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| Senator Obama in 2008 |
It has been an extraordinary 10 days, 10 days I wish would never end. Everything went right, everything fell into place. My son’s wish to meet the President through the Make-A-Wish Foundation had come through. It seemed so unreal the fact that next week, we were headed to the White House for a private meeting with President Barack Obama.
My busy week began getting in the way of the fleeting moments I had day dreaming about meeting the President, dreaming of being in his presence and the conversation I was going to have with him. With only three days until we were to leave, I began to realize that I had to leave my to-do list behind, and to really be in the present moment. After all, it was for only three more days that I could say, “I have an appointment with the President.”
I wanted the days to go slowly, to delay the gratification of meeting someone who has truly had an impact on my life, with his inspiring words of hope, with his powerful speeches, and the way he conducts himself during interviews, his non reactive answers, his calmness, his friendliness, his intelligence.
How does one prepare to meet President Barack Obama?
I began looking over the piles of transcripts of his speeches I had kept from his presidency campaign three years ago, marked up by a scattering of my yellow highlighter across the pages. It was his message of hope, hope in the face of difficulty, hope in the face of adversity, choosing hope over fear, that inspired me the most. It was hope he had given me as a mother on my journey with my son suffering from Duchenne.
I identified with his message, ours being the generation that stood for change, compassion for each other, marching straight forward with courage and purpose. It was a powerful message.
I went up to the bookstore with my daughter to buy a new copy of Dreams of My Father, that I would ask him to sign. When I read his book sometime ago, I saw parallels with my own life. Like myself, Obama had a mixed heritage, and had also experienced living in different countries. Whilst he spent his childhood in Indonesia, I spent mine in neighboring Malaysia, just across the water. Obama also had a pet ape when he was a child and so did I.
Like myself, when he was younger, Obama also experienced confusion in identifying with a race or culture, which is often the case with children from multi-racial parents.
I pondered over questions I would ask him, and advice I would seek.
As I self reflected, I thought about my three children, the impact this visit will have on their lives. I thought about my son, whose wish it was. I thought about the moment the President would reach out to shake my son’s hand, only to realize that my son is too weak to lift it. At that moment I know there will be a connection. We will connect on a personal level with the President, as a parent, as a father, as a brother.
This is a private visit but in a way it is also official. My son is meeting the President, not only as a fun 18-year-old who loves science and computers, but also as an ambassador for Duchenne.
The President will know all about the seriousness and the devastation of Duchenne, and this may make a difference.
Just awesome!!! I cried when I read the part about your son not being able to lift his hand to shake the president’s. My son is 15 1/2 and can still get his hand up, but it is a struggle for him. When he waves he just puts his elbow on his leg and his arm is them about level with his face and he waves. Breaks my heart watching him try to get it up. Thank-you soooo much for sharing this incredible experience with all of us. :]
Diane Keeley.
Who was this for again? “I have a meeting with the President?” Wouldn’t it be, “my son has a meeting with the President”? Seems a bit exploitive…and I have a son with muscular dystrophy. I’m sure your heart is in the right place–it’s the way your writing comes across that seems a bit self-centered. Hope the President enjoys his time with your son.
Wow, Anonymous. Way to try and make someone feel bad. Don’t you think we should all give each other more grace than that given the fact that we should understand the pain that we’re all going through?
I completely understand the way it’s written. Duchenne affects the whole family in profound ways, and given the fact that we just got back from the San Diego zoo on my son’s make a wish trip, it was important to us that our whole family enjoyed the experience – and the make a wish people, in fact, felt that was important as well, given the attention they paid to the other children in our family.
I just wonder what you’re accomplishing by scolding someone like that.
Wow D, what an amazing opportunity, and a better ambassador to meet the president, they could not have chosen.
Dear First Anonymous,
I wish you grace and humility, and I send my own anonymous kind wishes to your family and son.
Cath….you are an inspiration to those of us that stand in your shoes with respect to our sons……my son is almost nine and stopped walking just before his 8th birthday last year My son, like all our boys, is beautiful, bright and ambitious and his wish to to BE the president of the US one day….I think your family’s visit to the White House is a noble one and as you said a way for others to familiarize themselves with this devastating disease and get into action about finding a cure or getting out of the way of people that are working towards a better way to live with Duchenne. Thank you for sharing….your love for life is truly an inspiration to me….thank you
Dear Cath,
You write from the heart and it is inspiring to read your thoughts that are generated therefrom. Your life is as much intwined with Dusty’s as his life is with yours. As such, his wishes are essentially yours. And his meeting with the President, so much yours as well. Your story comes across with all the ringings of a mother filled with hope and excitement, something you so deserve. Enjoy your trip and God Bless.
Dear First Anonymous,
Dusty is an ambassador for Duchenne.Having a Duchenne child, you of all people should understand this. Instead, your pompous and arrogant attitude leads you to pour scorn over the writer’s style and usage of words in her blog. Whats more important here is the message she conveys. NOT your jealous and envious arrogance. Remember that your son too benefits from any positive outcome this visit brings.