In May 2017, I became an auntie to a beautiful little boy named Lincoln Anthony.
I’ll never forget the day we heard the news. It was a sunny Saturday morning in early fall when my brother’s affectionately named “demon dog” darted into the house wearing a shirt. I was on the couch, squinting my eyes to catch a glimpse of what the shirt read. My jaw dropped when I finally saw the words “I’m going to be a big brother.” The only words I could muster were, “Oh my god.”
What was the size of an apple seed in its mother’s womb was already so loved by our family. That’s the thing about my family. We love hard. But as much as I already loved my unborn nephew, I was nervous.
How could I fulfill my auntie duties when SMA was in the picture? I’d probably only be able to hold him in my arms for the first week before he became too long and heavy, at least according to my weak arms’ standards. I wouldn’t be able to give him bottles or change his diapers. (In hindsight, I’m OK with the latter.) I couldn’t do any of the physical duties to care for this child, so how would we ever bond?
Truth be told, I turned to Facebook and crept on the SMA moms and dads. I admired everything about their lives: how nurturing they are to their children, how open they are about their unique parenting, and how they manage to be incredible parents throughout the everyday struggles and roadblocks of SMA. They showed me that nothing could ever get in the way of loving a little babe, not even SMA.
On May 25, 2017, Lincoln was born. The first several months of his life were mostly spent sleeping, eating, pooping, and being snuggled by anyone and everyone. I admired from afar, occasionally snuggling him on the couch with help from someone else. I knew I would have to ease myself into this slowly if I wanted to earn the “coolest auntie ever” title. So much has taken place since my favorite little toddler’s first few weeks of life and I’ve learned many things from him.
I am unable to do what most able-bodied folks are capable of, but Lincoln and I have found ways to interact and bond with one another. He loves the dogs’ tennis balls, and so we created a little game to play. When lying down, I’m able to tap the ball off the couch with my finger and into his lap. He giggles, picks it up, and gives it back.
There’s also a really cool contraption from outer space that I sit on. To many, it is known as a wheelchair. But to Lincoln, it is known as the magic toy that lights up every time he hits it. Yes, we created a game with my wheelchair’s headlights. Every time he whacks a headlight, I simultaneously turn it on or off with my joystick, creating the illusion that he’s doing it himself. We go back and forth for as long as his little heart desires. He’s always so amazed by it.
Today, Lincoln is 17 months old and loves his Titi Lyss. In Portuguese, titi means auntie. Lincoln loves walking around saying “tititititi.” Just the other night, my family had trouble feeding him because he is going through a phase in which he loves the word “no.” That’s when I stepped up to the plate. I peered around his high chair, wide-eyed and smiling, and made him giggle.
Step one: Make the kid happy. Check.
Next, I asked my mom for assistance. She put some food on his fork and put it in my hand, then gently guided my arm to Lincoln’s mouth as I gripped tightly, hoping my fingers wouldn’t give out. It worked. Without a single complaint, he happily ate every. single. bite.
Step two: Mic drop the fork after successfully feeding the kid his dinner. Checkmate.
In his little, short life, Lincoln has already taught me so much about love and how it knows no boundaries. Just because I am unable to perform the everyday physical tasks in caring for someone doesn’t mean there aren’t any ways to grow a meaningful bond. It turns out there’s no rule book on how to properly love someone. It just comes naturally. Who would’ve thought the cutest little toddler would teach me that?
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.