Y’all, I’m going to be completely honest for a second. No sugar coating, no pretending, no nothing. Are you ready for this truth bomb?
I have absolutely no idea what I’m doing.
Like none. Zip. Zero. Nada. We’re coming up on my 5 year anniversary of being diagnosed with a disease that was supposed to kill me already. Um, what? So at 27 I was sitting in a room, by myself, being told that I have a disease for which there is no known cure and an average lifespan of 2-5 years. Now at 32, I’m married to a beautiful man I “had imported just for me”, a dog and cat mama, shampoo dealer with a disease that is determined to get the best of me. Well, not today it’s not.
I do know, without a doubt, that I was not given the name Sunny and this personality to just sit at home and cry over ALS. I’ve got entirely too much to do, too many necks to hug, smooches to share, and pALS to love on. God’s got the vision, it’s just my job to show up. One way I stay true to the vision is by attending events, like Cowtown Affair and Walk to Defeat ALS. The stories of these warriors shine at events, and it’s powerful to be in their presence. Another way I get to do that is by attending Multidisciplinary Clinic at Texas Neurology. Those visits and the hugs from fellow pALS is good for the soul.
My favorite way to do follow God’s vision for my life is to combine two of my favorite hobbies: traveling and talking to strangers. Many trips to DC and meeting in local legislative offices allows me to be a face for the disease while our decision makers are in office. It’s very powerful. Last year, Sister Carlie and I got to do both of those things – though she would quickly tell you that neither are her favorite – in Glasgow, Scotland for the International Symposium on ALS/MND. It truly was an experience of a lifetime. This year, we’re heading a little farther south and east/west (not sure which direction we’re flying) to Perth, Australia. Actually, we leave in less than a month. I’d rather be sunburnt than cold, always, so hitting the Australian coast during their summer is A-OK in my book. Carlie and I are also excited to welcome my favorite chiropractor and yours, Dr. Bronson Lester, to our worldly travels.
When you are faithful to the vision God makes a provision every step of the way.
Provisions are falling into place for this amazing opportunity. We are still fundraising to offset the costs associated with this trip. We are beyond humbled by the generosity of our friends, family, and associations. This level of advocacy and awareness would not be capable without your help, and we appreciate you.
I may have ALS but it most certainly does not have me.
These trips come with a lot of out of pocket costs - like airfare, hotel stay outside of the symposium, misc. travel expenses, etc. - so we are graciously asking for support from our friends and family to help offset the financial side of this work. We appreciate any support you're able and willing to provide. We love each of you very, vert much for your continued support of our patient advocacy efforts.