As a parent, I always imagined conversations with my daughter, Emma, revolving around typical teenage topics—fashion, friends, and the ups and downs of growing up. I aspired to be the kind of mom who was approachable and open-minded, someone you’d want to confide in. I envisioned encouraging her to embrace her individuality and celebrate her uniqueness without the pressure to conform.
Throughout her early childhood, I eagerly anticipated the incredible young woman she would eventually become. Emma was joyful, spirited, and full of life; she had limitless potential. However, as she transitioned into her school years, it became painfully clear that something wasn’t right. Emma struggled to keep pace with her peers, and soon we found ourselves navigating the complex world of special education, psychological assessments, and numerous medical evaluations. Emma, my brave warrior, faced more medical tests than many do in a lifetime—blood tests, MRIs, EEGs, sleep studies, x-rays, and more.
The culmination of these tests brought us the most heartbreaking news. At just 8 years old, Emma was diagnosed with Sanfilippo syndrome, a rare and progressive terminal illness. In that moment, my world unraveled. How could I go on? Would I ever find joy again? The future felt bleak and uncertain, and my heart was shattered.
Three years have passed since that life-altering diagnosis. Both our hearts still beat, and we continue to savor life’s simple pleasures—eating, sleeping, laughing, and creating memories together. Emma’s resilience astounds me; she still dances, sings, and engages with the world around her. Although she may not fully grasp her illness, she embodies a spirit filled with love and happiness.
While we may not have the conversations I once envisioned, we still share meaningful moments. Emma, a natural planner, often discusses what’s for dinner or our plans for the next day. I treasure her laughter and voice, but expressing my true feelings remains a challenge. I never want her to feel that there’s anything wrong with her.
My dear Emma, there are words I wish I could say to you:
- I am deeply sorry that you must navigate life with Sanfilippo syndrome.
- I regret that you endure constant doctor visits and must take extra medications.
- I wish you didn’t face difficulties in expressing your thoughts and feelings.
- I mourn the experiences you should be having at 12 years old.
- I’m grateful you don’t notice the curious glances from strangers who don’t understand your differences.
- I admire your indifference to others’ opinions about you.
You have infused my life with more love and joy than I could have ever anticipated. You’ve touched so many lives, even those you’ve never met. Your strength teaches me that I can withstand anything life throws at me, and you’ve shown me the importance of compassion and empathy.
I am endlessly proud of your achievements—you’ve already defied the odds. I cherish your unique personality and your ability to find joy in simple things. You are loved more than you will ever realize.
We’ve chosen not to share the reality of your physical decline with you. Your spirit and joy will forever resonate in the hearts of those around you. While you may be 12, your understanding often resembles that of a 6-year-old. We don’t want the burden of worry to steal your happiness. We hold onto hope for your future, believing in the possibility of a cure for Sanfilippo syndrome. You keep singing, dancing, and loving life; we’ll bear the weight of your diagnosis.
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Summary
This heartfelt reflection shares the challenges of parenting a child diagnosed with a terminal illness. It captures the love, resilience, and hope that parents maintain while navigating the complexities of such a profound situation. The piece emphasizes the importance of cherishing joyful moments and supporting children in their unique journeys.