Ayelet Galena, the 2-year-old daughter of Hindy and Seth Galena, whose story tugged on the heartstrings of people across the world, died last week. She had been diagnosed at the age of 1 with dyskeratosis congenita, a rare bone marrow disorder that left her in desperate need of a bone marrow transplant. After months in the hospital, Ayelet finally succumbed to her illness on Jan. 31.
This sweet little girl’s eyes have stayed, etched in my memory, ever since she got sick. She was truly a beautiful child, so sweet, so innocent. I really believed that God would make her better, that he couldn’t possibly wrench from her parent’s arms so young. I read her parents’ blog day after day, and even though Ayelet’s health was deteriorating, I kept up hope that she would get better. I think it was because of Seth’s unflagging optimism throughout all of his posts.
Ayelet had a relatively good night. Seeing as she is pretty stable with her breathing on Larry Bird level (33) we are going to step down to Magic Johson (32) on the oscillator. One step closer to getting from the stronger oscillator to the lighter ventilator. One step farther away from the higher supports she was on just 3 days ago. Progress.
They are now going to use a drug called (use Sean Connery voice) “The Rock”, which in a scary sense, paralyzes her body, sorta like Joan River’s face, but is needed so that she can get the rest her lungs, kidneys and little tummy so desperately needs.
We’ll also see if her kidneys can pee without the training wheels of the diuretics. Testing her to see if she can go to the next grade level. Will send out the report card later today. Hoping for a “P”.
I think of Seth and Hindy and I remember a phrase I heard as a teenager, “Life is 10 percent what happens to me and 90 percent what I make of it.” I am amazed and awed at Hindy and Seth’s strength throughout this whole ordeal. When other parents would retreat into their personal hell, Hindy and Seth bared their pain for the entire world to see, to share. And pain it was. When I opened the blog Wednesday morning and read their heartbreaking post about Ayelet’s passing, my breath caught in my throat.
I couldn’t stop my tears. Seth and Hindy were realizing the nightmare of every parent – their child, so young, taken from them. Never would they videotape her elementary school plays, teach her to ride a bike, walk her down the aisle. My heart was broken for them.
I went to go to see Hindy and Seth the other night. Dozens of people piled into Seth’s mother’s home, to pay their respects to the young, energetic couple. Still, Hindy and Seth did not retreat. They bared their pain for all to see, to hear. They told stories of Ayelet, of her stubborn nature, of her ability to smile through the pain. As Seth was sharing a particular anecdote about their daughter, how she used to give him a “dead arm” when she cuddled into the crook of his shoulder, his voice broke. His pain so tangible, everyone in the room could feel it.
I have learned so much from Hindy and Seth. I look at my own children and realize that every moment, every second with them is a blessing. When my son wakes me up for the fifth time tonight asking for a drink, or to fix his blanket, I will try to give him a little more patience than I usually would have, because just having him here, walking, talking, breathing, is so precious.
I have had Ayelet’s name on a little slip of paper by my computer, so that I could remember to say a prayer for her every day. I am always cleaning up, throwing out every last scrap of paper when I know I don’t need it anymore. My friends think I am positively obsessive when it comes to clutter. But I won’t get rid of that little slip of paper. Not now. Not ever. Maybe it’s because I don’t want to accept her dying. It’s just not fair.
I will never forget Ayelet Galena. I will have her in my thoughts every day. I will elevate her soul in the heavens every time I am patient with my children. Even though they are so young, I can say with certainty that Hindy and Seth are the best parents I know. Together, they brought this miracle into the world, and every day, they escorted her through it to her very last day, with grace, with strength, with hope. Ayelet Yakira Galena – you will never be forgotten. You will never stop having an impact on this world, because I know there are people like me who cannot, and will not, stop thinking about you.
Chanie Kirschner writes a weekly advice column for the Mother Nature Network.