... Though I do wonder if he's lonely.

Then...there are brief moments...sometimes only lasting minutes... but they are so miraculous. Don't get me wrong. I love this kiddo with or without these moments, but good gracious...the little snippets give me something so beautiful inside I just can't explain. It's like he is here, present, listening and participating in this world with us, and I'm not desperately trying to join his.

The other night he ran to me in the dining room with his arms in the air, made a sound like "up", bouncing up and down. I lifted him quickly (all 55 lbs. of him) and hugged him tightly...and he hugged me back! He pulled away and held my face. He smiled and laughed....kissed me and giggled. I had just put on vanilla lip gloss and he licked his lips! He shook his head in surprise, kissed me again, touched his lips and licked his finger. He held my face and brushed my cheek. Stared into my eyes and just..smiled. I looked at my husband in disbelief! He kissed me again quick and laughed! He was now just playing because he was getting such a reaction. I didn't realize that I was screaming and bouncing him almost through the roof! I had tears streaming down my face out of joy. At this point my arms were numb but I didn't want to let go...I was so afraid.. If i put him down would he come back? Would he run away, out of the room and slowly slip into his happy little world? I risked it, He didn't want to go down... I mustered up a little more strength. He nuzzled his head into my neck and hugged me so tight. I knew...in that moment...he may be in his own little world...but he knows how much I love him...and I know how much he loves me...I put him down and he ran back to the couch.

I will hold on to that moment forever...and I will always wear vanilla lip gloss.