Being a Special Needs Mom is Really, Really Hard (But I Love It Anyway)

Photo courtesy of Cailin Smith Photography.
Photo courtesy of Cailin Smith Photography.

While in high school, an opportunity came up at my church’s youth group to volunteer as a buddy at Camp I Am Special — a fun, weeklong summer camp for children, teens and young adults with disabilities. The buddies provide one-on-one care and friendship 24 hours a day throughout the week, and I remember thinking that it sounded like such a nice thing to do. I also felt fairly certain that I couldn’t handle it. I knew nothing about disabilities. The thought of it felt scary and overwhelming, and I inevitably told myself that I wouldn’t be able to care for someone with a disability for an entire week.

Well, evidently God has a sense of humor, because 10 short years later, my second baby was diagnosed prenatally with Down syndrome. Every now and then, I look back at my teenage self, thinking I couldn’t do this, and I can’t help but chuckle.

It’s not easy raising a child with a disability. There seems to be so much pressure now to present a rosy outlook on being a special needs parent, but it isn’t always sunshine and rainbows. Special needs therapy isn’t playtime, where your child smiles and laughs while having a blast. It’s hard — both for the mom and the child. There are countless doctors appointments, stress over blood work, fear that he will be deprived of a quality education that comes more easily for other parents, etc. I don’t merely have to worry about him learning to read and write, I have to worry about him finding a teacher that will be understanding of his disability, one who won’t resent him for it or make judgments regarding his developmental delays.

Every day, it is hard to watch my 4-year-old, Wyatt, struggling. Things that come so easily to other kids are a daily battle for us. He still doesn’t really talk yet — although he sure loves to sing! He hasn’t yet called me “Mommy” or said, “I love you.” He can walk, but he walks much more slowly than my other kids do, and he needs extra help sometimes. Fine motor skills continue to be a huge challenge for him, too. It’s exhausting and heartbreaking, all at the same time. Wyatt isn’t even my only child with a disability, either — two of my other children also have speech and language delays. It’s so much work, every single day, to be a special needs mom, and it’s not something that I ever planned on or expected.

But you know, despite the difficulties that come with being a special needs mom, I wouldn’t change it for the world. His developmental delays are difficult, sure. Being an advocate for him is tiring, yes. But I also have a little boy who has these adorable, beautiful, almond-shaped eyes that crinkle when he smiles and laughs and who knows the perfect spot on my neck to bury his head. I have a son who never hesitates to hold my hand, and who is remarkably independent, disability be damned. There’s even talk of there being a “cure” for Down syndrome one day. I honestly don’t know if I would choose that for Wyatt, should the choice be left up to me. Wyatt is who he is, and I love him.

I also have a family of fellow Down syndrome moms across the world who I can count on for anything. They give me advice, a shoulder to cry on, or sympathy whenever I need it. We are there for each other when one of our kids is sick, and we all grieve when one of them passes away. I love these moms with everything in me, and I would never want to give up having them in my life.

I would never try to pretend that life as a special needs mom is easy; it’s an uphill battle, every single day. But it’s a journey that I want to walk; even if I didn’t originally choose to go down this path. I’m here now, and I’m grateful for where it has taken me. Wyatt has made me a better person and a better mother. He has taught me more about love and acceptance than I ever could have expected to learn without him. And no matter how hard it is every day, he gives me the strength to keep going, to keep fighting and to find the love, no matter what.

Cassy Fiano-Chesser
Cassy Fiano-Chesser is a Jacksonville native and mom to six kids. Her husband is a Marine Corps veteran and Purple Heart recipient. She works from home as a blogger and a freelance writer, and they currently live in the Argyle area of Jacksonville. Benjamin is their oldest, born in 2011, and he loves being a big brother. Wyatt was born in 2012, and he has Down syndrome. Ivy came next, in 2013, followed by Clara, born in 2015, who is a diva-with-a-capital-D. Rounding out the brood is Felicity, born in 2017, and Lilly, born in 2007. They love discovering things to do on the First Coast and going on family adventures, as well as cheering on the Jumbo Shrimp and the Icemen.

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