I returned from the trip to see Dr. Miller to turn around a few days later and head to the Foundation for Prader-Willi Research (FPWR) conference in New York. I missed the last one in San Antonio and had really wanted to get to this one but it seemed unlikely. A few last minute things fell together and I was off! All I had to do was drive to Richmond and stow away in Ali's car.
I will cover some of the research stuff tomorrow, but for today I want to explain a bit of the other stuff you take away from a conference like this. You see, on a daily basis I do not run into any one in Ayden Jane's schools or on her teams or at our church or .... who deals with PWS. We have lots of fabulous friends who are supportive, have taken the time to learn, love Ayden Jane, take the extra time it takes to chat with her sometimes, and even don't walk away when I need to talk about it. lol
When you get to the conference ALL the people there live daily with a child or grandchild with PWS. No explanations need to be given - about anything. Our kids are not the same, our journeys are not the same, our challenges are not all the same, our approaches are not even all the same but we are all working toward the same goal. We want to celebrate all our kids CAN do and work to find answers to many of the common challenges of energy balance, chronic hunger, speech delays, anxiety, social skill deficits ...
So we, parents on a mission, learn all we can and listen to long scientific presentations that make us wish we had paid more attention in science class. We rally around hope. We find ways to use our talents to support the research. We rally around hope. We celebrate the research and fundraising accomplishments of the past year. We rally around hope. We cheer the accomplishments of each others children. We rally around hope. We learn from those ahead of us on the journey and support those behind us. We rally around hope.
There is so much more, like how much fun it is to play and squeeze all the little ones but the most amazing part is that the hope we have been rallying around for the past 7 years of our journey is turning into reality. The amazing technical research is making it to the point where treatments are developed and being tried. Sure, there are lots more hurdles and so very much more we don't know and need to do, but the forward progress is astounding.
There is no way to properly say thank you to the brilliant folks and talented people that are so instrumental in this fight. Can't wait for Austin next fall!
I will cover some of the research stuff tomorrow, but for today I want to explain a bit of the other stuff you take away from a conference like this. You see, on a daily basis I do not run into any one in Ayden Jane's schools or on her teams or at our church or .... who deals with PWS. We have lots of fabulous friends who are supportive, have taken the time to learn, love Ayden Jane, take the extra time it takes to chat with her sometimes, and even don't walk away when I need to talk about it. lol
When you get to the conference ALL the people there live daily with a child or grandchild with PWS. No explanations need to be given - about anything. Our kids are not the same, our journeys are not the same, our challenges are not all the same, our approaches are not even all the same but we are all working toward the same goal. We want to celebrate all our kids CAN do and work to find answers to many of the common challenges of energy balance, chronic hunger, speech delays, anxiety, social skill deficits ...
So we, parents on a mission, learn all we can and listen to long scientific presentations that make us wish we had paid more attention in science class. We rally around hope. We find ways to use our talents to support the research. We rally around hope. We celebrate the research and fundraising accomplishments of the past year. We rally around hope. We cheer the accomplishments of each others children. We rally around hope. We learn from those ahead of us on the journey and support those behind us. We rally around hope.
There is so much more, like how much fun it is to play and squeeze all the little ones but the most amazing part is that the hope we have been rallying around for the past 7 years of our journey is turning into reality. The amazing technical research is making it to the point where treatments are developed and being tried. Sure, there are lots more hurdles and so very much more we don't know and need to do, but the forward progress is astounding.
There is no way to properly say thank you to the brilliant folks and talented people that are so instrumental in this fight. Can't wait for Austin next fall!
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