I could hear your frustration building in the stroller yesterday. You were performing one of your standard stream-of-consciousness soliloquies—sprinkling in questions as the urge arose—and when you stopped after a three-minute streak to take a much-needed breath, there was silence from the next seat over. Insulted by the idea that your sister may not have been listening—or worse, that she may not have cared what you had to say—you demanded loudly, “Answer me, Lila!”
I’m not sure how long you ultimately thought about this exchange (or lack thereof), or if you even remember that it happened. After all, you’re just two years old. But for as fleeting as it was, it struck me, and here’s why: In that very instant, I realized that if it wasn’t right then and there, the moment would soon, in fact, come when you—and the rest of the world—would discover that your sister is different: that her lack of response wasn’t because she had been deliberately ignoring you, but because she actually couldn’t physically utter the necessary words to reply.
That your big sister—my sweet first-born—who I’ve plastered all over Facebook and portrayed as a picture of perfection, is one of less than 200 people in the world diagnosed with a rare genetic syndrome that keeps her brain from functioning entirely as it should, that may bring with it life-long behavioral and neurological problems, and that has robbed her of the ability to learn and speak with ease.
And sadly, that it would only be a matter of time before I could no longer shield you from this reality and the disappointment you might feel when you find out that I actually can’t fix this “boo-boo” and make it all better, as mommies are usually supposed to do.
There are dreams you have as a prospective parent, and that one day, I hope you get to experience with your own children: the celebration of all of the “firsts,” the sports championships, the college graduations, the weddings, the grandchildren. Missed milestones, early intervention evaluations, EEGs, and developmental pediatrician appointments never even remotely factored into the dreams your father and I had for Lila, nor did the discovery of a random genetic mutation that so easily explained them. In fact, getting this news one year ago single-handedly shattered all of those very precious dreams and instantaneously transformed our identities, our priorities, and our future. We had to grieve for the life we originally envisioned for your sister and begin to accept our new normal and the various struggles that we knew might come with it along the way.
I remember when I used to feel really busy—when I’d be exhausted at the end of a day, and when the extent of my worries were (fortunately) centered around getting into college, preparing for a deadline at work, or wondering when and who I’d marry.
Then I got married.
And became a mom.
And then I became a special-needs mom.
And just like that, everything changed.
To be honest, I don’t recall the person I was before; I don’t have time to. I don’t even think I can remember the last time I sat idly, without something weighing on my mind or lingering on my to-do list. This time, it’s not about college, work deadlines, or marriage. Not even close. Instead, it’s about whether or not your sister will ever be potty-trained, have the ability to say her full name, or tell me she’s scared. It’s about whether Lila will ever have the chance for a real friend, or a real job.
Amidst these worries—and through all of the IEP negotiations, insurance company battles, and therapy sessions—it might also seem like I’ve forgotten or lost sight of the fact that right smack in the middle of this new life is not only our dear Lila and her admittedly fragile parents, but you.
My other child.
My neuro-typical child.
My vibrant, hilarious, and gregarious child.
The brightest splash of color and light in what often feels like a foggy existence.
The little boy that literally makes me laugh-out-loud more than I ever knew possible.
The other half of my very full heart.
Please know that I could never, and have never, lost sight of you. There is not a minute that goes by that I don’t relish your contagious laugh, your boundless energy, your endless questions, your non-stop requests for hugs, and the pure joy that you exude. It is truly the fuel that keeps me going.
I guess that’s a long way of saying that I see you, I love you, and I am in sheer awe of you— especially your effortless ability to already embrace this “big brother-yet little brother” persona that’s been imposed upon you. Whereas I often feel like a foreigner in my own existence as of late, this existence is all you’ve ever known, and you approach it with such ease and acceptance—something I envy and aspire to do a better job of everyday.
Listening to your feet scamper across the floor at warp speed so you can see if Lila is okay, try out a new sign she’s practicing, or catch a glimpse of her saying a new word, gives me the deepest sense of pride. It’s like you were born to play this role, and maybe the truth is that you actually were. Maybe I don’t need to tell you that Lila is different, because maybe you’ve known all along.
As I write this letter, I’m watching you run laps around the house with your sister. There is no denying that she is your most cherished playmate and companion—and you, hers. She’s the first person you ask about in the morning and the last person you want to kiss before you go to sleep at night. And there is truly no one who makes Lila happier than you, Ollie.
While I hope that you continue to treasure your sister and what your relationship evolves to be, things may not always be that simple. There are going to be several tests for you on this journey: tests of your patience, your faith, and maybe even your loyalty. Life with Lila may get a lot harder as time goes on. You, too, may need to mourn for the sister that you, at times, feel cheated out of. That’s okay; you’re human. We all are.
But let me assure you of something: For all that we feel we may have lost with Lila—or that may fall short of our original expectations—we have made up in gains. You have been blessed with a sister—and your dad and I, a daughter—that wakes up every morning with an ear-to-ear smile on her face. Despite all of the challenges that life continues to throw her way, she approaches each activity as if it’s the greatest she’s ever experienced, and she so keenly soaks up every moment around her with the most sincere attention and interest. She literally doesn’t overlook a second of her precious life.
She shows us the meaning of persistence, demonstrates that love doesn’t necessarily need to be heard if it’s felt, and reminds us of all that we still do have—and for which we need to be grateful. Without saying much at all, your sister so eloquently articulates what life and love are all about.
Lila’s syndrome is rare, and so is she—in every sense of the word. And it’s not an overstatement when I say that I have learned more from you and your incredible sister in the last few years than I have otherwise accumulated in my lifetime.
Each day, I witness how much Lila is learning from you and how willing she is (for better or worse) to imitate you and spend every ounce of her energy trying to keep up with you. Despite all of the hours of therapy she receives, you continue to be her greatest teacher and motivator, yet even another reason why you continue to be one of my greatest gifts.
Just as Lila is learning from you, you are going to learn from her. And although I hope that you never let one piece of your life ever define or confine you, having Lila as a sister is undoubtedly going to shape a part of the boy you are, the man you grow into, and the person you become.
You’re going to see at a young age that life isn’t always fair.
That it doesn’t often end up how you thought it would.
That sad things happen when people least expect it, but that wonderful surprises do too.
That being different can devastate the soul if you let it, but also enrich it…if you let it.
That your voice—and your ability to use it—should never be taken for granted.
That life’s greatest moments are the little ones.
That worrying too much about tomorrow compromises the beauty and importance of today.
That all any of us should ever be expected to do is the best we can.
That hard work counts.
That progress—no matter how big or small—means something.
That hope matters.
That kindness matters.
That family matters.
That love matters.
That you matter.
You, too, are rare, Ollie—in every sense of the word. And in just your two short years, you already make this world, and our family’s different—but exceptionally beautiful—existence, an exponentially better one. In fact, you and your sister make it exactly what it was always supposed to be.
Your Proud Mom
To learn about Lila’s syndrome and others affected by it, please visit http://satb2gene.com/