Happy Birthday, Elise

Yesterday a girl named Elise celebrated her fifth birthday. Her parents will celebrate their first-born princess in a big way this weekend. This may be her last birthday, after all. Children like Elise who are afflicted with Tay-Sachs Disease seldom make it to five years of age, let alone six.

Elise’s life and her relative good health is a miracle. Miracles are the results one obtains from a combination of perseverance, patience, and love. Her parents, her sister, her grandparents, her circle of extended family and friends, and the vast support network of other families marked by Tay-Sachs have poured these magical ingredients into the life of this beautiful little girl.

I know Elise's story through my friends who are lifelong friends of Elise’s grandparents. They introduced me to Elise via the Caring Bridge blog her mom Laurie maintains for her to keep friends and family up-to-date on her daughter.

I receive email notices when Laurie updates the blog. I hold my breath when I click on the link and hope all is well with this child. Laurie writes the brightest, most loving posts I have ever read. She elicits support for other kids with TSD, tells her readers about her adventures with Elise and sister Caroline, shares news about her daughter’s health with tender love and gentle humor, and writes to most beautiful of love letters to her girl.

Laurie has called Elise her teacher. As I read the birthday blog post yesterday, I thought of all Elise has taught me: about TSD, about Caring Bridge, which provides free blogs for the very purpose I have described here, about the need for more research into this disease, about the importance of screening for the disease before pregnancy.

Those are the obvious factual things this child has taught. On another level, she has proven by her very presence in this world that love knows no bounds and has no end. She has shown that the beauty of her soul has found expression without the use of words.