Tag Archives: sadness

I Know.

18 Apr

I don’t know why I still feel the need to read through every new doctor report that I get about Oli. Especially when they are brain scans like MRI’s and EEG’s.

I mean, I know what they will say. I know how they will make me feel. I know that by the time that I reach the end of the report, I will feel that familiar heartache, sadness, emptiness, and hopelessness that I always walk away with.

I know that it will take me right back to all of those feelings that I felt, and ran from, in the beginning.

I don’t know why reading certain words about her makes me feel the way that it does.

I know that she is cognitively delayed. This is nothing new. I do know that there has to be changes in her brain that make her unlike other children her age.

I know that there are physiological reasons why she cannot dress herself, go the bathroom by herself, brush her teeth, talk, walk well, control her emotions…

I know all of these things, and yet I was still rocked and shocked when I read the words “static encephalopathy” on her latest EEG report.

Static encephalopathy?

Brain damage?

Huh?

My daughter doesn’t have brain damage. You, madam neurologist, are mistaken.
I googled the term “static encephalopathy”. This new, ugly label that you included in my daughter’s EEG report.
I googled it and I am totally regretting doing so. Although it didn’t really change anything. I already knew what those words meant.

Permanent brain damage.

Just seeing it written, actually written down, having been officially diagnosed, was enough for me.

Why did I have to read about it further on Google?

And why did the doctor not tell me herself that she suspected this?

Did she not know, that I didn’t know, that this is what they labeled her as?

Because I didn’t.

I didn’t know.

I just thought that she was delayed.

Just delayed.

I always think that it is a possibility that she will be able to catch up.

Maybe not completely. Maybe she would always be unique, but aren’t we all?

Did they have to go and write down, WRITE DOWN, that she has permanent brain damage?

Don’t they even care about my feelings?

Shouldn’t this new label have required an actual sit down with the doctor?

Shouldn’t an official diagnosis of “static encephalopathy” require a meeting with my family to explain what this means for my daughter? Why do they have to be such assholes and write down something like that in a report?

The only reason that I was able to read it was because I requested all of her records for this Medicaid waiver program that we’re trying to get her on. I wasn’t mailed a copy or given this piece of paper upon discharge from the hospital.

Now I sit here, with my daughter sitting beside me, tears pooling in my eyes, and whispering “I’m so sorry” once again.

I’m so sorry Oli. I’m sorry that this happened to you. I’m sorry that this is something that makes your life more difficult. I’m sorry that I had to read this ugly label and feel sad for you for a little while. I’m sorry that I had to look into your beautiful face, put my arms around you, kiss your neck, and let you feel my tears as they dripped down onto your shoulder. I’m sorry that I can’t tell you why I am crying.

I will make you the same promise that I have made to you since the day you were born.

I will NOT let this define you.

I will NOT let this hinder you or discourage you or slow you down in any way.

I will NOT let doctors or therapists or teachers read this about you and let them make decisions about your future based on what a piece of paper says.

I will make sure that they KNOW that this is NOT who you are.

I will make sure that they see everything that I see.

I will make sure that the world treats you the same as everyone else and in most cases…better.

Because you are my special little girl. You are capable of achieving any dream that your heart desires.

It doesn’t matter what a piece of paper says.

This…

I KNOW.

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I know I’m okay as long as I don’t make pancakes for dinner.

21 Oct

“Close the door Michael. I can still hear them.”

Michael obediently pauses Zelda and walks over to the lightweight door, closing it on the sounds of my parent’s argument.

“Now turn up the sound on the TV and just ignore them.”

Michael again complies without protest, spinning the volume control on the old 32” TV. He picks up the remote control of the Nintendo and scrunches up his little face in concentration.

He is probably about 7 years old.

I am probably about 10.

This is not the first time we have performed this ritual.

It will not be the last time either.

About an hour later my mother knocks softly on our bedroom door.

I get up, reluctantly pausing Link mid stride across his never ending quest through the green maze, and open the door.

Michael looks at me worriedly.

I look up and into my mother’s red rimmed, glassy eyes.

I see the tears still pooling in the corners of them just about ready to spill over. Just about, but not quite.

My mother will rein them in, sparing me from having to wipe them from her cheeks.

My mom will pretend to be strong for me.

Even though I know she’s not.

Even though I know that she has once again been defeated.

“Are you okay?” I ask although I already know what her response will be.

“Yes. I’m fine.” She answers in a voice that is too high, too cheery, to be anything but fake.

It is only now that I notice that she is carrying two plates in her hands. She lifts them up towards my face.

“I’ve made pancakes for dinner!” She says this like someone would announce that they are going to Disneyland.

She says it like she’s just given me exceptional news.

I’VE MADE PANCAKES FOR DINNER!!

“Thanks mom.” I respond quietly. I try to pretend that this is good news. Pancakes. I love pancakes and so does my brother Michael.

I know what those pancakes mean though.

My eyes cast around her to the doorway and towards the silence that sits awkwardly beyond it.

My mother is confused at first by my sad expression. Then she meets my gaze with eyes pooling with tears once again.

She knows that I know.

She knows that even though I am only 10 years old, I now understand that pancakes for dinner is never a good thing.

Pancakes for dinner means that my mother is not okay.

I’ve kept that memory since childhood. I still associate pancakes and dinner as a very bad thing. I’ve had my own children now. Three of them. And guess what?

I’ve made them pancakes for dinner a few times.

Very few times, but I have and I cringe at that memory too.

I told the young child me that I would never do it.

I would never turn those light, fluffy, syrupy plates of deliciousness into a dripping plate of sorrow…but I have.

I have fought against instinct and upbringing and tried to swim against the tide that tries to push me in the direction of my mother’s life.

To no avail.

Points in my life have begun to mirror my mother’s despite my every attempt to fight it.

Of course it doesn’t all look the same. But a lot of it does.

More than I’d probably like to admit.

And so when my life falls apart and the tears stream down my face and my sobs threaten to choke me… I do what feels right. What feels comfortable.

I make pancakes for dinner.

That’s how I’ve come to measure my sadness and my coping skills.

Am I making pancakes for dinner?

If I am?

It’s bad.

Special needs parenting or nauseating roller coaster ride?

11 Oct

I wanted to write something for the people who may have babies and are just beginning to fall, head first, into this world of special needs parenting.

If you are like me, you are most definitely feeling the bounds of gravity as you plunge down screaming towards an end, a ground that seems impossibly far away. You’re racing towards a bottom that you cannot see, you cannot feel, and you believe you may never reach the end.

Let me assure you that you will.

Oh yes.

That end, that bottom, that ground is there.

BAM!! CRASH!! BANG!!

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Or maybe you’ll land a bit more softly.

Soft_Landing_by_Domo__Kun

Or maybe you’ll even receive a warning prior to landing.

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(Where was this sign when I was approaching?)

There will be a moment, a second, an hour, a day, a week, a month… I cannot say how it will happen for you…where everything will begin to smooth out. It will begin to even out. You will start to once again feel comfortable in your own skin again.

Or you will smack your face on a rock buried in the mud at the bottom.

This was me.

For me it happened in an instant.

A head jarring, face slamming, body crunching SMACK onto the bottom.

I cruised along downward in misery, in self-pity, in blame, regret, remorse, grief, sorrow…for years before a light bulb went off in my head like a giant flashing beacon begging me to notice it. It had been there all along. Drawing me down. Steadily building momentum and pummeling towards the forefront of my brain waiting for the right moment to come out and slam me into that pit.

Hello?!! Here is your awakening! Here is the answer that you’ve been waiting for!

THIS, MY FRIEND, IS THE END.

STOP FEELING SORRY FOR YOURSELF! STOP FEELING SORRY FOR HER!
SHE IS WHO SHE IS.
NO MORE.
NO LESS.
JUST BELIEVE IN HER.

And that was it. That was all I needed to “get over” the sadness. I was able to move on at that point.

All of the self hatred, self pity, sadness…it all just went away.

It seems pretty simple.

Looking back at it, it seems like someone along the way should have just told me that. They should have been able to say “just get over it”. “Just accept her.”

In truth… they did.
Lots of people did.

But hearing the words with my ears and believing them in my heart are two totally different concepts. I heard lots of people telling me how to go about moving on from this thing that had happened to me.

I heard lots of people tell me how they had dealt with something similar. How they had moved on from it.
I listened and listened. I prayed. I pleaded. I just did not feel it.

Until I did.

Until I understood with all of my heart that this was really not something that had happened to ME.
Until I threw away all of my expectations and just expected her to be the very best that she could be.

Which may not make sense to you at all, but it makes perfect sense to me.

How can I not have expectations for my child?

This is how.

I expect nothing at all of her and I also expect everything.
I expect that she will do everything, nothing at all like anybody else in the world.
I expect that she will do nothing but everything that she can do.
I expect that she will do and be who she is and I love her for that.

It’s just a different perspective. A different way of viewing life and the world in general.

Before she was born I had all of these dreams, all of these visions, of how we would be, how we would exist in the world as mother and daughter.

After she was born I mourned the loss of THOSE dreams.

I didn’t realize that I could come up with NEW dreams.

I didn’t know that I was able to re-create this new life however I wanted to.

I didn’t know what a blessing and a gift Oli truly was to me.

Once I began to realize all of these things my whole life began to change.

I wouldn’t want it any other way now.

So.

If you’re just beginning this terribly bumpy, painful, twisting, and nauseating roller coaster ride of special needs parenting I want you to know, it gets better.

I promise you. It gets better.

You may have to be patient. You may have to hang on, white knuckling your life for a little while before it does. But it gets easier.

People used to tell me “time heals all” and I thought they were full of B.S.
I never thought that it would get easier for me.

You know what?

I was wrong.

It did get better and it continues to get better all the time.

I just have to leave those expectations and pre-conceived notions of how I THINK it should be, at the door.
I just have to live my life loving my Oli however she is.

Or…

Maybe it will be totally and completely different for you.
Maybe you’ll be given a diagnosis and be fine with it from the start.
I’m not trying to speak for the whole world here. I’m just trying to give someone else hope that if they’re feeling like I felt in the beginning, it will get better.
Besides…what do I know?
Some days I’m still trying to figure this whole thing out.

Autism is just one color on the rainbow

27 Sep

I am doing an autism walk with and for Oli tomorrow. Because of that, I have been thinking a lot about what autism looks like and what it means in my family.

Oli was diagnosed with autism 3 years ago.

She was diagnosed by a team of specialists who specifically look at the differences between autism and blindness because they can appear on the outside to have shockingly similar behaviors.

Flapping in a typically developing sighted child is not part of normal (and I use that word loosely of course) development.

Flapping in a typically developing NON sighted child IS part of development.

A child speaking with echolalic patterns is not normal in a typically developing, sighted child.

Echolalia can be normal for a blind child.

Speaking, followed by a sudden lapse into being completely non verbal over a period of a few months, that is not caused by anything neurological…is NOT NORMAL in any child blind or sighted.

Yet this is exactly what my child did.

This is what led me to seek further answers by a team of specialists in Philadelphia.

This, along with other things, is what led to Oli’s diagnosis of autism.

So…there I was…3 years ago…raising a child with no vision, no language, and no way of communicating with me…

I was devastated.

This is the thing that kept running through my head,

“She can’t see. She can’t speak.”

Can you imagine, as a mother, what that feels like?

I had to face the reality that #1 Oli was never going to meet my gaze. She was never going to look into my eyes or look at me at all. I was never going to be able to look into her eyes and see an unspoken emotion that might lie hidden there. I was never going to be able to discern ANYTHING from her eyes.

And #2 Oli may never speak. I might never hear “I love you” roll off of her tongue.

(Granted, I might never hear the words “I hate you” either, spoken from the angst filled heart of a teenager, but that’s a different blog topic.)

Trying to explain this sadness to my family and friends was and still is difficult for me.

Most of them, when I do try and talk about it, respond with “Yeah but what if’s…” or “Yeah but it could be worse…”

They are right.

But it doesn’t make me feel any better.

I would rather hear “That must be hard” or “I’m sorry” or nothing at all.

I have found that the majority of the times that I do speak about the sadness, I do it NOT looking for answers to this problem. I am not looking for a solution to fix my heart. I am looking for an ear just to listen. I am only looking to get it off of my chest and express my sadness in words rather than bottle it all up inside and never speak about it. Which is what I did when she was born. I would rather tell you about it and leave it out there on the floor for those 5 minutes than carry it around with me for the next few days or weeks.

I know that Oli’s blindness is never going to be fixed or cured and it will never even improve. It just won’t. That’s life. That’s reality.

It took me longer to accept the fact that her autism will never be fixed or cured and it may never improve either.

But the truth is that it does not matter what label she has or what diagnosis she is given.

It doesn’t matter if those horrible evaluation histories label her as “Globally developmentally delayed” or “Autistic”.

It doesn’t matter because she still receives every possible service that would be available to her through either diagnosis.

And it doesn’t matter to me because that label says nothing about who she IS as a person. It may make her act a bit different on the outside. It may make language more difficult, but it will never define who she is as a person.

Just like the blindness will not define her.

It just won’t.

It took me a long time to figure that out too.

So today autism means less to me than it probably does to other people.

Autism for Oli is just one more color on the vibrant rainbow that makes her who she is on the outside.

But it can’t even come close to touching the spectacular kaleidoscope that she is on the inside.

Living within the isolation of myself.

14 May

We moved from Pahrump, NV to Round Rock, TX on October 1, 2009.

By the time we moved I was exhausted. Mentally exhausted.

Living in that desolate island of fear, tears, sand and mountains had completely depleted me. I felt so alone. Although my mom only lived a few minutes away and my husband was with me…I was alone.

I had submerged myself so deeply in self-pity and self-hatred, blame, guilt, remorse, and those constant day dreams of what might have been, I was beyond reach of anyone else. I was alone in a dark, sad, tear-filled cocoon of my own making.

I couldn’t wait to move. I had pushed everyone away. I would talk with my friends, listen to stories about their children, the whole time thinking to myself “You don’t understand. You just don’t understand how hard this is for me.” They didn’t understand. Because I never told anyone. Moving seemed like the best solution at that point. I thought that if I changed my outside, if I changed my zip code, that it would change the way that I felt.

I had convinced myself that it was all because Oli didn’t have enough support. That it was because I didn’t have enough support. It was. But, it wasn’t. Oli did need more help with people experienced in blindness, but I had some support. I just couldn’t see it then.

I had met and made friends with other moms who had visually impaired kids. I had become good friends and remain friends with some of them. None of them were totally blind though. I had led myself to believe that because their kids weren’t totally blind, that they didn’t really understand what it was like.

I had made it US vs. THEM.

I had isolated myself even against the people who knew what it was like. I was looking for all of the differences in our lives rather than the similarities. I think some part of me enjoyed that feeling of isolation. Some part of me liked feeling sorry for myself and enjoyed believing that I was the only one in the world who felt the way that I did. That no one could possibly understand my struggles.

It just simply wasn’t true though.

LOTS of people knew how I felt.

If I just would have stopped for a second and looked outside myself, I would have seen that. I would have seen that I had people surrounding me that wanted to help me. They wanted to understand what I was going through. If I would have made myself available to them…if I would have made myself a little vulnerable…I would have seen that.

I didn’t.

I didn’t when we lived in Nevada and I didn’t when we first got to Texas.

Would Things Have Been Different?

24 Apr

Driving down to California that hot day in July, gave me a lot of time to reflect on what had happened during the previous 3 years. I started thinking about the year that I turned 27, 10 months before Oli was born.

Kekoa was only 7 months old. I have a picture of him and me on my birthday that year. He was sitting on my lap helping me to eat a piece of cake. What strikes me most in that photo is how young I look. How peaceful. The worry of doctor appointments, evaluation deadlines, and missed milestones had not yet been etched on my face. That deep penetrating sadness cannot yet be seen reflecting in my eyes. Grief cannot yet be seen shadowed over my shoulder. I had no idea what my life would look like just 3 short years later.

I can’t help but think about what my life would have looked like if I hadn’t had Oli.

Would I still be ignorant to things such as early intervention services, occupational and speech therapists, VI teachers and O & M specialists? Would I miss the looks that strangers give to those who are different than them? Those looks that say, “What is wrong with her? Oh! What is wrong with her?!” Those looks that break my heart. Would I be oblivious to the passing remarks containing the word “retard” or the jokes made about blind people? Would I miss spotting the looks of exhaustion and overwhelming sadness that I see painted all over the faces of other special needs moms? Would I appreciate every single day with my children as much as I do now because I fear that I don’t know what the future will hold? Would I cherish their kisses as sweetly or hold on as tightly when they wrap their arms around me? Would I have learned to walk through the grief and come out on the other side stronger and more secure than ever before?

These are all things that I thought about, but did not have the answers to yet, in July of 2009. That year my sole focus was still on changing it. I wanted to change my life however I could so that I would begin to feel better. I needed to feel like I was DOING something for Oli. Being her mother just wasn’t enough.

As I was lying on the beach or trying to sleep in a strange bed that weekend, I became consumed with what I could do for her.

What I was doing wasn’t enough.
It wasn’t enough.
I should be doing more.
Other mothers were doing more for their kids.
I needed more.
I needed to do more.
I have to get out.
I have to get out of Nevada.
They can’t help her.
They can’t give her the help that she needs.
There has to be more.
There has to be a place that can do more.

My mind was trapped on a hamster wheel, spinning, spinning, and spinning. Chasing an unseen assailant that was ruining my life. Chasing a dream that I would be able to change it all. A dream where I was able to fix this somehow.

Still…a dream that I would wake up to a daughter who was “normal”. A daughter who was not blind and developmentally delayed. That dream that I secretly lived in while the world moved on without me. The world moved on and left me alone with my self-doubt, self-pity, and self-hatred.

Because I didn’t want to feel this way.

I wanted to just love her and believe in her.

I DID love her and I DID believe in her.

I didn’t JUST do it though.

I thought that all of those feeling were abnormal. I thought that they were wrong. And I thought that they made me a bad person. A bad mother. Even though those thoughts were my truth. They were my reality and no matter how much I tried to ignore them, forget them, and deny them…they were always there.

They were there taunting me, shaming me, and making it difficult for me to breath.

They told me lies like, you are alone. You are a failure. No other mother in the world feels like you do. You don’t deserve to have these beautiful children. You are not good enough. You will never be able to do enough. You can’t help her. You will ALWAYS feel this way. You will always be terrified, sad, and miserable.

And I was. For a very long time I was.

I didn’t know what was making me feel that way though.

All I knew? I was unhappy and I needed more support. I needed more support for my daughter.

I waited until we began our drive back to Pahrump to broach the subject with my husband.

As the sun dipped silently beneath soft orange clouds I built up the courage to say, “I was thinking…maybe we need to look into moving to another state. Somewhere that has more vision services and can help us better.”

A million butterflies danced and turned somersaults in my stomach as I looked at my husband, waiting for his response. You could have cut the tension in the air with a knife, once those words were out of my mouth.

A few minutes past and then my husband spoke…

Fine-Garbage, Happy-Lie Vomit

3 Mar

When I reread my old blog sometimes it strikes me as funny and sometimes it just strikes me as sad. I think I honestly believed all of the things I wrote back then. I believed that Oli was learning to walk and talk. I believed that it was still possible for her to just one day catch up to other children her age. Even though by the time she was 2 it was clear that she would not.

I was probably moving into denial at that point. I bounced around the first 3 stages of grief frequently in the beginning of Oli’s life. One moment I would be in denial and isolation and the next I would be angry. And then I would move into bargaining only to be swung back into denial. Most frequently I found myself in depression. Only recently have I moved on to acceptance and haven’t looked back since.

I didn’t know any of this then though. I didn’t consciously realize that I was grieving and nobody told me.

I thought maybe I just had bad coping skills (which I did) or that I was a bad person and a bad mother.

To combat my inner feelings of inadequacy, I told the world that everything was amazing. I tried to convince them that this was my lot in life and I whole heartily embraced it and was moving forward. I tried to convince you so maybe I would begin to convince myself. I thought that the more I tried to sell everyone on my fineness, the more fine I would eventually become.

It didn’t work out that way at all. The more I lied and faked happiness the more alone and miserable I became. By not letting anyone in, I isolated myself so deeply that I became entrenched in the quicksand of grief. Every move I made and word I spoke sucked me down and eventually had me suffocating on my own fine-garbage, happy-lie vomit.

As I move forward and continue my story I have to read the old blog to A.) remember what the hell happened 3 years ago because so much has happened since and B.) because it reminds me of that grieving process and I can clearly see it now in my writing. I can read a post from back then and see: lies, hope, sadness, fear, optimism, bargaining, pain, denial, anger, and a sense of being lost.

The one thing I don’t see in any of the old posts are real, genuine feelings. I see a bunch of words on a computer screen attempting to fool the world into believing that I was okay.

In the history of humanity, there was probably no bigger untruth.

Seth Was On The Teacups; I Was Still On The Tornado

21 Feb

“Home is where you are loved the most and act the worst.” ― Marjorie Pay Hinckley

I remember that first year of Oli’s life being full of incredible pain and sadness. I remember wishing that she was older so I could just get past all of those feelings. I thought that she would just hit some magical age and all of those feelings would just disappear in an instant.

“If only she was 6 months old…”

Then she turned 6 months. Nope. The pain was still there.

“If only she was 1…” Nope.

I couldn’t understand why I just couldn’t get over it?

Seth made a comment when Oli was about 6 months old that he was so glad the first 6 months were over because he felt so much better. The roar of our wild roller coaster ride had dulled to the excitement of the Teacups.

I looked at him and smiled.

“Yes. Me too. I feel the same way.”

I didn’t feel that way at all. Not one tiny bit. I felt exactly the same as the moment when the doctor said she didn’t have any eyes.

I…was stuck.

I feel like I missed enjoying Oli as a baby because I spent every waking moment worrying about her.

When she turned 1 and it was time for her to get her eyes I thought that, that would be the moment I had been waiting for. She would get eyes and everything would be right with the world again.

Nope. It didn’t happen then either.

Don’t get me wrong, it helped. Once her eyes were painted, I didn’t feel like I had to hide her in her car seat when we went out to avoid the stares and the comments.

It made it a little bit better, but it turned out that it wasn’t her appearance that was bothering me. She was beautiful either way.

The first couple of days after she got her first pair of painted conformers was a mixture of highs and lows.

(Her first pair fit perfectly and were not crooked.) The moment Beverly put them in and turned Oli around to face us was incredible. Suddenly my girl had perfect, beautiful blue eyes.

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She had eyes.

We couldn’t stop staring at her, turning her this way and that. Examining her face from every possible angle. Oli had a funny look on her face, feeling the emotion in the room.

“Oh, Oli. Look at you! Look at your eyes baby! You’re so beautiful!” I gushed over her and cried with emotion.

We got back into the car and started the drive back to Las Vegas. Oli was still in a car seat facing the back seat so I couldn’t see her face when I turned around to check on her. I found myself making up excuses to stop the car. Suddenly I had an attack of the munchies, the thirsties, and needed 10 bathroom breaks on the drive home. Of course I had to take Oli out with me. (Even though Seth was still in the car.) I would get her out of her seat, pick her up, and then spend 5 minutes just staring. It was an amazing day.

The next morning the rush of that high faded and I began my descent to another low.

They had given her a pair of eyes, but she still couldn’t see me with them.

My girl still couldn’t see.

I Thought I Was The Only One

12 Feb

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I began to think that all of the feelings in my heart about my daughter were terribly wrong. I was a loathsome, despicable mother for not just accepting who she was and continuing to battle with thoughts of alternate realities.

I began to hate myself.

I no longer believed that God had given her to me for a reason. Why didn’t He give her to an extraordinary mother who could just deal with this unexpected twist and not ritually beat herself up about what was wrong.

I felt small and worthless. Tired and overwhelmed. I felt like I was sinking on a slow leaking ship. I watched all of the other passengers confidently leap to safety while I remained steadfast, determined to somehow repair the damage or die trying. Everyone else was moving on, but I just couldn’t.

I loved her. I knew that I loved this little girl with all of my heart, but hated the fact that she had a disability. More importantly I hated that I hated that she was different.

I felt like I was all alone and that I was the only mother in the world with a special needs child who had experienced this sense of loss. I felt like I was the only one who grieved what might have been. Although I had all of these feelings in the beginning, as she got older they only intensified.

The weight of this emotional load began to get heavier and I grew weaker.

A dark and lonely road.

10 Feb

“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.”
― Lois Lowry, The Giver

As we left the doctor’s office I picked up my sweet baby Oli. I picked her up amongst all of the questions and uncertainty that surrounded her. I held the top of her head to my face and inhaled the smell of fear that came with her.

Oh Oli, what am I going to do? How am I going to get through this?

We drove back home and again the isolation of that house surrounded me. Oli was three months old now and it was time for me to go back to work. I desperately needed to get out of that house, but at the same time I was afraid to leave her. She had become my whole world. Every moment had been consumed with thoughts about her blindness and how I was supposed to help her. Every night I was scouring the internet for information on how to raise a blind child. I had even purchased a few books, seeming to be about a 100 years old

There should be more updated books on this subject. If the child on the cover is sporting extremely short cotton shorts and his mom has the feathered Farrah Fawcett hair, the book is probably a little bit dated.

However old, these books accompanied me to my first day back to work. I sat at the table in the break room with a strong cup of coffee and my feet propped up on a chair reading this musty smelling book. Topics included: how to encourage your blind child to crawl, encouraging your child to explore their environment, the importance of providing your blind child opportunities to touch different types of textures. I sat there reading this book while my co-workers chatted and laughed around me.

I was no longer one of them.

Could they see the pain in my eyes as I tried to laugh with them? Could they hear my heart breaking when I stopped to look at recent photographs of their children tapped to their lockers? Did they notice my annoyance when they tried to talk to me about mundane things?

I wanted to shout, “Didn’t you hear? My child was born without eyes! Why are you afraid to ask me about her? Why are you so scared to congratulate me?”

Not all, but a lot of people at work simply ignored the elephant in the room and said nothing. This hurt more deeply than being asked what I had shoved into her eyes. I wanted someone to acknowledge my pain. I wanted someone to take me by the hand, lead me away from the isolettes and ventilators and just hug me. Feel my pain with me. Cry with me.

As my break ended, I closed the book and silently walked back into the NICU. I peeked under the blanket of a tiny preemie lying in her bed. Born addicted to drugs, this tiny baby was screaming in discomfort. Her mother was nowhere to be found.

Didn’t this mother understand what a precious gift a healthy baby was? Didn’t she appreciate that she had somehow drawn a lucky card in the genetics department and had given birth to a baby without a disability? Why would she damage her child by doing drugs during her pregnancy? Did she have any idea how much I would have given for my girl to be born without complications?

I was beginning to get even angrier.

This was a very dark and lonely road that I chose to travel down.

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