Seventeen Years Ago, Plus or Minus a Day

door-349807_1280February 17, 1998. A Tuesday night. Or did it happen just after midnight, making it February 18? I don’t know. The medical records document every IV started, every vial of blood collected, every consent signed.

But they don’t document when I lost my daughter.

The process began Tuesday night. I know this because at 10 o’clock my daughter’s eyes fluttered open—an encouraging sign from her ICU bed as she awaited transfer to a trauma center for the euphemistic explanation of “a higher level of care.” But when my husband whispered, “Erin, you okay?” into her ear, she shook her head, and closed her eyes.

Is that when I lost her?

What went wrong? I asked the doctor on February 17. Nothing went wrong, he said. She’s too unstable. I didn’t do the lumbar puncture. One of her pupils has blown.

My daughter was careening towards brain death but nothing went wrong? Semantics, I suppose. Because when a 14-year-old girl walks into a hospital with a hacking cough and a nagging headache then leaves ventilated on a gurney in the back of an ambulance on the way to a trauma center, something most decidedly went wrong.

Maybe I lost her sometime during her medically-induced three-month-long coma. Eventually she opened her eyes, but in my mind that doesn’t count. By June she tracked objects, and by September she smiled. But those don’t count either.

Nothing counts, because nothing brings us back to February 16, 1998.

Hollywood, I’ve decided, is to blame, because I believed with all my heart—thanks to their wrapping-problems-up-in-an-hour world—that this could be fixed. That even when the situation crawled from days to months, one glorious morning Erin would sit up, rub her eyes, and ask what happened. We would be thrilled, but not surprised.

Along the way, though, something went wrong, and Erin didn’t follow the script.

In word math, “hospital” plus “loss” equals “death.” In Erin’s case there was not a physical death but a death of plans: plans of signed yearbooks and karaoke, of babysitting money and boyfriends. And that’s where her plans stop—or, rather, that’s where I stop them. Which means her plans never included driver’s ed or prom, children or a mortgage. They simply could not.

Here’s another word math equation: “trauma center” plus “medical experts” equals “cured.” In reality that equation needs one of those little equal-sign-with-the-line-through-it symbols, because there aren’t always cures. Or answers, or prognoses.

Most days I face forward, and see the people Erin helps: the students being taught by a teacher she inspired not to quit after his daughter was murdered by a former pupil—that teacher later nominated for Disney Teacher of the Year. Or the disabled people in Third World countries finally seated in wheelchairs of their own, no longer dragging themselves across dirt roads or relying on family members to carry them piggyback, thanks to Erin’s fundraising efforts for Free Wheelchair Mission.

Other days—days decreasing with the passage of time—I think back to that night seventeen years ago today when the doctor said that nothing went wrong. And I think how mistaken he was.

Because something indeed went very, very wrong.

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28 thoughts on “Seventeen Years Ago, Plus or Minus a Day

  1. Thank you Linda for being brave enough to share something so terribly personal and tragic. I feel the pain of loss coming through loud and clear and the injustice of not being able to label the frustration and sadness in the same terms of others who may be able to say ‘we lost him because this happened…’ correct me if I am wrong but you are blessed to still have Erin? Just not having the life you always planned for her….If this is the case then you made a girl with a strong heart who values your love greatly and who is still making life better for others by the sound of it. Your story has struck a chord as today is my son’s 20th birthday. Thinking of you all x

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    • Thank you, and happy birthday to your son! And yes, we are blessed to still have Erin. They believe, by process of elimination, that she contracted viral encephalitis (no test ever returned positive). She’s 31 now, and in a wheelchair. She’s unable to talk but uses an iPad for communication. Thankfully she’s cognitively intact…sarcastic sense of humor and all. But certainly, this is not the life any of us planned for her.

      I so appreciate your kind words. Today is always a challenge: draw the drapes and mourn, or make it the best day it can be? I aim for the latter. Anything else would be an injustice to Erin.

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      • Whilst you have the strength to utter such positive words, the events of seventeen years ago will remain an injustice but the fact that Erin can call you her mum was always meant to be, and you should wear that badge proudly. Rarely do we get things as we planned but it is how we handle those things we didn’t, that make us the people we are. Erin sounds like my kind of gal with the sarcasm and humour xx

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      • I so appreciate your kind words. I’ve stopped asking “why” because there is no answer, so why torture myself? But there were events during her hospitalization that point, decidedly, to her being here for a reason. Frankly, she should not have survived. One procedure she underwent, we found out later, had never been successful before. I took that as to mean had never been tried before, but months later the neurosurgeon said that no, no patient had ever survived the procedure. So apparently that girl of mine has work left to do. And she can’t do it alone, so she’s stuck with her dad and me! And yes, you two would get along if you’re a fan of sarcasm!

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      • I simply adore that phrase of yours ‘that girl of mine has work left to do’. I know today (yesterday here now it is 3.30am!) wasn’t easy but I hope your own words and the sheer overwhelming sense of purpose you both clearly have, gives you some tiny comfort. Don’t underestimate your powers as a duo, formidable and gutsy and you’ve kept a British lady awake half the night thousands of miles away! Gosh, you’re good! Lol xx

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      • Thank you again! I think Erin has more gutsiness than I do. Many times I’ve wondered if her life would be easier had she not been able-bodied for her first 14 years. But then, there’s so much she would have missed that she was able to enjoy and do. Most days I just put one foot in front of the other and try not to think too much. Get some rest now! xx

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  2. Thank you for being so brave and sharing this. You write so beautifully and with such love. My heart was broken reading your words, I can’t even begin to imagine what the death of a child must be like, particularly under these circumstances. Sending a hug from Scotland.

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    • Thank you. I appreciate your kindness. The tough part is, she survived (that didn’t sound right, did it?) but she’s permanently disabled–wheelchair bound with very little movement and unable to speak. So on one hand I still have my girl, but on the other she’s not the girl (I feel) she was born to be. Who knows, though? Maybe THIS is the life she was born to have and needed 14 years of perfect health to do whatever work she still has left to do. It keeps me up nights,I tell you. Hugs back from California.

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  3. Wow. Reading this, I almost broke down in tears at work. I am so sorry for what happened. I really hate say that because I don’t feel like it does justice for what you went through. I’m glad that you still have your daughter.

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    • Thank you. Such a cliche to say, “If it hadn’t happened to me, I never would have believed it,” but there you have it. And your words are perfect–sometimes “I’m sorry” is all one CAN say.

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  4. You have managed to describe the loss so eloquently…and the grief attached to it. I am sorry for what you, your family and of course, Erin had to endure. It sounds like she is still an inspirational young woman. But I can see the pain in your words of what could have been…

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    • Thank you. I feel like tipping over most days, tottering between remembering what could (or should) have been and what is. It’s probably a mother thing, because I don’t think Erin looks at life that way. I see her on Facebook reading about her high school friends now married and starting families–and smiling as she’s reading– and I wonder how she isn’t so completely, totally bitter. She is quite inspiring. Not sure I could do it.

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    • Thank you so much. She is quite a bit more amazing than I am, I’m afraid! She survived when she shouldn’t have, and I have to believe it was for a reason. It’s easy to wonder why her when there are terrible, horrible people in the world but I have faith that one day I’ll learn why. Until then, it’s just one foot in front of the other. I so appreciate your comment.

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    • And thank you for responding. The nitty-gritty of Erin’s situation was never the intent of my blog but when I saw the prompt and the dates on which the postings would fall, well, that was that.

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  5. Pingback: yeah write #201 challenge winnersyeah write

    • I don’t mind sharing at all, and thanks for asking.

      Erin’s got a quick mind and a sarcastic sense of humor. She loves all things Downton Abbey, and Anthropologie. She loves writing, although she types with a single finger because she has pretty much only gross motor skills, so it’s a very slow task. She returned to high school after missing almost a year, and graduated with her original class towards the top of her class.

      I’m not sure if life would be easier for her had she never had the ability to walk and talk. On one hand she had 14 years of a normal life, but on the other she had 14 years of a normal life… I’ve never asked her opinion. She’s dealt with this extremely well and I guess I’m afraid of pulling off scabs. She’s watched her 2 younger sisters have the milestones she never will but has been nothing but their champion throughout. I suppose you don’t know what you’re capable of until the situation arises, but right now I can say I’d never be able to thrive the way she does in the life she has.

      You shouldn’t have a sense of guilt. Believe me, it’s something I have–and continue–to wrestle with. It’s a cliche, but life goes on. It’s taken me a lot of years to realize my stagnation in life will not change what happened. It’s especially hard because ultimately a doctor was found responsible due to lack of initial treatment. I know he has a child now about 17 years old, because his wife was due right about the time this happened to Erin. So it would be easy to be eaten alive with resentment, but to what end? I’d be no good to Erin if this consumed me.

      Thanks again for asking; it’s something I wish more people would do. I so appreciate the opportunity to “talk” to you!

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      • Not a problem, I talk to people, sometimes. She sounds like my kind of people. I usually only type with one finger, too: my middle one.

        The decision not to be eat up with resentment is a wise one. I like this girl, already.

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  6. This took my breath away. I so admire your strength and your writing ability to express what happened to your family 17 years ago. I believe I have met Erin through her Downton Abbey blog. She’s quite remarkable.

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    • Yes, you have met her through her blog. I appreciate your kind words. She’s a lot tougher than she appears, that’s for sure. As I mentioned in another comment, she survived for a reason. There were numerous times we were told she “wouldn’t make it through the night,” and yet… Thank you again.

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