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A Mother's Fear

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JESSICA FEIN
Jessica Fein

I'm back in the PICU having spent exactly 27 hours "on the outside." After 42 days in intensive care with my 9-year-old daughter due to a cold that became pneumonia that led to a month-long intubation, we thought we were in the clear when we were transferred to rehab. But the virus returned, and a day later we were back in the same room in the PICU, all of us much worse for the wear.

Because now we know that this illness is most likely not a fluke... that her body quite possibly has become so weak from her underlying mitochondrial disease that it simply can't contend with the germs and the bugs and the viruses and infections that are part of life. Maybe we'll emerge from this particular crisis unscathed. But there's a good chance she'll need a tracheotomy as a permanent way to deal with her body's secretions and keep her airways clear, now or at some point in the future. And in her case (which is not the case for all people with tracheotomies) that means she would likely lose the ability to speak.

And I'm scared.

So I remind myself of how scared I was four years ago when we first learned that my daughter would need hearing aides. I was overwhelmed by the idea, worried that she'd be self-conscious and that her peers would be put off. I spent hours upon hours looking for a good book about kids with hearing aides and ordered all kinds of tube riders to decorate her new devices. And in the end, the scariest thing about the hearing aides turned out to be the time she flushed one down the toilet and we had to shell out $3,000 to replace it. They are unobtrusive and they even came in purple, my daughter's favorite color. She thinks nothing of them, other than relief that they help her hear better. She was even able to get a pair for her American Girl doll.

And I remember how petrified I was when we were told that my daughter's degenerative disease would likely land her in a wheelchair by third grade. She beat that prediction by three years, getting her purple wheelchair while still in kindergarten. Of course it's hard and it stinks to be a kid in a wheelchair. She spends far too much time on the sidelines and is totally reliant on other people to get around. But scary? Not at all. And yes, her American Girl doll has a rocking wheelchair, too.

And yet I can't wrap my head around how scary it would be for her not to be able to speak and for us never to hear her sweet voice again.

But then my friend reminds me that she will always be the same vivacious and compassionate and kind person she is now even if she can't speak. And another assures me she will find new ways to communicate... that she won't lose her voice even if she can no longer talk. And my engineer friend promises that we'll develop a system for her to make herself heard. And I believe all of them. So I hold out hope that if and when we reach this next hurdle we will approach it courageously and gracefully. That we will learn from others who have traveled this road before us. And that it won't take long for us to find new ways to listen and to hear exactly what our daughter has to say... because if there's one thing we've learned from the person she's become and remained throughout all of her struggles it's that she is not one to remain silent.