Tag Archives: moving

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.

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Leaving a child behind

1 May

After what seemed like an hour, but was more likely only a few minutes, I dared to sneak a glance at my husband. His face was a silhouette against the window of our car. With the sun setting orange behind him I could just make out the corners of his lips turning upwards in a smile.

“Move? You really think we need to move?” He asked, sparing a glance at me and momentarily taking his eyes off the road.

“I do. I think that we really should. Oli’s vision teacher is always telling us how great Austin, TX is. I think we should look into it.” I answer.

“Okay. I’m in. She just isn’t getting the amount of services that she needs. She needs occupational therapy and speech. She needs more physical therapy and orientation and mobility. I agree. Las Vegas, NV is definitely not the best place to raise a special needs daughter. Let me talk to my company and see what they can do. Maybe I could somehow transfer.”

And that was it.

The decision to move my family was made on a hot summer day in August 2009 on the drive back from California after a trip there for my birthday.

There were no arguments and no one resisted the change. We simply decided to move.

Bittersweet tears were shed by my husband. He was happy for Oli, but sad for who he was leaving behind. Moving to Texas meant leaving his two sisters, two nephews, one niece and his mother behind in Vegas. It also meant moving much, much farther away from his daughter, my step daughter Thalia, who lived with her mother in San Diego, CA. She was 11 years old at the time.

I didn’t appreciate then what an enormous amount of strength and courage that decision took for him. What it meant to leave a child and move somewhere where he would only see her once every 6-9 months instead of every month. He made the type of decision for Oli, which I’m not sure that I could have ever made. He made a choice to help one child, who may have needed it more, with the sacrifice of not seeing the other. Their relationship would remain tightly intact via computers and nightly phone calls. Many many phone calls.

And many many tears.

Many tears of sadness and loneliness were, and still are, shed on behalf of Thalia.

Some days he gets lost without his oldest daughter.

Sometimes I wonder if he regrets leaving.

I wonder if he thinks it was worth it.

I’m sure most days he thinks that it was. And then. . .I’m sure there are others where the pain and the sadness are too much. Days where he longs to feel the touch of her sweet embrace and see the warmth of her beautiful smile.

I do know that every day he misses her. Every. Single. Day.

We both do.

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…

I drive my husband nuts.

23 Apr

(Back to my Oli story…)

I woke up one morning at the end of July 2009, to a request to pack my suitcase.

“Where are we going?” I asked.

“I can’t tell you, just pack some clothes. Oh, and can you pack for the kids too?” My husband looks at me sheepishly.

“How am I supposed to pack for everyone if I don’t know where we are going? I will only pack if you tell me what I am packing for.” I reply in my true party pooper nature.

“We are going somewhere for your 30th birthday. If you want that surprise that you say that I never treat you to, you will close your mouth and just pack. Please. Be a nice girl and just pack and don’t make me ruin it for you.” My husband begs me.

But, alas, I am never one to make things easy on him. I start guessing.

“Camping? We’re going camping aren’t we? I don’t want to go camping. I love it, but I didn’t imagine my birthday so full of mud and dirt and so NOT full of bathrooms and showers and fully cooked meals.”

“No. We’re not going camping.” Seth responds. “Go pack.”

“The mountains. We’re going to the mountains aren’t we? I don’t know about that? It might be cold at night and then Oli won’t sleep and then I’ll be grouchy and you’ll be grouchy and then it will just suck and I’ll want to come home because the children will make me crazy.” I’m imagining snow covered mountains at 3 am and watching a beautiful sunrise amongst other patients in the looney bin. All of us wrapped cozily in straight jackets being sent there by our lovely children and our husbands wayward attempts at disastrous surprise birthday trips.

“No. We’re not going to the mountains. Now just go pack! Why do you have to make this so difficult?”

“Because that’s just me and that’s why you love me.” I reply with a sweet smile and a voice dripping with sarcasm.

“Are we going to Hawaii? I LOVE Hawaii! That would be the best birthday present ever! I could totally handle mud, dirt, non sleeping children and the looney bin in Hawaii! Let’s go there!”

“You’re not going to play nice are you? You’re going to make me tell you.” He smiles despite his annoyance because he knows me so well and had been planning on telling me the whole time.

“No and yes. No I won’t play nice and yes I will make you tell me.”

He shrugs and lets out an over embellished sigh. “Okay. If that’s what you want my darling, annoying, party pooper wife. We’re going to California. I rented a house for 3 days on the beach. Happy?”

“Yay! Yes! Yes I’m happy! I love California! Now I’ll go pack. What should I bring? What if it’s too hot? What if the kids get sunburned? I need lots of sunscreen. Did you pack the beach umbrella? Do we need to pack food for the house before or after we get there? Should I wear my blue bikini or my red one? Good thing I’m not showing with this baby yet. What about clothes for at night? It gets cool at night. Should I pack coats for the kids? What are you bringing?”

“Aaaaaggghhh! Shannon! YOU are making ME crazy! I’M the one who will end up in the looney bin at the end of all this! Just GO PACK!”

I smile sweetly at him again. He loves me.

Maybe this whole turning 30 thing won’t be as bad as I thought. There is one thing that we do have to discuss while we’re gone. Something that has been running through my mind and keeping me up at night.

We need to move. We need to get out of Pahrump, NV.

We need to go some place that isn’t so isolated and has better services for Oli. I can’t stand the hour long drive to doctor appointments and the minimal therapy services she is receiving. We have to do better for her. We have to go someplace that can help her to learn and to thrive in this world as a blind child. We need to go where doctors understand her and therapists know how to teach someone who can’t see. Some place where she will not be an unusual case with an unknown condition.

I have to get out of this town. I feel like I’m drowning in a sea of uncertainty and suffocating on loneliness. I feel like if we could just get out and go someplace where people could help us, that it would all change. I wouldn’t feel like I was so weighed down by Oli’s disability and maybe I could learn to cope better. Maybe I would stop pretending that I was fine and I could start being honest. Maybe I would be able to tell someone that I hated this. I hated the fact that Oli wasn’t what I had imagined. Maybe I could tell someone that I was terrified of this baby that I was going to give birth to in 9 months. Maybe things would be different in a different place. Maybe I could let go of the hatred that I held for the way I felt. Maybe…Maybe I could just accept it and move on.

I’m thinking Texas. I’m thinking Austin, TX sounds like it would be a good place for my family. I hope my husband agrees… He’s going to get a surprise of his own this weekend.

Surprise honey! I want to move!

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