Choosing Joy through the Storm

 We are still in a season of not the greatest medical stability, but through it all my kids continue to find moments of joy and light. I am always proud of my kids, but never more so than when they continue to shine despite not feeling 100%.

My sweet Alex, my bug...He is so easy to love and so quick to step up for others even when he isn't feeling great. Our relationship is so very special and comes from walking side by side through incredibly hard circumstances for most of his 21 years. We know each other and can read each other better than anyone else in our lives. And best of all we truly enjoy each other's company. We laugh so much when we are together. It is so special to watch him live a life we never dreamed possible and he never takes one moment for granted. He is having a great semester at school. He loves his classes and professors. He is the co-captain of the JV Esports team and a sub on the varsity team as well as commentating the varsity matches. He has been playing some pickleball with friends. And is double majoring in Psychology and History in the honors program. He was also able to enjoy lunch and hear Nic Vujicic speak at school. To say he lives his life to the fullest is an understatement. We have also found an amazing PCP who specializes in transitioning complex medical kids to the adult side medically. We had our first appointment this week and are both feeling so lucky to find a partner to advocate for Alex and make sure he continues to thrive. He has several tests and infusions this week as we make good use of his time during Fall Break!

Alex and Nic

Alex's jersey

Poor Maddy is still struggling a bit. Unfortunately the special urine test that we had hoped to guide treatment and a path to feeling better did not give clear cut answers. She continues to be extremely fatigued as her Kidneys struggle to work properly. After missing all dance and more than half of her rides for several weeks, she has tried to jump back in this week. My heart is sad for her as she is struggling to participate in her favorite activities, but she is adamant she will continue to push through. I treasure the smiles when she is at the barn and her best boy makes her forget how bad she feels even if she can't last as long as she'd like. And in true fashion both Hart and Quigley must be sensing she isn't feeling her best because they have both been extra snuggly with her! 

We did have one exciting development this week...after communicating for several months with Team Impact (TI matches Children with serious illness with college sports teams) she was signed on to the TCU Cheerleading team. While she had initially hoped to be matched with an equestrian team, she is actually thrilled to be with the cheerleading team. TCU Cheer has 41 cheerleaders, but she has a small group of 6-7 that are her group. We attended their practice on Tuesday and she loved every minute. She didn't participate just got to know them and watch, but is hoping her girls teach her a cheer next time! She even has a group chat going with them! Later this week maddy and i are leaving for the biggest horse show in the country, the All American Quarter Horse Congress. She has been looking forward to it for a year. Please pray she feels good and can enjoy her time!

Thank you for loving our family!

Ali