Oh, my dear Lily, I always imagined that when you turned 12, we’d be chatting about the latest trends, school happenings, crushes, and all the little ups and downs of growing up. As a first-time mom, I pictured myself as someone you could confide in, sharing your thoughts freely with an open heart. I wanted to be that supportive figure who encouraged you to embrace your individuality and think independently—never feeling pressured to conform.
As you navigated through toddlerhood, I was filled with joy at the thought of the amazing young woman you would become. You were charming, witty, and radiated happiness. The world was yours to explore, and I believed you could achieve anything.
But as you transitioned into school, it became clear that something was amiss. You weren’t progressing like your peers, leading us into a maze of special education services, evaluations, and appointments with specialists. You faced more tests in your young life than most people encounter in a lifetime—blood tests, brain MRIs, EEGs, sleep studies, and so on. You were a brave little warrior.
Then came the life-altering news at just 8 years old: you had Sanfilippo syndrome, a rare, progressive, terminal condition. My heart shattered. How could I carry on? Would I ever feel joy again? The future felt bleak, and my world was turned upside down.
Fast forward over three years since that diagnosis. We’re still here, breathing, laughing, and loving. Your spirit and resilience continue to amaze me. You still dance, sing, and create beautiful memories, shining like a star. You may not fully understand your diagnosis, but you live each day with such joy.
We don’t have the deep conversations I once dreamed of, but we share many delightful moments. You love to plan our meals and activities, and I treasure every giggle and word that spills from your lips. I struggle to express my true feelings, always wanting you to feel whole and loved.
Sweet Lily, here’s what I need you to know:
- I’m sorry you have to face life with Sanfilippo syndrome.
- I regret that so many doctor visits fill your calendar and that medications are part of your routine.
- I wish you could experience the things typical for a 12-year-old.
- I’m grateful you don’t notice the curious gazes of strangers and that you couldn’t care less about their opinions.
You’ve brought an immeasurable amount of love into my life and touched countless others—some you’ve never even met. You’ve shown me resilience in the face of adversity and taught me compassion in ways I never expected. I’m so proud of what you’ve accomplished; you’ve surpassed so many expectations already.
I adore your quirky personality, your tender heart, and your ability to find joy in the simplest moments. You’re cherished beyond measure. We’ve decided not to burden you with the reality of your condition. Your spirit and joy will forever resonate in the hearts of those who love you. While your mind may be that of a younger child, we fight for your happiness and hold on to hope for a cure. You keep dancing, singing, and embracing life, while we shoulder the weight of this diagnosis.
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In summary, this journey hasn’t been what I envisioned, but it’s full of laughter, love, and resilience. My Lily, you are a beacon of joy, and while the future remains uncertain, we will continue to cherish every moment together.