I confided with a friend of mine the other day of my anxiety going into 2014 and the goal of taking on the challenge of completing my first Ironman, Ironman Boulder, August 3, 2014. Her candid reply: "its just a thing."
I know she didn't mean much deeper than those words and in truth, it is just a thing. For me, the race itself will hopefully be about 12 hours of my life... 1 day in the grand scheme of things. My goal for the race specifically is not to qualify for the Ironman World Championships in Hawaii - if I wanted to do that, I certainly would not have picked a location like Boulder where the best triathletes, pros, former pro's, want to be pro's, and top age groupers, flock to live and train. My goal for the race day is to stay calm in the water, not panic as I enter with a couple thousand other athletes, ride strong on the bike, and take in the run and all the beauty that makes Boulder an athete's paradise... and of course, do the best I can do on that day.
Her comment, however, did not settle well with me though. For me, it is not "just a thing." August 3rd might just be a day in my life, but the 7 months of long, fatiguing training days, of attempting to hold on to a balance of time with my husband and 2 little girls, of trying to give my oldest daughter, now 8, a "normal" childhood while juggling therapy appointments, insurance headaches, and the many other daily frustrations of raising a child who at age 5-6 can not speak, nor communicate well, sleeps far less than "typical" children and can be up for hours at a time during the middle of the night for no reason that we know, is not potty trained although we have been trying, has to receive maximum assistance to feed herself -which involves sweeping and washing the kitchen floor at least 4 times/day, and whose mobility is limited so on any particular day, my back or chronically injured hip can become inflammed. For me, this "thing" is not merely my goal for a day. Crossing the finish line in Boulder and earning a finisher's medal will be a family effort. My husband is going to not only have to work full time (which in his world equals about 80 hours/week as he is in the 1st year of building his own financial planning practice), but he is also going to take on so many of the responsibilities that I help with. Life is challenging when your almost 6 year old can't have playdates, requires complete and constant attention because she doesn't understand consequences to actions, puts anything she sees in her mouth, struggles to play with her sister, much to her sister's frustration, because she doesn't understand typical play, pulls hair, and scratches and pinches often.
I know my race is also not "just a thing" for others as well. Our little Angelman community is filled with amazing parents and children who daily defy limitations of what society believes their potential is. Our children do so much more than just laugh or smile larger than life smiles when they meet someone or see a camera. Our children fight every day, sometimes in giggled frustration, as they teach us how they can communicate, how they can walk, learn to use I-pads, feed themselves, and make an impact on society. The parents of these children are nothing less than remarkable themselves. Over the past few years, I have had the honor of getting to know many of these people who I now not only share a common diagnosis with, but a family bond that is stronger than any friendship I have ever known. I cry for them when I hear of their Angels struggles with debilitating, life threatening seizures. I rejoice with happy tears when I watch a video or see a photo of their child's first steps, first word, or thought communicated.
I hope this race inspires other people to believe in something bigger than themselves. I hope it helps bring greater awareness for children with this rare genetic disorder. I hope that through this goal, I can help raise funding to support research that will ultimately cure Angelman Syndrome. I hope that my family will grow stronger in faith, in love, and together in this journey to the finish line on August 3, 2014.
I hope this is not "just a thing."
I know she didn't mean much deeper than those words and in truth, it is just a thing. For me, the race itself will hopefully be about 12 hours of my life... 1 day in the grand scheme of things. My goal for the race specifically is not to qualify for the Ironman World Championships in Hawaii - if I wanted to do that, I certainly would not have picked a location like Boulder where the best triathletes, pros, former pro's, want to be pro's, and top age groupers, flock to live and train. My goal for the race day is to stay calm in the water, not panic as I enter with a couple thousand other athletes, ride strong on the bike, and take in the run and all the beauty that makes Boulder an athete's paradise... and of course, do the best I can do on that day.
Her comment, however, did not settle well with me though. For me, it is not "just a thing." August 3rd might just be a day in my life, but the 7 months of long, fatiguing training days, of attempting to hold on to a balance of time with my husband and 2 little girls, of trying to give my oldest daughter, now 8, a "normal" childhood while juggling therapy appointments, insurance headaches, and the many other daily frustrations of raising a child who at age 5-6 can not speak, nor communicate well, sleeps far less than "typical" children and can be up for hours at a time during the middle of the night for no reason that we know, is not potty trained although we have been trying, has to receive maximum assistance to feed herself -which involves sweeping and washing the kitchen floor at least 4 times/day, and whose mobility is limited so on any particular day, my back or chronically injured hip can become inflammed. For me, this "thing" is not merely my goal for a day. Crossing the finish line in Boulder and earning a finisher's medal will be a family effort. My husband is going to not only have to work full time (which in his world equals about 80 hours/week as he is in the 1st year of building his own financial planning practice), but he is also going to take on so many of the responsibilities that I help with. Life is challenging when your almost 6 year old can't have playdates, requires complete and constant attention because she doesn't understand consequences to actions, puts anything she sees in her mouth, struggles to play with her sister, much to her sister's frustration, because she doesn't understand typical play, pulls hair, and scratches and pinches often.
I know my race is also not "just a thing" for others as well. Our little Angelman community is filled with amazing parents and children who daily defy limitations of what society believes their potential is. Our children do so much more than just laugh or smile larger than life smiles when they meet someone or see a camera. Our children fight every day, sometimes in giggled frustration, as they teach us how they can communicate, how they can walk, learn to use I-pads, feed themselves, and make an impact on society. The parents of these children are nothing less than remarkable themselves. Over the past few years, I have had the honor of getting to know many of these people who I now not only share a common diagnosis with, but a family bond that is stronger than any friendship I have ever known. I cry for them when I hear of their Angels struggles with debilitating, life threatening seizures. I rejoice with happy tears when I watch a video or see a photo of their child's first steps, first word, or thought communicated.
I hope this race inspires other people to believe in something bigger than themselves. I hope it helps bring greater awareness for children with this rare genetic disorder. I hope that through this goal, I can help raise funding to support research that will ultimately cure Angelman Syndrome. I hope that my family will grow stronger in faith, in love, and together in this journey to the finish line on August 3, 2014.
I hope this is not "just a thing."
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