Wyatt has always been active in strength based activities- climbing, monkey bars, playgrounds, etc. But, walking & running have always been difficult. Even biking is much better tolerated than walking and running… 

This extra push from the cardio encouraged me to get Wyatt signed up for something this year. I knew soccer was too much running. We thought through some other things & he ended up picking t-ball bc he wanted his daddy to be out there with him coaching. 🥰 He said he was nervous to make new friends, but he wanted to try. 

I’d say we went into practice way unprepared. He had the wrong handed glove & refused to change out of a thick collared short sleeve shirt. But, we all made it to practice. I really didn’t anticipate this… but, I more or less has a mini panic attack and was on the brink of tears the entire time. Soooo many emotions about starting a “real sport” with a coach and teammates. When the coach told them to each run the bases one by one, it took everything I had to keep myself from running to the field to tell the coach …Wyatt has half a heart and he cannot run the bases… I stayed put and through shallow breaths, clench jaw and watery eyes… I watched him run the bases. He was winded, but he did it. 

He made it through the rest of the practice too. I watched him proudly as he asked to leave outfield to go to get water multiple times. And, he came to see me twice in the bleachers for a protein snack to help give him energy (his words). 

He was tired by the end & didn’t run the bases after he hit, but he did make it back out for the team huddle and cheer. And, afterwards he played on the playground for another hour. He was fine, he was great and he was so happy. 

Me on the other hand, I couldn’t shake it. I couldn’t stop visualizing him going into cardiac arrest on the field and me not making it to him fast enough. Being a mama is wild. Being a medical mama is wild X 10000. I have to learn to trust him and give him the tools to listen to his body and let him show us what he can do. But, it’s hard. It’s so so very hard.

All of this compounded with dates set for July for annual testing in Boston and kindergarten registration… feels like the world is spinning out of control. These are all good things & everyone is doing well. But, trauma is real. And, it creeps up on you when you least expect it & it builds… it builds and it builds. Mine through anger and sadness. 

I’m excited for the future. I’m excited for t-ball and I’m excited for kindergarten. And, I’m really scared for annual testing. There’s yet to be a trip to Boston that didn’t come without a surprise. We are hopeful this year will be that and that July will be our last annual trip and last invasive testing. My hope is from this, we will get to move to 18 month MRIs. But, for now… we get through July! And, we take t-ball week by week. Day by day… and, kindergarten… 🥹 how can my baby boy be so old and so very grown up. All these very special moments. So many moments, we had no idea if we’d ever get the chance to have. 

Love to all of you. Thanks for always checking in and keeping up with us.