Rachaeli?s smiles were always radiant gifts to the world around her. These gifts filled the room with light and warmth and soulful beauty.
Before Rachaeli?s diagnosis, we didn?t realize that these beautiful smiles and giggles would soon fade, leaving us with only memories of the amazing purity of her joy. By 15 months of age, Rachaeli had gone weeks without a laugh, or even a smile. Sudddenly, while cradling her in our arms one night, Rachaeli began giggling. The giggles continued for almost a minute! It was surely the sweetest, purest laugh one?s ears could be blessed to hear. These sweet episodes continued every several days, usually out of the blue. We were elated to see that God offered us, albeit briefly, a small window into the joyful soul of our daughter.
I then thought about the prayers that wonderful people have continuously offered on Rachaeli?s behalf. While I have no false hope of a cure, I firmly believe that God hears their prayers and responds in ways I cannot yet fully comprehend. And as I held my daughter and listened to the sweet laughter I had not heard in what seemed like forever, I firmly concluded that a prayer had just broken through. Perhaps, I thought, every time that a soulful prayer reached Shamayim [the Heavens], God sent a little window of happiness to my angel here on Earth. This connection was an incredible source of comfort to me.
Later, while talking with another parent of a Tay-Sachs child, I mentioned the giggle episodes. They said, ?Oh-- you mean Giggle-Seizures? and went on to explain how their neurologist taught them about Seizure spells in Tay-Sachs initially manifesting as brief episodes of spontaneous giggling. I was crushed. The comfort I had gleaned from my spiritual paradigm was rapidly replaced by a cold medical illustration of my daughter?s failing health. Why did I need to know this? Couldn?t each giggle just be a sign that a prayer reached God?s ears?
Then, after much thought, I came to realize that both could be true.
And while I watch my daughter slowly fade before my eyes, I am also shown, by her Creator, many reminders that He is with us through this process, listening, comforting. I can view every aspect of Tay-Sachs as progressive neurodegeneration, as cell death; or, I can train myself to look more deeply. When I do so, suddenly each progressive step of the illness shows me God?s hand in hers, walking her slowly Home. And with each giggle-seizure, He reminds us that she feels our prayers, knows our love, and is embraced as tightly by her Father in Heaven as by her father here on earth. – ef