When we got the phone call confirming that our daughter has Russell-Silver Syndrome, naturally we started searching the web to learn about the disorder.
A day after Zoey was born, we met with a doctor who encouraged us to submit bloodwork for genetic testing due to her size, 4 pounds, 3 ounces, born at 36 weeks.
It’s like her little onesie says, “Tiny but mighty.”
The doctor actually told us he thought the tests would come up empty and reveal “a nothing-burger,” he said. For peace of mind, though, we figured we may as well send the umbilical cord blood off to check.
So a couple months passed, Zoey barely grew, and eventually we got the call. From there, we learned as much as we could about Russell-Silver Syndrome. That’s because there was a serious uncertainty about what we’d be dealing with. We wanted to be prepared as best as possible for the unknown.
Let me tell you, it’s not a great decision to just go surfing online to learn about a disorder that you know nothing about. Sure, some of the information is helpful and insightful. But you so often see the extremes and overreact to what you have no control over. You see pictures. Read stories. You begin to overthink a little bit.
As simply as it gets, Zoey is very small. She turns 2 in April and she’s about 12½ pounds and 26¼ inches tall. (And believe me, when you’re small, that half pound and quarter-inch are important to note.)
Her growth will be behind her entire life and she’ll never fully catch up to what’s considered average. At some point this year, she’ll likely begin a daily shot of growth hormones to help her develop at a more proper rate.
We’ve learned quite a bit about Russell-Silver Syndrome and the ways Zoey aligns with other people who have it. She doesn’t eat a lot and when she fills her stomach too much it usually comes back up — on her mom.
The obvious distinction that she has a growth disorder is her height. It’s a joy to come home when the day’s winding down and get met at the door by Zoey smiling and giggling with her arms stretched out to give a hug. Standing tall, she doesn’t even measure up past my knees.
During a recent trip to Florida, we set her down near baggage claim after the nearly four-hour flight. Strangers sure have some funny, puzzled looks when what appears to be a newborn is marching around below them.
Cognitively, Zoey is doing as great as we could ask. Through the help of physical and speech therapy, she’s learned sign language very well. Our favorite is the “please” sign, which is essentially rubbing a hand in a circular motion across the chest. Zoey, however, has her own rendition in which she rubs her belly and it looks like she just got done eating a fantastic Thanksgiving meal and approved. Other signs she’s done well with are “more,” “no,” “eat,” “help,” “dog,” and “bye.”
Zoey doesn’t talk, but she’s just starting to babble. We figure it’s because the muscles used to control her voice aren’t properly developed yet, and we’ve heard other kids with Russell-Silver have had similar delays.
That’s fine — Zoey’s nonverbal language can be hilarious. Her smile is second to none, and she shows it off to the world. She also has a confidence and fancy walk to her when she wears shiny beads or bracelets. Will she be a high maintenance girl? Maybe.
And on the flip side when she’s terribly disappointed after being told not to do something, she does this sad, slumped-over walk that’s always worth a laugh.
Recently, a friend asked me how we’re “dealing” with Zoey and her growth deficiency. I didn’t really know how to answer the question. The way I look at it, she’s just our kid and we’re raising her as the individual she is. We help and teach her the ways we know best. Sure, she’s small, but I just look at her as my daughter.
That brings me back to the day we learned about Zoey’s disorder, how we started looking at pictures online and learning about symptoms of other kids with Russell-Silver Syndrome. Maybe we picked up a few tips and hints, sure.
But the internet doesn’t have a parenting playbook or a how-to guide for kids. Ultimately, disorder or not, your kid is your kid. The best way to learn about what they want and need are through everyday experiences.
And in some way or another, Zoey is developing and improving every day. Pretty good for a kid with a growth disorder if you ask me.