This year we did a different Great Strides walk than usual so it landed earlier in the year for us. Our walk was on April 7th! We had barely started planning fundraising efforts so that is why you haven’t seen any yet this year. We do have a few things planned so I will post about them in the upcoming months.
Little Miss Khaos was asked to be the walk Ambassador this year! She was so super excited to talk on stage and did great! We have had weird weather this spring, like most of the country, so while Friday and Sunday were in the 80s, Saturday was a high of 39!! It caused a low turn out for the walk but we had fun anyways. She even ate a SNOW CONE, yes a freezing ice, snow cone in the freezing cold. The CFF Chapter gifted her two awesome outfits for Theodora, and she waited in the cold for a balloon animal. She is dedicated guys.
I forgot to take what I was going to say at the walk, so I wanted to post it here. As most know, Little Miss has great health and this is abnormal for most with Cystic Fibrosis. Due to her great health, each year that we walk, I make sure to walk in honor of someone that has recently passed on from CF. Since the day we found out I have followed many journeys online, and felt connected to so many that suffer with Cystic Fibrosis. These deaths affect me deeply, as I know our own journey will eventually lead down less pleasant roads.
I wrote this a month ago, on March 8th. A day that was dark for the Cystic Fibrosis online community. I apologize in advance if this gets me emotional.
I sit here overwhelmed with sadness from the loss of a little girl I’ve never met and only discovered last week. I would have never known about this little girls journey, and heroic battle if it hadn’t been for the monster that connects us. If you are apart of the CF online community then you probably heard of Braylin, the 8 year old girl who was so full of life, you could see her glow in every photo posted of her. She lost her battle with the monster abruptly tonight, and the CF online community weeps with her family. Her beautiful smiling face fills my timeline, bringing fresh tears to my eyes with each post.
I can’t help but think of my own lively 6 year old battling the same monster, and wonder when might we be in this family’s position. Making the hard decisions that no parent should have to face. Is there anything we should be doing different, how can we provide her with better armor, or a sharper sword? As parents of a CF child, we do everything right, we follow the doctors, the online community, and still this monster takes lives.
If it weren’t for this monster, I wouldn’t have met some of the strongest women I know. I would have never discovered my own strength, and perseverance. But even so, I would give it all up and live in blissful ignorance, for no child to ever have to face this monster. This monster that isolates us, and our children.
Today also happens to be the day Audrey asked her to be the ambassador for this walk. As I spoke about this, she lit up with excitement because she loves to be in the spotlight. As we discussed the walk and what would happen, she asked why we weren’t attending the zoo walk in Austin. (She’s our little zoo-ologist) I told her that we needed to get to know the CF community in our area, and she reminded me of the 6 foot rule. She needed reassurance that no one with CF would get too close to her. She said that it made her sad, because she wanted to high five every kid with CF. Something so simple that the world takes for granted but my 6 year old has to be worried about. Human contact with someone just like them. Someone they could bond with and relate to, but only with a keyboard between them.
I hate this monster, I hate not knowing what the future holds for our battle. But I know the solution, we walk. We fundraise, and we trust in the scientists that are working on a the perfect armor for our kids to defeat the monster. One day in our lifetime, we will see a cure for Cystic Fibrosis.
So Braylin, today we walk for you and your family. For the heartache they are enduring because of this monster we call Cystic Fibrosis.