Julia Roberts married into the name. In case you didn’t know, (the famous) Julia Roberts will not call your establishment to make her own tire rotation appointment or to argue about her cell phone charges. A geneticist’s dream, she helped produce two cute kids with a rare syndrome that includes a vision disorder and a kidney disease; resulting in weirdly moving eyes and kidney transplants for both at the age of eight. Julia speaks to groups on topics about navigating life as a special needs family. She blogs at Kidneys and Eyes and created a social networking site for special needs families, Support for Special Needs. She writes for sites like Aiming Low and Hopeful Parents. You can find her on twitter as @juliaroberts1 or @supportSN.
Her Life Reminds Me
It’s a typical summer day. Our neighborhood pool is gearing up for a swim meet. I’m volunteering and dragging along a small cooler, chair and my patience. My daughter, Quinnlin, has been on the swim team for five years. Well, this is her fifth, which is an important year because she’ll be awarded the 5-year blue towel with her name stitched in gold. Owning a coveted team towel is a rite of passage with the kids on this team. Serious stuff.
There are over 100 families doing exactly the same thing this summer at our pool. The same parents who’ve driven their kids countless times to practice and bought new swim suits and tried to figure out schedules for afternoon practices and weekly swim meets. Our season is only five meets plus two county meets long so it’s nearly over as quickly as it starts.
It’s amazing to me that five years ago when Quinnlin started this team she’d just learned to jump on two feet. She’d only been really walking without a walker for two years. She would still not be able to skip for another three years or so. She was front toothless from having fallen so much without the reflexes in her little arms to protect her face. She was, much to my delight, joyously happy with her wobbly, toothless, swimming self.
She was also in kidney failure due to the recessive form of Polycystic Kidney Disease or ARPKD. Quinnlin ended her second swimming season, in 2009; with a date for a kidney transplant and on her eighth birthday she received one from a (really, really good) family friend, like her brother who had a transplant two years prior.
As I watch my daughter swim in the heat of the Georgia sun, it occurs to me that there are many people who take this summer league very seriously. It’s annoying enough for me to witness bad parent behavior and take note of it more than a few times and I started thinking about my daughter and her vulnerable little life.
Quinnlin is not a fast swimmer. She’s usually in the last heat, meaning her times are around the slowest on the team. She gets all different kinds of colored ribbons for her efforts and at least once a season she’s received a blue ribbon for her heat. She is most undoubtedly a team player and loves being social and connected to this community of kids. She is just like the other swimmers in that she is nervous before meets, wants to do her best, and enjoys the morning-after-meet donut and ribbon party.
In the past I’ve witnessed Quinnlin’s endless suffering, her tireless efforts to keep up with her peers developmentally and physically and her buoyancy in living life after being ill for so long and it strikes me that that my annoyance with other parents’ bad behavior isn’t about them at all.
It’s about me (not) letting their behavior bother me. It’s a reminder about what is truly important to me, to my family. It’s about being grateful your child can get in a pool without catheters because of dialysis, sit among friends and hold crayons to color, or walk around the concrete of a pool deck that is too hot for her feet. It’s about celebrating the girl who now walks unassisted after years of practice, who tries her very best and is so proud to know that we’ve watched her swim. “Did you see me?” she’ll say. It’s about raising a good sport and a happy, healthy-as-she-can-be kid who is engaged in life.
The memories of pushy swim parents wash away when I think of Quinnlin walking up to the starting blocks and looking through the crowd to find me to make sure I’m watching. Then she waves. Smiles.
Nothing else matters.
Please read these other notable posts Julia’s written: