My precious daughter, I always imagined our conversations at age twelve would revolve around fashion, school, relationships, and the ups and downs of growing up. As a first-time parent, I envisioned being the kind of mom who you would feel comfortable confiding in. I aimed to be open, supportive, and encouraging of your individuality, hoping you would always think for yourself and resist the pressure to conform.
As you transitioned through your early childhood, I looked forward to the wonderful girl and woman you would eventually become. You were delightful, full of laughter and joy, with a world of possibilities ahead of you.
However, as you entered school, it became clear that something was amiss. You weren’t progressing as your peers were. We found ourselves navigating the complicated realm of special education, psychological evaluations, and countless consultations with specialists. You faced an overwhelming number of tests in your young life, from blood tests to brain MRIs, EEGs, and more. You showed such bravery throughout it all.
In the end, the tests revealed a devastating truth. At just eight years old, we learned you had Sanfilippo syndrome, a rare and progressive terminal illness. My entire world was turned upside down. I struggled to understand how to carry on, how to find joy in life again. Everything felt shattered.
Over three years have passed since your diagnosis. Though the weight of the situation looms large, we still breathe, eat, sleep, laugh, and create beautiful memories together. Your resilience inspires me daily. You continue to dance, sing, cheer, read, and write. You radiate light, my darling daughter. Even without awareness of your terminal condition, you live a joyful and love-filled life, truly experiencing happiness.
We may not have the conversations I once envisioned, but the discussions we do share are precious. You love to plan, so we often talk about what we will have for dinner or our activities for tomorrow. I treasure the sound of your laughter and the warmth of your voice. It’s challenging to express my deeper feelings, as I never want you to sense any negativity surrounding your life.
My sweet Lily, here’s what I long to share with you…
- I am deeply saddened that you must live with Sanfilippo syndrome.
- I regret that your life is filled with doctor visits and extra medications.
- I wish you didn’t have to face the challenges of expressing your thoughts and emotions.
- I mourn that you can’t fully experience the joys typical of a twelve-year-old.
- I’m grateful that you remain oblivious to the stares from those who don’t understand your differences.
- I admire that you care little about others’ opinions of you.
You have filled my life with more love and joy than I ever imagined possible. You’ve impacted countless lives, some of whom you may never meet. You’ve shown me that I can endure whatever life throws my way. You’ve taught me compassion and empathy. I am so proud of your achievements; you’ve already defied the odds.
I adore your unique, quirky personality. I love that you feel deeply, even crying at our wedding video. I am thrilled that you see the good in people and judge others with kindness. Your innocence, simplicity, and ability to find joy in the little things are beyond beautiful.
You are loved more than you will ever comprehend. We have chosen not to burden you with the knowledge that your body is failing. Your spirit and joy will forever resonate in the hearts of those around you. Even though you’re twelve, your mind resembles that of a six-year-old. We don’t want to cloud your happiness with worries about death. We haven’t given up on you; we still cling to hope for a cure for Sanfilippo syndrome. Our wish is for you to remain the fun-loving girl you are. We will carry the weight of your diagnosis while you continue to sing, dance, laugh, and embrace life.
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In summary, navigating life with a terminal illness in a child is a heartbreaking reality. While we may not have the conversations I once dreamed of, we cherish the moments we share. My daughter, you continue to inspire me, and your joy is a reminder of what truly matters in life.