Yesterday, as you sat in your stroller, I could sense your growing frustration. You were engaged in one of your classic, spontaneous monologues, interspersed with questions that popped into your head. But when you paused to catch your breath, you noticed your sister was silent beside you. Feeling slighted by the thought that she might not be paying attention—or worse, that she simply didn’t care—you called out, “Answer me, Emma!”
But still, there was no reply.
I can’t say whether this moment resonated with you, or if it even registered in your young mind. After all, at just two years old, it’s easy to let such things slip away. Yet, it struck me deeply because I realized that soon enough, you would come to understand that your sister is different: her silence isn’t a sign of indifference, but rather a reflection of her inability to respond due to a rare genetic condition that affects her brain’s function.
Yes, your big sister—my cherished firstborn, whom I’ve shared countless joyful moments with online—is among a small group of individuals diagnosed with a genetic syndrome that brings with it significant challenges. This condition has hindered her ability to communicate and learn in the ways that most take for granted. I know that one day, I won’t be able to shield you from this reality, and it breaks my heart to think about the disappointment you may feel when you realize that I can’t simply fix this “boo-boo” like a typical mom would.
When your father and I envisioned parenthood, we dreamed of milestones like sports victories, graduations, and weddings. We never anticipated the harsh realities of missed milestones, evaluations, and diagnoses. The news we received a year ago shattered those dreams and reshaped our identities, forcing us to mourn the life we once imagined for Emma while coming to terms with our new normal.
I remember a time when my biggest concerns were college applications and job deadlines. But then I got married, became a mother, and eventually a mother of a child with special needs. Everything shifted in an instant.
Now, my concerns revolve around whether Emma will ever be potty-trained, if she will learn to say her own name, or if she will ever be able to express when she is afraid. I worry about her ability to form friendships and the opportunities she may miss. Amidst these worries, I hope you know that I have not lost sight of you—my vibrant, curious, and hilarious son. You are the light that brightens my often cloudy days, and your laughter is a balm for my soul.
I want you to know that every moment I spend with you fills me with immense pride and joy. You navigate this complex world with an ease that I admire, especially as you embrace your role as a big brother to Emma. Your enthusiasm when you race to check on her, mimic her new signs, or celebrate her little victories is heartwarming. It’s almost as if you were destined to be her brother.
Watching you play together is a reminder of the bond you share. Emma is your closest companion, and you are hers. The way you seek her out each morning and the affection you show her at night is nothing short of beautiful. You bring unparalleled happiness to her life.
Yet, as you grow, you may face challenges. There will be moments that test your patience and faith, and you may feel a sense of loss for the sister you imagined you would have. That’s okay; it’s a natural part of life. Just remember, while we may feel we’ve lost certain things with Emma, we’ve also gained so much.
You have a sister who greets each day with joy, who approaches every experience as if it’s the best moment of her life. She teaches us about resilience, love, and gratitude without needing to speak. Lila’s rare condition is part of what makes her unique, and in many ways, it has enriched our lives in ways we never anticipated.
As you grow alongside her, you’ll learn valuable lessons about life’s unpredictability, the importance of kindness, and the beauty found in the smallest moments. Your sister will shape who you are, and you will shape her in return. Embrace this journey, for while it may not always be easy, it will surely be meaningful.
Noah, you are rare and extraordinary in your own right. Even in these early years, you profoundly affect our family’s life, making our existence richer and more beautiful. You and Emma are exactly what each other needs.
With all my love,
Your Proud Mom
To learn more about conditions like Emma’s, I highly recommend visiting ACOG. And if you’re looking for more information on home insemination, check out this resource.
Summary
This letter from a mother to her son, Noah, addresses the challenges they face as a family after the diagnosis of his sister, Emma, with a rare genetic syndrome. The mother reflects on the journey of acceptance, the pain of lost dreams, and the joy of discovering a new normal. She emphasizes the importance of love, resilience, and the bond between siblings, encouraging Noah to embrace his unique role as Emma’s brother and the invaluable lessons they will learn together.