28 Comments So Far

  1. I can’t imagine what your family is going through. Whatever you need to write to get you through the day, you write. Whatever thoughts and feelings you have, you own them. They are yours. Share or don’t share. Friends and strangers alike are sending prayers and support to your family. Anyone with negative thoughts can keep them to themselves. You don’t need the burden on your shoulders of the burdens in their lives. Keep doing what you are doing and kudos to you for your strength. I have an 11 year old and I can’t even begin to imagine what you are going through. Please know that the Marbletown elementary families received notification of your family illness and we will help.

  2. Well, this is just my opinion, but I don’t really understand the issue. To me this is your blog and it kind of is about you. I mean of course it’s about Ana, but a blog is a place to share personal experiences and feelings, and this is your blog about your journey with Ana. I am a friend, but I am also a mom, and I completely relate to all of your feelings that you share here. You are going through a difficult experience, of course Ana’s experience is way worse than yours, but that’s not to say yours is not difficult. As a mom, I can’t imagine what you’re going through. My guess is that when you are at the hospital with Ana it is all about Ana as it should be, but here is a place that you can share your feelings and we can help as best we can. Of course you are scared, of course you have doubts, that doesn’t mean Ana is not getting great care and that you aren’t doing everything you possibly can for her. You are sharing your feelings and because of that people will have advice and concerns and that’s OK too. You are human and so are they, take it with a grain of salt and do what is right for you. If it helps you to “blog” your feelings to us that’s great, if another mom comes upon this and feels the same way and it helps them, even better…but the best will be when Ana is all better and you can look back on this and remember your feelings and marvel at how far you’ve all come.

  3. I check here constantly. It would be a shame if you stopped telling this story because of one or two people being upset because of this turn in your lives. Besides, ummm… who should REALLY be upset?? As you know with the cleft journey, there is ALWAYS someone who has an opinion – THE OPINION – and when that ‘one’ pops in it causes you more anxiety. Anecdote time; when Zach was born, I was at my mother’s house for a picnic. One of my mother’s childhood friends and her husband were there and a few of them were talking about their grandkids. I was a few feet away and the husband had his back to me, he didn’t know I was there. (the twins were just babies) My mother was telling the husband about Zach and his first surgery and getting ready for palate surgery, saying how well the surgery went and how he should see him now. (I was listening to this mind you) He threw his hands up in disgust and said, “nonoononoooo… I can’t look at that. I just can’t look at a face like that.” Needless to say, my mother, the wife and the other people there tried to shut him up because I.Was.Standing.Right.There!!! I didn’t know how to feel because it was a combination of everything: anger, shock, sadness, horror, mama-bear… But, I did know for sure at that moment anyone who felt like that didn’t deserve to know my child. Anyone who can’t handle the ‘ugly’ isn’t allowed in our lives to share when life is status-quo or ‘appears’ normal. I was told it was meant as ‘he was so upset and emotional about it that it brought him to tears.’ Whatever. These friends have been a peripheral in my life since before I was born, but that moment was a defining moment. No matter how much chocolate-sauce is put on a comment or thought that causes doubt or angst in another, especially when the ‘another’ is dealing AND handling a serious situation, the initial stab doesn’t heal. I know all I need to know about a person when it comes to what they say when they think no one is looking.
    I personally, would worry more if you suddenly stopped writing! It doesn’t go away just because you don’t write about it. And you shouldn’t stop writing because one or two people are upset about how you and your family are navigating this tsunami that just doesn’t seem to relent. As a mom, I want to know the ugly. The pain, the moments of good. The horrible thoughts as well as the moments when it seems as if a miracle is on the horizon. That IS life. If you stop writing I think plenty of people will feel all alone. So… how’s about you keep writing because some of us are selfish in NEEDING to know what’s going on? πŸ™‚ White light from me to you. XO

    • Thank you, Colleen. How awful for you – that comment! I remember when I was waiting for the train with Emily while she still wore the NAM before her lip repair, a guy was sitting next to me on a bench and he looked at her and shuddered. He was an old guy and I’m sure he didn’t realize how that came across, but I’ll never forget it. I remember telling him she would be fine.

  4. For me, this blog is an amazing account of one aspect of the human experience: a mother’s love. It has also built a pretty substantial support system for Ana. Right? How can that be a bad thing?

  5. Don’t ever apologize for sharing your thoughts and feelings on this blog. That is why we are reading, We check it morning, noon and night – sometimes obsessively, when we’re awaiting news. It keeps us connected, and we WANT to support all of you through this. Don’t let someONE cause you to question yourself or your motives. Just know that the rest of us are here for you.

  6. Well, I am glad that you blog. Since I don’t know you guys personally it has allowed me to keep updated on Ana. You shouldn’t have to apologize to anyone for any of your feelings or your posts. You are her mother and it is apparent that you are doing the utmost you can for her. Bless you all for what you have already been through with one child and are now enduring with your other child.

  7. And …p.s. Please know that my tired eyes and fingers and my Droid are not dancing together well tonight.

    Awesome info on Dr. Wu. I believe Ana is going to get the very best care that will restore her to health. This is very affrming! Sending healing energy tonight to Ana and love to you all.

  8. What anyou excellent post. Your writing on this blog has allowed all if us to know what is happening with Ana and all of you. Through it, I’ve been able to picture Ana drawing, know the incredible and painstaking work going into her diagnosis. I’ve smiled at dome things, laughed out loud at your wry observations, and cried in thinking of Ana in pain. And all of that has led to me and so many others being with Ana and your family in prayer, connection, and love.

    Please keep it up as you can. And please kniw I and my family are keeping that wondrous sweet girl in our thoughts and hearts!

  9. Don’t forget that someone someday might find your blog and read every single post because they are navigating their own experience as a parent. Your blog on Emily’s experience lit the way for many parents at NYU, we were pointed to it by Shelley! It was the first connection Tom and I made to another parent and child who were going through some of the things we were. You are doing a service, like any good writer, by helping people think outside of themselves and maybe about themselves. I check this blog because, over the years, and through cleftstories, your family has a place in my heart.

    Catherine (Noelle’s mom)

  10. Thank you so much for sharing in the way that you do Jackie. It means so much to Storey, Daniel and I to be connected to your family through your writing. Storey asks several times a day if we can check the blog for news. We are all on this journey with you, sending love, strength and prayers.

  11. Hi Jackie – please keep on doing what you are doing. It is not self indulgent but is really helping keeping us connected to you and to the strain you and the family are feeling as well as all the positive things you have spoken about. I really appreciate the time you take with each thing you write and all the information and news. I wait each day to read how Ana and your family are doing and it helps through all the confusion and stress. Without your blog I think that we would all be at see and disconnected so please, keep it up when you can. Thank you for all that you are doing to support all your friends and family through this blog. Take care and keep on keeping on, Mary-Ann

  12. I LOVE your blog and I think everything you have written is beautiful and honest and allows us to be a part of your life. I’ve always understood that it is just a small window cracked open slightly for us to peek into- and I know that what you feel and do each day is so much more. The blog is representation of the potential GOOD that comes from our modern ways of communicating -and look how it is generating support and financial means. I think it’s an amazingly miraculous thing.

  13. Yet another beautiful, amazing post that made me cry. Thank you, thank you, thank you to you and Ana for allowing us in to your experience in this way. In their own way whoever is criticizing you is probably trying to control an uncontrollable situation – I have compassion for their point of view but many of us don’t feel that way. As I have said before you are doing an amazing job and you don’t need to prove anything to anyone. None of us have walked in your shoes and therefore cannot truly understand what you are going through. But by opening up in this way you allow us to support you, and speaking for myself, that is a gift you are giving me. Another person going through the same thing would handle it in their own way, and that is ok, too. As long as Ana feels ok with your posts that is all that matters. She is 11! She is your baby! Obviously I could go on and on…Love to you.

  14. I don’t think you need to justify your reasons for blogging! There are entire companies formed for this specific reason… for families to share and receive support during times like this. (caringbridge is the one that comes to mind)

    I would hope writing on the blog is at times therapeutic for you. It must be hard to post every day but you are doing it for us too! Your writing is wonderful (really-really amazing… you should be writing books) and reading the comments from other people is nice. You and Ana are touching so many lives…. even people you haven’t met!

  15. I have to second what everyone else has said before me. I love the blog and your writing and so admire your strength and the way you advocate for Ana.

    This isn’t just Ana’s illness. It belongs to the whole family. Do what you need to do to get through it. Keep writing. Bitch and moan. Express your worries. Brag about your liver surgeon (so glad she’s in good hands!). We’re listening.

  16. Don’t let the tactless stuff resonate, pookie, you need all your strength. πŸ™‚

    Big hugs to the four of you! And woo-hoo for Dr. Wu!!!

  17. Hi Jackie and Jim,

    Oh my goodness! “Judge not…” One thing that I have learned in life is that unless you have gone through what someone else has gone through, you have no authority to judge…and EVEN THEN, EVERYONE processes events and emotions differently.
    I for one, feel as though I am getting to know my cousin, and his family for the first time…I feel terrible that it has to be under these circumstances, but am thankful to Ana and God that we are brought together through you.. Jackie.. and this blog.

    I don’t know of Emily’s illness as a baby, but am learning that you are all ONE TOUGH FAMILY !!! I am PROUD and honored to be an extended part of that family and if for one small second, I can donate a few dollars or say a few kind words to bolster YOU?? Then I am ALL OVER IT. πŸ™‚

    This is a very cathartic venue for you. You are obviously an artist, and artists need to express themselves. Don’t worry and don’t apologize for how you do it. If Ana and your family are good with it, then you just keep blogging.

    I look forward to the day that I can meet you -Jackie, Ana, Emily and see my cousin again.
    You are all an inspiration to me, and I thank you for your gift of sharing through this most difficult time..

    With much love and healing prayers and energy!!!


  18. Don’t you dare stop your blog! yes, this is happening to Ana, but she is your child, and it is also happening to you and Jim and Emily..and to everyone who loves Ana. Your blog is honest and eloquent and very very important…Look at it this way,,if you stop the blog I will be forced to retaliate by not bringing you Starbucks when we visit..

  19. Jackie,
    It’s good for you and good for us
    Keeps us connected and involved
    Energy, prayers, and love to
    Your family

  20. Hi Jackie, I can’t believe that people will say that. In this situation, tired emotionally and physically, pouring what we feel is extremely important, and don’t bother editing, you don’t have to.
    What I like from you is because you are so honest, open, and genuine. That what makes me ask and write to you when Joel was born. I didn’t reach other mom’s blog, because I felt at that time that you are someone I can look up to, someone I can really talk to. And you reached us back.
    Please keep us updated and please write the same way. We are praying for you continually and we want to know how your family going. This is your family’s blog, and I really want you to stay sane by writing your feelings.
    I am glad you get Youmin Wu πŸ™‚ that way you don’t have to go to China. I was so worried about Ana, I asked my mom and she told me that. Now that I think about it, it is kinda silly,lol…but yes lots of our friends have very successful chemo there.

  21. please please do NOT stop this blog!!!!!!! i want to no whats going on with ana!!!!! every day i check this blog and c if theres any new updates. and its not just me. i no a lot of people who live on your blogs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  22. As a parent who went through many years of crises with our son, I want to reassure you that you will make the best decisions possible based on your questions, research and gut beliefs. We humans never know everything but we love our children and try to make the best decisions. You are and will.

  23. Jackie,
    As this is your story and life, which has taken this hellish turn at the moment, you chose to tell it. And whoever wants to listen, share, laugh, and cry with you, will do so. Keep it coming.
    xoxo Lina
    P.S. Fantastic with Dr. Wu!!

  24. Jackie,
    Cry and complain and say whatever you need to say however you need to say it. Most of us are reading your words with compassion, not judgement. I see an amazing family going through hell together, managing to stay strong and sane somehow. Ana couldn’t be in better hands- good doctors and parents who will do what needs to be done to get her through this nightmare.
    You all remain in my prayers.

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