Have you ever been in the process of doing something and then look up at the time and suddenly realize that it’s way later than you thought it was? That is how the past year has gone for me. I didn’t think it had been quite so long since my last post, but there you go. I am not good at these kinds of things. Schedule posts? Who needs schedules, schedules are for losers! Just kidding! If anyone loves a good schedule, it is me; I have a weird love of office supplies and organizing. I love to make them and then not follow them and feel guilty about it.

In the last year, I have spent a lot of time traveling and trying to enjoy life as much as possible. I went with my parents and kids across the country by car, which has been on my and my mom’s bucket list for a while. We took three weeks and drove all over the place. It was an amazing, unforgettable trip that I will treasure for the rest of my life, and while I hope that my kids will retain some portion of those memories, I am aware they might not. I will remember going with them and seeing the awe and wonder (and yes, occasionally boredom) on their faces, and that makes it worth it to me. I read somewhere that seeing and experiencing new things is mentally stimulating for kids and helps them expand their horizons even at such an early age, so that is what I hope to give them in the long run. It was incredible to be able to do a trip like that with my parents, and it was such a good bonding experience for the three of us, I really feel that it brought us closer. It brought us several arguments as well after so many days of cramped quarters, but it was well worth the stress in the end. I would highly recommend it to anyone who is considering a trip of that kind but is unsure of whether they can do it. You can do it, but you have to remember it is more about the journey than the destination. We had a lot of things on our list that we wanted to see while we drove out, and with two little kids we couldn’t be in the car all the time, so there were a few things that we didn’t make it to or physically couldn’t get to in a reasonable amount of time. While not making some of those things was disappointing, it gave us time to appreciate the ones we were able to see and also brought us to a few unexpected places that we enjoyed very much. Getting to see these awe-inspiring places with my mom, who had also never seen many of the things we saw, was very special to me. I will never forget being able to get out of the car and just appreciate the beauty around us, taking pictures together and marveling over everything together. We could have never done the trip without Dad, though, since he drove nearly the entire way by himself, over tiny, twisting mountaintop roads, through deserts, plains, plateaus, and Kansas. Dad also planned and booked the entire trip, which was no small feat. He had me help him plan a couple of small portions and those by themselves required a fair bit of researching. I am so thankful to have been able to do this trip with my mom, dad, and kids and I will never forget it.

This year I was trying to be more actively engaged in the community, so I am still volunteering with my local humane society and I helped my dad plan the HD Gala that we had in November. I had never planned a Gala before, so it was an eye-opening experience for me. I was not as involved or as active as I wanted to be, but I am glad that I was part of it. The event was spectacular (due largely in part to my father) and it was a lot of fun. The music was good, and the magician surpassed my expectations. Dad is in the process of planning a learning event in May for Huntington’s Disease Awareness Month, our Walk for Hope in June, and another Gala in September. Be sure to check those events out! Additionally, the Huntington’s Disease Conference will be held in Schaumburg, Illinois this year from June 22nd-24th. If you are looking for an event with more information about Huntington’s Disease, the latest cutting edge research, and awesome people who share an interest in this disease and combating it, this event is for you! I am going to this convention because there is so much good information that is given about HD and not just what is being done to cure it, but also research on different ways that it manifests, signs to look out for, studies that are being done; there is so much to learn about and I am excited to understand this disease a little better than I do now. I also can’t wait to meet more people who understand what I am talking about and what my family is going through. Most people sympathize, but they don’t really understand; that simple step makes a world of difference. If traveling to Illinois is not feasible for you and your family many of the lectures are available online after the event, so you can still participate in this event! You will miss all of the dances and dinners but you will gain the science and history of it which, arguably, is more important.

That is all I have for this post. My schedule is slightly more stable now, so hopefully these posts will be a more regular thing. It is hard to write about it when it is such a slow progression. It isn’t as though day to day things are dramatically different, so I am often unsure what to say about it. We all try to live with a sense of hope and grace each day. Sometimes that is easier said than done, but we continue to try. We are coping as well as we can and we are continuing to move forward. There is not much else that we can do; there is no cure, there is no backing down from this, so we must fight.

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