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

The scars, and stitches of my broken heart




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.


Sunday, October 8, 2017

The Ferris Wheel that is my depression and anxiety




There is a lot resting on my shoulders and it's starting to hurt as it pulls me down. I try to stand up straight, but my body is weak from holding itself up for so long. The weight of the world is heavy and I'm trying hard, but I can't carry the world on my own anymore. 

It's time to let you in
It's time to tell you

I'm sorry, as I feel as if I let you down, and I'm not what you planned, or thought I would be. I'm fragile, weak, broken, and scarred, and no matter how hard I've tried, I still can't seem to heal. I feel bad for the life that you thought you would have, and I have guilt from feeling like I've robbed you of happiness and peace. 

It feels like you live in one world while I live in a completely different world. My world wreaks chemical havoc on my brain every moment, and it doesn't stop for me. It's like riding a Ferris Wheel and wanting to get off when it stops, but I can't ever got off, no matter how badly I want to, I am pulled and lured in my seat on this rotating wheel of torture.

I've tried to explain this wheel of torture to you so many times and you say "just get off the ride." If it were as easy as that I would have years ago, because I don't even like Ferris Wheels, they scare me and make me dizzy. What you don't know is, that I've actually been on this ride for so long, longer than you and I have been together. I learned to fake it and pretend that I could handle the ride, and I latched onto unhealthy ways of coping with it. Something I hid very well, because I had years learning how to survive the treacherous wheel, and I accepted it as part of my life.

I felt like if I told you about the wheel that you would try and sit with me on it, and I didn't want you to be stuck on the ride with me, but what I didn't realize was that even though you were not in the seat with me, you were watching me on the wheel and just as dizzy as it makes me, it makes you even dizzier, watching me go around and around and around, spiraling into sadness, fear, guilt, regret, self loathing, I look down at you as you watch me and I can't imagine watching someone take a ride like that.

But you stay and watch and you hate the wheel too, but you love the passenger, so you stay, waiting for the moment that the wheel stops so that you can get me out of the spinning seat, and on the days when you can, I am grateful, tired, but grateful. When the ride pulls me back into my seat, you are there waiting for the next time it slows down enough for you to catch me.

For better or for worse, in sickness and in health

So to you, my husband, my best friend...that is what my depression and anxiety is like. I'm sorry you have to watch it, you try so hard to understand what it's like for me, and I have never known how to explain it to you, I will tell you that it's a never ending ride that I have a lifetime pass for and I don't get to decide when I can get on or off, and I can't control the speed or the amount of times I am on it. I hate this ride and I will never ask you to sit with me in my seat, but I promise to tell you when the wheel is too much and I promise to yell out when it makes me sick and I promise to tell you when I need you to talk me through the scary parts

I'm sorry that I never told you about the wheel
I'm sorry that the wheel makes me sick
I hate the wheel

Love,
your wife that struggles with spinning wheel of depression and anxiety