Tuesday, July 7, 2015

Cure SMA Conference - Day 3

Day 3

Our third day at the conference was similar to day 2 in that we got to choose between several workshops to attend. We had three different workshop times that day. Beau and I split up in order to gain as much information from as many different workshops as possible. I attended a nutrition course for oral feeders, a yoga therapy class, and a physical therapy class while Beau went to a breathing class, an orthopedic class, and toy adaptation. Beau actually stayed in the "toy adaptation" class for over an hour past the time of the workshop to help other families put their toy together. I was a proud wife that day...he was definitely using his gifts. That's conference for you though, we all come together to help one another. To join together as a family and work toward a common goal. That is the mindset of the Cure SMA conference.

After the workshops were completed we had the opportunity to sit in a "Researcher Q & A". This is where the researchers come sit on a panel and explain what their research is focused on, where they are currently in their research, and then they allowed the families to ask them questions. This was very interesting to me because I learned that we are closer now than we have ever been to a treatment or maybe even a cure for this disease! What an amazing day that will be!!

The day finished off with a PJ party and movie night. We were invited to wear comfy pj's and grab some pillows, blankets, and snacks and watch a movie (this year it was Bug's Life). This is just more time to sort of "hang out" with the other families. Steele enjoys any activity that includes popcorn, so he was completely content.

Overall, the conference was better than great. I know I have repeated that over and over again, but we live with SMA everyday. SMA is not great everyday, in fact, it really sucks a lot of the time. It is so hard as parents to watch your child struggle. Don't get me wrong, Steele is joyful most of the time and that really helps. It just doesn't seem fair that when he falls he can't always get back up. Its not fair that it is so hard to feed himself with eating utensils- so hard in fact that at almost 3 years old I'm still feeding him 95% of the time. I hate that nagging voice in my head that worries about what Steele's future will look like- what will he be able to do? What won't he be able to do? Will he get scoliosis? Will he need surgery? Will he always be able to eat by mouth? Will SMA take him from me? The fears could go on and on. So, when we get to go enjoy some aspect of SMA, we do it wholeheartedly. In most cases, you don't get to choose your family. That's how it is with our SMA family...its not a family we chose but chose us. I am proud of my son everyday for how he battles, how he has chosen to go through this life.... JOYFULLY. The Lord is using him to minister to me. We can't live in fear everyday, we weren't created to. We will celebrate each day we are gifted together.

When the conference was done we decided to extend our stay and take a couple days to relax and unwind our minds after all that had gone on that weekend. We had such a great time, but I couldn't help but feel like something was a little "off". For whatever reason I just didn't have the same feeling when we walked into and through our beautiful hotel. Then, on the side of one of the buildings downtown, I saw this quote by Walt Disney- "You can design and create, and build the most wonderful place in the world. But it takes people to make the dream a reality". And it hit me. That's what was off. When the families left the conference the feeling of the conference left too. We were right back to our normal which is to not be normal- if that makes sense. Needless to say we can not wait for next year's conference.

Giving Thanks

It wouldn't be right if I didn't stop and thank my dad, who generously provided this trip for our family. Our financial situation can get pretty sticky sometimes with all of the medical bills and necessities we pay for on a regular basis. So without his help, we wouldn't have been able to go on this trip and have these experiences. Thank You Dad!! We love you.

And once again I would like to thank you- whoever you are reading this and for whatever reason it is you read- we are thankful. It is our prayer that this blog would not only educate others about SMA, but also to encourage others in their journey. I pray that our life and testimony would encourage others to keep going, keep fighting, to love the Lord with all their hearts, and to do all things with JOY and THANKS :)  Always be full of joy in the Lord. I say it again-rejoice! Philippians 4:4

God Bless!!!

More Pictures

PJ party and movie night

Steele making friends at the conference


Riding Roller Coasters at Worlds of Fun Park

Union Station

Dave and Buster's Arcade Fun!

Kansas City Zoo

Snacking while riding the train at the zoo




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