Do you remember after school specials or the this is your brain on drugs commercials? I'm sure if you were born at some point in the 70's or 80's you know what I am talking about. they were silly we still make fun of them but they were effective. Not because they were groundbreaking but because they opened up dialogue. They put a human spin on very real but pushed under the rug issues.
Same with HIV and AIDS. Molly Ringwald did a TV movie, Tom Hanks did Philadelphia, and Stone died on General Hospital. Actors wore red ribbons and the world changed because of awareness. I know this disease doesnt have a cure yet but people are living long, full lives because people talked about it, people demanded research, and progress was made.
I was almost 4 years old when my Grandpa passed away. He had cancer. when I was 4 there wasn't a lot to do. There wasn't early detection like there is now and my Grandpa had no chance. That isnt the case anymore. Don't misunderstand I know people don't always survive, I know the treatments are terrible but I also know that innovation is happening all the time. I know that I buy pink m&m's. I put money in the cancer research boxes and there are break throughs. I know survivors.
This is all i want. i want my son to have a chance no matter how slim. i want ribbons and stand up to Duchenne primetime TV specials. Why is it that a lot of trained Drs and nurses do not know the difference between MD and MS? Why is the MDA telethon regulated to a few hours on labor day weekend on 1 network. Ask yourself how this disease can afflict 1 in 3600 boys and you didnt know a thing about it until my story. I dont mean that bad i was pretty clueless myself.
My child is battling this disease w/o a tool. There is research that looks promising. This is my child that is not enough. I am asking you today to help me. To raise your voice to demand answers. Talk to someone about this disease. Tell them about my child and how his future is threatened. Awareness leads to money and research.
i am not asking anyone for money i just want people to talk about this. Children cannot advocate for themselves. They can't donate money, and they are defenseless. Don't talk about this because of me or my family, talk about it so this isn't your story or your grandchilds story. This doesn't just happen to other people this happens to anyone.
Thursday, November 15, 2012
Sunday, November 4, 2012
To my son
You turned 6 today. I can't beleive it has been 6 years since came into this world impatient and using your words "Ready to meet me." If you ever see this blog I am sure you will see my posts about my broken heart and how angry or sad i am. I want you to know that it never comes from a place of regret,
Even if I had found out in the beginning that you would have ths disease nothing and I mean nothing would have made me not want to meet you. I have hope, Robbie, that there are real breakthroughs on the horizon.
You have things harder then me but you never complain. You might have to do something a little differently but that never stops you from accomplishing a task. You don't yet know what an awesome trait that is. You don't realize how far you will go in life because of it.
You have in many ways united mine and daddy's family into our family. What a gift that is for all of us. I never had that growing up and it was something I desperatly wanted for you and your sisters. Now when our house is full w/ our family it brings me so much joy. This is something you and i share this need for family around us. You will see as the years go by what a gift is to be surrounded by people who love you and will catch you when you fall.
Your road might be hard and as much as i want it to be different i can't change this. I can do everything in my power to give you the tools to be independent. I will never give up on you. I really don't know why this is happening to you. People tell me there is a plan but I don't know how much stock I put in that. i do know there is a God. i just don't know if he really plans things like this.
It's very important to me that you find your own faith and your own way to beleive. We all get there differently. I really don't have all the answers and I want you to know a secret...No one has all the answers. People who claim they do really don't have a place n your life.Life is such a complicated funny thing I just don't think the answers are simple but who knows maybe you will think they are and thats fine too.
Your values, the things that you choose to put out in the world that is what is important. There is strength in empathy. Have the courage to stick by your values. trust yourself and your instincts and you will be okay. Robbie never let this disease define who you are. You are so much more then DMD.
You are my son, the little boy that loves cowboys and his family. The child that kisses my head when I have a headache, and questions everything. Happy 6th Birthday Robbie!
Even if I had found out in the beginning that you would have ths disease nothing and I mean nothing would have made me not want to meet you. I have hope, Robbie, that there are real breakthroughs on the horizon.
You have things harder then me but you never complain. You might have to do something a little differently but that never stops you from accomplishing a task. You don't yet know what an awesome trait that is. You don't realize how far you will go in life because of it.
You have in many ways united mine and daddy's family into our family. What a gift that is for all of us. I never had that growing up and it was something I desperatly wanted for you and your sisters. Now when our house is full w/ our family it brings me so much joy. This is something you and i share this need for family around us. You will see as the years go by what a gift is to be surrounded by people who love you and will catch you when you fall.
Your road might be hard and as much as i want it to be different i can't change this. I can do everything in my power to give you the tools to be independent. I will never give up on you. I really don't know why this is happening to you. People tell me there is a plan but I don't know how much stock I put in that. i do know there is a God. i just don't know if he really plans things like this.
It's very important to me that you find your own faith and your own way to beleive. We all get there differently. I really don't have all the answers and I want you to know a secret...No one has all the answers. People who claim they do really don't have a place n your life.Life is such a complicated funny thing I just don't think the answers are simple but who knows maybe you will think they are and thats fine too.
Your values, the things that you choose to put out in the world that is what is important. There is strength in empathy. Have the courage to stick by your values. trust yourself and your instincts and you will be okay. Robbie never let this disease define who you are. You are so much more then DMD.
You are my son, the little boy that loves cowboys and his family. The child that kisses my head when I have a headache, and questions everything. Happy 6th Birthday Robbie!
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