One Day At A Time

My name is Gianluca, and my mom is writing about me for you today. When I was born 2 years ago, my parents were pretty surprised to learn about my extra chromosome. They were also pretty scared and sad because they thought Down syndrome was going to be a bad thing that we would have to overcome as a family. I have a big sister who is 4, and mom and dad were worried about how having a brother with special needs would burden her. Well, she showed them pretty quickly! We’re best friends and nobody loves me more than my sister! She’s my favorite, too. I always look to see what she is doing and have the biggest smile on my face when she plays with me.

My mom was really afraid of the medical issues she read about, and, unfortunately, we did have to face some. I had a floppy airway and some reflux as an infant, but the big stuff hit when I started having infantile spasms at 9 months old. It was a very rough year getting through the seizures, but with great medical care and my parents pushing hard to get the best treatments for me, I finally beat that monster! I got to use a G-tube during that time, which ended up being no big deal to mom and dad (boy were they worried about hooking me up to eat, but it was what I needed and turned out to be really easy!)! Infantile spasms really made it difficult for me to develop at a regular pace, but now that my head is clear, I’m so happy to be able to play and grow! I get to see a lot of teachers (therapists) who are helping me to learn to walk, talk, and play with different toys and puzzles! I get to go to the pool and ride horses, too! My sister is so jealous, but she gets to go to dance class and school! I can crawl and I can speak my own language. Soon enough mom and dad will understand me, or I might just start using the same words they say to me, I haven’t decided yet!

And guess what, I’m going to be a big brother! This summer, my brother is due and we are going to have so much fun playing together! Mom says my journey has taught her so much, and I just like to smile at her and give her kisses because I am so proud of her. She’s learned that one day at a time is the best way to live our lives, and today is pretty great!

Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).

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