Far away from where you are

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I didn’t see it coming. I didn’t know it was there. I didn’t prepare myself for it, but here it is – hidden between two books: this picture of you.  Smiling your big, bright smile. One little tooth missing. Your sister’s arm around your shoulder as you wait to go into the skating rink. And for almost a second, I swear I can hear your laugh but then it’s gone. A fleeting memory quickly replaced by the crushing weight of your absence.  I can’t catch my breath. I can’t breathe because this picture, this two-dimensional flat reflection of you is all that we have left.  Reflections. Memories. And no reflection – no matter how beautiful can replace you.  I want it back. The sound of your laughter. Your beautiful face. All of it. I want her back so badly that my whole body just aches.

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In Goodbye Small Fry, I blogged about my niece Vanessa’s death. As the one year anniversary of her passing approaches, I find it harder and harder to cope with my grief.  The anxiety overwhelms me at times and I can no longer stop the tears. I no longer want to.  There is something so upsetting about knowing she has been gone a year.  I feel like I am losing her all over again.  I am so thankful my nieces came to visit us that summer in 2013. So blessed that she took so many photographs.  Typical teen selfies then. Priceless memories now.

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Her pictures adorn my refrigerator, my walls, and my home. So many smiles. Fat baby cheeks. Giggling Toddler. Too-big two front teeth. Self-conscious pre-treen. Gorgeous teenager. So many photos of my nieces and my daughters growing up together.  So many memories, but still.. not enough memories.  I look at the pictures I’ve taken in the past year and they are so empty without her in them.  At her service, we cried and we laughed and we cried again.  I took this picture of her sister and my daughters.  When I had it printed, I realized that this was the first of a lifetime of photos without Vanessa in it and my heart just sank.

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**Photo description Daughter Ali, Niece Christina, Daughter Tori.

People offer cliches: “She lives on in your heart!”  Yes. I know she does. We saw Guardians of the Galaxy and I thought “Vanessa would have LOVED this.”  Baby Groot?  Her friends called her Baby V and she loved Marvel.  We went to Universal Studios and saw so much Captain America memorabilia. I could almost see her big blue eyes light up.  I took a picture of a shirt just because I could see her wearing it with her Marvel shoes.  I do see her everywhere. I do. But it’s a ghost of a memory. I can’t hug her or text her or hear her voice. I can’t see her roll her eyes and say “Oh Aunt Sherri! Really?!”  I do have her in my heart. I do. But I would rather have her in my arms.  I can’t hug my heart.

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When a loved one dies, employers give you three days off to grieve and attend the services.  Three days. As if I could fit a lifetime of grief into just three small days.  What about the rest of the time?  What about the days where I wake up and the loss is so profound that I have to remind myself to breathe?  What about the paralyzing sadness as her birthday approaches or the anniversary of her death draws near? Some days I just want October 1st to hurry up and get here so I can move past that horrible day. I want to wipe it off my calendar. I want to make it disappear.

Other days, I’m terrified that every day is one day closer to that awful date.  A year?  Has it really been a whole year without her? There are days when it feels like it has been years since I heard her voice, but most days I feel like she was just here.  As October 1st approaches, I feel like I’m back in that ICU waiting room.  Helpless. Seeing her there, but knowing she’s gone.  That’s how I feel when I see pictures of her now.  I see her in those pictures, almost always smiling that great big smile that lit up the room.  I see her in that moment so clearly – like she’s here – but she isn’t. She is so far away.  She is missing from me and there is nothing that can replace the Vanessa-shaped hole in my heart. ❤

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“So far away from where you are
And standing underneath the stars
And I wish you were here

I miss the years that were erased
I miss the way the sunshine would light up your face
I miss all the little things
I never thought that they’d mean everything to me
Yeah, I miss you and I wish you were here”
~Lyrics from Lifehouse’s “From Where You Are”

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**Photo description: TOP LEFT – A collage of pictures of Vanessa from her phone.  TOP RIGHT: Vanessa and my youngest son Jack. BOTTOM LEFT: Two blue-eyed, fun loving, fully crazy kiddos who should have had more time to realize just how very alike they are. ❤ BOTTOM RIGHT: A frosted blue window with the quote “I don’t know which pain is worse. The shock of what happened or the ache for what never will.”

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When Logic Fails: Asperger’s and Grief (part two of two)

How does a person with Asperger’s process death? Do we experience grief the same way that neuro-typical people do?  These were my questions as I struggled to understand my personal grief when my niece died last October.  In my last blog, Goodbye Small Fry, I talked about the death of my niece Vanessa.  I shared the story of her loss so you could see what a profound loss it was.  I wanted you to understand that it wasn’t a small loss to me. It was a deep, searing loss.  My life is filled with memories of my nieces and my daughters together.  I lost a piece of myself when she died.

After her death, I felt like my grief was somehow different than the rest of my family. Like a typical Aspie, I tried to research it.  I googled Asperger’s and grief. I found almost nothing pertaining to ADULT grief.  There were a few scattered articles on explaining death to your aspie child.  I reached out to my Aspie community.  Those who had experienced a loss were very supportive, but many of those who did not have a similar experience could not relate.  They wanted to, but without any personal experience, it was difficult for them. I did not get upset. I understand all too well how it feels to not be able to ‘be there’ because you cannot understand – no matter how bad you want to.

When I removed “Asperger’s” from my Google search and just searched for grief and death, I saw an immediate pattern.  Most of the results talked about Elisabeth Kübler-Ross’s five stages of mourning and grief.  According to the web, these stages are universal: experienced by all people everywhere in the world. They can be experienced in any order and with varying levels of intensity. People grieving can go back and forth between stages as they work through them. Acceptance, the final stage, can take years to reach and some people may never reach it.   Here are the five stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

It is said that one must experience all five of these stages in order to feel more peaceful about the loss they have experienced.

I can only speak from my own experience, but as a person with Asperger’s, I disagree.

As heartbroken as I was, I did not feel I experienced grief the same way as my neurotypical family members did. While my family members struggled with the first four stages of grief,  I only struggled with one.

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I had no denial.  My niece’s sudden aneurysm left her brain dead. Connected to a respirator and different monitors, she appeared to be sleeping. The respirator made her lungs expand and collapse – it gave the impression she was breathing.  Even though a piece of my heart wanted to believe that she was still “in there”, my brain knew she was gone.  It would not allow my heart to fantasize that some day she might come back to us.  She was gone. It was logical.  There was no denying it.

I did not experience anger either.  I watched as others felt angry at varying things, but I could not feel anger. Angry at what?  There was nothing to be angry at.  No one would have ever thought “aneurysm” in an otherwise healthy sixteen year old girl. To me, there was nothing/no one to be angry with.

I watched her mother and father bargaining.  I listened to the “if only” statements.  “If only we had..” “If only she had…” I could not feel the need to bargain because my logical brain understands we CANNOT go back in time. There is no do-over. There is nothing we could have done and there is nothing we can do now that will ever bring her back to us. There are no bargains to be made.  All the “What ifs” in the world cannot change where we are now.

Depression, however, hit me like a brick wall. Overwhelming sadness consumed me.  I felt immobilized by my sadness. Immobilized and confused.   I cried for my niece. For the loss of her. For the loss of all of the things she will never do. For the future she will never have. For the memories she will never make.  My heart broke for her.

I felt like every ounce of my energy was poured into processing the depression I was feeling.  I am not in any way minimizing my family’s grief, but at times I wished I could feel denial, bargaining,  or anger – anything but this crushing depression and sadness.  In my head I imagined we were all given a “pitcher” of grief.  Where they had four glasses to pour their grief into, I only had the one and I couldn’t stop it from overflowing.

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For individuals with Asperger’s, I believe there is another facet of grief that we feel.  A facet that maybe only we are capable of feeling – Internal Conflict.  Aspies are logic based.  In almost all instances in our lives, logic automatically overrides emotion.  The brain prevails over the heart almost every time and the heart stays quiet.  (I realize the “heart” doesn’t actually control our emotions, but for the rest of this blog, I am going to refer to the part of the brain that controls emotions as the heart.)

As I was trying to process the loss of my niece, I realized that for the first time in my life, my logical brain and my emotional heart were at war with each other.  I could not function.  Logic failed me here. 

My heart wept. It did not try to reason. It just hurt.  I felt like there was an elephant sitting on my chest. I couldn’t breathe. I didn’t want to move. Everything was a reminder that she was gone and that fact was too much for my heart to bear.

My brain, on the other hand,  argued non-stop:
You believe she is in Heaven. Why are you sad for her? Isn’t Heaven a better place than here?”
“Would you want people to be sad for you if you were in Heaven?” 

“You believe you will go to Heaven some day, so you will see her again. This isn’t goodbye. It’s goodbye for now.” 
“If she were on an extended vacation and could not see or talk to you – would be you sad for her? No. You would be excited for her so why are you sad now?”

Of course, my brain was right.  All of these things were true, yet I was stuck in this looping cycle between my brain and my heart.  Logically there was no reason to be sad. Heaven is better than Earth. Logically it made sense. So why did I hurt so badly?

This loop of brain vs. heart vs. brain vs. heart continued because I could not stop hurting no matter how logically I tried to process it.

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It was maddening.  For the first time in forever, my heart trumped my brain. I was at a loss. I did not know what to do with myself.

I talked with a counselor who explained. “You aren’t grieving for HER. You are grieving for YOU. For YOUR loss.”

That had never occurred to me.  Why hadn’t that occurred to me? It wasn’t the loss of HER future memories I was grieving, but mine.  It wasn’t the things SHE would never do, but the things *I* would never do with her.  I had spent the days after her death helping and planning and doing for others.  These are things I am good at.  For some unknown reason,  I needed permission to grieve. Permission to think of me during this time.  Permission to put logic on the back burner.

I still struggle with grief. I still  attempt to understand why I grieve. It isn’t logical, but like I said, the heart trumps the brain on this one.  The tears come and there is no amount of thinking that can stop them.  I’m not sure if that is the final stage of grief: acceptance. If it isn’t, I’m not sure I will ever find it.

I’m still coping with her loss.  The first of every month is the anniversary of her death.  I used to feel that it was one month further away from her. Further away from the last time I saw her face. Further away from the last time I heard her laugh. Further.

I don’t think of it that way anymore. That was my heart’s way of thinking.

I still prefer logic. And logic tells me that every month is one month closer to her because even for me, death is inevitable.

 

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If you are struggling with grief and this blog has touched your heart in any way, leave a comment.  It’s nice to know there is someone out there. ❤

Goodbye Small Fry: Asperger’s and Grief (part one of two)

There were four of them. Four girls, but Vanessa was always the smallest.

My daughter Ali and my oldest niece Christina were born in  1995 – just two months apart. Immediately inseparable. Both had blonde hair. Both were calm, logical, book-reading girls. When they were small, people used to think they were twins.

My stepdaughter Tori and my youngest niece Vanessa were born four months apart from each other. They were both two years younger than their big sisters.  They were so very much alike. Both were brunettes. Both were girly-girls. They loved to sing and dance and shop and drive their big sisters crazy.  Together, the girls were my Fantastic Four.

My youngest niece Vanessa was always tiny.  I even called her my “small fry”.  She may have been small in size, but she was big on personality with a big, beautiful smile to match.

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Pictured above:  L-R on the rocks:  Daughter Ali, Niece Vanessa, Niece Christina,
Pictured on the Right: In the back, daughter Ali, Niece Christina. In the front, Niece Vanessa, Son Joe, Stepdaughter Tori.

The girls have grown up together. From diapers to driver’s licenses – always together.  I look through my photos and see picture after picture of them smiling, playing, laughing.   Family vacations to Disney, Universal Studios, Holiday World.

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Pictured above: Stepdaughter Tori, Daughter Ali, Niece Christina, Niece Vanessa. Son Joe in the front
Pictured to the right, Ali, Vanessa, Christina

We’ve always been close.  We’ve always lived near each other.  My brother and my niece’s mother divorced when the girls were five and three, but I stayed close to the girls and their mom. The truth is, I couldn’t bear the thought of not being close to them.  We all lived in Arizona. When I moved to Illinois in 2000, my nieces and their mom followed soon after.  Together again.

In 2012, my husband and I moved our family to Florida.  We didn’t feel bad.  The girls were getting older.  They were busy with their teenage lives. The oldest girls – Christina and Alison – were going to be seniors. Soon they would be off to college.  It was time for us to relocate.

Christina and Ali  graduated high school last year – May 2013.  Christina was old enough to drive, and last summer my nieces drove down to see us (and the beach).  The girls were together again.  They took an overnight road trip to the Wild Adventures amusement park four hours away.  They went to the mall and the beach. They were teenagers being teenagers.  Two 18 yr old and two 16 yr old girls.  I wanted them to have this time together.  Life after high school and college changes everything. People get married. They move away.  Life pulls even the closest people apart.  I wanted them to have one more good summer vacation before the older girls went to college.  We didn’t know then that it would be the last time we would see Vanessa.

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Pictured above: The girls at the Wild Adventures Theme Park June 2013. Vanessa, Tori, Christina, Ali
To the right: Selfie in the car June 2013: Christina, Tori, Ali, and Vanessa

At the beach they made a crazy sand castle and put their intials on it: CAVV.   They took turns posing with it. Below is Vanessa and their castle.

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Sunday, September 29th, was just like any other day. It was just after six in the morning. I was on my way to the hospital to go to work when I got the call.  Vanessa’s mom said she needed me to come right away.  Vanessa had fallen and hit her head. It didn’t look good. They had life-flighted her to Kosair’s Children’s Hospital but she wasn’t responding. Could I come now?  I called in to work and turned the car around. I stopped long enough to pick up my daughter Ali. My husband stayed home to watch the boys.  My stepdaughter was in Tennessee with her mom.  There was no way she could come with us. On the way from Florida to Kentucky, phone calls kept coming in.  I spoke with the nurse taking care of my niece. Pieces of information filtered through: pupils fixed and dilated. Aneurysm.  Hypoxic brain injury.  I am a nurse. I knew these terms.  I knew what they meant but I couldn’t process them. I just needed to get there.

We drove all day and made it to the hospital late that night.  The prognosis wasn’t good.  She didn’t fall and hit her head.  She collapsed because an aneurysm in her brain burst.  She told her mom goodbye, walked out her front door and collapsed.  A neighbor started CPR almost immediately and they took her to the local hospital. At first, they thought there was hope so she was life-flighted to Kosairs, but there was nothing that could be done.   It was already too late.  Her brain was already too damaged.  The team of doctors had pronounced her brain dead that afternoon.  In order for her to be officially brain dead, the doctors would do a second test the next day.  If she failed those tests, she would be considered brain dead – legally dead.  Dead? I couldn’t even process that word. Look at her there.  She looks perfect.  Dead? no. No. NO. NO!!

I think brain death is the absolute worse death possible really.  It makes you feel so helpless.  I’m a nurse and even with all of my nursing knowledge I could not seem to believe what the nurses and doctors were telling us.  I’d look at her little chest rising and falling and her heartbeat on the monitor. I would hold her hand. She was so warm. But they kept saying “she’s gone.”  In my head, I knew it was the respirator that was making her breathe still, but… I just could not convince my heart that she wasn’t sleeping.  I can remember kissing her on the forehead and her mom saying “You’ll wake her up…” and cutting herself off and crying as she caught herself.  We all wanted her to just wake up. Please. Please. just. wake. up. Vanessa. Please. But she didn’t. She couldn’t.  She never did.

The next day, October 1st, the doctors tested her again.  She failed their tests for the second and final time.  They declared her dead via “brain death”. It was official. They were so nonchalant.  We were so heartbroken. Dead.  But..she’s so warm.  Not a scratch on her. We were reeling.  They were saying she was already gone, but looking at her lying there,  it didn’t feel like she was gone.  Even though we didn’t want to, we knew in our hearts they were right.  The brain does not heal.

Vanessa had only had her license for only a couple weeks, but she had agreed to organ donation.  We wanted to honor her wishes.  Two days later, she became an organ donor.

The hardest thing – the thing I still struggle with – is knowing that in order to honor her wish to be an organ donor, we could not turn off life support.  Her heart would beat and her lungs would breathe until the transplant team took her organs.  It felt like we were sending her into the operating room to die even though they had officially pronounced her ‘dead’ the day before.  We honored her wish, but it hurt so much to not see her take her last breath. To not be there and hold her hand. It felt like we were sending her into the OR to die alone.  I don’t think anyone can understand how that feels. I know her gift will help others avoid the grief we are going through now and I don’t regret it.  It just hurts.

The organ donation people were very nice.  They made fingerprint necklaces for us with paint and clay. They put her handprint on canvas for us. This is what we have now. Memories and photographs. Fingerprint necklaces and handprint canvases. It just isn’t enough. ❤

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Pictured above: Vanessa’s handprint on canvas-my daughter Ali painted the scene around it.
Pictured to the right: A collage of pictures of Vanessa.

Vanessa was well-loved. She baked crazy cupcakes and brought them to school.  She played soccer. She swam. Because she was so small, they called her Baby V.  After she passed, her classmates at William Henry Harrison High School in Evansville, IN wanted to do something to honor her.  They decorated an overpass with the words”We R Vanessa Strong.”  They knew she loved Marvel’s Avenger’s and made “Vanessa’s Avenger’s” shirts. Without being asked to, they sold the shirts to help raise money for her services and medical care.  They sold out of the first batch of shirts within the first few hours.

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At the first football game after she passed, the stands were filled with fans wearing Vanessa’s shirts. Even the opposing team – Castle High School – filled their stands with Vanessa’s shirts. So much love.

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Pictured above: Vanessa’s High School: William Henry Harrison High School

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Pictured above: The opposing team: Castle High School

I think about those words “Vanessa Strong” and it makes me smile.  I think about her tiny little frame. Her great big smile.  Her silly faces. Her fun-loving attitude. Her laughter. Vanessa Strong?  I don’t know.  Vanessa Spunky. Vanessa Enchanting. Vanessa OhNoShe’sNotSingingAtTheTopOfHerLungsAgain.  Vanessa WhatDidYouPutInThoseCupcakesNow?  But I would have never thought Vanessa Strong.  That’s what we are.  That’s all we can be now.  Strong.

We love you small fry and we miss you. Every day. ❤

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Pictured above: Stepdaughter Tori and daughter Ali in their Vanessa’s Avengers/Vanessa Strong shirts.

If my story has touched your heart, please take a few seconds to comment. ❤

You have the power to change lives.  Register to be an organ donor at your local Department of Motor Vehicle or here –> at Donate Life