Our confirmation came on December 4th, 2003. Large cherry-red spots on her retina. At that moment, in our daughter’s eyes, we watched our dreamlike images of life with Rachaeli dissolve: Rachaeli kissing her own beautiful children; Rachaeli falling in love; Rachaeli holding our hands as we walk home from synagogue; Rachaeli sneaking into our bed at night; Rachaeli saying “Abba” one last time.
Soon after, the blood tests confirmed the absence of Hexosaminidase A, the enzyme missing in children with Tay-Sachs Disease. We were stunned by the diagnosis, as we tested negative years earlier on what we later learned was an improperly interpreted screen. Our search ended with words we begged that we misheard. Our baby has Tay-Sachs.
And as we gazed now into Rachaeli’s deep penetrating eyes, we wondered how the windows that once showered us with warm light could now project so plaintive a cherry red glow. We ached to comfort the old soul we knew was mourning with us. Our daughter smiled back at us, reminding us she understood all along.
Over the course of Rachaeli’s illness, God has blessed us with the enormous privilege of loving, nursing, kissing, and one day returning a perfect soul; a soul that has known only love. These pages are filled with images, emotions, insights, prayers, smiles, and tears. It is a tribute to the life of our sweet daughter, Rachaeli.
We love her forever.