Washington DC Advocate,Conference and Zen.
This month we attended the Myotonic Dystrophy Foundation Annual Conference in Washington DC. We took our Representative Michael with us. He was the youngest to visit the Capitol as advocate during this trip. He was his charming self and very well behaved.
Michael is well behaved and it is very nice to travel with him. We always get a lot of compliments. I have always said, My kids can be bears at home as long as they behave in public and Michael was an Angel and left the high pitch screech pretty much at home. THANK YOU!
They have started Phase 2 clinical trials on a drug that we are hoping will help Michael in the future. It has to go through full adult testing before would be tried on children. Hoping for a successful future.
We basically ran through DC, seeing bits of everything. I LOVE this city! I don't say that about most any city but I really did like DC. I haven't been anywhere in a long time where I could sit on a park bench and in 5 minutes, hear more than 5 different languages. This was Michael's first time and he too spent a great deal of time smiling and laughing at all the different people, sounds, colors, and runners. The runners were hard though for me. When runners ran by, Michael laughed and clapped. I hope that one day he does. It was nice just being in the world and out of our town that I still love to come home to. We need adventures.
The main reason for me to go this trip was to meet others with children like Michael. Only one other person brought their toddler with them. Those that had planned to come, canceled for various important reasons.
Michael meet Zen.
Stand, stare at each other. Look around. Look at each other again. Communicate via Zen waves our G parents can't hear. Ready?
Dash around the adult blocking the carousel door to see if one of us can escape. "You go that way. I will try this Darn, we got caught and I got set down on the couch." It was our first meeting but only the first. See you in January, friend!
Zen lives about 45 minutes from family in CA so I really plan to make sure we can get together when we go down to visit.
One of the hardest parts for me this trip was meeting the young adults with Juvenile Onset and touch their pain,depression and dreams. I so hope that those dreams are realized. They are so strong and brave and smile despite the knowledge they have of what they are up against. So many times people make comments to parents with children with different needs. Comments about our burdens, or that we are heroes for taking on what we have. I know people only mean it in the nicest way but we are not heroes and our children are not burdens or problems. They are the lesson that has showed us how precious and fragile life is. Every person with this disease is my teacher. Every person with this disease reminds me how LUCKY I am to be healthy and to have lived as long as I have already. Every person with this disease gives me a glimpse into the future and what I need to do for Michael. Helps me to understand and learn, from what they share. Thank you for sharing. Thank you for helping me understand. Thank you for giving me tools I will need. Thank you for being you. Truly I have been blessed to be part of a community I wish didn't exist but does. A community hoping for a light, a rope, a cure.
Social Media is great. The information age is right. Michael is getting new "braces" for his feet and ankles made out of silicon. One of the British Mums, who is a nurse, showed me via email what they are experimenting with there. She got me in touch with the company and a representative that is setting me up with one of our clinics near, that is helping them branch to the USA. Luckily I have a doctor that is proactive. Where there is a need, there is a way. We will learn this together and hopefully make it easier for those that come after as well.
Michael is well behaved and it is very nice to travel with him. We always get a lot of compliments. I have always said, My kids can be bears at home as long as they behave in public and Michael was an Angel and left the high pitch screech pretty much at home. THANK YOU!
They have started Phase 2 clinical trials on a drug that we are hoping will help Michael in the future. It has to go through full adult testing before would be tried on children. Hoping for a successful future.
We basically ran through DC, seeing bits of everything. I LOVE this city! I don't say that about most any city but I really did like DC. I haven't been anywhere in a long time where I could sit on a park bench and in 5 minutes, hear more than 5 different languages. This was Michael's first time and he too spent a great deal of time smiling and laughing at all the different people, sounds, colors, and runners. The runners were hard though for me. When runners ran by, Michael laughed and clapped. I hope that one day he does. It was nice just being in the world and out of our town that I still love to come home to. We need adventures.
The main reason for me to go this trip was to meet others with children like Michael. Only one other person brought their toddler with them. Those that had planned to come, canceled for various important reasons.
Michael meet Zen.
Stand, stare at each other. Look around. Look at each other again. Communicate via Zen waves our G parents can't hear. Ready?
Dash around the adult blocking the carousel door to see if one of us can escape. "You go that way. I will try this Darn, we got caught and I got set down on the couch." It was our first meeting but only the first. See you in January, friend!
Zen lives about 45 minutes from family in CA so I really plan to make sure we can get together when we go down to visit.
One of the hardest parts for me this trip was meeting the young adults with Juvenile Onset and touch their pain,depression and dreams. I so hope that those dreams are realized. They are so strong and brave and smile despite the knowledge they have of what they are up against. So many times people make comments to parents with children with different needs. Comments about our burdens, or that we are heroes for taking on what we have. I know people only mean it in the nicest way but we are not heroes and our children are not burdens or problems. They are the lesson that has showed us how precious and fragile life is. Every person with this disease is my teacher. Every person with this disease reminds me how LUCKY I am to be healthy and to have lived as long as I have already. Every person with this disease gives me a glimpse into the future and what I need to do for Michael. Helps me to understand and learn, from what they share. Thank you for sharing. Thank you for helping me understand. Thank you for giving me tools I will need. Thank you for being you. Truly I have been blessed to be part of a community I wish didn't exist but does. A community hoping for a light, a rope, a cure.
Social Media is great. The information age is right. Michael is getting new "braces" for his feet and ankles made out of silicon. One of the British Mums, who is a nurse, showed me via email what they are experimenting with there. She got me in touch with the company and a representative that is setting me up with one of our clinics near, that is helping them branch to the USA. Luckily I have a doctor that is proactive. Where there is a need, there is a way. We will learn this together and hopefully make it easier for those that come after as well.
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