I’ve always known that I’m lucky. Lucky to be healthy, lucky to be a mommy to healthy children, lucky to have everything I need, and then some. But sometimes, I forget. Sometimes, I actually become convinced that the point of life is about making deadlines and keeping up with appointments and making sure everyone in my life is happy.
Then I had the opportunity to meet someone a few months ago who, in the relatively short amounts of time we spent together, taught me a lot about this thing called perspective. She’s a girl with homework woes, a blooming social life, and the occasional middle school drama. And also, a pretty incredible story.
Megan Robertson was born with an undiagnosed congenital heart defect. Everyone remarked how she was such a calm baby- a beautiful baby, with her fair, almost porcelain-white skin. Her mom recounted how she would tire out quickly and sleep for long periods of time, how “easy” she seemed to be. It wasn’t until later that they discovered a heart murmur that would require open heart surgery. In 2004, Megan underwent that surgery at VCU Medical Center/Children’s Hospital of Richmond, at just three years old.
Although she came through the surgery with flying colors, almost immediately afterward, her doctors become concerned that her heart was still leaking. They thought the hole would probably close, and because Megan had recovered completely, they decided to keep an eye on it.
So, Megan continued to be an active little girl with a bright disposition. And how nice it would be to wrap things up here, tell you that Megan is now a twelve year old girl who barely remembers that scary time when she had open heart surgery.
But her story is far from over.
Unfortunately, she began suffering from migraines not long after her surgery. Although sporadic and disconcerting, she continued to bounce through her little life with the same demeanor she’d always maintained. Then one day while she was attending a summer camp, she began to lose sight in her left eye. Her teacher called her mom, who immediately rushed her to the doctor. The diagnosis: Megan had suffered a stroke. She was six years old.
Thankfully, doctors determined there was no permanent damage, but Megan would still spend the next two years re-learning how to read, as well as countless hours in physical therapy to strengthen her left side. She continued to do it all with the same sunny disposition, always with a huge smile on her face. It was during these physical therapy sessions that she was first approached about channeling her charisma and personality towards acting. She was soon signed by a local agent in Richmond and has been auditioning ever since.
Meanwhile, the events of the last three years of Megan’s life were beginning to be pieced together like a big jigsaw puzzle. With the help of her neurologist, and later a geneticist, Megan was diagnosed with classic Ehlers Danlos syndrome and hyper-mobility. Ehlers Danlos is characterized by the production of extra collagen in the body, giving joints and veins much more elasticity than normal. And while it might look really cool that Megan can pop her elbows in and out, it’s not so good when it causes the veins in your body to contract and expand. This was determined to be the primary cause of the migraines, the stroke, the asthma that she had also developed, and the fact that her heart wasn’t healing properly.
I let all of this sink in while talking with Megan and her mom, Heather. I tried to picture Ella- at the age she is now- being wheeled through the doors of an OR. I imagined the horrific “what-ifs,” the fervent prayers, the way I would beg God to please, please, let it be me instead. No parent should have to feel that way. Ever.
And then of course, what an amazing feeling of relief to know that you’d come through the other side, that you were out of the woods, only to be hit with another curveball, another set of horrific “what-ifs,” and more questions than answers. What a rollercoaster. At one point in my conversation with them, I remember asking- almost to no one in particular, “just how much can one family go through??” It was the moment that Megan piped up, mid-bite of her PB&J sandwich. “So many people have it worse than me. Sometimes I think If you put all your cards on the table with everyone else’s, you’ll probably want to take yours back.”
I’m sorry, did I mention this girl is TWELVE?
Megan isn’t even in high school yet, but her vision for her future is just as clear as her wise-beyond-her-years perspective. During a visit with her cardiologist two years ago, he asked her if she would be interested in meeting the Director of Marketing of Children’s Hospital Foundation. It was during this time that Megan realized her calling, one that would honor those children whose burdens are so much bigger and heavier than her own. Since then, she’s poured her time and energy into working with the Children’s Hospital of Richmond, campaigning and advocating for children and their families whom she felt didn’t have a voice. Along with that, she also volunteers with the Children’s Miracle Network, and Project 324 through Celebrate Virginia Live- a charity that promotes art enrichment in the community. She also works hard to maintain her A+ average at school, in spite of some residual processing delays from her stroke. Her teachers have even remarked how the special-needs children in her class are drawn to her, how they will often respond to her in ways they won’t with their aids and other teachers.
Her heart, for all it’s been through, is twice the size of most people I know.
And her perspective? Humbling, challenging, inspiring. There’s no doubt that the cards that were dealt her were painful, and yet, when it would have been easy for her to ride the coattails of sympathy, to sit on the sidelines and make excuses, she made a choice to rise above it and be stronger for it.
That choice, clearly, has had a ripple effect. This aspiring actress/model/talk show host/CIA agent is using her newfound strength to help lift the heavy, broken spirits of children and families around her. She’s using her voice to speak hope into the lives of the hopeless. There’s an urgency to make the minutes count and she knows this from experience. She’s not going to waste a single one.
Sometimes, if we’re truly lucky, we’ll find ourselves in a front row seat for something truly spectacular- something that, while it’s evolving and changing, is transforming us in the process. Megan’s family has those front row seats. I can see it in her Mama’s eyes- the immense joy and pride she has at watching her daughter- the little girl who once used to limp down the hallway of their house- dance her way toward a big and bright future.