Dear Ethan,
Yesterday, I could sense your mounting frustration as you sat in the stroller. You were launching into one of your classic stream-of-consciousness monologues, peppered with questions. When you finally paused to take a breath, the silence from the seat beside you must have felt like a personal affront. Feeling slighted that your sister might not have been listening—or worse, that she didn’t care—you called out, “Answer me, Mia!”
Yet, there was no reply.
I found myself reflecting on that moment, wondering how long it stuck with you, if it even did at all. After all, you’re only two years old. But in that fleeting exchange, I recognized an impending reality: the day would come when you would understand that your sister is different. Her silence wasn’t a sign of indifference; it stemmed from her inability to respond due to a rare genetic condition that hampers her brain’s functionality. This condition may lead to lifelong behavioral and neurological challenges and has hindered her ability to communicate and learn as effortlessly as others.
It’s heartbreaking to realize that I will soon reach a point where I can no longer shield you from this truth, nor can I fix this “boo-boo” as mothers are often expected to do.
As a parent, you envision specific milestones: the joy of celebrating first steps, athletic achievements, graduations, and weddings. However, the realities of missed milestones, early intervention assessments, and medical appointments never entered the dreams your father and I held for Mia. The discovery of her genetic mutation not only shattered those dreams but also transformed our identities and priorities overnight. We had to grieve for the life we thought she would have and learn to accept our new normal along with the challenges that accompany it.
There was a time when my biggest concerns revolved around college applications and career deadlines. Then I got married, became a mother, and transitioned into being a special-needs mom. Suddenly, everything shifted.
Now, my worries are far more profound. I find myself questioning whether your sister will ever be potty-trained or able to express that she’s scared. I wonder if she’ll have the opportunity to make true friends or find meaningful work.
In the midst of these worries, I don’t want to lose sight of you—my vibrant, hilarious, and loving son. You are a brilliant light in what often feels like a cloudy existence. Your laughter, energy, and enthusiasm for life invigorate me, keeping me grounded amidst the chaos.
I want you to know that I see you, I love you, and I am in awe of how you’ve naturally embraced your role as an older brother. While I often feel like a stranger in my own life, you have adapted to this new reality with grace and acceptance. Watching you run to check on Mia, practice new signs with her, or cheer her on as she attempts to speak fills me with immense pride. Perhaps you’ve always understood that your sister is different, even if I haven’t articulated it.
As I write this, I see you racing around the house with Mia, her most cherished companion. You’re the first person she seeks in the morning and the last one she kisses goodnight. There’s no one who brings her more joy than you.
While I hope you continue to cherish your sister, it’s important to recognize that this journey may not always be simple. You’ll encounter challenges that test your patience, loyalty, and faith. There may be times when you feel cheated out of the sister you expected, and that’s okay; we’re all human.
Rest assured, for everything we perceive as loss, we have gained so much more. You have a sister who greets each day with a smile, embracing her life with an infectious enthusiasm, despite the adversities she faces. She demonstrates resilience, teaches us that love can be felt even when unspoken, and reminds us to appreciate what we still have.
Mia’s condition is rare, just like her, and I can confidently say I’ve learned more from you and her than I could ever have imagined. Every day, I witness her learning from you, trying to keep up, and you are her greatest teacher and motivator.
You are going to learn invaluable lessons from your sister. Life isn’t always fair, and it often doesn’t go according to plan. Sadness can strike unexpectedly, but so can joy. Embracing differences can either weigh you down or enrich your spirit. Your voice is a precious gift, and you should never take the ability to use it for granted. Life’s most cherished moments are often the simplest, and worrying about tomorrow can overshadow the beauty of today.
Ultimately, all we can do is our best. Hard work, no matter how small the progress, matters. Hope and kindness are crucial, and family is everything. You, Ethan, are rare in every sense of the word. In your short two years, you’ve made our family’s unique—and sometimes challenging—life infinitely better. You and your sister embody what our lives were always meant to be.
With love,
Your Proud Mom
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