Janet Congero, 35, lives in Fort Myers with her husband, James Andersen, 37, and son, Andrew, 7. The Andersen’s 2-year-old daughter, Rylee, died in January 2010 from mitochondrial disease.
"Since Rylee, dates and years don’t mean much. She was pretty spunky, I mean, for a sick kid. She was a pain. But she was a cute pain. She had attitude. She had spunk. She could be angry and she could be the happiest thing ever.
We knew pretty much at birth that something was wrong and everyone was like: ‘she’s fine. She’s fine. She’s fine. She’s fine.’ Then finally, at five and a half weeks I was like: ‘she’s not fine. Something’s wrong here.’
And it just escalated — seizures, not able to swallow. Gradually something else would go. In the end, in November, her kidneys started to fail and she went into acute renal failure.
She had mitochondrial disease, which is not very well known. We didn’t find out for a very long time. Her preliminary diagnosis came at May or June in 2009. It was confirmed in the fall and she passed away Jan. 10.
They just kept telling us ‘we think it’s this, we think it’s that, we think it’s this’. Test after test after test and we’d think: ‘this is going to work.’ And it just never did. She started getting sicker and sicker. Our pediatrician was like: ‘don’t worry about it. I don’t think that’s what it is.’
When I looked up what mitochondrial disease was, I couldn’t go there because all I saw there was no cure, no treatment and most kids don’t make it past 18. I was like: ‘oh thank God they don’t think she has it.’ And then the phone rang and the doctor said it had come back positive.
We went through periods that were better than others. There was a period where she walked, she talked, she ate. And we have great pictures of those moments. People are like: ‘oh, she’s happy.’ That was like an hour out of the day. We cherish those hours. But it was an hour out of the day and the rest of it she was crying in pain.
I was her caretaker. He (James) got to go to work. So for him, I think he can focus more on those aspects of looking at the pictures and seeing the cupcake or seeing her do the fun things or being happy. I was the one who was always in the hospital. I was the one who always took her to the doctor’s appointments. I was the one who knew her schedule enough to know when she would have that good hour so we could schedule things. So I was the one who made those memories for everyone else to have. There was a lot of work that went into getting that good hour.
See that picture, right there? That was some of the last pictures that were taken of her, probably a year before she passed away. That was that hour where we thought she’d be OK. And she did a fabulous job. Leading up to that was hell. Afterwards was hell. But we have fabulous pictures. And that’s what we show everybody. I want them to remember that part of her.
I knew she had this illness that was getting worse and I knew that ultimately she probably wouldn’t make it. So I started getting myself ready for that one day. We didn’t know she was going to pass away when she did. We thought we had a lot more time.
And I’ve learned that you’re not prepared. You really can’t explain it until that moment happens or those moments are happening. For us it was three hours of pure hell.
She passed away at 7:57 P.M., three weeks shy of her third birthday. It happened Sunday. We were sitting on that couch.
You go to sleep at night and you picture yourself on the couch listening to her gasp for breath and go minutes in between, and gasp again — for three hours. And so that’s all you hear. That’s all you see when you close your eyes. And it’s over and over and over again.
I can’t close my eyes without hearing it. I can’t. I don’t think a moment goes by in the day where I don’t think about that moment of realizing. They call it the “death rattle”. I’m in the medical profession but I’d only heard it one other time — it was when my grandfather was dying. So as soon as she did it I knew instantly she was dying.
I’d gone in her room to wake her up from her nap and she was like: “Mama.” She was fine. Two seconds later I watched her eyes roll back and heard this huge gasp for air. Everything sunk in.
I sat with her in her bedroom in a chair until I could hear the garage door. I was just begging her: ‘please wait ‘till daddy gets home. Please wait ‘till daddy gets home. Please wait.’ I just kept saying that over and over and over and over again.
She was on me. I felt her leave. I felt every second of the whole thing. And then having to turn to everyone else and say that she was gone.
She passed away at 7:57, but she wasn’t taken out of my arms until 10 something. I know that sounds crazy. And I would have kept her longer. But the hospice nurse came and said: ‘Do you want me to take her from you?’
Can you imagine taking your child? And watching my husband carry his daughter to a morgue van?
I held her all the time. But the last three months I probably held her 22 hours out of the day. And then all of a sudden your arms are empty.
For me, Jan. 10 was yesterday. Jan. 10 is today. Jan. 10 is tomorrow. Time stopped. It’s 7:57 Jan. 10 every day now. That last breath is every day. But for everybody else the world kept moving.”
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