S(CAR) 2019

Hello again friends! It has certainly been awhile since I have been able to entertain the idea of completing a long distance swimming event… a lot has happened in my life since then!

In June 2017 my daughter, Aubrey was born. It has been a joyous 21 months! Filled with laughter, learning and letting go. Letting go of long-held beliefs on what it means to be a parent. Letting go of uninterrupted sleep. Letting go of expectations. Letting go of personal time… and finally, learning that it’s OK to reclaim some of these things, even with a young child.

I decided it was time to reclaim my time in the pool. I made a commitment to swim twice a week in the early mornings with the masters group at Phoenix Swim Club (paying the drop in fee). This was about two months ago… I have only been able to maintain this commitment for one week at a time so far. Surprisingly, I’m not discouraged at all, in fact I am happy that I’m making progress and in the pool at least once a week! Because of my limited time to swim these days, I decided it would be against my better judgement to attempt the full four day SCAR event this year… although mental training for an event like this is critical, I think in this case, mental toughness wouldn’t quite cut it. TBH I think swimming twice a week is still on the light side, oh well!

Now that I have an event to train for, I am eager to start fundraising for FARA! I am in the process of getting my donation page set up for Team Juneau Joneses. Since it has been a couple years since I have done anything with this, I believe our running total has been lost… this is 100% OK because it doesn’t really matter. What matters most is that we continue to work towards a cure for FA.

As many of you know, I have three brothers, two of them have Friedreich’s Ataxia. Ryan is now 31 and Owen is 25. Both of them are living with my parents in Juneau, AK. Ryan has completely lost his hearing and vision, but can communicate with a select number of people who are around him most. He also developed a way to use morse code, (yes MORSE CODE) to communicate with those around him. His right shoulder = dot / his left shoulder = dash. He memorized the code a few summers ago with the help of various care providers. Listen, this guy is one smart cookie. He has lost control of his muscles, eyes, ears, etc and still refuses to give up. He developed this completely original way to communicate and while it is extremely tedious (tapping numerous times for each letter of each word of each sentence…) it provides such joy to be able to have a conversation, or share a thought with him.

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