When you’re raising a little one with a rare condition, you quickly learn to live for the milestones that don’t show up on standard parenting charts. My son is a medical warrior! He has Tuberous Sclerosis, which causes benign tumors to grow on his vital organs, and he is nonverbal. Just to clarify: nonverbal does not mean non-communicative! He communicates through sign language, intentional gestures, and his AAC device. But because he doesn't use spoken language to tell me how his day was, what hurts, or to casually chat, as a Mom, I constantly wonder what’s going on in his mind.
Well, this past week gave me undeniable proof that none of it is in vain. Across three separate days, his teachers randomly gave me compliments/updates that left me overflowing with joy.
When picking him up, his teacher told me that she asked him if he wanted to see Mommy. He signed "yes." I haven’t been afforded the opportunity of hearing him say “I want my Mommy” just yet, so knowing that "mommy" is his definitive answer when he's waiting for me, and that he’s actively excited to see me completely melted my heart.
Today, another teacher shared a detail that completely melted me. She told me that whenever he’s having a tough moment or feeling overwhelmed by the classroom environment, he calls out for me, saying “Mama”. When your child relies on alternative ways to talk, hearing them use their spoken voice specifically to call your name is everything. It was the most heartwarming reassurance that he knows exactly who his protector is. I loved knowing that he connects his Mommy with safety and peace, just as it should be!
Another day, his teacher said to me, "He is so polite, and you are raising him to be such a polite boy.” I was so flattered. You always hear other parents get so excited when people compliment their kids' behavior or say they are being raised right, but until that exact moment, I don't think I fully realized just how deeply that hits. When you spend so much energy navigating doctors, therapies, and a rare diagnosis, you sometimes wonder if the simple, foundational pieces of childhood are sticking.
Motherhood is a beautiful, complex, totally layered ride. To my fellow special needs mamas (and really any mama who has ever sat in the quiet wondering if she is doing enough) please let this be your sign today. Your love is getting through. The sacrifices you make, the patience you practice, and the endless energy you pour into your babies are absolutely not in vain. They feel it. They know it. And they are showing you every single day in their own perfect way. My heart is so full, and I’m holding onto these wins tight!
"Train up a child in the way he should go, and when he is old he will not depart from it"- Proverbs 22:6
