Saturday, June 27, 2015

Cure SMA Conference 2015 - Day 1

Wow! I just had to start this post with that word. "WOW" pretty much describes our week in Kansas City, Missouri perfectly. We had an amazing time with our SMA family. I think it would be best to break up our posts into days 1, 2, and 3 of the conference just to limit the length of each post. There is so much to say about each day. So let's get started!

Day 1
We decided that we would drive to the conference this year, so after a 9 hour trek we were pretty excited to pull into the hotel. When we pulled up we noticed that almost the entire line of vehicles were wheelchair accessible. If there was any doubt that we were in the right place that pretty much eliminated it. The hotel was absolutely beautiful. You walk in and hear the sound of falling water. On the second level of the lobby area was a beautiful waterfall. It didn't take Steele long to spot it, and he wanted to make a beeline right to it. When we went to check in we were informed that due to the heavy traffic of people leaving from the night before and all of the people coming in for the conference our room was not quite ready. At the time it seemed a little frustrating because we happened to arrive right smack in the middle of Steele's nap time and I knew he needed to get his rest in order to enjoy the rest of the evenings activities. Looking back, however, I am thankful for that delay because it led to more networking with other families that were in the hotel for the same reason we were. Steele had a blast meeting other kids in chairs and showing off his fancy tricks (which is mostly spinning in a circle). I will talk more about this later, but the feeling in the room was just positive and upbeat. I came to find out later that it had nothing to do with the hotel, and everything to do with the people that traveled far and wide to be there.

So a couple hours later we got a room and let Steele rest for his big "meet and greet" night. When he woke up we got him ready and went to Fritz's for dinner. Fritz's is a really cute train restaurant. You order your food from a phone at your table and a train that runs on a track around the room delivers your food. For those that don't know a few of Steele's favorite things are Buzz Lightyear, dinosaurs, and trains. He was elated to be eating dinner there.

At the restaurant we met up with Steele's physical therapist and his ATP (assistive technology provider) who also attended the conference. Folks I could go on and on about this. The fact that they took time out of their schedules, and spent their own money to attend this conference so that they could learn more about SMA in order to serve not only Steele but other clients they may currently have or encounter in their future is INCREDIBLE. You don't run across people like that everyday. They always go above and beyond.. and I don't believe that is special treatment we are getting from them.. its for all of their clients. Again, INCREDIBLE. We are so grateful for them.

So with full tummies and excited mindsets we went to the meet and greet and family fun fest. In the middle of the room a track was outlined on the floor. That is where they held the wheel chair race. This is something they do every year. Its where the doctors and researchers that are working hard to find a cure meet up with the people affected with SMA and race. I love this because the researchers get to meet and see the people they are working to help. To me, it makes it more personal. Its not just an experiment with mice in a lab. They are working to change the lives of so many that are affected with this disease that just robs and takes. I appreciate the work they are doing. I pray that their hard work pays off in the form of a treatment or cure soon. As of now, there are no treatments or cures for SMA. This year alone, over 70 people have lost their lives to SMA. Please join me in praying over the researchers who are working tirelessly to find that treatment or cure. And also pray for the families that have lost a loved one already. Its hard. Really hard. But when you can get together with others that are fighting the same fight and link arms and support one another it gives you a renewed sense of strength and hope. Its refreshing. Its motivating.

Around the rest of the room are carnival-type games. Volunteers are at each station and the kids can go play a game and win a prize. Many of the games involve throwing an item at another item-another thing that's high up there on Steele's priority list. So Steele made his rounds at the game stations and we had time to network with other families. Some were families we met at last years conference. Some were people we had only "met" via facebook support groups, but they all felt like family. It was a great start to our second SMA conference.

Here are a few pictures from day one!

Yay!! We made it!

Waterfall in hotel

Waiting for the train to pass at Fritz's Restaurant

Family Fun Fest

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