Archive | September, 2013

Eme’s Army: Fight for Sight

30 Sep

Oli was recently given an amazing opportunity to work with another special needs child on a campaign by a company called Paper Clouds Apparel.

Paper Clouds sells t-shirts, hats, sweatshirts, hoodies, and totes featuring the artwork of special needs children. Oli has her handprint heart on two different t-shirts and a tote that is now available for purchase. She is featured alongside another child named Logan and together they have some incredible things to choose from.

Paper Clouds Apparel employs special needs adults AND they donate 50% of the proceeds to a charity that we choose. We chose http://www.emesarmy.org. Emerie is a little girl who needs our help to get her eye sight back. Please visit http://www.papercloudsapparel.com and check it out!!

“The Cause (Sep 30 – Oct 13):

Eme’s Army
Eme is 6 years old and she is being robbed of her sight by CRB1-LCA, a very rare genetic disease. Eme’s Army, made up of supporters and volunteers like you, raise awareness of childhood blindness and fight for those like Eme. CRB1-LCA has no treatment. A gene therapy clinical trial is being conducted for RPE65-LCA right now that is working and is giving blind kids like Eme their sight back. By replacing the mutated/broken gene with a good copy of the gene, blind kids can see again. It is a fight against time. If too many of their retinal cells die, the cure in clinical trials will not work. So please join Eme’s Army and help them FIGHT for SIGHT! All money raised by Eme’s Army funds research through the Curing Retinal Blindness Foundation (CRBF). An all volunteer organization, CRBF was co-founded by Emerie & her family to stop CRB1-LCA.” -Quote from http://www.papercloudsapparel.com

I can’t even begin to describe what this means for Emerie and her family. Imagine having a child go blind and then find out that there may be a way to treat it…it’s beyond incredible.

I would do ANYTHING if there was a way for Oli to see.

Anything.

I may not be able to help Oli get her vision back, but I can help Emerie in a small way.

What an opportunity. What a privilege it is.

It’s a privilege not only to work with Eme’s Army, but also to work with a company like Paper Clouds Apparel.

What they are doing for the special needs community is remarkable. They are making a difference in the world. They are making it better and more accepting and more “normal” for kiddos like Oli.

That’s something that I am extremely proud to be a part of.

If you can, please visit their website or their facebook page.

Share this campaign with your friends. Let them know that they can help too! I never ask you guys to share anything, but this is important. The more money we raise the better chance Eme has of seeing her family again.
You don’t have to share it from here. Share it from Paper Clouds Apparel. It doesn’t matter how, just tell people about it.

Thank you!

Here are a few of the shirts to choose from:

emes5

emes6 (1)

emes7

emes8

emes10

emes9

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.

When Facebook Sucks

25 Sep

Well…WTF? Really? ANOTHER person that wants to bash on facebook? Why? Is there a point to this? Is it to hurt my feelings? Is it because they just don’t think about what they’re writing before they hit “post”? Maybe they speak a foreign language and what they typed in their language was super sappy and nice and then facebook messed it up and translated hate. No. That’s probably a little far fetched.

Why?

When I started this Oli page back in December of last year I never thought anyone would really be on it. I invited my facebook friends, told my mom about it, and that’s it. The only reason I started the thing was so that I wouldn’t annoy my friends by publishing my blog every day.

(Gasp.)

Everyday?

Yes. Everyday.

Back then I used to publish a blog post every single day. Back when I was writing Oli’s story. But then I got caught up in the whole facebook page craze. People that I didn’t even know started liking the page and reading the blog. I became more and more afraid of the people that I didn’t know that were reading my words, seeing my pictures….judging my girl.

At least that was my fear.

You know what?

People WEREN’T judging my girl.

People were LOVING her!

So I gained some confidence. I grew bolder. I started posting more, sharing more. I even posted a picture of Oli without her prosthetic eyes in.

Holy crap that scared the daylights out of me!!

But no one told me that it was gross. No one told me that she looked scary or ugly.

You know what people told me?

They told me the truth about Oli. They told me what I already knew.

They told me that she was beautiful no matter what.

They told me that no matter how her eyes looked, she was gorgeous.

They told me that no matter how much she struggled, how much progress she made, how much she didn’t make…that she was perfect.

People just reinforced everything that I had already believed about her.

As time went on and more people found the page, I would feel that fear again in my heart. That fear that stems from the day that Oliana was first born. The day that the doctor looked at me with ice in his heart and blackness in his eyes and announced that my daughter was NEVER going to look like everyone else. When he met my tear filled eyes will a flat dead look in his own and the words “She was born without eyes” rolled off his lips, that fear took hold deep in my chest and has never fully receded.

I’ve learned to deal with the fear. I’ve learned what my own truth is and how to handle situations with other people who may not find Oli as perfect as I do.

But every once in awhile, when I am sitting high up in myself, a single hurtful comment about her sweeps me into one of my lowest, darkest valley’s. It sweeps me to the deepest part where that fear thrives.

Facebook is a strange thing. It’s both wonderful because there are so many people and stories that leave me feeling full of hope, inspiration, and admiration, and it is hateful, hurtful, and awful. Because there are lots of both types of people in the world.

In my everyday life it’s easy to surround myself with love and support. Even going out in public has become less of a traumatic event. When Oli was a baby I used to hide her in her car seat to avoid the stares and the hurtful comments about her eyes.

I’m sensitive. What can I say?

A 6 year old? Not so easy to hide in a car seat.

And I don’t WANT to hide her anymore. Oli has taught me that beauty really does like INSIDE of us and not on the outside. I’ve learned to avoid the stares. I’ve somehow learned to decipher curiosity from the judgments. I KNOW she’s beautiful and that’s all that matters.

On facebook? I can’t just avert my eyes. I can’t unread a comment. I wish I could. I wish that “ban” button came with an “unread and erase from memory” button.

But it doesn’t.

So I get upset.

I get upset, not even with the people who choose to make fun of or hate on ME. I’m an adult. Not everyone is going to like me or agree with me. That part I’m okay with. It stings, but I quickly get over it.

It’s when people start saying hateful things about my daughter that I can’t just get over it.

But here’s the thing… Here’s the truth…

There are SO many people that LOVE Oli. That have nothing but positive, hope filled, lovely, AMAZING things to say about her.

Over 2600 people that do nothing but become inspired by her.

I let 1 person get to me. 1 person who had something negative to say about her.

I let that 1 person take away all of the good in one single instant.

I let all of my hard work become undone in a moment of time.

That’s sad.

That’s pitiful.

That makes me even more angry!

No.

I posted on facebook that I was going to take a break from the page for a bit to get my head back on straight. I do need to do that. I need to remember why I started this blog and the page.

I started it not to win everyone over. Not to become popular. Not for compliments or anything else.

I started it for Oli.

I started it so that I could share her story and maybe reach one other person going through the same thing.

I started it so that someone else out there may not feel so alone.

I started it to give other people hope. To let other people know that anything is possible if you just don’t give up. If you believe in yourself and believe in your children.

I started it so that I could show people that you don’t have to use your child’s diagnosis as any excuse NOT to do something. Use it as an inspiration to do EVERYTHING.

Thank you for reminding me of that with all of your comments tonight.

Thank you for reminding me to get my head out of my ass, and to stop feeling sorry for myself.

Thank you for reminding me that I shouldn’t let one person stop me from doing what I wanted to do with this thing.

Tonight really through me for a loop for two reasons.

One because that comment just totally caught me off guard and two because all of the support that you guys have given not just Oli, but me too.

I couldn’t believe it when I picked up my phone and saw over 100 people had commented on my status.

And every single one of them was telling me not to give up.

So I won’t.

I never have before and I sure don’t want to start now.

I never ever want it to be an option for Oli to give up just because something is difficult. I don’t ever want to set that example, so I won’t do it here. I won’t do it anywhere. I have to lead by example and one way to do that is to just keep moving forward.

Here, we put one foot in front of the other and just keep moving forward.

Some days that’s all you can do right?!

Thank you.

They said that she may never walk.

2 Sep

When Oli was born on a hot, spring night in May of 2007, I was a different person. I lived in a world where my life made sense. My life had order and structure and play dates and date nights. My life was free of specialists, prosthetic eyes, Braille, vision teachers, early intervention programs, and support groups. I had never witnessed a person look at me with pity in their eyes or felt the weight of a disability trying to drown me with its sorrow.

I was naïve.
I was over confident and cocky.
I thought I was indestructible.

I thought that I was immune to the bad and the sad things that can happen in life. Those things just didn’t happen to me. Those things happened to other people.
They happened to people that I heard talked about in whispers. They happened to people that I gossiped about on break in the cafeteria at the hospital where I worked.

“Did you hear about that mom?”
“Yeah. They said that she was a nurse. Her baby was born with a disability.”
“Yeah. I know! I couldn’t believe it!”
“I can’t believe it happened to her! She’s so nice. What is she going to do now? I don’t know what I would do if I gave birth to a special needs child.”

Suddenly I WAS that mom. Suddenly I HAD that baby.
Suddenly my life no longer had structure or play dates or date nights.
Suddenly my life was FULL of specialists, prosthetic eyes, Braille, vision teachers, early intervention programs, and support groups.

In 12 short hours my life had been turned upside down. I was drowning in sorrow and self pity and anger. I struggled with the fact that my baby had not been born in a way that I had expected. My baby had fallen somewhere well beyond my comfort level.

What was I supposed to do with a blind baby?

As the months and then the years wore on, I let my daughter live outside of what I was comfortable with. As each new diagnosis came, each one seeming to be worse than the last, I grew more and more uncomfortable with the challenges that came with raising such a special little girl. I was not confident in my abilities to parent her.

I didn’t know what I was doing! I didn’t know if I was doing this right or this wrong or this just mediocre or this just horrible!

They told me that she may never walk or talk. She may never do this or do that…

So I stayed right where I was. Sad… Angry… Alone…

I stayed there until it became so uncomfortable and so miserable that I had to change the way that I looked at our situation. I had to just accept that this is what had happened.

Instead of looking at it as unfair and unjust, I started looking at it as an opportunity. I began looking at it with serving a reason and a purpose. I stopped feeling sorry for both of us and began realizing that just because she had different abilities than many other children, they were only disabilities if I disabled her myself. Which is exactly what I had been doing by feeling sorry for her and thinking that she couldn’t do something because she was blind and couldn’t walk, or talk, and was autistic, and had seizures.

I stopped using her diagnoses as an excuse for her NOT to do something.

I started thinking about ways to make it possible for her to do everything my other kids did.

I began letting Oli do what any other child did. I just had to do it with her.

When my other two children wanted to go in the bouncy house at the park, I went in the bouncy house with her and helped her jump.

When my other two children wanted to go on the kiddie roller coaster at the fair, I went on the kiddie roller coaster with her.

When my older son wanted to go bike riding, my husband and I bought her a bike trailer that she can pedal on her own.

It’s just what we did.

So when someone suggested that Oli do a triathlon, I jumped at the opportunity.

Why not right?!

She loves to be outside and she loves the pool. I knew that she would love being out there competing with other kids and doing the things that other kids do.

I could not NOT let her do this just because of her inability to see, or swim on her own, or bike on her own, or run. We just modified her race.

I did it WITH her.

It was the most incredible experience. I kicked with her on a board for the swim, pulled her in her bike trailer for the bike and pushed her in a jogging stroller for the run.

Close to the end of the race I pulled Oli out of her bright yellow jogging stroller and whispered to her quietly “Oli? Are you ready to cross that finish line? Let’s go! All of your friends are cheering for you! You walk across that finish line!”

Oli got out of the stroller and held my hands, walking the last part of the race.

My daughter…who some said may never learn to walk…WALKED ACROSS THE FINISH LINE OF HER TRIATHLON!!

She may not have been able to tell me how it felt to hear her name over the loud speaker, to hear all of the kids and the parents cheering her on, but the smile on her face said it all.

No words were needed to describe just how she felt at that moment.

My girl was proud of herself.
2013-08-25 09.02.07

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