01/12/05 10:18:00 - January 12, 2005

It still doesn’t seem real. It’s been almost a week and a half since I got that phone call, since I was awakened shortly after 4:00 AM, left my 5-year old son with a friend and raced to Tucson to hold the lifeless body of my baby, my 2 ½-year old girl for one last time.
It doesn’t seem real. I was there. I saw her face, her features grayed and sunken by death and her legs and back mottled by the blood her heart would no longer pump. I held her, supported her limp neck and limbs, thinking all the while, “She’s so cold. If only I could warm her up…”
It didn’t come completely as a surprise. Lily had been sick most of her life, and had come close to leaving us before. The first time, when she was about seven months old, everyone thought it a miracle when she pulled through. It seems somehow appropriate, though, that her long sickness ended up being framed by five-week hospitalizations. There’s even a symmetry to it. In her first one, things started out very bad and gradually got better until she was released. This time, things started out fairly routinely and gradually got worse… until she was released by death. Both of these involved pseudomonas sepsis and meningitis – though only suspected the first time, pseudomonas meningitis was her final cause of death.
How do I put the way I feel into words? I don’t even know if it’s possible. My baby girl is gone. My daughter, who had been spared so many times that we thought of hospitalizations as nothing more than a necessary inconvenience, isn’t going to come home. We were so close to a solution, too. We had finally convinced a doctor to look at her blood work – the scientific evidence of her immune disorder – rather than her “overall health”. She had been cleared for a bone marrow transplant, which should have taken place 2-6 weeks after she died. Had the transplant taken place three months earlier, she probably would have made it. It seems so unfair, like some sort of cosmic tease. She had overcome so much, I guess we just thought she would eventually pull through.
Now, we are the ones left trying to overcome. Loved ones’ deaths are often said to leave a gaping hole in the hearts of those left behind. But it’s so much more than a hole in my heart. It’s as though the fabric of my entire life has been turned to Swiss cheese, and I’m trying to negotiate around all the gaps where Lily used to be. There are reminders that she used to be here everywhere. Her bedroom, where we have sequestered most of her toys. The empty drawer that used to hold all of her movies (which have now been donated to the hospital). Her computer account, which had her favorite internet links – Teletubbies and Blue’s Clues. The holes in the air, every time we see a puppy, a kitten or a baby – where Lily would say, “LOOK! A PUPPY! IT’S SO CUTE!” It’s nearly impossible to avoid thinking about the holes she’s left. It’s almost like air rushing to fill a vacuum and the current inevitably carries my thoughts back to my loss. Even coming home from work will be nearly unbearable. Today will be the first time since I can remember that I will be greeted at home by my wife and son, but not my baby girl, hobbling along saying, “Look! Daddy come home!” and asking me to hold her.


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