The story behind Keira’s middle name

Keira Helen Lee is nearly 10 weeks old and getting bigger and cuter every day. Both Megan and I have had the pleasure of introducing her to so many of our friends and relatives over the past few weeks!

In mid-May, we’ll be bringing Keira to my cousin Maggie’s wedding, where she can meet many more relatives on my side of the family. It goes without saying that we’re excited, especially because we also named her after an aunt of mine who passed away a few years ago and who was such an important part of our family.

I wrote a column about my Aunt Helen back in July 2006 for the newspaper I then worked at, The Monticello Express. I thought I’d share that column again so you can see why Helen means so much to me, and why Keira was named in her honor. Thanks for reading.

 Aunt Helen beat the odds

Our relatives recently gathered together again to remember a passing family member.

My Aunt Helen, my mom’s youngest sister and one of seven siblings, died from neurofibromatosis on June 24, 2006. I was one of the pallbearers at her funeral, and it was an honor for me to serve that role.

Growing up, my sister Barbi, my cousins and I knew that Helen had some health problems, but it wasn’t until just recently that I learned how severe they were.

According to the National Institute of Neurological Disorders and Stroke, neurofibromatosis, or NF, is a genetic disorder of the nervous system that primarily affects the development and growth of nerve cell tissues. This disorder causes tumors to grow on nerves and produces other abnormalities such as skin changes and bone deformities.

An estimated 100,000 Americans have a neurofibromatosis disorder, which occurs in both sexes and in all races and ethnic groups.

Why these tumors occur still isn’t completely known, but it appears to be mainly related to mutations in genes that play key roles in suppressing tumor growth in the nervous system. These mutations keep the genes from making specific proteins that control cell production. Without these proteins, cells multiply out of control and form tumors.

NF was discovered in Helen when she was a teenager.

She had to undergo surgery at age 17 to remove a baseball-sized tumor in her head. Her doctors also gave a very grim diagnosis for her: that she wasn’t expected to live beyond her 20s.

The news was devastating to my family, but Helen never seemed to let it really affect her. She just accepted what her fate was, and made the most out of what was to remain of her life.

Helen lived with her parents for many years, and that house became the central gathering point for our many family get-togethers and reunions over the years.

For a lot of us nieces and nephews, life was about adjusting to being Asian in an American world, and trying to balance our lives with our parents’ lives and their ambitions, both for them and for us, their kids.

But going to see Aunt Helen meant we’d get a break from all that and just enjoy some quality fun time. As her younger brother Jimmy said at her funeral, Helen was always into how we the younger generation were doing, and we often saw her as a second parent–a testament to her nurturing nature.

I also got to re-connect with my cousin Howie at Helen’s funeral, and he brought up fun memories of how we cousins would spend the night at Helen’s, knowing it would be more like a party than a sleepover.

For one thing, being at Helen’s meant we’d get some fun foods like Shake & Bake or pizza. (Growing up on a pretty strict regimen of Chinese meals, anything non-Chinese was a treat for us back in the day.) I also remember Helen babysitting Barbi and me while our parents were gone for a week or so, and even joining us all on a multi-family excursion to Florida one year.

As time went on, however, Helen’s health continued to decline, and regular trips to the hospital became part of her life and ours.

On a weekend trip home from college, I was asked to take Helen on one of those hospital trips so she could get a checkup. Megan, whom I had only recently met and who came back with me to Chicago that time, met Helen for the first time on that outing, as we assisted her in and out of the car.

It was time-consuming, us taking Helen to the hospital and then us waiting while Helen went through her series of tests. But Megan and Helen really hit it off, and Megan told me later that she thought very highly of Helen and how she handled her situation with such grace.

And for me, seeing how Megan responded to Helen made me think so highly of Megan too.

Helen must have thought the same way. It probably wasn’t for at least a year or two when Megan and I were back in Chicago at a family gathering when Helen–now using a walker–came through my family’s front door and saw Megan.

The first thing out of Helen’s mouth, loudly and jovially: “Is that Megan??”

I don’t know if I had ever heard Helen speak so happily. It brought a huge smile to my face, as well as Megan’s.

But NF continued to do damage to Helen’s body, and she underwent more numerous surgeries over the years to remove the unstoppable growth of tumors inside her. And when our family could no longer properly care for her, Helen was moved to a nursing home.

We all continued to visit Helen there, but it got difficult to watch as she steadily lost control of her body. She couldn’t hear anymore, she could barely talk, and her muscles seized up to the point that she could not express any emotions-she was unable to smile anymore.

In mid-June, Barbi told us that a tumor was discovered growing in Helen’s neck. This tumor was inoperable, and it would eventually prevent Helen from being able to eat or breathe.

And Helen made it clear that she didn’t want to be kept alive. No feeding tube, no breathing hole. She was getting ready for the inevitable, and our family had to do the same.

Initially, Helen’s prognosis was that she would be week-to-week, and that her spirits otherwise were up, my mom told me. We made plans to go back to see Helen the last weekend in June.

But on June 24, Helen didn’t wake up.

According to my dad, Helen had actually done well and ate more than she had in quite a while, so everyone thought she would be on an upswing, possibly her last. But that morning, the medical staff couldn’t wake her, so her closest relatives nearby came for her final hours. She died peacefully in her sleep.

Megan and I were already headed to Chicago when we got the news. We had to turn around and come back to get clothes for her funeral, and we wouldn’t get to say good-bye to her in person.

But Helen’s funeral was certainly not just about mourning her passing. Sure, we were sad to see her leave our world, but we all knew she was finally free of the disease that had ravaged her body all these years.

Helen had lived to be 52 years old–two decades longer than that prognosis of not living beyond her 20s. And this fact brought great relief for everyone who knew her.

The night after Helen had died, I actually had a dream where we were all at her funeral. Once the service ended, Helen casually sat up in her casket, looked out at all of us, and smiled a full smile that she likely hadn’t been able to do since she was a teenager.

Then she climbed out of her casket and walked away, smiling the whole time.

I truly believe that this dream happened for a reason. Aunt Helen is on to her new adventure.

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~ by davidllee on April 29, 2010.

2 Responses to “The story behind Keira’s middle name”

  1. ..I’m looking for an ole E R Tec by the name of David Lee who was stationed with me at Bitburg,Germany and worked in the Hospitals E R room during the years of 1970-1973. David use to live at Marcus,IA back in or around 2005 when I came across your site.
    ..You have a BEAUTIFUL baby..! I have four and helped to raise many more. ” Con Grads on being a father…! ~~Rev.Ernest L. Trent

    • Hi Rev. Trent, thank you for the kind comments! Unfortunately I’m not the David Lee you’re asking about. I do hope that you and he will cross paths again soon. -Dave

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