Keep your heart center open

Most of the time I want to post snark. Snark about students, work, the weather, other drivers…always about others.

I didn’t realize this until today at yoga.

During triangle pose Hannah said, “twist up and keep your neck soft. Keep your heart center open.”

And a voice inside me said, “to myself.” Keep my heart open to myself.

In a heart to heart (ha! No pun intended.) that my mom and I had right after L finished treatment and I graduated in 2010, she said that the hardest part of my moving on would be tolerating others who have not experienced the trauma that we have. That the moving on for me would be marked by moments of exasperation and frustration and impatience. Funny how mothers know us and can get to our very core quicker than any other. I am fortunate that these words were said to me with love and empathy. But, they were still hard to hear, mostly because they are true.

Impatient. That is how I feel most days. Even now, 4 years later. Impatient. Why was that truck parked at the gas station (it’s a gas pump not a parking spot), while the engine idled (duh! gas!), and the driver chuckled on his cell phone? Why is he in my way? Why is he blocking my way to the pump? Doesn’t he know I am already late? Doesn’t he know that I have been through more than him? Doesn’t he know that my son and our family have been through a lifetime of fear and agony and so the rest of life should be smooth sailing?

I thought all of those things in the span of ten seconds this morning, all before 8:15am. That’s a lot of thinking and a lot of brutal self-awareness. I so desperately want to move on from our experience with cancer. Yet at the same time, I wear our experience with cancer like a badge of honor, trying to be an advocate and drum up awareness. I use it like an angry megaphone, when maybe a quieter instrument would be more effective.

In the deepest, truest parts of my soul, I know that there is still healing I need to do. I need to forgive myself for not seeing L’s cancer sooner. Maybe if I had looked harder I would have seen it sooner.

I need to forgive my friend who betrayed me when I needed her the most. I need to forgive myself. Long before she betrayed me, I saw things in her that made me uneasy. I chose to ignore them. I shouldn’t have.

Many of the things that are frustrating me about others, are really things that are unresolved in me. The thing with trauma is that it takes your locus of control and flips it upside down, backwards, and sideways. In childhood cancer world, there is not control. You are a slave to the protocol and absolute neutrophil counts (ANC). We spent 15 months rudderless and hyper-paranoid. It’s exhausting. The re-entry into a world where I do have control (in theory) has been long. It has been arduous work that I underestimated.

I can’t go home again. I am not the same and neither is home.

Today in yoga, a voice told me that my snark is about me and not anyone else. Today in yoga, a voice told me that I need to keep my heart center open- to myself.

Thanks for nothing, White House.

Maya always tells it like it is. This is no exception.

Rockstarronan's avatarRockstar Ronan

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Ronan. When I’m not writing to you on the blog, I feel like a bad mom to you. I’m hard on myself and fuck, I just plain miss this. I cannot keep up with everything that is going on and life seems to running at an outrageous speed. So much has happened and so much is going on that I don’t even know what to address first. First things first, Ronan. I am so overwhelmed with every aspect in my life right now that I feel like a breakdown might be in order, just because I fucking deserve one. I keep telling myself, I have to get through September first, but I truly don’t know if I can wait that long.

So, where to start? The most important thing of course that has been consuming me. It started with that phone call from your Mr. Sparkly Eyes while I was out…

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Dear Mr. President

I made the mistake of opening this email while I was sitting in a restaurant with my two boys. On vacation. For the last weekend of the summer before they both go to school. I should have waited. I should not have opened this email. Because, Mr. President, the anger, disgust, and disappointment that I feel at this moment are beyond words.

I guess on some level I should be thrilled that you took the time to direct someone in your office to draft a standard kiss off email to all us childhood cancer parents. The grammar is correct and the language is very…political. And, hey, I got a message from the White House! But, unfortunately for me and my son and the THOUSANDS of children like him, the message that we got LOUD and CLEAR from you and your administration is that YOU. DON’T. CARE.

To add insult to injury, your message uses the very statistics that we are railing against. Mr. President, the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, well then, I think we need to redefine “progress.” And had YOU, not your staff, taken some TIME to read our petition and really listen to the parents who are pleading with you, you would have known better.

And the icing on the cake… you throw in your Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like my son. And, I am paying quite heavily for the health insurance and medical care that saved his life. However, that is not the point. This was NOT the time nor the place to advance your politics. This was your chance to listen. To be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos.

What is also disheartening to me is that I am sure you already have the pink light bulbs that you need to illuminate your tax payer supported home in October. Because, you know, boobs matter more than kids. I have boobs. Nice ones. I will most likely get breast cancer. There is a link between my son’s diagnosis and my chances of getting diagnosed. And guess what. I would gladly go under the knife and lose them both if it meant that more money would go to the kids.

I think what upsets me most is that you are a parent. Your girls are smart, funny, beautiful, and well cared for. You would do anything for them. So, why not stand up and speak out for them and their friends? That is what we are asking. That you make a statement, that you take a stand.

Mr. President, I am disappointed to the point of tears. Good thing your time in office is almost over. Not only did you lose my respect, but you lost my vote as well.

And, no, I won’t be “staying connected” with you.

The White House

Fighting Pediatric Cancer

By Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public Engagement

Thank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.

President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.

President Obama with Jack Hoffman

President Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)

But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.

That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.

We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.

In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more at HealthCare.gov.

So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.

Tell us what you think about this response and We the People.

Presidential Proclamation: National Childhood Cancer Awareness Month, 2013

Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.

Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.

My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

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