Wednesday, August 8, 2018

Four Years Ago Today



Ahh, Our sweet little girl, Four Years Ago Today...

Daddy and I drove two hours away, while you sat quietly holding your “blankie,” looking happy in your car seat and seeming to enjoy the ride. 

Daddy and I were quiet, too. I wouldn’t exactly describe our mood as happy, but I would say we were readyready to take on this day and whatever it brought to our family. 

 

Holding back tears, I kept turning around to look at you and then at your daddy. I just couldn’t stop staring at either of you. I was scared, and I’m sure that your daddy was too. A few times, your daddy reached to hold my hand and I took itthen realized that I wasn’t holding his hand as much as crushing his hand with mine. It was then that we both knew that no words were necessary during this ride... We were all silent as we drove, each of us stuck in our own world as we made our way to our destination. 

 

We had our directions. 

We knew where we were going. 

We, however, had no idea what we were in for. 

 

“You have reached your destination,” the GPS echoed loudly throughout our vehicle. We were here. 

 

I carried a bag of your favorite toys and snackies, and your pink sippy cup, Daddy carried you, and the three of us walked into beautiful building, with windows covering it from the floor to the sky. This building was one of the biggest places you had ever been in, and you looked all around at the windows and the beautifully kept landscape, smiling the entire time. I smiled at you and I smiled at your smile. How could I not? You are one of the most beautiful things that I’ve ever created. Your beauty amazes me and you have a way to make all the bad in this world look stunning with just your smile. 

 

We found our way to an elevator and went up many floors. You looked all around and I wondered what you were thinking because this was all new for you. Daddy and I had been in many elevators, but this time we were looking around in shock as if it were our first time, too. 

 

The moving floor stopped, the door opened, and the three of us walked out together into the unknown. We had arrived. 

 

We couldn’t really sit down because Mommy and Daddy were so busy chasing you all over that entire floor. After all, that’s what 2-year-olds do, and you were no different from any other 2-year-old...Yet. You had to check everything out, test your limits, and run to make us chase you, and we did just that, as you laughed hysterically. 

 

Then, it was our turn. We heard someone call your name. Daddy picked you up while I carried all of our essentials and we followed the woman with the really cool outfit through the door that she was pleasantly holding open for us. We were motioned to another door, which opened into a room with lots of toys for you to play with, a small table for you to sit and play at, and chairs for Mommy and Daddy to sit in. 

 

As we sat down, you decided to stand on top of the chair and then the round table meant to sit at and play with toys. But toys really weren’t your thing, and yes...you’ve always loved standing on top of tables. 

 

Maybe someday you will tell me why, although I’m pretty sure I already know. You want to fly like a bird in the sky, up to the clouds so very high. Well, at least that’s my guess, because that’s what you sing as I try to get you down from flying, each and every time, my beautiful little songbird. 

 

You don’t speak like everyone elseyou sing your songs and you twirl and dance like no one is watching.

 

I’m watching. I’ve ALWAYS been watching. 

 

And that day, someone new sat back and watched you, too. Would they see the beauty that is you? Would they say that it’s not “normal” for you to sing instead of talk? Would they tell you that you’re not meant to fly, and tell us that your world is not real, and that we must teach you to live in our world, a world where people stare and judge those that sing, twirl, dance, and try to fly high up into the sky? A world where little songbirds can’t do what they love to do without someone judging and staring, instead of watching what true beauty really looks like? 

 

I’m still watching you, my little songbird, and you are truly beautiful. I will never tell you that you cannot sing, dance, and twirl, as if no one is watching. I’m watching...always watching and protecting you from trying to fly away. 

 

Four years ago today, we took you on a two-hour drive, to a big building with lots of windows, into a room with toys. And instead of watching you play with those toys, we watched you as you tried to fly. 

 

You didn’t know but others were watching you in that room too, and they didn’t see the beauty of your songs, twirls, dancing, and flapping ready-to-soar-high-up-into-the-sky wings. 

 

They saw a little girl, not like other little girls; rather much different than other little girls your age. They told us that you were different and they gave us no hope for your future. They told us that you would never soar high like other kids and that you would always need help. They told us to keep you grounded here in “our world.” 

 

Oh, how very wrong they were. Because YOU, my sweet little bird, YOU were meant to sing, twirl, dance, and flap like no one else is watching...autism or not. 

 

Four years ago today, they didn’t see the beauty of you. They saw the label that people gave you. They tried to have us have you wear that label.

 

Four years ago today, they only saw that you were different and that you would always be different. 

 

Four years ago today, they never knew just how high you would soar and how far you would go. How just because you are different doesn’t matter because different isn’t bad. You see, they weren’t really watching you at all.

 

But I was watching, I never stopped.

I’ve been watching ever since you were born. 

You were meant to fly, to soar so high up into the clouds in the sky. And this Mama Bird has kept you just safe enough under her wings to keep you grounded when need to be. But I have never stopped watching you try to fly.

 

So fly my baby girl and show them what you’re made of, I know you will, because I’ve watched you do just so, for four years. 


Monday, March 19, 2018

What it’s like when I lose myself





I go away for a little bit 
Not sure how long as each time is different 
I don’t always know that I’m lost and neither do you 
A change in hair color, attitude, and I see the world through a whole new view 

It’s me, but it’s not. It’s another version of me
Lost in my own head
Not wanting to confront what hurts me 
And makes my insides feel dead

When I’m lost like this and another “me” takes 
Over to help me cope and deal
That’s when I really have trouble deciphering 
What is actually real 

I’m not sure how many times I’ve been lost
I know that it is more than I can count 
I don’t always know I’m gone as it always 
Depends on how severe the bout

It feels like being on autopilot without
Ever learning how to fly 
Sit back, relax and try to enjoy the ride
So hard to do when you’re so lost inside

My brain doesn’t do this to hurt or confuse me
It protects me and hides me away 
From the traumas and demons that 
Haunt me every single day

Over the years I have learned what it’s like to
Lose myself and how I find my way back 
Sometimes it’s quick, while other
Times I’m so lost and so very sick

I’m not like most people, I know that now and 
Am completely aware; until stress, a trigger, a 
Traumatic event, and then I’m gone again
Struggling for my own air

My illness is real and so am I
I’m not scary or vindictive, I love more than most
I lose myself and go into hiding sometimes 
While another “me” plays host

Wednesday, March 14, 2018

We Need To Talk



In 2014 you and I drove 2 hours to see a “specialist” for our youngest daughter, Zoey. We didn’t talk much the entire round trip. 

When we saw  the “specialist” he confirmed what we already knew in our hearts, that our baby, not quite 2 years old at the time was officially diagnosed with severe autism, severe language impairment, severe ADHD, severe SPD, and Global Developmental Delay. She was 19 months old with the communication skills of a 6 month old. 

What do you say after you get news like that about your baby? We heard words like; severe, lifelong, no guarantee. How do you cope with words like that about your 19 month old baby? 

We were silent 
We listened 
We were in shock 
We had NO idea 

You went to work and so did I
You work outside of the home, while I threw myself into therapies, Drs appointments, fighting, and advocating...making sure all four of us were happy and ok! 

I’ve spent over 4 years trying to learn and understand how our baby learns, she’s not like us, she’s special. She’s almost 6 years old now and we still have ongoing therapies, Dr’s appointments, exhaustion sleep deprivation, and meltdowns, all the while trying to explain to our almost 7 year old why her sister doesn’t talk, play with her, or why our house is like Fort Knox. 

I’m tired! 

I explain to our oldest that it’s ok to be different, because “different isn’t bad”

But

You and I stopped talking 
You and I stopped trying to talk 
You and I really needed to talk 
But...we didn’t 

You said something to me and that felt like a punch in the face, a blow so hard, it knocked me off of my feet and left me couch bound. What the Hell were you saying to me? You made me mad, your words cut me like a freshly sharpened knife....were you really on my team? Your words cut me so deep and I never told you. 

We never talked about it
We should’ve talked about it

Instead 

I shut down and shut you out

I spiraled into a major debilitating depressive bout of depression, far more intense than the many bouts I’d had in the past. 

This bout rendered me helpless and just sad. I suffered in agonizing pain and I wanted to be alone to wallow in my pain, afraid to ask for help, I didn’t want help...I wanted to fly away from the couch like a bird, but I felt helpless, this couch that held me hostage, while my wings tucked in and protected themselves from anymore hurt and pain is where I found comfort. 

So like a flightless bird, I tucked my wings close in and tight to me and I suffered in silence. I didn’t feel strong enough, and I blamed myself for everything and anything...I took it all on, myself, and the “Mom guilt” crushed my heart and soul. 

We should have talked
We needed to talk 
I was afraid to talk
I didn’t think I was strong enough

We should have talked 

But those words you said that crushed me...“Melissa, you need to stop living your life around Autism, just turn it off for awhile.”

Your words hurt me 
I never told you 

Instead I benched you from the team, you were my MVP and you got benched and I never told you why! 

I’ve worked hard on “Team Zoey” for over 4 years and you were telling me to take a break....I wasn’t and couldn’t have that. I had worked, researched, fought, picked the best of the best for our baby with severe autism....I will never stop or give up.....EVER! 

So, I benched you and I completely took over. I was Coach, Cheerleader, MVP, and her loudest fan in the arena of her world, for me it was easy to shut down and keep everyone else out.

What I didn’t know, is that you took the bench everyday, just waiting to be called in. And I realized that this life we live is not a game, this is our life. We ARE a team, all four of us...WE are the team!

4 years ago on diagnosis day 
you held baby Zoey in your arms 
as we entered an elevator after getting 
Zoey’s official diagnosis 

I hit the button to go down 

You looked at me as I cried and you said “it changes nothing, she’s still our happy girl”

Little did you know
It changed EVERYTHING 
For All of us!

I’m sorry I never told you 
I’m sorry I shutdown 
I’m sorry we never talked
I’m sorry I benched you
I’m sorry I stopped giving you the game plan

I benched you for four years....I’m sorry! 

Can we talk now, please? 

Monday, March 12, 2018

For those who work with and are a caretaker to my child



I hold on extremely tight, I’ve never let go and it 
Never leaves my sight, not for a lack of this flighty balloon from trying to escape my grip and float away, and that takes tremendous awareness and work on my part. 

This has been my special balloon that I’ve filled with my loving air for 5 years.

 I keep her safe, sometimes my special balloon loses air, and I need to refill and recharge her, she’s beautiful like a rainbow made from pure light. This beautiful balloon is my Heart, my Life With Zoey, my daughter on the severe end of the Autism Spectrum.

She doesn’t just have my air, she has my undying and unconditional love and protection.

 I’ve been holding on so tight for over 5 years that her string tied to her, that helps me keep her grounded and safe, is fraying and I’m scared that one day she will fly away from the frayed string that barely keeps her grounded. 

 I will forever hold on tight and I will replace the frayed string when it needs to be replaced. She can NEVER be replaced, so I will keep hyper vigilant to keep her grounded and safe. 

Im okay with doing this because I’d be lost without MY beautiful airy balloon...my beautiful Zoey! 

I’m not ready to let go
If I let go
Who will be there 
To make sure she stays 
Grounded and safe

She’s not like others, she wants
To take flight and fly high 
She’s tried so many times 
To fly like an airy Balloon 

I’ve kept her grounded and safe 
For 5 years, she’s mine and 
I’m scared to let go

She will soon see more 
Of “your world” SO much 
Different from her world 
Please remember she’s different
And different isn’t bad

I refuse to let
Anyone deflate her airy spirit
I’m not ready to hand her over 
I’m not ready to let go

I have to trust YOU with my special 
Balloon....please hold on tight and 
don’t let go, she will fly away

Tuesday, February 13, 2018

Why I’ve hated Valentine’s Day for 18 years




A day all about Love 
A day about beautiful red hearts
A day of celebrating the ones you love 

Today is Valentine’s Day
I Hate Valentine’s Day, I have for 18 years and I feel like I will continue to do so throughout my life time here on this earth 

You see, my heart is not completely whole and a pretty red like most. Yes, it’s a full functioning organ that is keeping me alive, but when a piece of your heart literally dies, it’s not a pretty red and it’s not full

A piece of my heart died 18 years ago today! 

I never got to say goodbye and I never met you face to face, but I knew you. Our two hearts shared a place, a place where they would beat side by side. 

I felt you kick and flutter around, I picked out your name, and I saw you in my dreams every night and slept great knowing I would soon meet you, not just in my dreams. 

I saw you

As you and I grew bigger and your heart and mine continued to beat together, I would catch myself thinking about how I couldn’t wait to hold you, rocking you to sleep as I sang sweet lullabies, all as I snuggled you tight and close to my heart, my heart that beat along with yours. 

I’m sorry I never got to meet you
I’m sorry I never got to hold you 

You passed away 18 years ago today on Valentine’s Day. 

We don’t know why, but your little heart just stopped beating together with mine. That piece of my heart that was linked and beating with yours, well it died that day too. 

Even though we’ve never met
I know you
I felt you
I love you

Please don’t make me say “Happy Valentine’s Day” because that piece of my heart is gone. I love you my sweet angel baby...you hold THAT piece of my heart, always have and always will. 

Love, 
Mom 


Wednesday, October 25, 2017

I don’t know how to sew myself back together





A broken heart; most people experience it once or maybe even quite possibly hundreds of times in their lifetime. I can't keep count of my heartbreaks anymore. When something breaks you wanna fix it, a broken heart can't really be made completely whole and fixed again....but it can be stitched

My heart has many stitches, so many that my heart looks like the character Sally from The nightmare before Christmas. The stitches are not sewn very well and they are fraying and sometimes the stitches of my broken heart are weighed down by more hurt and heartbreak, like a dam about to break apart and overflow massive amounts of water that are my tears.

That's how I would explain my heartbreak and stitches and scars.

My heart is holding onto a giant overflown dam of tears of pain that's ready to burst and the stitches on my heart can feel it. Every heartbreak is hanging onto my heart with the weak and tired thread, because, I will let you in on a secret, I can't sew, at all, never could, I've tried, I just don't get it. I did the best I could to stitch my heart up as best as I knew how.

I've patched it, covered it up, masked it, but my heart is still there hanging on by tired threads. And just as Sally picks up her pieces and carries on and pushes through, that is what I will continue to do so too.

The thing with broken hearts is, that, the heart isn't the only part of my body affected, emotional hurt wreaks havoc and rips away at the tiny worn threads of my heart and leaves emotional stitches that can't be seen, much unlike Sally's stitches, they are visible on the outside and she is sewn together with leaves, how very similar are we, except for the fact that Sally knows how to sew herself together.

We both want happiness and peace and to feel whole and yet we still feel the need to have to hide away from what caused our stitches and heartbreaks.

 In the end doesn't it all come down to love and loving someone, the deep unconditional love that you have for someone other than yourself. Wanting to fix the broken hearts, stitches, pain, and hurt for those that you feel are more heartbroken than you, or in need of more stitching than you.

 We try so hard to protect and defend those we love that we don't realize that we are actually slowly pulling our own stitches apart and causing more heartbreak for ourselves.

Sally is falling apart and the water flow of broken hearted tears that has made up the dam that is my heart is busting my stitches loose.

What I've learned from this beautifully broken stitched up doll is that we are both willing to go as far as we possibly can go to help those that we love and care about, so far so, as to sacrifice our own well being to make it so, we are the "helpers" the "healers" the "fixers" and the "lovers" to everyone but ourselves....and so our hearts break easier and our stitches loosen quicker than most.

Until we find "the one"

That one, That one that loves you just the way you are; broken hearted with loose stitches, scars and all. The one who asks to sit with you in the dark under the light of the moon and sings

"My dearest friend, if you don't mind I'd like to join you by your side where we could gaze into the stars and sit together now and forever, for it is plain as anyone could see, we're simply meant to be." - Jack and Sally

Tuesday, October 17, 2017

How Cinderella made my autistic daughter feel like a princess



Birthdays are supposed to be fun and exciting for little kids, I know my six year old, Anna is already planning her next Birthday party and theme the night after her 6th party ended...that excited.

Birthdays were always so exciting and fun for me too, so much so that I would have my girls parties planned and ready to decorate months before the party.

That changed for me a month before my youngest daughter, Zoey turned 2 years old. The month before she turned 2 years old, Zoey was diagnosed with severe nonverbal autism, global developmental delay, dyspraxia of speech, and would soon be diagnosed with extreme ADHD

I tried to pull myself together enough to plan her birthday party, and do it just like I had done her 1st birthday party, how I had done 6 of her older sister's birthday parties. Her 2nd Birthday didn't go as I had planned and I would realize that none of her birthdays would go as planned again. I tried, each year I tried. 

Her 3rd birthday was too loud and she was on sensory overload, she didn't know how to blow out her candles, and we didn't sing Happy Birthday because she started to cover her ears from the noise, I took some flack for not singing the Happy Birthday song from some family, but I did what was best for my child and will continue to always do so.

Her 4th Birthday was a beautiful sunny day and I invited just small a group of family and friends and I did an ice cream social. Ice cream is her favorite and I thought why not build your own sundaes.

She saw everyone gathered around and immediately came over to me to escape the small crowd, I knew it was too much, she wasn't comfortable. She motioned for her and I to go inside, and I granted her that, after all it was her day. While our friends and family still gathered outside eating cake and ice cream sundaes, Zoey and I played with some of the very cool sensory toys that she had gotten as gifts from her friends and family.

Being social is very difficult for Zoey, if we have company she usually retreats to her sensory room for a "break" and I respect her wishes every time.

I had no idea what I was going to do this year for her 5th birthday. I know that 5 is a milestone birthday and with school and therapies she had come along way from years past. 

I noticed she was listening to the original Cinderella cartoon songs on her tablet and she would sing along with Cinderella to the song "Sweet Nightingale" and to see her sing it was beautiful, and soon she started watching the cartoon and she never went to shut the TV off, which she usually does, she actually was enjoying it and captivated by it. It made my heart happy to see her enjoy something, Zoey liked Cinderella.

I did some research and I found a company that does Princess Parties. Precious Parties By Kayla. I got in contact with Kayla and I asked if she would come visit Zoey on her Birthday, she was so thrilled to be a part of Zoey's special day and so we booked her. Cinderella was coming to Zoey's 5th Birthday.

Again, I invited just immediate family and close friends and as our guests arrived Zoey took their presents from them and opened them right away, I agree, who really wants to sit around and watch you open presents and be the center of attention. Everyone else thought it was great too.

Cinderella soon arrived not long after our guests and all the other children squealed with excitement while Cinderella sat down on our floor and gathered the children around her to show her what she had brought them. A treasure chest full of trinkets and fairy wings, and then she grabbed out a Cinderella book, looked right at Zoey and pointed to Cinderella on the cover and then at herself and Zoey said "Cerella." 

Zoey knew that Cinderella was here at our house. It was overwhelming for her and she took many breaks. Cinderella did face painting on all the other kids while Zoey sat on the couch having me give her deep compression (squeezes) on her legs. My husband came over to us and he said "Cinderella is here for you baby girl." Zoey kept taking my hands to do deep compression on her legs, as I looked up at my husband and said "we tried, we tried."

Zoey was definitely intrigued by this beautiful Cinderella at our house and she actually went up and approached her 3 times. I was moved and close to tears, because no matter what Cinderella was doing, face painting a child, answering a question, whatever it was she was doing she stopped all 3 times Zoey approached her, and she treated her like the special little princess that she is, and that meant everything to me.

We brought out the cake and we sang Happy Birthday to Zoey this year, and this is the first year that Zoey blew out her candles. Cinderella cut her cake and then took pictures, signed autographs and then said her goodbyes, and off she left on her way back to Prince Charming.

Thank you Cinderella for making THIS birthday special for my special girl, and it went exactly how I had planned.