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Light it up…..Gold

September 2, 2012

Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.
~Buddha

The true meaning of life is to plant trees, under whose shade you do not expect to sit.
~Nelson Henderson

Things have been busy – for all of us. But if you could just take a few minutes today, right now to read this. It’s important. Thanks.

I haven’t had a lot of time to write lately. My kids have started school. There has been a flurry of appointments and evaluations. There have also been battles with various service providers and insurance companies; and of course, the scheduling nightmares during this notoriously difficult transitional time of year which brings new therapists, new teachers and new routines.

There have been new concerns, new tests, and even new possibilities opening up for Mary. I got a “promotion” at my volunteer job (comes with a raise of 200% of nothing. 😉 ) which has had me inputting data on my computer instead of blogging in my “spare” time.

To say things have been hectic would be a dramatic understatement. I know the same is likely true for many of you.

This is September. It’s crazy.

But could I get you to think back to April? Can you remember Autism Awareness Month?

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Do you remember the Light it Up Blue Campaign, where buildings and people all over the world put blue lights up and wore blue shirts in order to bring more awareness and understanding about autism and the families it affects? Do you remember what that felt like? Do you remember the excitement, hope and support that flowed through our community? Do you remember the shared stories of struggles and triumphs that brought us together, even a little more than we already were? Do you remember the news coverage? The awareness? The progress that has been made from making our wider communities aware and therefore a little more understanding of the challenges our children face each day? Do you remember the tearful peace we collectively felt when ABC News ran an experiment to see how people in a diner would react to an autistic child, and we suddenly realized how much has changed for our children in such a short period of time- all through the hard work to spread awareness and understanding.

At the beginning of April I wrote this in my post, Community.

It is the little acts of compassion, such as handing a child a sticker instead of offering judgement or quietly replacing your white lightbulb with a blue one, that speak volumes to those of us in this struggle to help our children. It is the gentle smile of understanding that whispers, you are not alone, that we cling to. And when we are at our lowest and most vulnerable, when we have cast our fears, doubts, frustrations, hopes and worries out into cyberspace, it is the quiet voice and the comforting hand that reaches out across the blogosphere and into our hearts, “Me too.”

In the early days of Christianity, believers wore a small symbol of a fish, as a sign to recognize each other. During the days of the Underground Railroad, houses that were sympathetic to the cause and willing to offer shelter to those on the journey would light a candle in their window.

That’s what the blue lights mean. That’s what the puzzle pieces are. It’s a sign that says to those of us on the journey,
“I get it.”
“Me too.”
“You are welcome here.”

So you know I must have a point here, right? I mean, what could Light it up Blue have to do with September? Not a whole lot – I just want you to remember what that felt like to see those blue lights, to see the school filled with teachers in blue shirts, to see stories on the news, while I tell you this:

September is Childhood Cancer Awareness Month. The gold ribbon is worn as a symbol of support and awareness for those children and their families fighting against this terrible illness. Did you know that? I don’t hear too much about it. I don’t see the Empire State Building with a big gold ribbon or even gold lights up today, do you?

Some facts:

One in every 330 Americans develops cancer before the age of twenty.

On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States.

On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.

Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.

The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.

Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.

Despite these facts, childhood cancer research is vastly and consistently underfunded.
~Alex’s Lemonade Stand

In addition, an average of 7 children die each day in the United States from cancer. Take a minute and roll that number around in your head. I would wager that if you knew just one of those children, you would think that just one would be one too many. When Troy was in preschool, a routine exam revealed that he may have a form of leukemia. With multiple members of my own family having had various forms of blood cancer, we followed up with multiple blood tests to be certain. At the time, I was pregnant with Mary, and I remember the sheer terror that consumed us for the short time that we waited on those results. As you may also know, Mary has been tested multiple times for cancer and for several syndromes that would have put her at an extremely increased risk of developing cancer. I have had a small taste of the terror, but have thankfully never had to experience the reality of such a diagnosis. Unfortunately, a friend of mine has. I can only imagine the endurance and faith it must take for her to get up each morning and fight this fight.

So what can you do? We can’t all spend our lives in the lab looking for a cure. But we can do the one thing that we, as autism mamas, have gotten pretty darned good at – we can spread awareness. We can help to advocate for these children and their families, because I can only imagine the time and stress and energy that goes into caring for a child with cancer. This leaves little time or reserves for anything else – especially advocacy. We, as autism mamas can put our “training” to use here.

The other day at my children’s school, we were able to get every child in the school to pin a gold ribbon to their book bag in honor of this one family that has now been fighting this battle for seven years. It seems small to an outsider, maybe, but it meant everything to that mom. It was a visible reminder that they will never travel this road alone.

Awareness and advocacy can lead to funding – funding that is desperately needed for research, the kind of research that can literally save a child’s life. I’m not going to go and get all Sally Struthers on you, here. All I am asking you to do, is go to the fabric store, or the craft store and pick up some gold ribbon. Then pin it somewhere – I have it on my kids’ backpacks. Leave it there for September. Change your profile picture on FaceBook. Then, just like the blue lightbulb on your porch last April, when someone asks you what it is, tell them. That’s it. That’s all I want you to do.

As an autism parent, you probably already know a little of that feeling- someone else out there is on your team. They see how hard you are working, they see the pain, they see the fear, and they are there, offering you a hand in the darkness, and that really is the most any of us can do.

Dare to reach out your hand into the darkness, to pull another hand into the light.
~ Norman B. Rice

If you want, you can donate cold hard cash to some of the following charities:

Alex’s Lemonade Stand

St. Jude’s Research Hospital

Band of Parents

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5 Comments leave one →
  1. September 3, 2012 1:18 am

    Such a beautiful post. And who doesn’t love a little gold bling? Consider me in. 🙂

    • September 3, 2012 1:26 am

      Thanks! We could use a little help passing the idea along, so feel free to tell your friends! 🙂

  2. jess permalink
    September 3, 2012 11:48 am

    shared via twitter – thank you for sharing. children should never have to face this.

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  1. September Gold | threepuzzlepieces

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