Carnations for Jessica

So. Wow.  I wrote “For Jessica” as a way to describe to friends what is happening with my daughter and how I’m feeling about it, since it’s very hard for me to talk about it. 


Then I shared the link on Twitter and Facebook.  Of the few hundred people to whom I’m linked by these sites, I figured ten of the people closest to me would read the post, and maybe three would leave encouraging remarks.


The next thing I knew, I was moderating hundreds of comments and my web master was e-mailing me, going, “You got twenty-two thousand hits in one day.”


So. Wow.


Lessons learned:

  1. The universe may on occasion suck, but it is full of kind-hearted people who would, in the words of one commenter, give a small piece of their souls to make it better. I don’t think it’s possible for me to express how much the support, generosity, and kindness of absolute strangers has buoyed me and given me more much faith in the future than I have had in a long time. Thank you.
  2. My ex-husband was not barking questions.  He was asking them.
  3. All teasing aside, my ex-husband is, in fact, amazingly tolerant when you e-mail him, saying, “You should probably read this before the rest of the universe does.”  My daughter is lucky to have him as a father, and I’m lucky to have him as a friend.
  4. You are not alone. I am not alone.  Before I break out into a verse of “Kumbaya,” let me just say that what touched me most was when people wrote to me and said, “I thought I was the only . . .” and how glad they were to find out they are not.
  5. Spam comments are pretty funny when taken in the context of the intensity of this post and the response it generated. The spam comments are like little clueless space aliens wandering around Earth.
  6. My friends mock me for having the plainest blog in the universe.  I have always said that the words matter. Not that I don’t appreciate design as much as the next person. Just that when you have a limited amount of time, resources, and energy, you have to put them in the words, not in the bells and whistles. Thank you for helping me prove that it’s the words that matter.
  7. You guys have so many stories to tell.  I hope you will tell them, and that you will tell me when you’ve told them. One commenter remarked that it isn’t “Welcome to Holland,” it’s “Welcome to Cambodia.” I want to read her story. I want to read all of them.

Many of you have asked where you can send carnations to Jessica at the hospital. I am so moved by how so many people want to make one little girl’s day a little brighter.  I have given information to several people whom I know personally, so rest assured that Jessica will be surrounded by red carnations as soon as she wakes up from surgery. For anyone else feeling moved to do something for Jessica, I would love it if you would donate what flowers would cost to the Tuberous Sclerosis Alliance instead. This is the organization that supports research into the congenital disease Jessica has.  You can find out more information, including ways to donate, at


If there is another cause dear to your heart, please give to that instead. And call it a carnation for Jessica.


Many of you have also asked why I don’t write a book about my experiences with Jessica.  I have.  My agent, the indomitable Neil Salkind, has been trying to find a publisher for it since last August. We have received many rejections, mostly on the grounds of “it’s too painful; it won’t find an audience.”


I have never believed that, and your response to “For Jessica” is my validation. People want to read the truth, even if it is raw and makes them cry.  They want to be moved, to feel that there is more to life than just another bathroom to clean or a new pair of shoes to buy.


That does not mean there is an instant book deal, however. (I’m being rejected at the same brisk pace as always.) (That’s the life of a working writer, so I’m used to it.) But my agent did say, “Make this into an e-book, and sell it on your website, so the people who want to read it can read it.”


A good guy, Neil.  So, that’s what I’ve done.  I’ve saved the manuscript as a pdf file, so, again, no bells and whistles.  I uploaded it to e-junkie.  Some of the proceeds will go to the Tuberous Sclerosis Alliance; the rest will help defray the expenses associated with Jessica’s hospital stay.

Here’s the link.



Thank you–all of you–for your warm thoughts, wishes, and prayers. (Hey, I may not believe in a supreme Deity, but that doesn’t mean One doesn’t believe in me.)

I will post here once we’re back home from the hospital.  I’m deeply grateful to all of you.






  1. Thank you for sharing your story. I'll be praying for YOU and Jessica on 8/10.

    Five years ago, my daughter had her first grand mal in the music library at her college. Her friends stood over and looked at her like someone had dropped a plate at a restaurant. My life has never been the same. She was a talented young musician, just a hair short of a child prodigy. I watched helplessly as her studies declined, her future dimmed, her friends deserted her, her professors mocked her, passed her over and attempted to kick her out of her major, her personality changed, her appearance changed, and doctors experimented with numerous anti-convulsive medications for her new diagnosis. While the meds controlled the seizures, they effected her memory, so college (which is hard) became agonizingly more so. Through hook and crook she's now graduated, but unemployed in her field of study.

    There is no history in my or my husband's family of epilepsy. The doctor said it was a "fluke" of nature. Heh.

    Kill ten men and Satan. Yeah, I know exactly how you feel.

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  4. Jennifer,

    I am so immensely touched and moved by your story. I know the exact article you're referring to, and as a hopeful future mother, I was so saddened to read it. Thank you for standing up for the all-encompassing journey, love, LIFE that is raising children, no matter what. I will be buying carnations on August 10th. And I will be sharing your story. Bless you and your daughter. <3

  5. I just added you to my blog roll you write amazingly and as a special ed teacher and a father your story touches me deeply. Thank you for sharing.

  6. Your honesty is beautiful and inspiring… Thank you for sharing Jessica's and your journey with the world… I appreciate it.

    I do think that book of your would sell… The world has become such a numb place… people need to feel again. I also think people need perspective on love… and with that, heartache. That life sucks… some of us have to fight for sanity daily, but the world still turns without a pause button.

    Thank You! You both are in my thoughts!

  7. I found this site by accident at lunchtime sitting at my desk in work. I couldnt stop the tears from coming and had to go to the bathroom to have a cry. Reading that, the world suddenly felt much smaller… I dont know where you are in the world but you could have been right there next to me.
    I cant say that i hope everything works out for you both, i don't know what that would be for you, so i'll simply say that i hope you get all that you want.
    I will also say that i will never meet you and Jessica , or hug you, or kiss you. But i love you both. People like you and jessica are like stars in the night sky make everything a little brighter for everyone while you are there..and people feel that loss then they dimm.

    Bless you and keep you both.

  8. Thank you so much for sharing your story. I am so very moved and touched.
    Academics have no business studying happiness. They can't even define it. They haven't been refined. There's no steel in them. You have been in the fire and know where that steel comes from.

  9. Prayers and best wishes for your family in the next couple of weeks. You're right, the world can be an amazing place. We're all the better for it when we can respond to people who can use a little support.

  10. I read your story and it made me cry in a good way. I have a 4 year old son with Down syndrome. He spent 3 of the first 6 months of his life in the hospital, had open heart surgery followed by quite a few unexpected complications at 5 months, and is known by name in the radiology, cardiology, gastroenterology and neurology departments at our local children's hospital. He didn't walk until he was 3, we are no where near potty trained, and while he understands most things, he can't really communicate yet. That's his medical history, but more importantly, he has a wonderful smile, loves Elmo and Blue's Clues (god help me…) and most days wants nothing more than to play on the swings.

    Your story made me cry because not everyone understands the constant worry, the isolation, and the desire to protect your child from the ignorance and cruelty in the world. We all need a reminder every now and then that we are not alone even though it may feel like it some days.

    I actually forwarded your story to a friend who has a 9 month old with Tuberous Sclerosis before I came back and read the July 27th entry that said Jessica shares the same condition. I hope she can draw strength from your strength and remember that she is not alone.

  11. Thank you for sharing your story with us and for expressing the many emotions we feel as parents. You and Jessica are beautiful together and I will wish on all the stars I see tonight for you both!

  12. i am in absolute awe of your strength & devotion to your daughter. i can not wait to read your book, your story is beautiful not tragic. thank you for sharing. i will be thinking of jessica.

  13. Your story and thoughts are amazing! Please write to me any time for a prayer! I will keep you and Jessica in my prayers.
    I have a son with Asperger's disorder. At the time he was diagnosed, Kaiser didn't treat it but they diagnosed it. It was hard to get the schools to admit that he had it-it wasn't widely recognized at that time, and certainly not caught at an early risk level. He is 22 now and doing much much better.
    Although I didn't have to go through surgeries, I went through so much agony and isolation and judgement. I constantly took him to Psychologist, Psychiatrists, Neurologists, Counselors, Therapies, Doctors, the Police, Mental Hospitals, and finally, to Residential Treatment for 4 years. I attended IEP's (in which I had to battle sometimes entire roomfuls of people with no help), TPR's, parent-teacher conferences, parent-principal conferences, as well as being on call to pick him up from school at any given time. Add to this parents who were contstantly angry that he had to be anywhere near their children, let alone in their child's class at school, waiting to corner me and verbally abuse me.

    None of his appointments were ever in my own city, so I always had to commute, dragging the other children along eventually. I couldn't work and my husband couldn't handle my son and was always pissed-I felt so alone.

    Caring for my son took a tremendous toll on my marraige, and on my ability to be fully present, at times, for my two younger children. Residential treatment for my son from ages 13-17 was the most painful decision I ever made, but I really got to take care of my girls, got a divorce, and participated fully in my son's treatment and counseling sessions-even though he was 40 min away (in good traffic) for the first two years, and 3 hours away (6 in Fri. rush-hour traffic) for the 2nd two years.

    He is doing better than I ever expected now. When he was younger, I lost friends, alienated acquaintences, had huge fallouts with my family, fell into deep depression, gaining a lot of weight and having health issues, and was at a place where I wasn't "tight" with God-I just believed everything turned to dust and was for nothing at that point in life (because of other circumstances than just my son's issues).

    After my divorce, my relationship with God is back in full swing, my son has been home for four years, has kept a job for over two of those years, and can take care of himself fully within a supportive environment. He makes friends, knows bus routes, and is pretty darn reciprocal to friends and family these days.

    There was hope for him and there is hope for your little girl! Please get it in your mind what you truly want for her, and start speaking it over her as if it were truth. This is not a cure-all, but it is a very effective practice.

    Meanwhile, may God richly bless you and keep you and Jessica.

  14. I was incredibly moved by "For Jessica". I have a special needs child, now 18 years old, and you have so perfectly expressed so many of the emotions that I have had. The part about taking a ladder and trying to put all the stars back up, however inexpertly or or incorrectly, but doing the best you can, really hit home for me. Thank you. I want to give my son the world and try to do the best I can.

    As for 'Welcome to Holland"… I've never been a big fan of that piece. While my son is not autistic, I like Laura Krueger Crawford's "Holland, Schmolland".

    Hugs, prayers, and good wishes for you and your daughter.

  15. What an amazingly strong woman you are. I have a child with seizures and your story is simply heart touching. Please know that you and Jessica are in my prayers and I will be thinking of you both as you come through your next battle!

  16. I can't even begin to imagine what you're going through, Jennifer.
    I don't pray because I am not that kind of religious. But there is a massive amount of good thoughts and wishes heading yours and Jessica's way, all the way from Sydney Australia.

  17. I am another "I thought I was the only…" and we're about to head back into the hospital with my 8 1/2 year old for something I thought was fixed…fixed many times over, but it hasn't been yet. Thank you. Thank you for sharing, thank you for understanding, and thank you for knowing me without knowing me.

  18. I am wiping away tears as I write this comment. My nine year old son has CP, shunted hydrocephalus, seizures, and will never walk. Yet when he wakes up each morning and tells me it is a "prettiful" day, I have the strength to face another day. Thank you for your story, and Jessica and your family will be in my prayers as she faces her surgery. God Bless!

  19. I wrote my book, got my rejections, and finally self-published on The book is "Perfectly Normal: A Mother's Memoir."

  20. Thank you for sharing your experience.
    I have a 6 y.o. son that is battling cancer and while everything is going well with him, the pace at which we have spent the last 12 months is slowing and I'm starting to realize what you described. Life is never going to be the same. It's nice to know that in reality, that is a very neutral statement. Your story is amazing and terrifying, yet you live life and love life and find the happiness. Thank you for showing me that it is a choice. One that I intend to make wisely!

  21. Thank you so much for sharing your story. You are both a gifted writer and a wonderful mother. I will be praying for your daughter and will continue to follow your blog.

  22. I read your post For Jessica after a twitter message that said: "This is probably the best blog post I have read. Ever." I do agree. It made me smile, it made me cry. Just like life in general. Your pen is just remarkable. And your story is so inspiring. I wish you and Jessica (and her father) all the best. Thank you!

  23. Thank you for your story. I agree that your book would sell – probably millions of copies. I don't have a personal story of a child with a disability, but your story and others like it make me endlessly grateful for the able child I have. Perspective is a wonderful thing – thank you again for improving mine. I'm also not religious, but I will be sending all my best thougts out to you and Jessica on the 10th. Now I'll go and follow the link to your e-book and good luck with the publishers!

  24. I am one of the tens of thousands who found you for the first time because of the Carnations post. I wish you the best of luck with the e-book!

  25. Every time I think Twitter is a ridiculous waste of time to keep up, someone posts something to prove me wrong. That's how I came to read your post "For Jessica". I am a mother of two (in mid-September they will be two years and six months old, respectively), and I know the article about happiness you referred to. Your piece was fantastic, making me cry, and so, so well-written. If there is an opportunity to buy an actual hold-in-your-hand book of your work, I would do so in a second. And I would tell the huge English-speaking parents' organization I'm a part of here in Paris to buy a copy, too. In fact, I'm going to post a link to your piece and a link to your e-book right after this.

    As I said, I live in Paris. If those stars align and you and your daughter are able to come here, there is a large group of people (parents) who would help you enjoy your time here in any way they can. For now, please know that you have moved someone (many someones, clearly!), and I sincerely wish you both nothing but the best.

    Thank you for this.

  26. You tell your agent, publishers, etc, that I said this (not that they care, but …): People want to read the raw, the naked, the real of life. People hunger for it. The problem is, they don't know it until they do it. But when they do, they are changed forever. Do not give up on The Real and the Raw… we need it as much as we need air.

  27. For Jessica was beautiful. But the thing that compelled me to comment was "it's too painful, it won't find an audience."

    Right. Because NO ONE read "A Child Called It." Or "When Rabbit Howls" or Angela's friggin' Ashes or any war memoir, ever, or any story, ever, about someone struggling with an illness or a disability or a really stupid legislature. Our world is absolutely, not at all full of people who are going through awful things, who look for books by other people who have been there first and, of course, a good book about a not-very-well-known disability/disease/whatever has never, ever provoked outpourings of activism from compassionate people and …*grumblegrumbleprofanitygrumble*

    WhatEVER, publishers. It's like it's their first day on the job, or something.

    Thank you for sharing your story. =)

  28. Your story is so moving, beautiful and raw, you're a wonderful writer and mother, and I cannot express how deeply moved I was when I read your story. Thank you for that. My dad has been hospitalized for the past few days because he had a congestive heart failure, he had a heart transplant seven years ago and he has always been sick as I was growing up. Being his daughter and dealing with a situation that is similar to yours but not is a story I struggle to write, but your story has inspired me to write mine in such a way and such a force I never thought I could be inspired by. And how you did it in 2nd-person was truly moving. Thank you and I am hoping for the best on August 10th.

    Sometimes we forget that there people in the universe that make this world infinitely better, and though there are only few, it is revitalizing to see the few instances of good when they happen. I wish I had the money to send your daughter carnations, but alas I am a starving college student who also likes to read a lot of books and dreams about Paris but will probably not be able to see it.

    Your line, "It means I don’t care that I’ve never seen Paris.” –> Just awesome. It hit me and I thank you for writing such a moving piece of your life.


  29. Dear Jennifer,

    I discovered your blog post through a friend of a friend on Facebook who, incidentally, doesn't have children. I don't have children either; I am not that brave.

    Despite the fact that we don't share the experience of child-rearing, let alone under supremely challenging conditions, your story about you and Jessica broke my heart wide open. I wept and felt very close to your spirits.

    It made me feel close to all of humanity for a precious while. (Which seems to me both more valuable than and paradoxically synonymous with happiness.)

    I wish you and Jessica both more life, as much as you can and wish to hold. I will be thinking about you both on August 10.

    Best warm wishes,


  30. Thank you for sharing your story and your beautiful daughter Jessica. And thank you for speaking out for all us parents who are walking this path of uncertainty.

    I will be thinking of you and your daughter next week as I continue my journey and represents those suffering from epilepsy as a new seizure med is introduced to the FDA.

  31. First time in a long time I've broken down in tears over an essay, and sent it to every writer I know. Beautiful.

  32. My Aunt raised her grandson. Joe has Cerebral Palsy. We lost mt Aunt five years ago. Joe now lives, in the only house he has ever had, with his birth mother. My Aunt showed me a lot about life, and when she got Non-Hodgkins Lymphoma, after years of Krone's, she taught me about dying. I thank whatever there is to thank for people like her and you.

  33. Thank you for writing this. You are a very talented writer. I wish I could do something to help you. Know there is love being sent your way from St.Paul MN!!!!

  34. quote "(Hey, I may not believe in a supreme Deity, but that doesn’t mean One doesn’t believe in me.)"

    — exactly true. And that he does is the part that matters.
    Lots of love to you and Jessica and her dad.

  35. Thank you for sharing Jessica's story with us. I can't imagine my life without my wonderful children and all of the joy and tears that go along with parenting. I will be sending "carnations" to you and Jessica over the coming days in the way of positive thoughts and energy.

  36. Thank you for sharing Jessica's story so far. I know that you do not believe, but I do, and I know that God believes in you. If He did not, He would not have given you this incredible voice for sharing your story and the story of others. I will be praying for Jessica, and for you.
    God Bless.

  37. Hi,
    I was so very touched by your story…someone made a comment before the link to "For Jessica" that I should get some Klenex ready, I wish I had listened. I wasn't going to write a comment or anything because I'm pretty terrible with words, but if it is one thing that I have leant in life it is that people don't care about that. They just like to hear you say something. To know you care. Thank you for writing your story. It has made me understand just some of the pain that my mother must have felt and still feels…her little brother was born with a severe heart defect and wasn't expected to live past 12. My mum was constantly thinking will he die today? I never knew him, though he managed to live to 22 years old. That was just one of the many heartbraking things she has had to face…
    So I just wanted you to know that I have been thinking and praying about you and Jessica every day since I read your story and I will continue to for as long as I am able. I wish I could do more for you!!!
    Keep writing, you are a truly gifted and God bless you and Jessica!

  38. Dear Jennifer,

    As many have already said, "Thank you". Thank you for posting Jessica's story to begin with, for updating us, and for letting us be able to read further into your life with this remarkable child! I am glad that you see all of the responses from readers as a means of support and are using them as a way to gather strength. That is what they are there for!

    Please know that as you approach Jessica's surgery that she, you, and her father will be prayed for by SO many! Reach out to those around you to help you through this; that is what they are there for!

    Once again, thank you for sharing your life and Jessica's life with us.

    LoriAnn Myers

  39. Today is August 9th and I know that Jessica is having her surgery tomorrow. I wanted you to know that I'm praying for her and you. I'm not a religious person, but I figure prayers can't hurt. Bless you both and know that many people the world over will be thinking of you tomorrow.

  40. Dear Jennifer

    It is the middle of August 10th here in Australia, and I have been thinking of you & Jessica all day…

    Just wanted to let you know that many people all around world are carrying you & your beautiful girl in their thoughts and hearts today.

    Will be checking back regularly to see if there is any news…

    Massive cyber-hugs, Susan

  41. I’m a late-comer to For Jessica, but so glad I got here before tomorrow. Your no-holds-barred piece of blogging brilliance is a post so honest and raw that it tears my guts out and gives me a whole new appreciation for my own life with my own special needs child.

    In my part of the world, Aug. 10 is just an hour away, so I …

    … Wish the surgeon sure and steady hands.

    … Offer energetic support to you while your daughter is in the operating room.

    … Of course, send Jessica healing energy and a boatload of virtual carnations.

    Peace and a speedy recovery,
    Michelle … where I have shared some tales of my son.

    p.s. I have a special needs mom friend who hates that "Welcome to Holland" poem and has always said, "I did NOT land in Holland. I landed in f*cking Iraq!"

  42. Thank you for your essay. I would reassemble the stars for you, at least once.

    I will send thoughts winging your way tomorrow. (I'm flying over most of the western half of the US, on a trip home to visit my father who no longer travels due to health issues, so maybe those thoughts will pass overhead in an airplane.)

  43. You are such a strong person. It's a breeze of light to know that there's people out there like you.

  44. We are one hour into August 10 and I have just finished reading "For Jessica". My heart is with you today. You have carried life and love to depths and heights beyond the strength to follow… but I will do my best.

  45. So… today is Jessica's surgery, right?
    I wish you, both of you, all the best. May all of the world's luck be on your side this time.

    I think of the little girl and I hope she'll be fine again some day. Some day soon.
    May all of your pain and worries come to peace.

    Love from Austria…

  46. Dear Jessica,

    I am thinking of you (and the rest of your family) today. I hope the surgery goes as well as it possibly can, that all the nurses are kind and give out candy, that you have trouble finding your bed for all of the carnations, that Mario Batali is doing a stint as head chef in the hospital's dining facility, and that you'll be home again before you know it!

    Fingers, toes, etc… crossed,

  47. I thank God I stumbled upon your previous post (a link to it on one of the blogs I read). I've gone through nothing comparable to your pains, yet I think I understand what you mean. Happiness is not about being smiling and content, happiness is about being ALIVE (not just living, but really ALIVE). A full life will have suffering, sometimes an awful, inimaginable lot of it. "Winning", in this game that is life, is not about not having any suffering, it's about being alive even while suffering. (Probably the closest experience I had with this was in the worst phase of going through depression, when I begged my doctor not to give me medication to dull the pain, but to feel it again, because I wasn't feeling anything at all and this was worse than being in deep spiritual pain. I was an emotional zombie while non-medicated, and it may seem odd, but I welcomed the anxiety attacks and nightmares that came when I started meds. They meant I was able to feel again). You are an inspiration, and what you shared about your daughter made me love her a bit already. You both are in my prayers. And yes, the Deity in who I believe will keep you both in His heart even if you don't believe in Him 😉

    Love, love, love, and hope that I will buy your ebook as soon as my budget gets more stable (work troubles).

  48. Oh, and also, I know (as an ex-academic myself) tons of academics who have gone through deep suffering in their life (sudden loss of a child, suicide attempts, deep abuse in childhood, children with physical or mental health problems, you name it) and would not agree with the academic who did the study. Children don't bring happiness because they make us more content, they bring happiness because they make us more alive, and because they are a treasure (that can be painful and bring suffering, but a treasure indeed). I don't have children yet, and I do realize that they open the door to a raw suffering unlike anything I have ever felt, but I want to have children. Even knowing that anything can happen.

  49. Praying for you all today. Know that you are in the thoughts of so many people who are pulling for you all. I've had this date etched in my mind since I first read the post a few weeks ago. Sending strength to Jessica…

  50. A friend gave me a write up with your essay from the Kansas Alumni, as he is one too.
    As the mother of 2 handicapped daughters, and the aunt of another, I would like to thank you sincerely for your poignant descriptions of the experiences and feelings that have gone clanging around inside and through me for the last 27 years. And yes, it is a fraternity/sorority that one has to pay deep dues to enter. We should have a secret handshake.

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