Dear Mr. President

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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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What does it mean?

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I went for a run tonight.

I am not sure what spurred me on. We were all at the garden plot picking weeds. As we were leaving, I asked if the boys wanted to jog home. C agreed. Off we went. Me and my 5.5 year old, trotting the half mile back to our house. He was a great companion. He told me that he likes looking at birds when they fly in formation because he takes pictures of them in his mind and that the pictures remind him of Santa Claus’ suit (too funny!). When we got back to our house, I was not winded at all. Not bad considering it has been a good three weeks since I have done anything physical.

I decided to go back out. No agenda. No time or mileage requirement. I don’t know what inspired me. The song of the crickets. The AMAZING sunset (pink and purple wispy perfection). The fact that I was not winded? Who knows? I still don’t and I probably won’t.If I try to focus on what the motivating “it” was, I may never find it. And I will spin my wheels trying to recreate something that didn’t exist.

I just know that I wanted to go running, so I did.

I am so glad. It was actually fun again. I have no idea how far I went, or how fast, and I don’t care. I found myself smiling while running.

Part of learning to be kind to myself is accepting that moments like this don’t have to mean everything. I am back on the running bandwagon! I am going to buy new shoes and a pedometer and a heart rate monitor..and and and and….Runaway thoughts like these are what get me in trouble and eventually become overwhelming. It becomes too much (for me) and a burden that I can’t live up to, rather than a healthy choice I make for myself because I want to.

I also know that moments like this don’t mean nothing. To suddenly be motivated after weeks of nothingness is an accomplishment. A big accomplishment. This is also part of being kind to myself. Seeing something for what it is, acknowledging it, and not giving it more or less value than it deserves.

My legs are really sore. But my heart is happy. I’ll take it!

Happy weekend to all. Thanks for your kind words and cheering along the way.

The post I didn’t mean to write, but needed to

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I intended to post a picture of the cucumbers and beans that my son & husband harvested from our garden yesterday. Then, I was going to say something cute like, “lesson learned, never give up!” Then, the hypocrisy of that post stopped me and I wrote this one instead. I had nothing to do with the garden. But, I have everything to do with this. So here it is.

“It only takes one person to change your life: You.”

“Tips for a powerful brand”

“Realize your full talent potential!”

“I just posted a ______ mile run with Map My Run!”

“I worked out this morning!”

“I nailed a run. #beastmode”

“You can be anything you want, you just have to choose.”

“Believe you can do anything at least once a day.”

As someone who wrestles with anxiety and depression, these incessant messages feel like I am being pelted with… criticism. It feels like noise. Blah, blah, blah. Talking heads with really long skinny fingers pointing at me. “You are not enough. You should be doing more.” Noise, noise, noise. The messages make me jealous, more anxious, and paralyzed by the fear of doing something wrong, trapped by perfectionism.

I haven’t blogged in too long and I have yet to make significant progress on my journal article.

I feel ashamed that I have fallen off the exercise wagon and yet to get back on. I can’t remember the last time I went for a run. I did a few 5Ks in early spring. I even ran in the mornings for about two weeks. I went running on vacation?! Then, I got sick and I stopped. Although my cold is gone, I have not fully recovered.

I know that people who tweet and post encouraging messages don’t know that I feel this way. I also know that the intent of these messages is not to make anyone feel bad or to shame anyone into exercising, or writing, or updating their LinkedIn profile. If anything, these posts serve to encourage others. And they do. I have witnessed many friends get on the exercise bandwagon, update resumes, add skills to their profiles, etc., etc., etc. And sometimes, they encourage me, too. And other times, these overtly positive messages feel threatening.

The thing with depression too is that it makes me lose sight of what I have accomplished. This weekend, I did six loads of laundry; went shopping for home décor; then came home and fixed an old nightstand with a new knob and picture frames; put my son’s artwork into a new frame and hung it in the living room; and painted an entryway in our house with a spiritual saying, with a stone cross in the middle of it (take THAT Pinterest! I came up with that idea all on my own!). Not bad! And, I did it all by myself. Doing this alone is also a huge feat for me, as my anxiety can sometimes make being alone feel like loneliness.

But, I didn’t go running. I didn’t exercise once all weekend. I didn’t call my grandmother. I texted my sister on her birthday instead of calling her. I didn’t, I didn’t. I didn’t…..Noise. Noise. Noise.

It’s not that I don’t want to work out, or write thank you notes, or clean my house. It’s not that I can’t.

It’s that the cycle of inertia, shame, and more inertia fueled by that shame, is really, really hard to break. Hitting the reset button is necessary. I know that I need to. I know that I want to. It’s just that taking the first step to actually doing it feels momentous.

This is part of me that I never knew before; I have only recently learned that how I feel had a name. Truth is, I have always wrestled with these issues. Looking back on my late 20s and early 30s, I can now see patterns of behavior. Periods of incredible activity and productivity, followed or proceeded by valleys of exhaustion and inactivity. When in the valley of depression it feels as if everything is fuzzy, like someone is shouting at me but I am under water. I can see and hear them and I want to claw my way out and break the surface but, I end up treading water instead.

I even have dreams about my depression. In my dreams, I have been wronged, shamed, or thrown under the bus by someone, almost always in a public setting. I try to speak up for myself and I open my mouth, but nothing comes out. I am shouting inside my head but, only I can hear it. The people around me are staring at me. This leads to more and more frustration and more shouting, but no results.

I also dream that I am running but nothing ever happens. My legs get shorter and my abdomen collapses like an accordion and I get physically smaller. Then, my legs start to sink into the pavement and I am no longer running, just staying in one place. Interesting that my dreams are about running. Huh.

I read once that the author J.K. Rowling struggles with depression and that the dementors in Harry Potter are her version of that struggle. This is the best image I can think of to represent depression and it’s after effects. I can feel its presence, its cold breath on my neck. There are times when I can swallow the doubts and fears, choke them back like gravel in my throat. And then, there are other times when I must embrace the darkness. Let its waves crash over me and run their course. Then, I will rise up again. Battered and bruised, but still here.

I am absolutely terrified to post this. I fear what you will think. But, I am choosing #optimism and doing it anyway.

I am learning that none of this makes me weak. This does not make me less-than. Some days are easier than others.By being vulnerable about my imperfections, my crosses, I can name them, address them, and even embrace them without shame because they make me who I am.