Staying present is a challenge when you know what PWS might bring next
When I anticipate the future, I tell myself 'not now,' even though the worry is valid
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We spent time with family last week for my brother’s wedding, and got to hear someone say something we’ve heard, and said ourselves, many times about how content and relaxed both of our kiddos, Emerson and Ellis, seem.
“We always said that since Emerson has always been such a good baby, there’s no way you’ll get this lucky twice,” my relative said. “Only you and Jamie would have two babies that are this content and chill.”
We all chuckled. “We’ll see what the future holds,” I said, and left it there.
Happy and content, for now
Over the years, and since we went back on the waitlist to adopt a second child, there have been many jokes that Emerson was our “trick baby,” the kind of easy, content first baby who convinces you to have another. There’s always a laugh attached when someone says it. My husband, Jamie, and I have made the joke ourselves.
It’s an accurate comment, for all intents and purposes. Ellis is just as happy, content, and chill as Emerson. In the present moment, it seems like we’ve struck gold.
This time, though, the comment has stuck with me. Emerson is still content and chill, most of the time. That hasn’t changed. But lately there have been small signs here and there — an increasing stubborn streak, a screaming fit against a nap she used to go down for easily, little repetitive habits that feel new. Nothing dramatic, and certainly nothing that would register to anyone outside of our home as anything other than typical toddler shenanigans. But I’ve taken note of them.
People constantly say about our young kiddos that you’d never be able to tell they have a condition, that they look so “normal,” that we got lucky having two content, happy kids. It’s meant as reassurance, sometimes even as a compliment to us. Most of the time, I let it pass without a second thought. Sometimes, I even savor the words because, in that moment, they’re absolutely true.
But for a parent who knows what Prader-Willi syndrome can look like further down the road, and one who is starting to notice the subtle shifts happening, those comments are beginning to land a little differently. They’re becoming reminders that “normal now” likely comes with an expiration date.
Right here, right now
Looking ahead to what is expected changes nothing about what our lives and experience look like now. Ellis is rapidly gaining core strength, impressing his physical therapist with his rolling all over the place, stable sitting, and scooting everywhere. He’s a very talented “bum shuffler,” as Bluey would say. His cognition has been phenomenal and he is doing really well with transitional and solid foods. These are all fantastic wins right now.
As for Emerson, she’s currently motivated. She loves to learn, responds well to redirection, and is making progress with communication through signing, new sounds, and using her PECS communication book. She’s very audible, having in-depth conversations constantly (I’m just not sure exactly what she’s talking about in her gibberish language). She is very good at mimicking; some would even say mocking me at times. The other day when I was on the phone, I turned around to see her pinch her fingers against her cheek, which means she’s on the phone, making faces and babbling along. She was mocking me, facial expressions and all. It was hilarious!
I’ve started treating all of this, the wins, the small moments, building the routines, as something closer to a practice. When the anticipatory thoughts show up, I’ve started naming them to myself. Telling myself, “not now.” The worry is valid. Reminding myself that change is inevitable, and that I won’t get these moments again, helps me set it aside long enough to actually be here, now and present.
The future is tomorrow’s problem. Everything happening now is a season, and I want to savor each one.
Note: Prader-Willi Syndrome News 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 Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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