Having a child like Nashi has been a huge strain on our family. Our littler child, Hyman (he's six) often voices his displeasure at having an older sister who cannot play or run around like he can; and due to all the attention that she gets, he, naturally, gets jealous; he often says he hates her, wishes that she was dead, which stabs our hearts.

We try to spend as much time with our younger child, but invariably it isn't long before our attention is diverted back to the older child--and it is the older child who needs more care; Hyman has been forced to become the big brother to his sister, even though, in real life, he's the younger one. Hyman's also the mature one, the one who can be expected to help out whenever it is needed--and then we feel guilty because we are robbing our son out of a normal childhood.

A six-year-old shouldn't have to be knowledgeable about things like tube feedings, or how to change a diaper, or how to call for an ambulance when his sister falls ill; yet this is his life, and he often resents it. We do too, because it is something that is totally beyond our control, and we feel like terrible parents.

Like now, as an example. I sit here at Nashi's bedside here at Nashville Memorial Hospital, where she is currently in the Pediatric Intensive Care unit, fighting off yet another round of pneumonia. She is doing a little better, I am glad to say, but she is still plenty enough sick, and it will be a while before she is back to where she was. Her lungs are weak, and right now they have her knocked out, so she doesn't pull out the respirator tube that's in her throat, or the other tubes that's invaded her body.

Nashi's hooked up to a bank of monitors and machines; these record her vital signs, let us know how she is doing, and it bothers me to see her lying so still, unable to move, blink, hear, see, communicate. It's as though she is a living corpse, and it is very unsettling.

Unfortunately, this isn't the first time we've been down this road. Because of her inability to fight off infection, any little thing can turn into a major production for a child like Nashi. Who knows what the next time will bring; in fact, the next time could be the very last time we see our daughter alive--and then what are we going to do??

Even with all her medical problems, her disabilities, we cannot imagine our world without Nashi. She's brought us nothing but joy (and yes, even heartbreak), and every day that she's with us can be counted on as yet another God-given miracle.

Hopefully the next time I write will be better news. Lord, I hope so; these hospital couches aren't the most comfortable things to sleep on, and I hate worrying about whether Nashi is going to have another breathing episode, another "Code: Blue"!!

Will write in here again soon; stay tuned~

~Terri Ben Ami, Nashi's mom. :(