Tag Archives: families

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

Advertisements

What if she never speaks?

20 Jul

As I stood in the hallway, talking and listening to this Italian mother speak about her 14 year old, blind, autistic daughter Eliza, one thought kept racing relentlessly through my mind. I had one question that I needed to ask this mom about the daughter that looked, and acted so much like my own. I wanted a tiny glimpse into the future of this Italian world that seemed to mirror my own.

“Does your daughter speak now?” I asked her quietly, trying to hide the desperation from my voice.

“No. No she doesn’t.” She replied, quite clearly seeing the pain seep into my eyes.

In that moment, in those brief few seconds that passed between us, the reality of what we both were feeling, the dreams that we had for our girls, were spoken without any words from our lips. They were spoken between the souls of one heartbroken mother to another.

She knew that when she reveled that truth and her reality to me, that she was giving me an answer that I didn’t want to hear.

I didn’t want to hear it.

Do you know what I wanted to hear? Of course you do.

I wanted to hear that her daughter had learned to talk. I wanted to hear that after years of silence, 14 years of silence…that she could now talk about what was going through her mind.

I desperately wanted to hear that one day my daughter would learn how to talk to me.

But that wasn’t what had happened.

As she began telling me the story of her daughter’s communication struggles, I began to feel more and more uncomfortable. I began to feel more and more angry. I began to see more and more similarities between our children.

And I didn’t like what I heard.

Her daughter had also learned to talk when she was 2. She had also stopped when she was 3. She had started speaking again right about the age that Oli is now…

And then she stopped.

She just simply quit speaking.

One day it was there, and the next day it just wasn’t.

Poof.

BOOM!

There it was.

One of my biggest fears had once again been dropped at my feet.

When Oli began speaking again a few months ago I couldn’t believe it. After 3 long years of complete silence I couldn’t believe my ears when she started to say a few words again. With every new word she spoke the fear of what she wouldn’t say the next day crept in the back of my mind. The questions of “What if she doesn’t talk today?” came with each morning sunrise. The fear of “Will today be the last day that I hear her speak?” came with each nightfall.

And here stood this mother telling me that all of my fears that I so successfully banished to the back of mind, might one day come true.

What now? What do I do with this information?

After a few days of living within that fear and those terrible alternate realities that my mind likes to create; the ones where everything goes wrong and I am helpless again struggling against a monster that I could never hope to defeat, I realized that I was projecting a future upon Oli that I have no control over. I was sentencing her to a life of silence without any knowledge or proof that this is what would happen. I was letting myself believe once again in a hopeless situation that has absolutely no reason to be hopeless.

Oli is not Eliza. Oli is Oli.

What she will or won’t do has nothing to do with what another child has or has not done. Even though that other child is so similar to her. She still is an individual. One capable of fulfilling any potential, achieving any goal and overcoming any obstacle that lies before her.

Oli is Oli.

I have said it before, she will do what she will do regardless of how much time I spend worrying about it. Regardless of how much time I spend crying over it.

So I took my own advice.

I spoke the words to myself that I have spoken to other parents about their children.

As her mother, one of my most important jobs is to never stop believing in her.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.co.uk/

Motherhood and Country-Coastal Living

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: