Luca Rising Foundation

Day 1652.

Today was one of those simple days that somehow felt a little magical. We went to the park with Debby and spent the afternoon watching Luca run, climb, explore, and simply be a kid. For most families, a day at the park might not seem like a big deal, but for us it’s something we once only dreamed about.

There were years when congenital athymia stole so much from Luca and from me as a mother. The thought of crowded places, playgrounds, and carefree childhood adventures felt terrifying and out of reach. Those things would all lead to infections and infections too frequently are the end of life for a kid with athymia. Today, watching him laugh, play, and enjoy every moment was a reminder of just how far he has come.

The best part was sharing it with Debby and watching the joy on Luca’s face. We laughed, soaked up the sunshine, and watched him make memories that every child deserves to have. In so many ways, we’re making up for the things congenital athymia took — one playground, one adventure, and one ordinary but extraordinary day at a time.

Life can get busy, and sometimes the most meaningful memories come from the simplest experiences. A trip to the park, a good friend, fresh air, and the joy of watching Luca just be a kid turned an ordinary day into a really good one. Days like today may not seem extraordinary, but they’re the moments we’ll remember long after they’re gone. These are the moments that get me through the hard days, I’m forever thankful for them.

Day 1650.

Today was a day for playing cars, monster trucks, watching Bluey, and savoring the moments when Luca continues to find his voice. We played hard, skipped a nap, and finally he has crashed in my lap on the couch. These moments are so special, I live for these cuddles and can’t imagine a better way to wind down the day. As I look down at his little sleepy self I can’t help but hope that he knows just how loved he is.

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Things Luca said to me today:

“Tickle, tickle.” It was 4 am and he was hovering over me with his tickle hands ready to go. Terrifying.

“Mama, mean.” When I wouldn’t let him eat sprinkles for lunch.

“Fly to space.” Telling me where he would like me to go when I refused to take him to target. Good one, buddy.

“Hungry for mac and cheese.” While actively refusing to eat said mac and cheese and eyeing fruit loops.

“Luca is not tired.” He’s really embracing speaking in the third person, especially at 10 pm when he’s definitely tired.

“Love you.” I waited four and a half years to hear this. He’s been signing it for a while but hearing it tonight was a core memory in the making.