I lost my five-year-old to an impossible-to-spot illness

One day, in late 2012, my then-five-year-old daughter, Olivia, complained that her ear was hurting. My husband, Glenn, took her to a walk-in clinic, where she was prescribed amoxicillin. When I got home and heard that Glenn had given her the first dose, I remembered that years before, she had developed spots after taking it. Back then, the doctor said that the reaction was common and she would likely grow out of it.

A couple of days later, on Wednesday, she sang in her end-of-year concert. On the last day of school, Friday, she was sent home after complaining that she wasn’t feeling well. I pulled up her shirt and noticed a couple of spots on her belly. Back to another doctor, who checked her ears, did a once-over and told us that it’s probably a reaction and to stop giving her the antibiotic. “Go home,” he said.

On Sunday, there were more spots, and they were looking purplish. Olivia was so self-conscious about the spots making her look “ugly” that she didn’t want to go to our family Christmas event. She changed her mind when I gave her a pretty dress and my fur wedding stole as a cover-up. But when we got there, she was clearly out of sorts. She sat and watched movies. My cousin, a paramedic, took a look at her and said that she was probably dehydrated and to give her a couple of Popsicles when we got home. She refused to drink or eat anything, though—even the Popsicles. The next day, on Christmas Eve, Glenn took her to the emergency room. “There’s nothing wrong with her; it’s just a reaction,” the ER doctor said after taking her temperature and giving her a once-over. “Give her Tylenol and time.”

Tylenol and time.

Olivia vomited most of the night. When she woke up on Christmas Day, it was late, around 11 a.m. We tried to give her fluids, but she threw them up. We managed to get little sips into her and she spent the morning on the couch resting. Occasionally she would throw up her drink and we’d soothe her, clean her up and try to get on with it. It was just like a dozen tummy upsets we had seen before—just with purple spots. She was well enough to open some of her Christmas presents around 3 p.m., and we took pictures of her tearing open a Monster High doll that I swore to the moon I’d never buy her. But after what happened at Sandy Hook, I decided that life is short and vowed to buy her this thing she wanted so very badly.

Her face lit up. That precious thing was hers.

I set aside our Christmas dinner plans and made Olivia her favourite meal: roast chicken with rice and gravy. I wanted so badly for her to eat and, when it came out of the oven, she perked up and ate. While I puttered with our main meal, she and Glenn snuggled on the couch and watched Scooby-Doo, just as they always did. Olivia was rallying, and I knew that we had turned a corner and that tomorrow would be better. We would open the rest of her presents. We would have the dessert I had made. We would be past it.

Glenn carried her on his back up the stairs, like he always did.

I didn’t say goodnight. I didn’t say “I love you.” I didn’t say “See you tomorrow,” like I always did.

After dinner, Glenn and I shared a well-deserved bottle of wine and headed to bed. The next morning, I ate leftover stollen and Christmas cake, drank a coffee, Facebooked and chatted with friends, all the while waiting for Olivia to wake up. Knowing how late she had slept in the day before, I didn’t want to disturb her. But finally, it was getting close to the time we had to leave for our Boxing Day event at our in-laws, so I went to wake her.

She was in bed. She looked as if she was sleeping. But she wasn’t. Olivia had passed away, probably in the early morning hours.

What happened next, I will not put into words. I can’t. Just pure emotion. Pure hell.

***

We know now that, despite all appearances, Olivia wasn’t a well little girl. We have been told that she likely contracted a bacterial infection weeks, months and maybe even years before, likely through a bite or a scrape. Normally, the bacteria would have resulted in an infection just on the surface of the skin. In her case, we think the bite or scrape happened when her immune system was compromised by a cold or flu and the bacteria travelled into her bloodstream. Gradually, over all that time, it slowly chipped away at her immune system, causing all those ear infections and minor illnesses.

No one caught it because it couldn’t be caught. It would be like trying to find something invisible.

We’ll never know for sure what happened next. All we have are guesses from two different coroners. Most likely, she contracted mononucleosis. Because the bacteria had essentially destroyed her immune system, she had no immune response. While suffering through mono, she developed a blood infection and likely passed away from a cardiac event caused by severe septicemia—blood poisoning—that three separate medical professionals didn’t catch.

Why wasn’t the mono caught? She had an asymptomatic type—meaning all of the problems and none of the symptoms. Testing for it would have been like coming in for a splinter and asking for a brain scan. The coroner insists that it could not have been found. It would not have been found. Even if I had screamed in the ER that she had mono, I would have been told “No, she can’t.”

And yet, every day, I think I failed my baby.

I think about how I didn’t say “See you tomorrow” before she went up to bed on Christmas Eve. I said it every night but not that night, and I know that’s why she died.

Irrational. But that’s where your mind goes.

Sometimes at night, as I lie there and stare at the ceiling, unable to sleep, I think that she just burned up, like a shooting star. That all of her brightness and charm and beauty were just too much. That she used herself up and just winked out. That she simply decided she had experienced enough and had no more reason to stay. That we overloved her and burned her up like a candle.

Every day, I think I failed my baby. But every day, I have to wipe my eyes, smooth my clothes, put a smile on and do things that normal people do, while inside every fibre of me wants to break apart from grief. My most precious possession is gone.

Today was no different from any other. I woke up, I cried, I wiped my eyes and I got on with it. I have to open the door to my house every day, go to work, earn money, make dinner, mow the lawn, go on vacation and celebrate invisible birthdays with laughs and tears, because that is all that I can do. There is no other way.

Unless I give in and go away. Many times since Olivia passed away, I’ve decided that it is probably best to just join her. But I’m not a person of faith; I don’t believe in anything after death. There is no after. There is no next. I realized that I couldn’t join her and that it would be pointless to try to do so. It would just lead to more heartache for the people left behind.

Then, one day last month, I was tidying Olivia’s room when I experienced an overwhelming feeling of calm for the first time since she died. I was looking at her bed, remade with her toys and blankets, and I knew I would see her again. With absolute clarity in that moment, I had the feeling that she was on an incredible vacation, like camp, and that she was just gone for now. And I heard a voice saying “You have to be patient.” I’ve never experienced anything like it, and you can call me crazy if you’d like, that’s fine. But the idea that I just had to be patient? Just wait a while? I can do that.

So every night before I go to bed, I count. I count the time until I see her again. I’ve randomly chosen a date in the future—June 27, 2064, my 87th birthday—and I’ve decided that on that day, I will lay down, look at her picture (and the picture of my husband because I’m too stubborn to let him go last) and I will decide that I’ve been patient enough. I will go to sleep. And I will see her again.

Only 422,798 more hours left. Until then.

Jennifer White is now a mother of three. She is the founder of Wishes for Olivia, a not-for-profit fundraising organization that raises money for the Make-a-Wish Foundation of Canada in Olivia’s name. Their gala fundraising event, The Princess Ball, takes place in April. Visit theprincessball.com for more information.

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