Pride

My long absence from this blog is partly attributable to the business of my life, i.e., raising two young children, overseeing the looming renovations, spending quality time with my husband and in general taking care of home and hearth. For example, on a recent Thursday, I started my day with dropping the kids off at school; then I went to the Apple Store to make a product return; then I attended a meeting with my architect and designer; then I picked up Isabelle from school and then dropped her off at dance class; then I went to pick up Mia at the bus stop, but then the bus got into a minor accident so I had to go pick her up from the accident site; and then I had to rush back to oversee a kick-off meeting for the renovations with my building’s property manager, super, my contractor and all the subcontractors and my architect. As I have often said, I have no idea how I ever had a paying job. Then, there’s also dealing with the side effects of treatment which has made me need sleep as never before; thus, no more staying up late or getting up in the middle of the night to write.

My absence is also partly attributable to my feeling that I have nothing profound to say, nothing particularly inspiring or wise or smart that is thought through, so I’ve said nothing. I have come to expect of myself, rightly or wrongly, that all my posts here should have some greater significance, some greater message than the happenings of my little life (including my medical updates); otherwise, my words mean nothing to anyone other than my closest family. The last thing I want is for this blog to become a litany of my complaints and a constant depressing foray into my bitter and jealousy-ridden darkness. It should serve a higher purpose than that. And since I’m not one to write about false cheerfulness and fanciful hopes and meaningless statements of positivity, I’ve maintained my silence until I felt I had something worthwhile to say.

Finally, my absence is in part attributable to the receipt of some disappointing news—a rise in my CEA after months of decreases from 33 to 3.7 and no doubt an indication of the imminent failure of my current treatment—days before Christmas and worry about some troubling numbness in my right arm and hand. This has made me fall again into a somewhat reclusive state where I’ve spent much time thinking about death and how to prepare my family for my inevitable demise. As I lay crying between my girls one night, Isabelle told me that her wish to Santa Claus was that there could be another one of me that wasn’t sick. My heart shattered into a million little pieces upon hearing that, not only because of the deep love and sadness those words conveyed but also because of my own wonder and pride at the unusual and ever-present sensitivity and precociousness of this 4 year old I somehow brought into this world. Sometimes, I hug Isabelle so tightly as if in doing so she with all her other-worldly sensibilities could save me, her child’s magic that harkens back to the powers of Santa Claus would somehow cure me of this disease. A desperate mother’s fantasies.

The holidays are a difficult time for me, especially since I received news of my incurable status at the same time last year. And then of course, there are all those associations with being with family, which leaves me wondering how many more holidays will I get to be with the ones I love, and with joy, light and optimism, sentiments which I could not genuinely embrace.

When the walls close in, I start thinking more intently about preparing for my death. In particular, I think about what I want to say in the letters to my children I intend to write. Some parents leave birthday cards and presents and for every other momentous occasion of their children’s lives they can think of. I’ve never been one to care much about birthdays, presents or cards – I credit that to my Chinese upbringing when we stopped making a big deal of birthdays around age 10 and we always receive the best presents of all – cash. Barring some very meaningful and special gift or card, I’ve always been baffled and even annoyed at the tradition of exchanging gifts that nobody really wants when money would be so much more practical, not to mention the practice of delivering cards on those occasions when you’re supposed to deliver cards with trite sentiments that invariably are thrown in the trash. I know – I’m such a Grinch devoid of sentimentality. But in any case, I always knew that cards and gifts would never be what I left for my children. They will inherit plenty of money from me (which in my Chinese way is of the utmost importance). But perhaps equally as important, they will have the gift of this blog and the letters and videos I will soon make.

Recently, I’ve been thinking a lot about the first letter I want to write just to Mia. So now, I’m writing it. I’ve decided to share the letter because…well why not? The letter isn’t really about her, although it is to her. It’s about her mother and how she felt, feelings that I think will resonate with many mothers. And maybe just by sharing this and other letters, other mothers in my position will find the strength to record these incredibly painful feelings for their own children.

***

Dear Mia,

After seven months of private lessons, you had your first violin recital a few weeks ago, on December 12, a Saturday at 2:30 p.m. in a little room at the Brooklyn Music School. From the beginning your teacher said you were talented, but I couldn’t see it for quite some time. And then a few weeks before your recital when you learned a new song within minutes, your teacher told me you could start competing in a couple years and that I should look into music programs for you at Julliard. Julliard!!! My child at Julliard – I couldn’t believe it.  I was bursting with pride!

You see, Mia, I always wanted to play an instrument, the violin or piano in particular; I always wanted to be musical, but alas I had no inherent ability; I can’t identify notes with my ear, and I couldn’t read music because of my impaired vision. I couldn’t even make it into the school chorus.  Besides, my Chinese family was way too pragmatic for something as trivial as music or any other art. I come from a long line of impoverished Chinese villagers who farmed the land and then emigrated to Vietnam to try selling things, anything to make money, to become part of the famed Chinese merchant class that comprises much of the global Chinese diaspora. They didn’t care about the arts or anything that didn’t involve making money for that matter. It was no different when we came to this country. Finding a way to survive in a new country was much more important than the arts to Gong and Neh, as it should have been.

Gong and Neh, however, did care about education and insisted that I should focus on school. In fact, Neh wouldn’t even teach me how to cook or let me help her with chores because she wanted me always to do my homework. At first, I went to the school for the visually impaired, where the objective was to progress its students to where they could be mainstreamed into a regular school setting. I was there for 1.5 years and then they determined that I could move on. It was hard transitioning to the regular school with all the kids who could see better and read better and speak better. It took me 3 years to read on grade level . And then in 5th grade, things started to click and academics became easy for me (even if I could never catch a ball). I started getting straight A’s and that’s pretty much how it remained through high school.

I would win scholarships offered at the local Chinese cultural association. I won speech competitions. I was accepted into some of the best colleges in the country. I consistently outperformed my siblings and cousins and other kids in school in all standardized tests. It was the greatest irony of all – the blind girl was smart. Who would have thought?

And despite my inauspicious beginnings in this world and my father’s contributions to those inauspicious beginnings, he was so so very proud of me, to the point where I was rather embarrassed. In Vietnamese, you say your nose is expanding when you’re proud. During our many long car rides together as he drove me to and from the orthodontist, eye doctors and group study sessions and as we talked about where I (and he) wanted me to go to college, he’d tell me and everyone else in the car how his nose was so big it was going to pop. His nose would go up high in the air; his shoulders were straighter; his pride in me was evident to the world. You see, Gong, had his own dreams once upon a time. He was smart too and he was interested in the world, but he had the equivalent of a junior high school education. Back then in Vietnam, you had to go elsewhere if you wanted to get a higher education. He wanted to go to Taiwan and continue his education, but there was no money for that in a family with five boys and countless cousins and nephews. Through me, his broken pride was healed and he fulfilled his dreams. And now, though you, I have fulfilled some of my dreams.

With your violin recital, I finally understood the depth of the pride Gong had and has for me. I get it, Mia. I get it. I couldn’t sleep before your recital. I baked cookies that morning to keep myself busy. I kept telling you not to be nervous and that you would do great, but the reality was that I was a thousand times more nervous than you. I was so afraid you would be immobilized by nerves and that you would be traumatized for life. But then you went up there looking so tall and graceful with such calm and poise and you played both songs beautifully. You were objectively the best there and you knew it and you were so happy and proud of yourself. I couldn’t have been more proud and ecstatic myself. In fact, I think I felt more pride in your single achievement than I ever did in any of mine. Perhaps you will understand one day when you have your own children.

You won’t remember the occasion in time so here are links to the videos Daddy recorded which we put on Youtube. Please don’t be mad at Mommy for sharing. I’m just so incredibly proud, I can’t help it.

http://youtu.be/TlHSJ3QdH3g

http://youtu.be/eGKrg3aqZT8

You are my firstborn so you are the one who has taught me and continues to teach me about what it is to be a mother and how to be a mother. And I’m sure I fail often but know that I try my best, always.

I don’t care if you ever become a professional violinist; in fact, I would probably dissuade you from becoming a profession musician if I were around – no money – but one of my greatest desires for you is for you to learn to derive pride and joy from your own excellence, in much the same way that I learned to take pride and joy in my own academic achievements. Excellence garners respect from others, but more importantly, it lays a path towards a greater sense of self, of self-respect and self-love, which is the most important gift you can bestow on yourself. You clearly were born with a talent for music that most people do not have. I want you to exploit your talents, whether it be with respect to music or something else. But understand that even with talent, you must work hard at everything you do to achieve that excellence which I so want you to revel in. That is my advice for you now, my sweet girl.

I can never express to you how my dream of seeing you perform at Julliard or doing something else equally as amazing where you find joy in your excellence and talents keeps me going, how those dreams are what keep me fighting to live as long as I can. But know, that that is indeed the truth, my truth in the very core of my being.

I love you always and forever, to infinity and beyond.

Mommy

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16 Comments (+add yours?)

  1. Mirna
    Jan 04, 2016 @ 13:41:11

    beautiful letter, julie!! thinking of you and sending you my love.

    Reply

  2. Katie Vogler
    Jan 04, 2016 @ 14:05:33

    Thank you for the post, and for sharing your letter to Mia. It is beautiful. I often think about what to write to my kids, but I can’t seem to put pen to paper. How much has your CEA increased? I assume it was a large jump, or else you wouldn’t be so concerned.

    Love and hugs, Katie

    Reply

    • julielyyip
      Jan 05, 2016 @ 10:06:03

      You are a great writer, Katie. You will know what to write when the time comes. Your situation is more encouraging than mine. My CEA rose one point. I know not a big deal in a big scheme of things but it has always foreshadowed growth. It doesn’t tend to fluctuate, rather it tends to maintain its trends. Love to you too.

      Reply

  3. Barbara Gettelman
    Jan 04, 2016 @ 14:17:07

    I find ALL of your posts profound and none more than this one. Your audience is so much larger than those many family members and friends that are suffering with and understand intimately your journey. You speak to me and I am probably one of the “lucky” ones, so far. You speak to me more than anyone else I have ever heard including rabbis and philosophers. Please, please keep sharing those mundane observations that may not seem dazzling to you but are so piercing to others. I have invited you and your extended family to Montana or to Sun Valley. I would not be there. I have often though of coming to see you, though I know it would be an imposition. I am not ill, I am not particularly anything (except I used to be funny). I would travel 3,000 to spend an hour with you, especially if I could help you in any way. I am wise.

    Think on it.

    Barbara

    Reply

    • julielyyip
      Jan 05, 2016 @ 10:08:02

      Thank you, Barbara, for your words and your invitation. I will think about it. And it would not be an imposition at all to meet you were you to come to New York City. I would in fact find it incredibly flattering and would love to meet you in person.

      Reply

  4. Dana Tipton
    Jan 04, 2016 @ 14:18:01

    simply beautiful.

    Reply

  5. Justin
    Jan 04, 2016 @ 20:38:25

    Hell of a post. You’ve made me tear up when I am supposed to be working. And this line really stuck out: “one of my greatest desires for you is for you to learn to derive joy from your own excellence.” That is such a brilliant way to put it, Julie.

    Reply

  6. William Simpson
    Jan 05, 2016 @ 10:41:11

    Hi, Julie. It’s so good to receive your new post. It’s been too long. Thank you, Bill

    Reply

  7. Lisa
    Jan 06, 2016 @ 04:24:11

    Julie I am sad to read about the CEA increase. Your letter is precious and meaningful and a gift. Thanks for sharing it with us.

    Reply

  8. Rebecca
    Jan 06, 2016 @ 05:05:23

    Wait! There is another medicine available from USC. It’s called TAS102 (oral pills). It just became available in August, 2015. I am sorry to hear about your CEA. Mine is a good indicator as well. I have done the same regimen 4 times so far. I refused to know my CEA. The skin side effect seems to worsen on my body.

    Anyway, please contact USC and ask about this new drug.

    Reply

    • julielyyip
      Jan 12, 2016 @ 18:11:22

      I am well aware o lonsurf. It is the most recently approved drug by the FDA and is available broadly. Quite frankly I’ve not been impressed with the clinical data

      Reply

      • beckywdesigns
        Feb 10, 2016 @ 01:50:15

        Yeah, I am aware of the not-that-impressive data. I talked to Dr. Lenz’s nurse practitioner and expressed or complained about my frustration over the available drugs out there for colon cancer. (At that time, my option were left to be Ertibux and maybe clinical trials.) She told me, “Rebecca, you should be glad that you still have options.” @_@ Ok, I guess I should jump up and down and happy that my life would get to be “extended” for a few more months. Feeling very frustrated……

  9. Kelly
    Jan 10, 2016 @ 11:59:56

    I found your blog while perusing the net about colon cancer. My husband (48 yo.) was diagnosed in Oct 2014. We are here in the hospital now, awaiting his HIPEC surgery on Tues. It has been a very overwhelming and scary journey for us. We have 2 young children (11&8). I am so glad I stumbled upon your blog…your are a fabulous writer and I have appreciated your insight and reflections. Wishing you peace and loving moments with your family. I hope to read lots more from you.

    Reply

    • julielyyip
      Jan 12, 2016 @ 18:09:19

      Thank you. I hope your husband’s surgery went well. I understand how overwhelming had scary it can be. But just breathe and take it one day at a time.

      Reply

  10. Won
    Mar 08, 2016 @ 13:35:51

    Thank you Julie, for sharing something so special. You have been such an inspiration. There are many who feels, but cannot express. Your post have helped me to understand my sister better. She too is having to deal with colon cancer

    Reply

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